Veronica White (Ronny)

Ronny: the last page

2011-10-20T18:05:00.003+01:00

Since writing her last blog on the 6th October, mum has passed peacefully away. Before she did, she asked me to write her blog so everybody would know the last page in her journey.

In the 10 days since her last blog, mum started to feel more tired and breathless, she would spend more time resting and dad would help her to get up and down the stairs. We all put this down to the Chemo, as it is a tough treatment on the body, and encouraged her to rest as much as she needed. During this time, mum began to get very constipated. This constipation carried on, despite her taking Movicol and attempting to relieve the symptoms. As a result, mum found it difficult to eat anything, as she already felt full, and other than the odd smoothie or yoghurt here and there, she stopped eating altogether.

On Thursday, oxygen tanks were brought into the house, one downstairs and one by mum and dad’s bed, so that she could take in extra oxygen before negotiating the stairs, which eased mums breathlessness a lot.

On Saturday 15th October, dad and Stephen took mum into the Hospice so they could check her over and try to relieve the constipation. At this point, we were all very concerned that she hadn’t eaten in a few days, and the hospice is a far nicer environment than the hospital. Dr Katie Taylor checked mum over and suggested that it could be the chemo that was making mum constipated. She didn’t think that it was the meso. Mum went home that afternoon with dad and slept pretty much on and off until the following morning.

On Sunday, we were at home with mum while dad went to church. It was clear that we needed to take mum back to the hospice so they could try and encourage her to eat, we thought they may be able to put her on a drip or fluids of some kind. When dad got back from church, we all went with mum to the hospice where she was seen by Dr Katie Taylor again. Once Dr Katie had checked on mum, she came to speak to us. She told us that the disease had progressed and that mums side effects were more likely to be down to this than the chemo. She told us that they would not be able to put mum on fluids as her body would reject them, and if she was able to digest them she would have been eating orally. She tried to prepare us for the fact that mum was in the last stage of her illness, and that she would not be receiving anymore treatments, only being made more comfortable.

With the whole family there that night, we all spent time with mum, talking to her, telling her how much we love her and holding her hands. She told all of us she loves us and we went home that night. The next morning, we all went back to the hospice and spent time with mum again. We were told she had deteriorated since coming into the hospice, and that she probably only had 2 – 3 days left.

In all honesty, we were shocked and horrified as we just hadn’t taken in how serious it had got. We had all just got back to mum and dad’s house when the hospice rang to tell dad to come back quickly as mum was weakening rapidly. It was too late by the time we got there, the two nurses that were with her told us she died very peacefully, she simply closed her eyes…

We all got to see mum, and they were right, she did look very calm and peaceful.

Mum did not suffer at the end, something I know she worried about, and I’m sure occupies a lot of peoples minds when they know they have a terminal illness. She gave us every bit of fight she had, and I can honestly say that being able to say she is my mum, makes me the proudest daughter in the world. Her bravery, compassion and above all her love for everyone amazed me every day. She told me that she couldn’t have done this without dad, he gave her strength. Me and my brothers are so proud of our parents and are so thankful for the love they have always given us.

Mum and Dad, Mallorca 2009

We know this blog has touched thousands of peoples lives, and we hope that mum has given lots of people the courage to keep fighting. New trials and treatments are being developed all the time, and we all hope that soon this disease can be cured. We want to thank you all from the bottom of our hearts for the love and support you have all given mum, and for the words of love and comfort that you have been sending dad, which have been a huge support for him to read at this time. Mum is an inspiration to many, and she always will be to us.

A special thank you to all the staff, nurses and doctors at Maidstone Oncology, The Heart of Kent Hospice and especially Sandra Wakelin.

Back on chemotherapy.

2011-10-06T16:19:00.003+01:00

After a pretty gutty week I recovered enough for my Oncologist to put me back onto the chemo program, this was such a relief as I feared he would think me too weak. I walked into his office with my head up, shoulders back and a big grin in my face to convince him I was OK. I was able to explain my previous poor week’s condition on the cough, which the anti-biotic seems to have pretty much cleared up. He compared me to how I was when he gave me the 4 – 8 month prognosis and said I seemed so much better, which was very encouraging. He also seemed encouraged that I can feel a lessening of the pressure in my chest, which may be due to the chemo working, or the cough being helped. He has agreed to delay my CT scan for two weeks, to get a better picture of what is going on after three chemo cycles, instead of the two he originally booked for. I was going to have the scan Friday 7th October, but will now wait for the new date.

I am supposed to be going to Germany to see the Prof. on 28th October, but I think I will delay or postpone it until after the chemotherapy finishes for the mesothelioma. I didn’t realise the embolisation stayed in place for two weeks and I don’t want to lessen the effectiveness of the chemotherapy. I will make a decision once I have the final CT scan results.

I am not feeling too bad with the chemo at the moment; the exhaustion and tiredness tend to kick in once I stop the steroids after three days, then I have four days to get fit to take the second tablet of the third cycle.

The main problem I am having is in breathing, I get puffed doing the slightest thing and have to rest for five minutes if I need to get up the stairs. I have tried steroid inhalers but they take my voice away, then I sound pathetic and the Doctors think I am failing again. A catch 22 situation,

We have lost yet another meso warrior this week, and with another in her final days. It is such a waste of innocent lives all for money and greed by the perpetuators of the asbestos industry. It is still not banned in the USA; Canada and Russia are producing tons of the stuff, and third world and developing countries are buying it up as if there is no tomorrow. When will the madness end?

I missed the Uk Mesothelioma Conference where I would have met up with many of my fellow meso warriors and learned of new developments in the pipeline, which are few and far between. They all had a good time and related the new information to me. It seems we don’t even have a mesothelioma Medical Trial database in this country, and there are only a few trials happening here too. It seems we are lagging the rest of the world in this respect.

On a positive note, although two months into my prognosis, I feel no worse so can only hope the goal post have changed a bit, and I may yet defy the odds, as I hope my feloow sufferes will too.

Thank you all so much for the love and support, it really does help.

Chemo delayed.

2011-09-30T16:49:00.005+01:00

I have had my two doses of Venorelbine chemo, but I am not recovering so quickly this time. They did increase the dose by 25% and this seems to have made a big difference. It has left me weak and exhausted, sleeping a lot and a bit emotional. I was in this state when I went to the hospital to see the chemo nurse to check I was OK to continue the chem. Although my bloods were good, as I was quite run down, and even wretched while I was with her, she declined to give me the chemo and said to put it off for a week, then see the Oncologist. He is the only person who can stop the course of chemo which worries me a bit if I don’t feel any better. I will go in with a big smile on my face and be as upbeat as possible to persuade him I am fit enough. However, I am improving each day, so fingers crossed.

My persistent cough has not gone so my G.P gave me some antibiotics, which I find makes me sick, this is why I wretched, which happened when with the chemo nurse, confirming her position about my fitness for the chemo. I now take an ant sickness pill at the same time, which seems to be helping, but the cough is not going, so it wasn't a chest infection. My GP thought it wasn't but said the antibiotics won't do me any harm, so worth a try. I have to take the whole course so have to keep taking them until Sunday.

A nurse friend suggested taking Tramacet for the pain and I have some from a previous visit to the Doctor. The packet was full so I had not needed to use any. Within hours of taking the Tramacet I was being very sick and couldn't’t control it with the meds I had. It got so bad we had to call in the Doctor on call and she gave me an injection for the sickness. This too didn’t work, so I went to bed, as lying down seemed to help. I realised that I was allergic to Tramacet as the next morning the sickness had gone. I seem to be allergic to so many helpful drugs, which is a nuisance.

I have had some serous pain and the Hospice Doctor has given me Oxy-norm which works, but leaves me feeling very drowsy. Medicines are all about swings and roundabout, doing some good but giving harsh side effects.

I am now hoping upon hope the oncologist doesn’t take me off the chemo, as this is my last chance of any treatment. He might reduce the dose which would be a disappointment as I want the chemo to work as effectively as possible.

On a brighter note, my little sister if off to Italy, for a couple of weeks with her son, his wife and two year old daughter, but I think they are very anxious for her. I must say I am a bit concerned too as she can’t get insurance and may need treatment whilst she is there. Also her red blood cell count is down to eight, normal is eleven to thirteen. She is to have a transfusion, but not until she returns. However, she is a very brave lady and I admire her courage to make the best of her shortened life.

My picture is of our Grandson Joseph at his first day at school. He looks so grown up but is only four years and two months old, but he is enjoying going and is always happy to get there, so this is good. He went to nursery school so he is used to a long day without Mum and Dad, I think this helped. Also he has started school with a good friend of his and also knows some of the other children from nursery. He certainly looks happy enough.

Another trip to Germany.

2011-09-13T11:43:00.000+01:00

The trip to Germany was very tiring, especially as I only had the chemotherapy the day before. The Prof. says that the bit of mesothelioma he treated is ‘all but stable’, so this is good news. It means the cancer is wounded and will therefore hopefully react more to the continuing chemotherapy. He treated another area this time and says he will do one more treatment too. This is what he said last time we went to see him.

We went to see my little sister on Sunday. I was feeling quite rough but really wanted to see her. I was surprised that she was looking much better than I was expecting. It turns out that she had a calcium build up in her blood that was making her incoherent. It was caused by the bone tumours leeching out the calcium. She had to go into hospital to have it all flushed out from her blood and she feels much better for it. However, it is something that should have been spotted days earlier.

I was completely exhausted yesterday and spent most of the day sleeping on and off. Germany and my sister’s visit took it out of me more than I realised.

I had my blood tests done yesterday to see if they were good enough for me to continue with the second chemo tablet of this second session. I have had the phone call to say I can go ahead and take the chemotherapy, so good news.

I can feel tightness in my chest where the tumours are and hope this is because of damage to the cancer by the chemotherapy drugs. I am also very breathless; this seems to have worsened with the chemotherapy.

I am now over a month into my four to eight month prognosis and hope the treatment is extending this for me. My eGFR seems to be holding out at about twenty four and I hope upon hope that it improves to thirty, as I will then be eligible to enter drug trials and there are a few showing some promise.

Another Meso warrior has just passed peacefully away and I feel for her family who have fought the fight with her. She was very brave and fought right to the end, as I intend to do.

I thank you all for the tremendous support you are giving my family and me.

After the first chemotherapy cycle.

2011-08-31T12:18:00.006+01:00

Well, one month of my 4, 6,8 month prognosis has now gone and I don’t feel any worse than I did then. In fact I have more energy and am more comfortable. Whether this is down to the Professor’s treatment or not I don’t know. I certainly look better than I did a month ago. I am seeing the Professor again next week for another embolisation.

After the first complete cycle of chemo I have had a few days of feeling quite bad, but am beginning to feel better now. I have a week off chemotherapy now to gather my strength and enjoy myself.

The first three days after taking the chemo drug are not too bad because I am high on the steroids they give, but day’s four to six can be quite bad, in as much as I am totally exhausted, and my head is in a continual fog. It is quite hard to explain exactly how I feel then. I do get quite emotional at this time too.

This chemo drug, Vinorelbine, doesn’t seem to make me sick, which is a huge bonus. It means I can do other things when I feel like it instead of being tied to home. I try to keep busy the first three days as this helps to distract from the treatment and I have the energy, courtesy of the steroids.

The metallic salty taste in my mouth is still there, it comes on day two of treatment. After the first tablet it went in five days, but has hung around after the second, for longer. It makes food a bit tasteless, but not impossible to eat. The steroids also improve the appetite considerably so I indulge to boost my weight for the time when eating is more difficult.

Our Hospice Nurse Sandra asked my surgeon, Karen Harrison-Phipps, about the possibility of more surgery. Karen looked at my scans and said that the mesothelioma was covering vital arteries and it would be far too dangerous to operate. She likened it to a bucket of dried cement with arteries running through and trying to chip away blindly without damaging the blood vessels. It would be an impossible job. It was worth asking the question though.

I am thinking a lot about other meso warriors fighting at various stages of the disease. We get so much support from everyone and it really helps us to fight, even though we know there is no cure and it is eventually a losing battle. I was shocked to hear that a young American, 23 years old, has contracted the disease and can’t believe how cruel this is for him and his family.

My husband Rob has been such a tower of strength, without his support and help this fight would be so much harder, so I am in awe of my friend Debbie Brewer and others who are fighting this on their own, they are so brave.

I hope my blog is helpful to anyone fighting meso, it seems that it is read in over fifty countries.
How amazing, the power of the internet.

All the positivity of everyone makes me feel I am not fighting this alone, so thank you so much for it.

Today’s picture is of Rob and grandson Joe taken about a year ago, they look so happy.

Second part of first chemo session.

2011-08-23T16:24:00.006+01:00

I had my blood test yesterday and had to go to the Hospital today for a review of the chemo side effects' and to find out if I will be able to continue with the second dose of the first chemotherapy session. The news was good. My bloods were OK and my liver function had improved. I didn’t know my liver function was compromised until today.

The chemotherapy drug Vinorelbine is metabolised through the liver so the function needs to be good to clear it out of my system when it has done its work.

I will take the chemo drug tomorrow and hope for the best.

Having no sickness, so far, is a huge bonus for me after months and months of continually being sick. I have to take a strong anti sickness pill half an hour before the chemo drug to stop my stomach rejecting it, so will start early in the morning.

I do feel tightness in my chest where I have the cancer and hope this means that 'something' is happening. I have all my fingers and toes crossed that my bloods continue to be fine so I can continue with the therapy. Side effects so far seem to be bearable, just a fuzzy head, a bit shaky, emotional and breathlessness; all of which I can manage, and they are not stopping me from carrying on with my life as normal. I try to get a walk each day and feel better for it.

We are off to Germany again in two weeks for another embolisation which, I hope, will further damage the tumours. This will probably be my last visit there unless something dramatic happened to improve things for me.

We have had a wonderful week and weekend. It was our 36th wedding anniversary and our children have been amazing. We were given a beautiful painted picture of Rob and I at our wedding, from Emily and Pete; a lovely lunch in Christopher and Amy’s garden, and a beautiful Italian Sunday meal with Stephen and Hannah in the Terracotta Restaurant, Cranbrook. Our grandson, Joseph, ate a huge plate of mussels and he is only four years old. He has mature taste buds, he loves garlic bread too.

The picture today is of Joseph concentrating on getting the mussels out using an empty shell. He was quite skillful, bless him.

First day of chemotherapy.

2011-08-17T12:13:00.002+01:00

After a short hiccup I have taken my first Vinorelbine chemotherapy capsule. I have been on a low dose steroid tablet for three weeks and was told to take omeprazole half an hour before the steroid to protect the stomach. Whilst on the chemo drug I have to take three steroid tablets over the course of the day. I duly took the omeprazole and steroid whilst waiting for Maidstone Hospital Oncology pharmacy to telephone me to say if my blood test yesterday was good enough to begin the chemo regime. Whilst waiting for the call I read the leaflet that came with the chemo drug only for it to say ‘don’t take omeprazole with it. I had to call the chemo 24hour helpline nurse to ask what I should do. This resulted in her having to call Oncology pharmacy, them to call in another chemo nurse and her to call the manufacturer. It seems know one knew. The Manufacturer said they thought it was a problem in the early days but have now excluded it so I would be okay to start the drug.

This was a relief as I had geared myself up to starting it today.
I had to take a strong ant sickness tablet, Ondansetron 8 mg, half an hour before the chemo drug and metocopramide anti sickness tablets for four days, then as and when required.

Two hours later and I feel fine and I am going ten pin bowling with a friend this afternoon. So, fingers crossed I don’t get nauseous.

The side effects can be blood deterioration, nausea, tingling hands and feet, bruising or bleeding, sore mouth, constipation or diarrhoea, anaemia, lowered resistance to infection, tiredness, some hair loss and exhaustion. Some people get no side effects others get a few and others get a lot. Fingers crossed I get as few as possible. At least I feel that I am doing something positive to help combat this mesothelioma.

Next phase, Vinorelbine chemotherapy.

2011-08-16T17:47:00.002+01:00

I have seen my Oncologist today. The radiation blood test I had for the ADAM trial is better than I thought but not good enough for the trial. I was expecting this and was not surprised, and had decided any way, that the trial is just that, a trial and not yet proved. I therefore favoured the Vinorelbine chemotherapy course as, although only one digit chance, i.e. less than 10% that was better than no chance.

They were going to put me on the chemo drug today but decided that I had better have a proper blood count first as the chemo will effect my bloods. They wanted me to go back to hospital again tomorrow to pick up the medicines, but I persuaded them to let me have them today and they will telephone me tomorrow morning to give me the go ahead, or not. My blood count has been a bit low but should be alright, so I am not expecting a problem. Watch this space!

I have lately been getting more uncomfortable, particularly in my back so I was very keen to get started as soon as possible, so it everything is working out well.

I am going to feel pretty rough with the treatment, but I am now through month one of my four month prognoses so can’t wait to get started with the chemo.

I need to take one capsule tomorrow, then one on day eight, then a week’s break. The cycle is three weeks and my Oncologist is talking about 4 – 6 cycles if it is working. He will x-ray and monitor me and then give a CT scan after two or three cycles. I will be keeping everything crossed for a positive outcome. At least I am still fighting and feeling positive for now.

My amazing MacMillan nurse is going to ask my Surgeon Karen Harrison-Phipps about the possibility of more de-bulking surgery. I asked, when Karen operated on me in 2008 what the possibility of more surgery was and she said’ Never say never’ so I thought it was worth asking the question. It is not usual in this country to do more surgery but they do in the USA, with some positive results too.

It is our 36th wedding anniversary today and we are going out for a nice meal this evening. Let’s hope I am still around for our 37th. I will jolly well do my best to be, prognosis or not.

I have been thinking and worrying about my fellow Meso warriors who are also going through this dreadful experience. I wish them all luck and good results.

Thank you all so much for your best wishes and positive comments; they are so welcome for us all. I really do have an army of supporters around me!

An outside chance in Germany

2011-08-07T11:50:00.008+01:00

I had disappointing, but not totally unexpected, news from the Prof. He said he has only given me embolisation, without any chemo drugs because of my kidneys. He says he is willing to do one moretreatment, to make me more comfortable. He is not now talking about being able to ‘help’, only make me 'more comfortable'.

My oncologist has offered me Vinorelbine chemo therapy, as it will not damage my kidneys further, and I will know if it has had any effect in two months. But he thinks it will only give me a one digit chance of shrinking the tumours. My problem seems to be around the central heart area where it is aggressive and threatening the heart. I think I will give it a try and hope the emobolisation has weakened the tumour enough to give the drug a fair chance to work better.

I have contacted the Prof. since my return to the UK and asked him if he thinks another embolisation and me taking Vinorelbine would give me some positive benefit. He says yes, and vinorelbine is a good idea. He replies almost instantly, which is really good.

I realise this is now the end game, but whilst there is fight in me I won’t give up. My family are all behind me in this too.

I met up in Germany with Debbie Brewer and a new meso warrior called Richard. Debbie has been told her tumours have shrunk by 2 – 3 %. This is good news to hear and took the sting out of the tail for me.

Thank you all so much for your kind support; it makes me feel I have an army on my side! In all of this I have made some very good and kind friends.

Here is a picture of Alison, Richard, Debbie, Myself and my darling Rob taken at the station the day before our treatments.

Just a short note.

2011-07-30T17:18:00.002+01:00

Well, sod it, I am not giving up! I have been in contact with Professor Vogl who says he is willing to try and help, so we are going to Germany on the 4th August for a CT scan and treatment on the 5th. I have absolutely nothing to lose by trying this except money. I will still hopefully have the option of the chemo with one digit chance of success if it doesn’t work. I would even prefer to be on dialysis and still alive, providing I have some quality of life.

Thank you all so much for all your kind messages, they do help a lot.

2011-07-27T13:01:00.002+01:00

Well, the time has come. My Oncologist says that I am in a dangerous phase, a euphemism for ‘final stage’. He says I have just 4 – 8 months to live and that he doesn’t recommend me going onto chemo as he thinks I am so weak that the side effects will outweigh the benefits, if any. He says the chance of chemo working is just one digit. He says there is the Adams trial so I will find out more about it. He has given me steroids to make me stronger and will see me in a week and will talk about chemo then. This has been a big shock to us as my last appointment said I was pretty stable, now he says it is growing aggressively and has penetrated my abdomen too.
Not much else to say other than I am allergic to quinine and have a horrendously itchy allergy rash, which I could do without at the moment.

I am sorry for the bad news, but although we knew it was just a matter of time, it still comes as a shock.

Race for life 2011

2011-07-10T18:03:00.006+01:00

Today I completed the Cancer Research Race for life. I was in a team of eleven lovely ladies and one dog, Mabel, we have so far raised two thousand pounds and still counting. If you were considering sponsoring us here is the link www.raceforlifesponsorme.org/theperfectfriends.

I walked about three quarters of the race but had to resort to the wheelchair for three hilly bits, where my daughter Emily, Georgie, Anne and Amy took turns in pushing. We finished in about an hour and a quarter and all crossed the finish in a solid line, arms linked, to cheers and claps from the wonderful spectators.

I was dreading this race as the date got nearer as my breathing has deteriorated somewhat in the last few weeks, so it was a great relief to be able to finish; and we were NOT last over the line.

We had a good holiday in Devon last week and were able to meet up with the wonderful Debbie Brewer, who came up by train all the way from Plymouth. It was so lovely to meet up and chat, plus Debbie took lots of photos. We all went to lunch in the famed River Cottage food canteen. It was very rustic, boarding on scruffy, and the food was just OK. All the hype about it on TV lead us to expect great things, and we had to queue to eat there!

I have had my CT scan moved forward to next week, due to decreased breathing problems, and I will see my Oncologist two weeks later. I hope the cancer has not got suddenly hyperactive.

Today’s picture is of the whole ‘Perfect Friends’ race for life team, taken today, just before we crossed the finish line. Thank you ladies for entering the race with me, and for supporting me all the way around the course.
(Picture courtesy of Chris White)

June 2011 appointments

2011-06-28T11:31:00.000+01:00

Things have been quieter for me for a bit now. I have seen my Radiologist, Tim Sevitt, who is happy with the treatment he gave me. The lumps in my back seem harder but he says he thinks it is scaring; hmm, not so sure. Also the lump in my side is about the same size so he says he will leave my appointment open for my Oncologist to sort out.

My blood test have not changed much, my eGFR is still 19, and will probably not recover any more than that as it has now been six months at this level. This means I cannot enter any drug trials. I just hope some trials are successful and I can get treatment once they are proved, if I live that long.

I have the Race for Life in two weeks and not really looking forward to it as my breathing has got worse. Still we are taking a wheelchair just in case I get into difficulties and the girls have said they are happy to push me if necessary. We are having a short break first so I will be as fit as possible for the race. If you are thinking of sponsoring us in the race here is the link:- http://www.raceforlifesponsorme.org/theperfectfriends. (Just copy and paste into your browser.)

May appointments 2011

2011-05-29T16:58:00.003+01:00

Saw the Kidney consultant on Friday and he tells me my kidneys may not improve very much more which means I won’t be able to participate in any medical trials. However, he has put me on bicarbonate of soda capsules as they neutralise the acids in the blood which often helps the kidneys. He doesn’t want to see me for 2 – 3 months, so is not very worried about me, which is good. My eGFR went up from 16 to 18, a very slight improvement.

The Radiotherapist thinks the new lumps in my side may not be meosothelioma, but will keep a close eye on me and see me again in four weeks. I think the lumps are mesothelioma as they feel exactly the same as the ones on my back. The radiotherapy doesn’t seem to have shrunk the lumps, but hopefully has put the brakes on them for a while. The radiotherapist says he can treat them again but not yet.

We have booked a few days holiday in Devon early July and will try and get some short breaks in during this period of no treatment.

I feel very sad for a warrior who has passed away, she was a lovely person and I met her in October at the Mesothelioma UK conference. I send my condolences to her family.

There was a local mesothelioma conference in Maidstone last week where I met Mavis, who has meso too. It is lovely to put faces to names.

My lovely little Sister has decided not to have aggressive chemo as it won’t prolong her life by much and feels that quality of life is better than feeling ill doing chemo. She is very brave and we all respect her decision, hard though it is.

My photo today is of young Joseph, our grandson, made up as Spiderman. He loves to dress up.

Not good news.

2011-05-14T16:37:00.002+01:00

Just a short blog as the news is not good.

Not a good day yesterday, my eGFR has gone down yet again to 16 and my creatinine up to 265. This is bad news because it means my kidneys are struggling again and going back into kidney failure. I am so disappointed.

Also my poor sister’s news is not good, her cancer has spread to her pancreas now and her prognosis is very poor. This has upset us all and we are all routing for her. She can go on a different chemo, as the one she was one had stopped working. Firstly she has to get fitter which may take a couple of weeks. Her bloods dropped right down so she had to have a 6 hour transfusion yesterday.

My sister in law is now home recovering from a breast cancer operation and is feeling quite bright. I was hoping to go and see her today but am too emotional with my sister’s news. We are going to see my sister tomorrow though.

I suppose as we are all living longer these other things will start to take over.

Wow, I wasn't expecting this.

2011-05-10T16:19:00.001+01:00

Well, I wasn’t expecting such good news. Most of my mesothelioma hasn’t grown and the rest has grown but only a small amount in six months. This means the Prof. has slowed everything right down and done a fantastic job. Therefore I do not need to go on any chemotherapy for the time being, which means I will be as fit as is possible for the Cancer research Race for Life in July! It also means we can think of a little holiday again. All in all this is great news.

I will have another scan in three months but can call the Oncologist and my wonderful nurse meantime if I am worried about progression or in pain.

The sickness is now properly controlled with medication, and my breathing with Seritide spray, so all in all an improved quality of life at the moment.

My sister is having a really rough time and has had to go back on steroids as she is virtually unable to walk. She is having such a bad time but is a real fighter. I have such admiration for her and hope to see her in a few days if she is up to a visit.

I am ten pin bowling again tonight in the league for the first time in nearly six months,; I will be bad but enthusiastic, but my team are very, very understanding. We were bottom of the league last season, so we hope to do better this time.

My photo today is of my darling grandson Jo, taken a few months ago, I think.

And on and on......

2011-05-03T15:23:00.006+01:00

I had my CT scan the following day in the end so not too long a delay and the results will be in time for my oncology appointment with Dr. Shah on the 10th May. I have also had the three radiotherapy treatments and have noticed that the lump in my back appears to have shrunk, which is great.

I am seriously thinking of delaying my chemo start for a couple of months so I will feel better to do the Race for Life for Cancer research in July and will feel fitter, the better to handle the side effects. It all depends on how the CT scan reads, if it shows I am still stable I will delay, but if it shows progression I will start straight away and struggle more with the race. After all, I want to be here next year to do the race again. I have done a race for each of the three years I have survived this devastating disease, and intend to do a few more races yet.

My poor sister is still suffering the results of all the steroids she has had to endure. She is unable to walk so is very much housebound for the time being. It is her birthday this week, another milestone for her cancer too. I have given her a voucher for the health suite she likes to use as their massages help her feel a bit better.

I landed up in hospital yet again, this time because my vomit was black (sorry to the squeamish). It seems I have had a stomach bleed, but my bloods are no worse so they think and hope it was a one off. Meanwhile my blood pressure has gone way up high and I need to get it sorted, if I can get a doctor’s appointment, which after 50 phone calls I have been unable to do.

We had our beautiful grandson Joseph for the afternoon on Monday and we had a wonderful time walking, eating icecream and playing poo sticks off the bridges.

This is Joseph (in blue) enthralled watching a show at his nursery school.

A Set Back

2011-04-28T12:25:00.001+01:00

More bad news, I have been quite sick lately ins spite of anti-sickness tablets, this is because my eGFR has gone down quite low again to 18, and my creatinine levels have gone up to 232. This is not good. I am also quite anaemic too.

To top it all, I have just had a call from the hospital to tell me my CT Scan has been cancelled because the machine has broken down. They do not know when they will make another appointment.

On the positive side the team for the Race for life for cancer research has reached ten in number and we have already raised over £900.00. Here is the link if you would like to sponsor us. http://www.raceforlifesponsorme.org/theperfectfriends

I can’t say I am excited about the royal wedding, but we are going to the street party hog roast. This gives us the chance to talk to lots of friends and neighbours, so will be fun.

2011-04-22T18:35:00.002+01:00

My blood test results show an improvement in my kidney function, It is still too low but moving slowly in the right direction. I had my third radiotherapy treatment yesterday and although a little sore, no other side effects, so all good.

I will probably go on chemo in a couple of weeks but am enjoying feeling so much better at last. The sunshine is also a real boost to my well being.

The Cancer Research Race for Life team has now grown to nine people, maybe even a tenth, This will be the biggest team I have managed to put together since I started doing the race three years ago. My lovely sister is too ill to run this year but has a promise of a place on the team next year when I know she will have conquered her cancer. I thank her for running with us the last two years.

We intend to try and beat last years race target of £4000.00, but it is proving much more difficult this year as people are very worried about their jobs and finances, so I thank everyone who has, or will sponsor us this year.

Long may this wonderful weather continue as it really lifts every one's spirit.

A dilemma

2011-04-15T19:07:00.003+01:00

Well, I have a decision to make. If I go on Vineralbine chemo, I will be exempt from entering the ADAM trial as it is for first and second line patients only, The Vineralbine will be my second line. There is no guarantee I would be accepted for the ADAM trial as they have to check my histology to see if my mesothelioma has the the right makeup. Then I could be on the control end of the trial as it is a stage two trial, whereas the Vineralbine has shown success for fifteen to nineteen percent of meso sufferers. I suppose the Vineralbine has some chance, however small. Mr Steele, my Oncologist suggests I should go with the Vineralbine and I may be able to IPM chemo later if my kidneys recover enough.

I had another blood test today and will get the results on Tuesday. They will show how my kidneys are doing and my red blood count level. I start my radiotherapy treatment next week, from Monday to Thursday and won’t need to make a definite decision until May the 10th about the chemo. I will have to give it some thought.

On a very positive note, I am feeling better that I have for about eight month’s and this makes me and my family very happy. I still have to take anti-sickness tablets, but life is now more acceptable.

We pick up our new Ford Fiesta on Monday and this will cheer Rob up as it is his first brand new car.

Radiotherapy appointment at last.

2011-04-08T17:57:00.004+01:00

I have finally got my fist appointment with the radiotherapy consultant, it is next wednesday. I see him first, and then I have to make another appointment to get measured for the treatment, then another appointment to start the treatment. I don’t know how may sessions I will need, I guess the consultant will tell me when I see him.

My eGFR has gone down a bit and creatinine levels up a bit, and I will have another blood test on the 15th April when I hope the levels have improved. I have to say I am feeling better than I have for some months, so that is positive.

I went to Brighton see my Sister, Dawn, who has kidney cancer with metastasis in her brain, lungs and bones. She didn’t look at all well but remains cheerful. The chemo and radiation has produced some promising results but she is suffering pretty horrible side effects. She is one very brave lady.

A slight set back.

2011-04-05T10:35:00.003+01:00

This week I have a slight setback, my eGFR has gone down from 21 to 10 and my creatinine level up from 203 to 227. This means my kidneys have stopped improving. I have certainly been drinking more tea than water and think perhaps I need to reverse that.

I am still waiting for a radiotherapy appointment and it has been a week, I thought this was meant to be urgent. If I don’t get an appointment date today I will get onto my lovely McMillan nurse Sandra Wakeling, who will sort it out for me. I was being extremely sick yesterday evening and Rob called NHS Direct who kept him on the phone for half an hour before saying he should call the on-call local doctor. This he did and they said a doctor would phone to say when he was coming out. He called ten minutes later and said he had two calls to make first. Three hours later, at 2.30 in the morning, Rob rang to say we needed to go to bed so we cancelled the Doctor. I had found that laying down on the settee stopped my sickness. We were hoping to get an anti-sickness injection as I couldn’t keep down tablets.

This morning I was able to take a tablet, so fingers crossed I will not be sick so much today.

My mesothelioma is on the move again.

2011-03-30T21:19:00.029+01:00

My mesothelioma is again on the move. A lump has appeared on my back below the operation scar and my GP said it is likely to be mesothelioma. .
I rang my oncologist straight away and got an appointment for the next day, which impressed me. He confirmed my GP's diagnosis and is sending me for radiotherapy, then a CT scan with the view to putting me on Vinoralbine chemotherapy in six weeks time.

This was quite a blow to me as I was only told at the end of February that my mesothelioma was stable. At least this chemotherapy is one that I can tolerate with impaired kidneys, but the side effects are likely to be as bad as my first chemotherapy. I just hope the symptoms are controllable; my hair will thin, I will have nausea and lethargy.

At least I am able to have some treatment. Vinoralbine is known to help in 15 - 19% of mesothelioma patients, so I just hope I am in that category.

I WILL keep fighting all the time there is quality of life and hope.

My daughter Emily was brilliant in her role as Miss Adelaide in Guys and Dolls and we are so proud of her. It is very difficult for young actresses to get started in the acting profession especially if they don't know anyone with influence.

Some good news.

2011-03-24T13:39:00.004Z

Good news, my GFR has gone up to 21 from 11, five weeks ago, and the creatinine level has gone down to 203 from 335. This is very good news for me as it means my kidneys really want to work. It is all helped by the fact that I am not being as sick as I was, so am able to keep more fluids down. This also opens the possibility of me being able to participate in future drug trials which are really my only hope of beating this cancer.

My daughter in law Amy discovered someone had dumped a load of asbestos in her works car park. She was absolutely furious. The person responsible turned out to be their gardener, who was unaware that they had put in CCTV. When confronted he denied doing it, but had to confess on being shown the CCTV. It is going to cost £400.00 to get it removed safely.

I hope they go to the police. I have also messaged her to see if she will let me call the local TV and newspapers to report on it, to make people aware of the dangers of asbestos The fool must have had it in his car, where there will still be fibres floating around. These people know it is illegal, so why don’t they think about the reason why it is.

Emily, my daughter, is in the play 'Guys and Dolls', on in Dartford and had her opening night last night, which went very well and had a very good and responsive audience. We are looking forward to seeing her in it on Saturday night.

My photo is of my young three
year old grandson Joseph
dressed up for his playschool party.

What a roller coaster fortnight.

2011-03-14T16:17:00.003Z

What a roller coaster this last two weeks have been. I had terrible centre chest pains and was taken into hospital by ambulance. They thought it may have been a heart attack. Although I was showing markers in my blood for this the ECG was not so definite. I was in hospital for five days while they tried to stop the pain and control the sickness that came with it. They decided it might be the mesothelioma, or furred up arteries and sent me home with blood pressure pills, beta blockers and statins for cholesterol.

I still felt really bad over the weekend and had a repeat of the chest pain again on the Monday. I was advised to go back into hospital and was there for four more days. They are not really sure what it was all about and seem to have come down to blaming the mesothelioma.

At least the chest pain has now stopped.

With the chest pain was a serious pain down my jaw and neck, this seems to flummox them and they don’t know what it is. I get this pain on getting up from a laying position and I am to see my GP about it later today.

I was told in December and again on 25th February that my mesothelioma was stable so I don’t know what to think, it is worrying.

I do feel a bit better but my chest is quite uncomfortable, so maybe the Doc’s are right.

I tried a new anti-sickness drug but it made me swell up and I felt as if I had a straight jacket on that was suppressing my breathing. These symptoms went in a couple of days of stopping these tablets. I did ask the hospital doctors if this reaction was from the anti sickness, but they said no. I now know otherwise.

I am just so sensitive to medicines and seem to get many side effects from them. Even the morphine they initially gave for pain made me hallucinate.

I am not sure what to do, I don’t see the oncology people for about six weeks and if the mesothelioma is indeed rearing up again I need to do something, or have something done. Unfortunately my kidney failure means chemo is out of the question until they improve, which they are trying to do.

At least my sickness is under control at the moment, after going back on my original tablets that had stopped working but are now working again.

I would like to say a big thank you to the wonderful nurses on the CCU and Culpepper wards who were very sympathetic and caring; they made a worrying hospital stay bearable. In fact all the staff at the Maidstone hospital couldn’t have been kinder, I was most impressed.

Better News

2011-02-25T17:52:00.006Z

I wanted to post this better news quickly for all who have been worried for me.

I saw an oncologist today at St. Bart’s. They had cancelled my appointment because I had an emergency one in January because of my kidneys, but didn't tell me. However they got my files and saw me straight away. It was not Dr Steele, but the oncologist I saw in January. He told me that I can probably have some chemo whilst on dialysis including cisplatin which is what he thinks ruined my kidneys.

I won’t be able to participate in any trials though, including the IPM trial. If my kidneys should improve this week and continues to do so they can’t do chemo until the eGFR count is nearer normal, probably many months away. So the news was better than I was expecting, which has lifted my spirits somewhat and also my family’s.

My Meso is currently stable and he says that the Professors’ treatment has done some good, which is good news too.

At least I have some back up chances again so let’s hope they find a cure this year for Mesothelioma and other cancers.

My wonderful son Christopher took a day off work and drove me to the Hospital, a nearly two hour journey each way. I was worried about being sick in the train, and was in fact sick in the car, but with family, not strangers. My other Son Stephen and Emily my daughter have offered to drive when needed too. What amazing children I have.

Thank you all for the tremendous support you have given me through all this horror, it has been a very stressful few days..

Can't have more chemo.

2011-02-24T12:04:00.003Z

I am particularly worried about going on dialysis because it will mean I can’t have any more chemo, which means I can’t fight the mesothelioma. Therefore the cancer will now take its course and will kill me, probably this year.

This is what I meant by 'the beginning of the end' in my previous blog. There is no other treatment available for mesothelioma.

I see my Oncologist on Friday 25th February and will talk to him about it, but the renal specialist says it is unlikely that I can have chemo.

I am still being very sick and it seems to be getting worse, I also have difficulty eating as I feel so nauseous, which means I am losing weight quite quickly.

I did say when I started this blog that it would be warts and all and I am sorry these last ones are not more positive, but it hard to be positive when everything is going against me.

Very bad news.

2011-02-22T18:38:00.002Z

I got bad news today. It seems my kidney failure is irreversible and I will probably have to go on dialysis three times a week. The Doc said that once I am on it I will not come off it and they can’t consider a transplant because of my Mesothelioma.

I did have forebodings before the appointment and I guess this is the beginning of the end.

The Doc will do another blood test in two weeks and if my eGFR hasn’t improved, and he doesn’t think it will, he will start me on dialysis.

Sorry it is a short block, I am a bit in shock.

Renal failure

2011-02-20T12:44:00.004Z

Well, the sickness still continues. My eGFR has now dropped to 11, anything below 15 is considered as stage five kidney failure. I have an appointment with a renal specialist on Tuesday and my GP thinks they will admit me into hospital. I hope they do as it definitely needs sorting out. I am hoping they put me on dialysis to finally clear the remaining chemo from of my blood.

I have an appointment and CT scan with my oncologist for the mesothelioma due next Friday, I will have to rearrange it if I am admitted to hospital.

We had a good holiday except I was ill for the last four days. The temperatures were up in the 30’s and it was nice to get some sun. I had hoped that the sunshine would help my kidney condition, but it seems to have had the opposite effect.

It is very wearing being ill, especially as I have been being sick since August when I had the first of this round of Chemoembolizations in Frankfurt.

My photo is of my lovely grandson Joe who has decided that he doesn’t like having his photo taken, and it shows on his face.

Hooray, I am not being sick.

2011-01-25T10:01:00.013Z

Hallelujah! This is the third day of not being sick, after six weeks. It was so wearing and exhausting and I have felt quite ill. I have finally found an anti-sickness pill that works and it does not make me feel spaced and drunk as some of the other pills I have tried.

We were seriously thinking of cancelling our holiday as even the flights would have been a sickly ordeal, so I and my family are all very pleased. My poor husband Rob has been very stressed about it all this week, I think he felt helpless, so he is delighted.

My eGFR is still only 18 but is very slowing moving in the rights direction.
I am seeing a renal specialist on the 22nd February, but it seems that I just have to wait for my kidneys to recover on their own. We don’t know yet how much they will recover.
I want to thank all my friends and family for being SO supportive, they have all helped me through it.
I have just cooked a pizza and my son Christopher will be pleased with me because he says I should eat charcoal to chase away the toxins in my blood, and I burnt it. I did add some tomatoes so it sort of had a healthy element.

I am doing the Cancer Research Race for Life in July if I am well enough so I shall be looking for sponsorship please if you can. Here is the link for the team page. The whole team raised over 3,800 last year and 4,000 the previous year so it would be nice to beat the previous totals.

Here is the link and I thank you in advance: http://www.raceforlifesponsorme.org/theperfectfriends
It feels so good not being sick.

The photo
today is of the amazing team we has for last year’s Cancer Research Race for Life. It looks like many of them are signing up to race with me again

Still feeling unwell.

2011-01-09T10:51:00.003Z

I had more blood test results Friday and it seems my eGFR is still only 17 and my creatinine levels 256. My GP is calling Jeremy Steele at St. Bart's on Monday to see if he wants to treat me or should a kidney specialist. My nearest kidney specialist is in Canterbury, a bit of a drive but easier to get to than St. Bart's. I have to wait to see what is decided for me.

I am disappointed that I don’t feel any better; I was hoping I would improve quicker.

My GP suggested I contact the Prof. To see what he thinks should be done. His reply was ‘thanks, you should use infusions then it will improve again.’ I guess that means drink lots of tea as it is a diuretic I think.

I am supposed to be going on holiday at the end of January, so I hope I can still go, as it is all paid for and the insurance won’t pay out for anything connected to mesothelioma.

My picture today is of my youngest son Stephen and his son Joseph. He is such a hands on Dad, it is lovely to see.

Reason for feeling so ill.

2011-01-04T17:22:00.005Z

Well, it seems part of the reason for me feeling so bad is that my kidneys are deteriorating. I have a GFR count of 16, up from 14, (classed as stage 5 kidney failure) and normal is over 90, and creatinine levels of 293, normal is below 80.

It seems that each time I have a treatment it causes more damage. I have another blood test on Friday and hope it has gone up a bit more. It seems wise now not to take the January Frankfurt appointment; it could have been the death of me.

My nurse friend Clare suggested the initial blood test as I was so ill and she suspected the result. My GP should have picked up that my kidney function was falling rapidly, but didn’t. Not good.
I do feel a bit better, though still not right, but obviously needed the break from treatment.
I urge all Mesothelioma patients going for treatment to keep an eye on their GFR blood test.

Having said all that the treatment has been keeping the tumours from growing too much and would consider it again if other options fail. I would know what to look for in my blood tests now.

I have other Meso Friends getting treatment in Germany this month and wish them all well and good luck.

My Daughter Emily is in the final of Open Mic competition and has realised her ambition of singing at the O2, which is on 15th January. We will all be there to cheer her on.

Here is a picture of my wonderful husband Rob and me taken in May 2010.

Worse ever side effects.

2010-12-29T14:16:00.003Z

There is no doubt that the treatments the Professor has done have had a positive effect on my tumours. He has stopped them growing bigger and this is an amazing achievement. However, I have been so ill for two weeks after the last treatment that I must have a break. The side effects are cumulative and pretty much unbearable after the five treatments in a row. I have had nine in all.

I have cancelled my January appointment with the Prof. and told him that I will undoubtedly be back at some time for further treatment and he accepts my decision. I thank him for keeping me going all this time.

My current option is two months of no treatment to give my body a chance to rid itself of all the chemo that has built up. Then in late February I am having a CT scan at St. Bart’s and we will talk about the IPM chemotherapy that Dr. Steele is recommending. It has shown a 30% – 40% reduction in patient’s tumours, so I must give it a go.

I know the disease will beat me eventually but all the time I am able to get about and do fairly normal things I will fight it tooth and nail.

I had a very good Christmas in spite of feeling unwell and am looking forward to another new year that I didn’t expect to see.

I wish all my friends and everyone else a Happy and Healthy new year for 2011.

December in Frankfurt

2010-12-16T18:54:00.004Z

Well, that was my ninth visit to the Professor. He says my tumours are more necrotic and that I have more lung capacity. He also says there are no new tumours, so I assume that there have been at other visits.

The Prof has made me an appointment for January but I will not be going then. I have decided if Dr. Jeremy Steele of St. Bart’s hospital agrees, to go on his IPM chemotherapy program. He uses the same chemo drugs as the Prof. Plus one other chemo drug called Irinotecan (Campto) I think I am also considering Mistletoe infusion too. I always have the amazing Prof. as back up if the IPM doesn't work for me, but his treatment is so expensive.,.

I am going to have a couple of months off as I have been having treatments continually for five months, and feel the need to pick up a bit before continuing.

I have just heard of a friend of mine who has just had an operation for lung cancer with pleural plaques. When will it ever end, especially as the Romans knew all those years ago that asbestos kills.

I wish all of my friends, supporters and everyone else in the world a peaceful and healthy Holiday over Christmas and the New Year.

My picture this time is of my beautiful Grandson Joseph on his first ever sledge ride.

Yet again to Germany.

2010-11-26T18:41:00.002Z

I am off to Germany in a week and not at all looking forward to it. My Macmillan nurse says that here they put you on steroids when you have chemo and she thinks I will feel better if I do that. I checked with the Prof. who agrees. This will hopefully mean that I don't feel awful over Christmas. I hope it works.

My sister has just had radiation therapy on her brain and is waiting for more treatment for the other secondaries. She is being so brave and is a real fighter like myself, so I am optimistic for her.

I am looking forward to a few days in the sun soon.

Emily is in the area finals tomorrow and we are going to Portsmouth to support her. I have heard her song and it sounds amazing. If she gets through this final she will be off to the O2 in January.

I hope the snow doesn't make it difficult tomorrow.

My picture today is of a collage I have done, my first one.

8th Treatment in Frankfurt.

2010-11-07T13:54:00.008Z

This was my 8th Treatment in Frankfurt. I had emailed the Prof. to say I was still being sick everyday and have the shakes for the last two months. He emailed back that he would therefore do the chemoembolisation treatment instead of the chemoperfusion treatment. Then I thought about it and emailed back that I actually wanted him to do the treatment that would best benefit my condition.

The Prof. says the shakes and sickness are to do with my brain probably being a bit inflamed and that it should wear off when the treatment stops. St. Bart's thought the same as they gave me a brain scan, but said everything was OK.

In the end I had chemoembolisation, and again had a bad allergic reaction and was given about six different medications to help, which they did. After about an hour I was OK again and rested for the three hours before having a follow up CT scan, and my appointment to discuss the outcome with the Prof.

The Prof. was very pleased and said I was now stable, I asked if it was all stable or just the bit he last treated. He said it was all stable, so brilliant news. He wants to do another treatment in December though, which was a bit disappointing as I thought this was the last one for a bit.

I told the Prof. that I felt I should try out the IPM chemo that St. Bart's is trialing. He thinks I may react badly to it as it uses mostly the same chemo that he uses. I hope not though. He says he will make another appointment after the December treatment, for 6 - 8 weeks while I investigate. I thought it best to be honest about what I was planning to do treatment wise, as I will definitely be seeing him again for more treatment in the future, as there is currently no known cure for mesothelioma. He says I am still good for his statistics.

I have had a CT scan at St. Bart's and they seem to have missed the fact that I have tumour below the diaphragm, in fact they say there is "no tumour below the diaphragm". I know I have tumour there from previous scan's I have had elsewhere. I have asked for the CT scan to be re- reported so they have an accurate view of my condition. It could affect the treatment options they give me. I just have to be on the ball and double-check everything, it is so worrying.

I have heard good and bad news of my fellow mesothelioma suffers, it is very hard to come to terms with bad news but the support we give each other is priceless.

Today's picture is of the Aldershot Open Mic Competition of my Daughter Emily taken by Caitlin Mogridge.

St. Bart's Scan Results

2010-10-29T22:59:00.002+01:00

I have just had my head/thorax/abdomen scan result from St. Bart's. Comparing it to 14 months ago when I had my last CT scan in the UK, it seems the Mesothelioma has spread all around my right lung, as I would expect, and has 'probably' infiltrated my heart pleura, they think. The meso is all contained still in my right chest cavity though and is not spreading outside of it. There seems 'possibly' to be some sort of 'parenchymal involvement' in my left lung, not pleura. I am not too sure what this means except it would suggest some sort of lesion, but it must be quite small if they say a 'possibility', I guess.

My other organs are not affected and my head is ok. They found my brain, hiding behind my left eyeball.

All in all as expected and it could have been a lot worse.

We are off to Germany for my 8th overall treatment and I must say I am VERY nervous about it as it was so painful last time.

St Bart's is doing a stage 3 trial possibly starting in November, but most likely in the New Year. They wouldn't give me the details but I have expressed an interest if I am suitable for it.

St. Bart's did offer me the IPM chemo (Irinotecan, Mitomycin and Cisplatin) once my tumours get much bigger, but said they would do it sooner if I wanted them too. It is tempting as they report 30% - 40% of patients get shrinkage of their tumours with it.

The work the Prof. does only works on a bit at a time and even he said I would benefit by full chemo. Hmm. things to think about.

Emily got through her regional final and is now in the area final for Open Mic. This stage is held in Portsmouth on Saturday the 27th November. We hope people can go as the audience reaction and votes count for a lot. If Emily gets through again the National final will be held at the O2 in January.

My picture this week is a photo of my gorgeous three year old Grandson Joseph and me, taken a week ago.

Ouch!

2010-10-06T18:40:00.006+01:00

Just back from Frankfurt and the treatment this time was quite painful. As the Prof. goes into the same site each time it gets more painful. He says he'll go in from my left side next. I do wonder how long I can go on with this though.

Again I got the shakes and had to have oxygen for an hour as my breathing can get difficult immediately after the treatment. I have not yet had any reduction in my meso but he says it is sleeping where he has treated this time. He wants to treat me again next month then I can have a rest. Presumably he is therefore saying I will need to continue to have more.

I did hear some good news today though, Cher Bright, another patient, has got some reduction in her meso and is stable. The Prof. wants to do one more treatment on her. Several of us Brits have gone over to Germany this week and I send them all the luck in the world for a good outcome..

Last weekend was the Patient and Carers Mesothelioma Conference in London. It was so good to meet up with the people who have been encouraging and putting faces to names. It makes it all seem so much more real.

There seemed to be nothing new happening on the horizon for this awful disease. I am hoping for a breakthrough before it is too late for my fellow sufferers and me.

My photo is of a group of us at the conference in our Cher Bright Meso t-shirts.

Meso Warriors

2010-09-21T11:04:00.013+01:00

Four fellow mesothelioma sufferers have lost their battle this month; this is a bastard disease. My thoughts are with their families.
We all try and support each other and our families, which is lovely, but is sad when another brave sufferer dies.

I am still feeling chemo'd, nauseous and muzzy headed, it seems to be lasting longer this time for some reason, 12 days so far.

I am going to Germany again for treatment for the 4th of October. I am hoping it is the last of this series, I won't know until I get there though.

There is a Mesothelioma Patient & Carers meeting in London on the 2nd of October and Prof. Dr. Thomas Vogl, my doctor in Germany, is coming to talk about his treatments. It will be fantastic to meet up with all the people I am in contact with, regarding mesothelioma, and putting some faces to the names. We all intend to wear matching T-shirt's designed by a fellow meso warrior Cher Bright. Even the Prof. is going to wear one we think. It will show the solidarity and comrade we all feel knowing each other.

There is a local charity that has built and runs a school in Farato, Gambia. They are having a fundraising art exhibition, with mostly professional artists, and I have dared to put in some of my paintings. Thirty percent of each picture sold will go to the charity, let's hope one or two of mine sell too.

Emily, our daughter performed at the 'Her Majesties Theatre', Haymarket, London, that is currently showing the Phantom of the Opera, on Sunday and we are so proud of her, it was a great night. She is also in the regional finals in October for the Open Mic competition and we will be supporting her there too.

Our grandson Joseph has just started at his new nursery and seems to be picking up all new bugs from this new set of children. Poor Joe has had enough of illness.

Today's picture is of Cher's design for our mesothelioma meeting T-shirt.

Frankfurt Treatment

2010-09-11T13:22:00.007+01:00

.
Just back from Frankfurt where I had my second treatment this time, but 6th treatment overall. The procedure went well but I had a bad allergic reaction to the tracer the Prof. uses to make my blood vessels visible for the Ultrasound scanner he uses during treatment. I got a severe burning in my stomach, then was retching quite badly, then I had difficulty breathing. I was put on oxygen and a Doctor sat with me as I was shuddering on and off for a couple of hours. This was not very pleasant and it was with some relief when it all settled down.

Next time they will give me something before the procedure to prevent a repeat. The Prof. has treated my Lymph nodes plus some pleura this time. I assume the pleura bit is remnants that could not be removed at my pleurectomy operation. I can certainly feel where he treated me.

We met up with some other people having the same treatment; one was having his first and the other having more after 18 months of the mesothelioma sleeping after her last treatment. It was good to be able to speak to others in my situation as the mesothelioma is not that common, and to exchange notes. Constipation can be a problem for the first few days and Movicol seems to be the best solution for me. I know, too much information.

The Prof. has given me a date in October but I just can't find any hotels there under £700.00, as there is a huge exhibition on at the same time. I have asked for another date and await this so I can get the hotel and flights booked.

I asked if the area the Prof. treated last time had improved and he told me it has. So it is a little bit at a time but progress of sorts too. I hope my next treatment is my last for a bit.

I am looking forward to hearing Emily sing at her regional finals in October, if she gets through to the National finals she will compete at the O2 Arena.

My picture this time is a photo of my grandson Joseph in Majorca with us all last year.

Devastating news.

2010-08-27T11:59:00.006+01:00

Suffering with a nasty chest infection for the last 10 days, I have now got some strong antibiotics and hope this finally knocks the infection on its head. The Doctor has taken blood to see if my white blood count is OK as I only had chemo (in Germany) two weeks ago.

We had some really bad news last week, my youngest sister has been diagnosed with renal cancer and is seriously ill. She needs operations and drugs to help her. This is a tremendous blow to her and us and I can't believe how unlucky our family is. She is being very brave and I know that, like me, she will fight this with all her might.

We are off to Germany again on the 8th September for treatment on the 9th, hopefully my bloods will be OK by then and I can have the treatment. I will also get the results of the August treatment.

I am losing quite a lot of hair after the August treatment. I had forgotten this side effect to the chemoembolization. Fortunately it doesn't all fall out, just thins a lot.

The picture this week is a photo is of me and my lovely sister taken about 20 months ago.

I Am Happier Now.

2010-08-10T20:50:00.007+01:00

I am so much happier now after my visit to the Prof. in Frankfurt, he has put my mind at rest somewhat.

The Doctor, who got me to sign the treatment authority, told me to drink lots of fluid to flush my kidneys as the chemo fluid can do damage to them if left in the body too long.

I told Professor Vogl that it was painful last time and he gave the anaesthetic a little longer to work. He does the treatment with the aid of an Ultrasound scanner and the moment he puts the chemo-embolizing fluid in you see a sudden splat on the screen. I can't always see the screen, but the couple I have seen produced a small circle. This time though, the splat was ten times bigger and I could see the fluid going into small blood vessels around it. It was an amazing picture.

The procedure went well and I was sent to rest in the anti room outside the theatre; I assume because the ward was full. I didn't get offered anything to drink though, but this didn't worry me as I was determined NOT to have to ask for a bed pan, as I am not allowed to sit up for at least three hours after the treatment. Also the nurse only put about 200mls of fluid through the catheter instead of the usual litre plus. The nurse on the ward after previous treatments was quite fastidious about me having to have the whole lot. I made up for the lack of fluid by drinking lots of water for the rest of that day and the following day too.

After I was allowed up I saw the Prof. again. He said he was very pleased with the way it went as he had hit the spot this time. He would usually try to put the chemo-embolizing fluid where the tumour blood supply is, but it is impossible to get to the exact spot each time. This means that the chemo can do its work but the tumour blood cells don't quite die off, they just sleep. (This is what I think happens.) The Prof. says I will need three treatments and that they will embrace the lymph nodes too. This makes me happy.

I asked if the mesothelioma could stop reacting to the treatment, he says not usually but he has a large arsenal of poisons in the cupboard to attack it with if this happens.
Just what I wanted to hear.

My watercolour painting this time is of a couple of beached boats, done with a palette knife.

Off to Frankfurt again....

2010-08-04T10:48:00.002+01:00

We are off to Frankfurt on Sunday for a treatment by Prof. Vogl on Monday. I am a bit worried about it as it really hurt last time. Also I don't know how much of my mesothelioma is growing so don't know how many treatments I will need. I have to ask the Prof. how often I can have this treatment as all chemo stops working on meso after a while.

For once I did quite well with my Pound/Euro exchange.

My visit to St. Barts was a bit unsatisfactory, as Dr. Steele has now said he will monitor me but not consider any treatment until I have finished with the Prof.. Back to square one. The Prof. says my lymph nodes are now affected and he thinks I need full chemo, but Dr. Steele says it is unlikely to spread.

August is a busy month with several social events so we will not be able to get away for a break until September, but at least the weather is still pretty good.

I am delighted that my friend Debbie Brewer is able to have an operation for her TOF and this will stop the endless cycle of chest infections leading to pneumonia.

Today's painting is the last of the 'Door' group. It is of a blue Majorca Rustic doorway

Back to Germany

2010-07-19T22:52:00.009+01:00

We are off to Germany for treatment again on the 9th August and I hope that just one area is growing again. I guess I will find out. I don't know whether it will be chemoembolization, or chemoperfusion, the Prof. just said ' local intraarteiral in the involved areas' in his email.

We will be going by BA, so I hope they don't go on strike again.

I wonder how often I can have this treatment before it stops working any more? I know mesothelioma stops responding to chemotherapy drugs eventually.

There is a lot of research going on for a cure so hopefully something will be discovered whilst I am still fit enough to be treated.

I am so pleased that things seem to be working out for my lovely daughter Emily. She now has parts in a musical comedy in August and a show in Her Majesty's Theatre, Haymarket in September. In both parts she is singing, which is quite new for her as acting is her first choice.

My lovely grandson will be three on Wednesday, a birthday I thought I wouldn't see.

Today's painting is a watercolour of a Mediterranean arched doorway.

Here we go again.....

2010-07-10T14:56:00.003+01:00

Well, here we go again. I emailed the Prof. who suggested it might be good to get treatment from him now to stop progression, rather than wait, as the Mesothelioma will just keep growing. I will still have the lymph node problem though.

So we are off to Germany again in the second week of August. I will have to ask Jeremy Steele if he is OK with me seeing the Prof. as well as him. I hope he is, as I definitely need to be monitored here in the U.K. too.

This is all so very stressful and political,

The Prof. is coming over here to talk to the Mesothelioma.UK charity meeting in October. Hopefully this will spread the word. We desperately need his treatments to be available in the UK as they do extend life of patients considerably.

Today's painting of is a colourful doorway in Greece.

St. Bart's Visit.

2010-07-06T13:40:00.001+01:00

I saw Dr. Jeremy Steele at St. Bart's and he advised me to hang on for a couple of months more before having the IPM chemo. He feels the Mesothelioma is not growing too fast and as I have a good standard of life at the moment, chemo will make me feel awful and sick and my hair will fall out again, delaying it will also add those extra months on at the end.

He was not too concerned about the lymph nodes at the moment as he says they can enlarge for several reasons and where would the meso go to anyway? Hmm... not too sure about this argument as I have heard of it spreading to the brain and to bones, but we'll see. He did say that he would give me the chemo straight away if that was what I wanted.

It is a slight possibility that my mistletoe injections could cause the lymph nodes to swell.

I have decided to take his advice as he is the expert and meso is his specialist interest. He is chairman of the 'mesothelioma UK' charity.

I see Dr Jeremy Steele again in three weeks and he will scan me again in about seven weeks to see how much the meso has grown and a decision will be taken then.

We went to the Hop Farm Festival on Saturday and saw some great bands, Mumford and Sons, Seasick Steve, Ray Davies, Pete Doherty, Laura Marling, Johnny Flynn,
The Magic Numbers, & Foy Vance.
The headline act was Bob Dylan, who was a bit disappointing. Still the weather was great, the company was great, and we all enjoyed ourselves.

I am so loving this amazing weather, long may it last.

Today's painting is of a colourful doorway found in Greece.

2010-07-01T17:18:00.005+01:00

We have just got back from our appointment with Prof. Thomas Vogl in Germany. He did CT and MRI scans. He says that the cancer is still in its primary position in my right lung and HAS NOT spread separately into my abdomen. This is good news.

Unfortunately is has started growing again and now infects two lymph nodes too. This is bad news.

The Prof. says I now need conventional chemo again, followed by more visits to him when it is over.

I am seeing Dr. Jeremy Steele at St Bartholomew's on Friday and hope he can offer me something that may work.

This all seems such a battle, but I will continue to fight!

My painting is of Venice.

Not good news.

2010-06-19T18:58:00.005+01:00

19th June a.m.
I was told that I was stable at my last visit to Germany in early May, however my UK surgeon had a chest x-ray taken in early June and says there seems to be a new shadow on my lung.

I looked again at the scan CD the Prof. gave me of my May visit and noticed some shadows, on the full body image, in my peritoneum (abdomen), which he hasn't mentioned. This seems to be new so I have asked the Prof. for his opinion. He says he will look at the x-rays and re-check the scan, but he seems not to answer my question but asks if my Oncologist has planned any treatment.
My Oncologist isn't interested in seeing me while I am seeing the Prof.

I have emailed the Prof. again for his views and to ask what treatment he recommends. I have also left a message on his answer-phone. This is obviously worrying me and my family and we feel we are in limbo until the Prof. gets in contact. . I am due to go to Germany anyway early August, but this is six weeks away.

We had a lovely holiday, which was overshadowed somewhat by our concerns

19th June p.m.
I have now heard from the Prof. who says that the cancer may well have spread and that my lymph nodes are also enlarged, this from his own scan. He suggests I go over to him in July to check to see if the cancer has grown more. He also says it should be tackled with conventional chemo then the local treatment that he does. I will need to see my oncologist too.

I wait for his appointment date and keep my fingers crossed.

Here is a photo we had taken on our holiday last week.

May and Mistletoe

2010-06-02T11:33:00.009+01:00

Being stable is taking some getting used to. After fighting the Mesothelioma for two years it is not easy to relax.

It is such good news from Debbie Brewer that Dr. David Kessel, of St. James Hospital, Leeds, is considering doing the Prof.'s medical trial, thereby bringing his chemoperfusion (TAPC) treatment at last to the UK. Others and I know that this treatment seems to work for some Mesothelioma patients against nothing else that does.

Who would have thought that I would still be alive two years after diagnoses, isn't life great!

The mistletoe injections are going well, apart from the insane itching at the injection site. It does seem to have helped my getting off to sleep too; I have ditched the sleeping pills.

I am now eating asparagus once a day as it is said it helps to fight cancer. This is not a hardship as I love it and it can be bought in Lidl for £1.29 per jar, and a jar lasts three days.

Our village amateur art group held an exhibition for the Heart of Kent Hospice, where I volunteer in the fundraising department one day a week. We raised an amazing £225.00 in just two hours and I sold my first painting too. Ace!

The landscape watercolour painting this time is experimental, I used a palette knife to see what would happen. I quite like the effect. .

Race for Life 2010

2010-05-16T17:35:00.016+01:00

Well, it didn't rain this time and what an amazing atmosphere at the Cancer Research Race for Life. It was the first race this year in Kent and there were about 4,000 runners again, plus several dogs and children.

We took about one hour fifteen minutes to complete the course, which was more difficult, this year. There seemed to be more uphill stretches than last year, which made me struggle somewhat, but we all finished the race, arms linked, in a line.

We saw two people being helped over the finishing line propped up by volunteer St. John's Ambulance men.

Our team have so far raised about £3,500.00, I am so proud of them.

I have started again on the mistletoe injections, but 100 times weaker than the first one. It is going OK so far, and is quite bearable. The idea is to boost my immune system into top gear so it fights any stray Mesothelioma cancer cells. Watch this space....

Today's picture has to be the great team at the race. Thank you to Emily, Abi, Dawn, Anne, Amy and Georgie and Mabel, Chris and Amy's dog, specially was dressed for the occasion. Well done!!!!

Good news after check-up in Germany

2010-05-08T18:38:00.002+01:00

With trepidation we went to Germany on the 5th May for scans and a consultation with the Prof. on the 6th. The news however was good and he actually said my disease was stable, but not to forget it is still a terrorist. We were so pleased that I sent phone texts to our family straight away. The Prof. doesn't want to see me now until early August, so this gives me a quarter of a year more to enjoy before we go through it again.

It has now been two years since I was first diagnosed with mesothelioma and I feel really good and am told I look healthy too.

Before our trip to Germany we had a holiday which was extended by an extra six days because of the volcanic cloud. We didn't mind too much as we were in a very nice hotel and enjoying the hot weather.

The race for life is one week away and I have raised £1300.00 so far, just £105.00 short of my personal total last year. Gift aid gets added onto this figure too. We have a good team again and they are also avidly fund raising too. I just hope the rain lets off unlike last year. If the weather is clement enough we will have a picnic in the park for our efforts.

The painting this time is of an old knarled tree I did this month. I am quite getting into this painting lark.

2010-04-28T11:15:00.006+01:00

We are finally back from our holiday just six days late. This volcano has affected many people who were away from home when the cloud came over. We did however have a wonderful time.

I still have a lump from my first mistletoe injection in February and am due to see the Doctor on Friday.

The race for life is coming up soon and I would like to thank the many good people who have sponsored the team and me again this year. We are hoping to reach our last years team target but this looks a bit doubtful as everyone is still feeling the pinch; but this won't stop us giving our all in the race which I am really looking forward to.

The Heart of Kent hospice, where Rob and I volunteer, is holding a May 2nd bluebell walk, it is about 8 miles and through wonderful scenery. This raises lots of money for the hospice and all walkers get a brilliant ploughman's lunch at the end. Rob and I will be there helping out.If you fancy the walk and helping the hospice here is the links http://www.hokh.org/newswebpage.asp?pid=632&nid=80

The watercolour this time is one I did recently of my daughter Emily's two kittens, they are so cute.

Easter Greetings 2010

2010-04-03T16:21:00.004+01:00

I would like to wish everyone a Happy Easter.

Amazingly I still have a lump from the mistletoe injection and Dr. McGavin says I do not need to inject a 2nd one until after my holiday later this month. Whew!

It was really good to meet up with Carol and John after over thirty years and we had a wonderful day and we plan to meet up with them again. It was lovely reminiscing.

There have been lots of problems for friends lately with two being in Hospital, one a meso friend who is now out and recovering, and one who is in great pain and the hospital doesn't seem to know what is wrong, even after scans. Also thinking a lot about a friend who is grieving for her beloved husband who died recently with mesothelioma, she is being so brave but finding it very hard. This horrible cancer affects more than just the patient.

Still not sleeping well. The Doctor says I can double up the sleeping pills, but they knock me out for the next day and I STILL wake up in the night several times. So I might as well not take them, as I hate taking pills all the time anyway.

The Cancer Research Race for Life sponsorship is coming on very well and I have now got a great team of seven of us. They are Emily White, Georgie McKenzie, Amy Commander-White, Abi Close, Anne Loftus, Dawn Aloof and myself. The last two have yet to sign up but have promised to race. We are aiming to match or beat our last year's amount raised of £4300.00 including gift aid.

My painting this time is of a kitten I thought was cute. I am new to animal painting and was quite pleased with this effort

A month after Mistletoe

2010-03-20T13:36:00.008Z

I had my first mistletoe injection on the 20th February and I STILL have a lump in the injection site a month later. This means I don't have to inject again until the lump goes, so probably in a couple of more weeks. I can't say I am sad about that.

I have to say that I am much more comfortable in bed now, the last chemoembolization Prof. Vogl did for me in February seems to have really made a difference. We see him again in May, giving us a nice three-month break from treatment. The longest we have had since I was diagnosed with mesothelioma. I am still not sleeping properly though. If anyone has any great ideas other than getting drunk I would love to hear them.

Actually getting drunk might become an option; where's the Bailey's?

Thank goodness the weather has improved; going for walks in the extreme cold was very difficult as the cold hurt my lungs. It is altogether much more pleasant now, especially as the spring flowers are starting to show and the sun occasionally comes out.

We are looking forward to a holiday in April, but before that we have our friend Carol coming to visit who we last saw over thirty years ago and she was responsible for Rob and I first meeting, for which we are very grateful. I am really looking forward to her and her husband John's visit. It will be the first time we meet John.

Mother's day was very pleasant. The night before we went to Brighton to see Chris Rea in concert, then stayed with my sister Dawn and had lunch with her and her daughter Jade, her partner and her three young children. We got home late afternoon and were visited by our children bearing cards and flowers, very nice. We see a lot of our children; they all live fairly close by which is lovely for us.

The picture this time is by my four-year-old great niece Lily who made it especially for me with a printed picture and stickers, which she did herself. I have it in our study and it cheers me up.

She is a talented young lady and very beautiful. Thank you Lily.

Mistletoe follow up.

2010-03-06T18:06:00.004Z

I have had my follow up appointment with Dr. McGavin re the mistletoe. He says I must have a lively immune system as I reacted so much to it.. I am to wait until the first injection site has settled down and the swelling is gone before injecting any more. Then I am to go on a quarter dose and see what happens. If that takes a week to settle then I wait that long until I inject again, all in all not bad.

The good news is that the homeopathic medicines the labour MP's want to take away from the NHS does not include the mistletoe as they are Anthroposophic and not homeopathic so this is excellent news for me and others.

Finally I have got the drops Valerian from the chemist who took two weeks to get them in. They will hopefully help me to sleep as it that difficult for me now.

There are rumblings on the internet about a vaccine that is given to mesothelioma patients which uses the patient's own [dendritic cells] to present tumour-associated antigens and thereby generate tumour-specific immunity.It's not a vaccine in the traditional sense: It doesn't prevent disease. But like any vaccine, it triggers the immune system to attack an intruder, in this case, the cancerous cells. Dendritic cells are a form of immune system cell

My picture this time is one my Daughter Emily did at school when she was 14 years old. I have always liked it and have it framed at home. It is of the Museum building in Maidstone.

Mistletoe reaction

2010-02-22T12:57:00.002Z

I have had quite a reaction from my first mistletoe injection; it should cause a small red patch and a little itching. Mine has caused a big red-hot patch with quite a lot of pain. My Doctor says not to inject anymore until I see him in two weeks. He had ordered 20gr. strength for my future use but it seems that the 2gr. strength is already strong enough. I must say it is a relief to not have to inject for a couple of weeks, as I wouldn't want any more sore patches around my stomach.

Currently the NHS pays for this treatment but I understand that MP's want to take homeopathic medicines off the NHS; I hope this doesn't happen as many people benefit from them.

I have volunteered to work at the Heart of Kent Hospice and my first day will be this Friday if the references have all come through. I will be in the fundraising office doing admin and some fundraising, I will find out more once I start. I am quite looking forward to it. I haven't worked since I was a classroom assistant for a term at our local primary school, before I was diagnosed as having mesothelioma, and I really enjoyed that too.

The painting of my daughter Emily and her Pete went down well, he has put it up on the wall, bless him.

Today's watercolour is one I have just done of our 16th century church on a snowy day, taken from the bridge.

Mistletoe

2010-02-20T23:56:00.003Z

I have bitten the bullet and had my first mistletoe injection today. I was a bit worried about having needles stuck into me but I needn't have worried. Doctor McGavin made me practice snapping open the ampule, filling the syringe and getting the air out of it, on some out-of-date mistletoe. He then gave me an in-date ampule and a syringe, which I filled. I then expected him to administer the injection, but he said 'Go ahead and do it.' I was a bit shocked and asked how. He said that as the needle is quite short I could just inject straight into my skin, as I had 'Plenty of meat on me.' (Cheek!) I hesitated and he told me to just go for it and not be tentative, so I just stabbed myself and it didn't hurt at all! I then squirted the fluid in and it was all done. The fluid stung a bit after a few seconds, for about an hour, and now I can't see where the injection site is, but I am expecting, and hoping, for a local reaction as this means that my body is reacting.

I did wonder if I could start the mistletoe so soon after the chemoembolization, apparently it is not a problem.

I am hoping that as well as protecting me a bit from cancer it will help with sleep. I have not slept properly since my operation and it does wear me down somewhat. Dr. McGavin has also prescribed me some herbal sleep inducing drops but the chemist hasn't got any in stock so I guess it is another week of sleepless nights. Actually I do get some sleep it is just that it is in fits and starts.

I hear tonight that MP's will discuss homeopathy being excluded from the NHS, this would mean that the mistletoe would then be excluded. It is one step forward and two back in this country.

I heard some good and bad news this week about other Mesothelioma sufferers, one poor man has died after putting up a very brave fight, and another has had his three month check with the Prof. and has been told that there has been no more cancer growth. Although several Meso people or their families are in contact, and this helps, it is quite hard sometimes to hear of their news. Overall though I would say it is beneficial to be in touch and help support others going through the same as my family and me.

My painting this week is of my lovely daughter Emily and her man Pete, I did it for a birthday present for Pete. I was all fired up after a good art lesson and rashly told Emily that I would do a painting of their favourite picture. This was very arrogant of me, as I have never actually done any portrait painting before. Having said I would do it I was quite anxious of their response to the painting as it sort of looks like them and sort of doesn't. Still it is done now. We did buy him a nice shirt as a real present just in case he didn't like it. I would hate for him to have to drag it out from the attic and put it on the wall each time we visit.

Fourth Treatment.

2010-02-05T12:50:00.011Z

My word, what a roller coaster ride!
I have just been for my fourth chemoembolization treatment for Mesothelioma. This time was both better and worse than the previous treatments. The point of entry is in the groin, and usually hurts for a few seconds. This time it was a bit painful for the whole time of treatment, about 3 or 4 minutes, I don't know why, but this does happen sometimes. I wasn't so sick afterwards though, which was very good.

Afterwards I was sent up to the Day Ward and the lovely Nurse greeted me with a smile, it was good to know she was on duty again.

I have to be up in the day ward for 3-4 hours and have to stay flat on my back. Usually I cannot sleep on my back but this time I am assured that I nodded off and snored for about two hours! This was great, as this time can be very tedious.

The wards in the hospital are not nearly as hot as here in the UK, and they give you a duvet for the bed. As it was cool, I had my arms under it. I took my hands out from under the duvet and noticed that the drip tube going into the cannula in my hand was filling with blood. I looked up and saw that the drip itself still appeared to be working OK so my blood should not have been leaking back. Then I became aware that my bed was wet and NO it wasn't me!
I was hanging on so I didn't need to use the dreaded bedpan!

I followed the drip line from my hand, under the duvet and up to the stand. There was a three way join in the middle of the tube, which is unusual, and it was leaking the fluid out onto my bed quicker than the drip could feed it. This was why my blood was coming out through the tube.

I called the nurse and she realised that a cap had come off the join, probably not put on properly in the first place, and she ran to get a new cap and stopped the leaking.
This all seems very dramatic in print but wasn't too bad really.

Now I was fully awake and watching the clock until I could get up eventually to go to the toilet.

The Prof. told me that my "cancer is now sleeping but it is still a terrorist". I took that to mean that it was currently stable, but could start growing again, which is very good news. He doesn't want to see me for three months and then will give me a full body CT scan and an MRI scan and decide then if I need some other treatment or not.

To have a three month break and not have to worry is amazing and we intend to take a holiday and enjoy ourselves, I think we have earned it!

Today's picture is my watercolour of some tree blossom.

February thoughts.

2010-01-28T19:13:00.007Z

I am feeling a bit nervous about my next trip to Germany, I will be told if this next chemoembolization treatment is the last one I need, also I will get the results of my last treatment too.

My hair is falling out quit a bit, especially when I wash it, I have to unblock the bath after I shower. This is not good news as it is the third time I have had hair loss with treatment. I suppose though that if the next treatment is the last one I need I hopefully won't lose it all. I know it is a small price to pay for longevity, but it always upsets me just the same.

On a lighter note, well lighter for you, I have to rest prone for four hours after each treatment. I am not allowed to bend my legs or sit up even a little. At the same time the hospital is pumping my veins with a litre of fluid (saline solution) necessary as part of the treatment. This results in my bladder filling up quite quickly. As I am not allowed out of bed they will bring a bedpan, but Ladies you know how awful those things are. Added to that I have to go whilst lying down flat, I am not allowed to sit up. This is not only very difficult, but not too successful if you take my meaning. It took me fifteen minutes to go the first time, as my body wouldn't release anything in a lying down position. So now I just hang on and hope my bladder can cope. It can be a close call, as I have to be escorted to the loo by a nurse after the four hours as my leg could go numb and I could fall. Last time I dragged the poor nurse down the corridor in my haste to make it in time. Oh, the relief! Still, I can't complain, as the treatment seems to be working.

Sorry, was that too much information?

Rob was on Jury service this week and we were hoping that he wouldn't get a long case as my trip is next week. Unfortunately he was assigned to, and sworn in, on a case that was expected to go on for two weeks. Poor Rob had to go back the next day and ask to be excused from the jury as he accompanies me to Germany and Lufthansa, in their wisdom, will not let you change the name on an air ticket. Fortunately the Judge was understanding and dismissed the whole jury and swore in a new one. Otherwise I would have had to lose his ticket and buy a new one for my daughter, Emily, who was willing to accompany me. This would have resulted in a loss of about £300.00 as the fares had risen greatly as it was near the date of departure. Also I couldn't have got her on my flights and she would have been at different terminals at different times. It would have been very complicated.

Today's picture is a quick watercolour I did almost as a doodle.

'Race for Life' sign up

2010-01-19T15:37:00.007Z

Two weeks have passed since my last treatment and I am just starting to feel human again.

I am having some trouble breathing on exercise but put this down to my lung being inflamed because of the treatment. At least I can feel something happening again, so that is good news.

Others are now going to Germany for Chemoembolization with the Prof. so the word is spreading that he is an amazing, skillful and dedicated man.

I am so optimistic that I have entered myself for the Cancer Research Race For Life again this year, at Mote Park, Maidstone on the 16th May, and hope to beat the team effort of £4000.00+ that we made last year.
I have already raised over £300.00 of sponsorship and the page has only been up 24 hours.!

The team is now being formed and we will do our best to raise as much as possible. Thank you to our sponsors.

I have on my mind someone who is going for his first treatment today and know how apprehensive he will be. He will be so relieved at the end of the day to know it was nothing to worry about. I wish him a successful treatment.

So many people in the UK are being treated successfully that word MUST be getting to our Oncologists that there is an alternative to 'There is nothing more we can do for you'.

Today's picture is of last years 'Race for Life' team, all in good spirits even though it was raining. The hats kept the water off our faces. There was a tremendous spirit of camaraderie, a great day. Thank you to Jackie, Georgie, Clare, Emily, Dawn and Anna, well done.

Oh, the nuts have FINALY gone, as have the sweets. If I breath in hard I can pretend that I haven't put on any weight!!!

January snow time.

2010-01-13T11:32:00.008Z

I will recap on some of the things said in my previous blogs. I emailed the Prof. with the whole list of ingredients in the Holland and Barratt 'Maximum Antioxidant' caplets and he says they are fine and won't interfere with the chemo he gives as part of the chemoembolization treatment.

These cost about £3.80 for 30 caplets and I take one two times a day. I find that they repeat on me so I break them in two, which seems to work.

I also take one 400mg of Echinacea twice a day and the Prof. says these are OK too.
I often forget to take my large pinch of normal powdered Turmeric a day but do it when I remember. I take it neat and have a drink of water ready, as although it isn't too foul it is not pleasant.

Someone suggested that I sprinkle it on my food so this might work better for some.

I hope all these supplements work. I do know that my whole family have suffered coughs, colds and virus' this winter and, touch wood, I have not. And that is even with the chemo knocking my blood count down too.

If anyone is toying with the idea of going to see Prof. Vogl, I would say don't hesitate. There are too many people who are responding extremely well to the treatment to delay it.

The sooner the treatment starts the less that has to be treated.

Good luck to Mr. Jordon who is going out next week for treatment, a lot of people are thinking of him and wishing him well.

I have emailed the Prof. to ask about further ablation treatment after the chemoembolization finishes. This would be to get rid of anything visible remaining.

He says he will discuss it with me at my next treatment.

I know he has done this for others and want to explore all possibilities to delay any reoccurrence of the mesothelioma.

I will add on the side bar a note on how to contact the Professor if you want to pursue treatment, he will always reply to emails and very quickly too.

My picture this time is a watercolour I did of a conch shell, I just loved it's variety of colour.

Still munching through the nuts, next year I will only buy three packs once!

After the third treatment.

2010-01-09T13:18:00.003Z

I am so glad we went to Germany when we did and managed to miss the worst of the snow.

I have been sick the last few days, only to be expected really with the strength of the chemo the Prof. gives. I feel slightly better today and this should now improve as the week goes on. It seems my reaction to the chemo gets a bit worse after each treatment.

This also happened with the conventional chemo I had in 2008. Still, it is a very small price to pay for continued life.

The last two years have been a nightmare, getting diagnosed, the operation, Radio therapy and the chemo in 2008, the Sorafenib chemo drug trial last year and the two German treatments. I hope this year will be better, the German treatment will come to an end and I will hopefully have some quality months ahead, fingers crossed.

The Prof. is coming over to do at least two talks, one Dublin on the 27 January and he is also speaking on Friday 29th January 2010 - Pembroke/Herbert at the 8th Annual British Thoracic Oncology Group Conference 2010. The Prof. was invited by Dr Steele at St. Barts.

It would be great if some of our Oncologists would be prepared to listen and maybe take on the procedure. The Prof. has offered to show them how he does it.

I have just heard from one of my Oncologists that he is going to the meeting and hopes to hear the talk. I am sure they would love to be able to say there is something that can be done.

The snow is lovely and forces us to be more chilled and not rush around so much, so that can't be a bad thing.

Today's picture is of a still life watercolour I did with just shadows painted.

We STILL have nuts left, although I haven't fancied any the last few days, Rob is chomping through the quality street tin too.

Very good news

2010-01-05T17:57:00.004Z

Good news, my lung is more expanded and the last treatment has shrunk the part of the tumour that was treated a bit, but more important is that that part of the tumour is dying and now much less aggressive.

This means that the treatment is working and will give me some extra time. We don't know how much of it will die but anything is good as far as I am concerned.

The Prof. says I may only need one more treatment.

We are booked to go back on the 3rd February and will know more then. If that is indeed the last treatment I need I will have a follow up three months after that.

The news is so encouraging, especially when diagnosed I thought I only had 8 - 10 months left. This is not a cure but is better than anything available here and who knows when the cure will come. Hopefully the Prof. can keep me going until that amazing day comes.

More and more people are going to him and mostly with very encouraging results, what more can I say, except thanks to our Debbie Brewer who got the ball rolling here.

I understand that the Prof. has at last been invited to the UK and will talk to the British Thoracic Society meeting in Sheffield next month I think.

Maybe this will roller-coast and get the treatment recognised in the UK!

This picture is of Ebony, our latest family edition to my nephew Sam and his Michelle. A lovely family and a beautiful picture.

Happy New Year

2010-01-02T12:41:00.004Z

I would just like to wish you all a very Happy and Healthy New Year for all of 2010.

We are off to Germany tomorrow for my third treatment and I hope the result of treatment two is good. I certainly feel a little different, so hopefully it is not wishful thinking.

I am hearing more and more of the success of chemoembolization for mesothelioma sufferers and this gives us hope, where there was none.

Professor Doctor Thomas Vogl is amazing and inspiring, thank god for people like him

Todays picture is of Rob and I on our family holiday in Majorca in September.

I seem to have bought far too many nuts and we are still chomping through them along with endless mince pies and nibbles. Why do I buy so much?.

One week before Christmas

2009-12-20T17:31:00.006Z

Two lots of good news, the BA strike is off so, weather permitting, I can still go for my treatment in Germany on the 3rd January. The second bit of good news is that Rick Hill has been told his Mesothelioma is now dormant after his chemoembolization treatments in Germany. This is fantastic news for the Hill family and for the rest of us currently undergoing this treatment. I would be interested to know how many of us in the UK are undergoing chemoembolization.
When are they going to try this in the UK?

This is now at least two UK people who have been treated by Prof. Dr. Thomas Vogl who have been told their cancer is now not growing. There is no treatment at all in the UK that has this outcome and this is why others and myself are going down this route. I am not sure what I would feel if I hadn't come across Debbie Brewer and her treatment. I think I would be feeling very scared and despondent. As it is I have hope and a possible future.

I love being snowed in and have enjoyed the lovely snow scenes. I know it is a nuisance for those who have to travel in it but it is a wonder of nature all the same.

Today's photo is of the view outside my bedroom window taken on the 18th Dec. Magical!

I would just like to wish everyone a very good Christmas and a happy and healthy 2010.

Yes, nuts still intact, although the mince pies need replacing!

Two weeks before Christmas

2009-12-14T14:40:00.010Z

I hear today that BA cabin staff, in their wisdom, have voted to strike over Christmas and the New Year. We have booked BA to travel to Germany for my next chemoembolization, leaving on the 3rd January. They say the strike will end on the 2nd, so we are a bit anxious in case our flights are disrupted, or even cancelled. I have my treatment on the 4th.

We are getting more into the Christmas spirit now and have got most things we need for the festive season. My lovely Daughter in law, Hannah, has offered to host Boxing Day. This will take a lot off my shoulders as there will be about 10 people and we usually have it at our house.

I have read that some complimentary medicines can stop chemo drugs working properly.
http://www.mesotheliomanews.com/2009/12/08/mesothelioma-therapies-can-be-harmful/ and http://altmedicine.about.com/od/herbsupplementguide/a/herb_mistakes.htm.
This hadn't occurred to me before. I will have to check out my anti oxidant drugs with the Prof. as they contain vitamin C which can negate certain chemo drugs. Well, I learn something new every day!

What has happened to all the turkey crowns this year, I cannot find one anywhere. I guess it will have to be the whole turkey roast.

Todays picture is an ink and watercolour winter scene I did in 2007.

A short sun holiday before Christmas.

2009-12-05T16:11:00.013Z

We had a good week's holiday and the sunshine was most welcome. We cruised between the Canary Islands, Madeira and Morocco. When we left home I was feeling exhausted from the Chemo but the sun soon put a spring in my step. We met lots of interesting people and visited places we haven't been to before.

I get a nice gap now before my next chemoembolization treatment and intend to enjoy Christmas with my family.

I have been asked what I do to help my condition so here goes. I try to eat ten varieties of fruit and vegetables a day, as my son Stephen read of a Mesothelioma patient living for five years with his condition and this is what he accredited his longevity to. I don't often manage 10 a day but usually get in between 7 - 9, which I hope still helps. I also take 'Maximum Antioxidant', which I buy from Holland and Barratt for about £3-4.00 for 30 caplets; I take two a day. They also contain selenium with A, C & E + Zinc, and lots of other goodies. The fruit and veg and these caplets are all high in antioxidants, which helps to mop up any stray cancer cells. Or at least I hope they do.

My friend Debbie Brewer, who is doing amazingly has Mistletoe injections and swears by them. Certainly doctors in France and Germany advocate its use for cancer patients but I haven't tried this route yet, I am not sure why I hesitate, but I do.

I definitely feel that something has changed after my last treatment, I just hope it isn't just wishful thinking though.

I can now start on my Christmas shopping, if there is anything left in the shops!. I can't believe Christmas is only twenty days away!

Today's picture is of the floods that hit our village a few years ago in October 2000, it is an aerial shot.
I really feel for the people who have flooding this year.

It is our village Christmas Market today and it is a well attended do. People come from all over to it. It starts with children singing carols then has lots of stalls and hog roasts, mulled wine and street entertainers and a good time is had by all.

The nuts have survived amazingly.
.

Passed the buck.

2009-11-26T16:37:00.007Z

I have waited until today to update this blog as I was seeing my surgeon Karen Harrison-Phipps this afternoon. The x-ray she took was OK and she was pleased, it didn't look any worse than six months ago. I still feel a bit chemo'd out but am looking forward to the holiday, sunshine here we come.

I still feel a lot going on in my chest and I am sure it is the chemoembolization doing its job.

Three other ladies were diagnosed at the same time as me and I asked my lovely Macmillan nurse Sandra how they were fairing. Three of us are still going but one had died through complications with her second-round chemo. She caught pneumonia and was overwhelmed. I send my condolences to her family. This is one of the big risks with chemo, as your immune system takes a hammering, and why I won't see anyone in my first week of treatment each time.

I have passed the buck for most of my Christmas gift buying by sending cheques to my cousins so they can get their children something that is wanted rather than my choice which could miss the mark. So thank you cousins for doing this for me. This also has the effect of sorting out over 50% of the presents I have to buy, a result!
I will have 2 -3 weeks after the holiday to get the rest and this should suffice.

Today's picture is of one of my own paintings of a winter flower done a year ago. I must say it looks better small like this than the original size.

Still haven't touched the nuts but I keep noticing them, the temptation is soo strong!!!

Day five after second treatment.

2009-11-21T23:56:00.008Z

'I've been reading your blog, it's like watching someone you love having a car crash....................'
This is what my cousin wrote to me, it made me think. I write the blog to keep friends and family up to date but at the same time I am reminding them that I am ill. I am sorry that there is this side effect to the blog.

Feeling pretty spaced and not with it, about the same as I felt after the first treatment. It would help if I could get a good nights sleep but I seem to wake up several times in the night. I will feel like this for a few more days then should improve a lot. It definitely feels as if something is going on in my chest so I am hoping for an even better result at my next treatment on the 4th January.

I am looking forward to our holiday at the end of the month, a few days cruising between the Canary Islands, Madeira and Morocco. The sunshine will certainly be most welcome for us both as this is as hard for Rob as it is for me.

Rob had his swine flu jab today so hopefully this will help as I can't have one for four more weeks. That is if I do have it. After the Prof. telling another Meso patient that he shouldn't have it I am now not quite sure what to do.

Thank you for the several offers of translation, I now have an idea of the blood tests I will need to have before the next treatment, it seems I must get my GP to do them. I am to telephone the German hospital if my bloods are not back to normal before I go again. I wonder what would happen if I didn't get them done?

Today's picture is of the wonderful team I had racing with me in this years Cancer Research Race For Life in Maidstone in May. I am the one in the centre. We walked the 5km and raised over £4.000 between us, thanks to the generosity of our wonderful sponsors. I am hoping to be able to do the race again next year, God willing.

I must seriously start thinking about Christmas shopping when we get back from our holiday. For those who have read an earlier blog we still have our nuts!

Day three after second treatment.

2009-11-19T16:32:00.008Z

It is day three after my second treatment and I must say that this time I can feel a lot more going on in my chest. I am quite uncomfortable in the area that the Prof. has just treated.

Hopefully this is good news and shows that the chemoembolization is doing its job. I did get some soreness last time too but not so early and not so much. Perhaps this means that this second treatment will be more successful!

The Prof. will treat the top front of my lung next time, which is in January.

I have been quite sleepy today and managed a catnap this afternoon. The first week after treatment is the worst, it leaves me feeling exhausted and a bit nauseous, but nothing like conventional chemotherapy did.

I have been out to post my foreign Christmas cards today and I couldn't have even considered doing anything so soon last year on conventional chemo.

I am hearing about so many people with cancer now and it is quite distressing. It is amazing that we can get on the moon but can't cure this awful disease yet. However there are lots of things in the pipeline so I must be more positive.

My family and friends are a real inspiration to me and I really appreciate them.
I do feel a bit humble though when I read of these poor young men getting killed in Afghanistan, at least I have experienced the majority of my life.

Today's picture is of a canoeist I photographed having fun in the Medway near our home. Several groups use the river with varying skills. It is great to see them enjoying the water.

Results of first treatment

2009-11-17T16:04:00.006Z

We arrived on Sunday night for the Monday treatment and found an Ethiopian restaurant called Gojo, I think, and we had to eat the food with our hands. This was quite a surprise. We had a sort of pancake, which we broke up into pieces and scooped up some meat mix. We couldn't use the pancake as a wrap as it was too fragile. The food tasted good but I think I prefer to use utensils. No, they were not having us on, they all ate that way!

Well, it is good news, The area of my cancer that was treated last time in Germany has improved by 5 - 10%. The Prof. was reluctant to put a figure on it but it is nice for me to have some idea of the amount of improvement. It hadn't shrunk but has less pressure, which means it is less aggressive. He says he treats the biology of the tumour. This is a relief, as the treatment could have had no effect. The Prof. seemed quite pleased.
I go again on the 4th January, 7 weeks away. I thought this a long time but the Prof. says it is OK. I had a rougher time of it this time as I had an adverse effect from the tracer they inject so the Prof. can see what he is doing. I went very hot all over, burning almost, and felt violently sick. I managed to hold on until he finished. The treatment takes about 5 minutes. Then I was quite sick for about half an hour until they gave me some extra strong anti-sickness on top of what they put into the treatment. I slept for the next four hours and felt better after that.

Today I was fine for the trip home and still feel OK. I will have to keep away from anyone who is ill for a couple of weeks while my bloods improve again after the chemo.

Apparently I was to have had my blood tested here in the UK before my second treatment but the instruction was all in German so I couldn't read them. Whoops, I know now. The Prof. still went ahead though. I now need to translate the paperwork so I know exactly what he wants for next time. Can anyone read German?

I managed to get my flu injection before I went but will have to wait until the end of December for the swine flu jab as they don't work with the chemo.
But Rob is having one Saturday so he doesn't catch it and give it to me as my lungs are compromised and it could be very serious if I got it.

Today's picture was taken on our holiday in Majorca, my hair was still quite thin but it doesn't show in this photo as it had started to grow very curly due to the last trial drug I was on.

Royal Marsden, Sutton.

2009-11-10T23:55:00.007Z

I had my appointment at the Royal Marsden Hospital in Sutton on Friday. I spoke first to Dr Andre Brunetto about phase one trials and he explained that I would have to be off any other treatment for 4-6 weeks before entering any trials, as they wouldn't know if any subsequent results were from the trial or my previous treatment.

He also said that the whole point of the phase one trials is principally done to find a safe dose .

They give a low dose first, whilst staying in the hospital, then they increase the dose to the full amount the drug company says is appropriate. Then they monitor for a few days, then once a week to check on the side effects.

I also may not be given drugs that are meant for my condition, but they would be cancer drugs.

In fact one man with mesothelioma, the same as me, was given a drug for another type of cancer, but it seems to have had a remarkable effect on his own cancer. This is good news but does make me wonder if my doing trials is a good thing or not. I wouldn't like to be made ill for a drug that isn't even meant for my type of cancer.

I would however like to know the name of the drug that seemed to work for that one man!

The more senior Dr Banerji said that they don't know if the drug is good for mesothelioma, or just happened to really suit this particular man. They haven't yet had enough people try it. They like to have three people at each stage of the trial.

Both Doctors were able to answer my questions and said it would be entirely up to me. Also I could leave a trial at any time without question.

They currently have about thirty-five active phase one trials going on.

The upshot of the meeting was that I would continue with my German treatment, which I had already intended to do. Once the treatment was finished, or if it doesn't work after three treatments, they would see me again.

They did say that they would want me to exhaust any other treatments first. So I guess the trials are done as a last ditch attempt.

I have some thinking to do.

I have had all weekend to think about this matter and still haven't made a decision. I guess I will wait and see if the first German treatment has worked. There are three scenarios, either it didn't work and the cancer is still growing, or it is stabilised, or it has reduced in size. I will know by this time next week.

My photo is of a Cuban Lady. She earns her living by posing for photographers for one tourist peso per picture. This is worth ten of their own pesos and valued at about £1.00.

I have just got back from my ten pin-bowling league and got 136, 159 and 91. You can tell I'm not in the top end of the league can't you. I am somewhat of a erratic bowler.

About the same as my golf actually.

Bonfire night

2009-11-05T16:47:00.006Z

I woke up yesterday morning with a nasty pain in my left ribs. Oh no, I thought, I don't want it to spread to my other lung. As they day went on the pain became worse and worse. Then it started spreading down to my hip. That was a relief as it couldn't be my lung that far down. Then later in the day my arm muscles starting hurting which is when I twigged that I had let off a few golf balls at the driving range the day before and that was why I hurt so much!

Now I have actually read the spiel on turmeric I eat a big pinch of it every day, so if you observe my skin going a very strange yellow colour just pretend you don't notice. You never know this may be the big CURE!
Well, OK it won't be, but I will try almost anything.

Today's' photo is of the sky from our old house taken in February about 4 years ago. It is one of my favourite photos, taken with a cheap camera.

I have just seen my neighbours small children having a picnic, in November, and on their doorstep!. But I must say they really seemed to be enjoying it. I think they are waiting for it to get dark so they let off their fireworks.

My friend Debbie Brewer is having radiotherapy on a lymph node and a biopsy on another this week, as well as moving house too. My thoughts are with her, I bet she will be glad when this week is over.

Trick or Treat

2009-11-02T12:39:00.009Z

Well we had about 50 trick or treaters in the course of one hour. They had all made an big effort to dress up and were quite scary. All of them said thank you for the chocolate bar and wished me a happy Halloween, the children were a pleasure to see. We had a lovely evening and didn't get home until very late.

I have emailed the Prof. as I am quite uncomfortable at night and find it hard to sleep, I even get woken up with the discomfort. I have asked if he can treat my right side next as it is giving me jip, unless he thinks another area is more urgent.. He replied within five minutes and said he could, so that will make me more comfortable if it works, fingers crossed. I am not sleeping well and I always blub easily when I am tired and this can be vary wearing both for me and for others!!

I also have a list of questions to ask next visit as last time after six hours in hospital my brain went into 'institutional' mode and I couldn't recall anything I had wanted to ask. Next time it will all be written down as follows:-

Questions for Prof. Dr. Thomas Vogl.

What bit is being done next?
How many treatments needed?
How long does the plug stay in place?
Do I need Blood tests? (My oncologist seems to think so)
What is the first drip they give me?
Has the tumour reduced in size, if so by how much?
Have the other tumours grown?
What happens about the lymph nodes?

The picture today is of a deserted beach
in the Costa Blanca, we came across it on a visit to Valencia. It went on for miles and was beautiful.

I have just been on one of my walks and my curly hair is acting like a wolly hat and makes my head very hot, but the weather is really uplifting, there is nothing like sunshine to lift your mood.

Holloween

2009-10-31T12:30:00.008Z

I have just come back from swimming, and yes I did remember my costume this time, I always feel virtuous afterwards.

My lovely husband Rob read my blogs yesterday and said he was hurt, as I hadn't mentioned how supportive he is. I feel guilty for this but it is only because I feel so safe, comfortable and loved by him that I am able to relax and not have to worry about how he is towards me. Rob has pretty much taken over the household chores and is a rock in my life. He is always alert to how I am and accompanies me on everything I do. This would be a different type of trauma for me if he were not around. I do worry about him, as this is as hard for him and my family as it is for me. He says he feels helpless but for me he is doing all he possibly could and I love him.

I am having some good feedback and being introduced to some sufferers and carers who are all going through the same thing. It is frightening how many people are getting this disease and that they are all having to pay to have treatment abroad when we could easily do it here as we do for other cancers. It is not a difficult procedure and would benefit those that do not have the funds.

I am going to bring the subject of chemoembolization at my appointment at the Royal Marsden. I wonder if they would be interested?

Today's photo is of some of the old cars that are around in Cuba. When they kicked the Americans out they left all their old cars and the Cubans still keep them going. Some are literally held together with duck tape and string, but they are lovely to see.

Each time I have chemotherapy my navel gets sore, has anyone else heard of this happening?

Tonight is Holloween and we get quite a lot of 'trick or treater's' calling, especially the youngsters from our close, they are so cute. I always wear a scary mask and make them jump when I answer the door.
I have to be careful though as one year a three year old knocked and when I opened the door with a big roar he ran off crying. I did feel guilty, but it was very funny, even his mum laughed which didn't help.

Our house is 20 years old and starting to show its age. We have inset light fittings upstairs that are expiring one by one. They just pop out of the ceiling and collapse. I have my friend Nick, who is a builder, coming to assess them today. We have about six of these lights and they started misbehaving straight after the roof laggers finished lagging out attic. Hmmm.

Kicking and screaming

2009-10-29T13:58:00.007Z

The one thing about having a terminal disease is that you don't want to give in to it so I will, when the time comes, go out kicking and screaming. With this in mind it is always good to have a plan B if the current plan is not working. I hope upon hope that my current treatment does work and will find out if it does soon enough.

Meanwhile I have made noises to my Oncologist Dr. Riyaz Shah in Maidstone about the next step. He is very supportive and suggests that I have a talk with the Drugs Trial guys at the Royal Marsden Hospital in Sutton, Surrey. Dr Shah has got me my first appointment with them for the 6th November which was very quick. Both Dr Shah and my amazing Macmillan Nurse Sandra Wakelin have been so very supportive, they both always mention the positives in my condition and I feel blessed to have such good people routing for me.

Actually, apart from one grumpy Medic who I will excuse as being highly stressed at the time, I have found everybody I have come in contact with absolutely encouraging and willing to see me whenever I want to be seen, which is comforting if I am worried. Also they are more than willing to answer my numerous questions with infinite patience and concern. This includes The Prof.and his wonderful team in Frankfurt.

This is a picture I took in my garden last summer, the Bee posed obligingly for me!

To look at me you wouldn't know that I was ill, I look as fit as anyone else. The main problem at the moment is breathlessness, which catches me out every time if I have to go upstairs or up a slope. I can actually walk well on the flat and try a do an hour-long walk most days. Also I go swimming (when I remember my costume) maybe two or three times a month. It is meant to be weekly and I go with a couple of friends, but if they can't go I am not motivated or keen enough to go alone, so I don't, however we are going this Saturday.

We are also going to supper on Saturday to some very good friends and will meet up with other friends that we haven't seen for some years, so that will be nice.

My foray into currency speculation has backfired, the Euro has got weaker against the pound and I could have got a better rate if I had waited. Still, it is all a learning curve and I expect that over the whole Frankfurt treatment time I will come out about even on the rates; and we are only talking about a few pounds each time anyway.

Robert, my husband went to watch Arsenal play Liverpool last night and my son Stephen invited me over for a curry. I had a great time playing with Joseph, my grandson, and the food was good. Unfortunately Stephen's tonsils started to swell and get sore so I left as my immune system is down due to the Chemo in the treatment I am having. Still, it was a good evening. Also Arsenal won, so Rob was very happy.

I don't know if I have mentioned this but the drug trial I was on caused most of my hair to fall out. My hair is fairly straight normally so it was a surprise to find that the new hair has grown very curly. I now have a head of ringlets!!!. I don't know if it will stay curly or go straight again.

My friend Debbie Brewer

2009-10-28T16:42:00.006Z

I had quite a scare last night. Debbie brewer, who put me onto the treatment of chemoembolization, left a message on face-book to say that the mesothelioma had spread to her chemoembolization wound site and that she thought this was as a result of the treatment.

I am so sorry for Debbie that this has happened and also immediately got into a panic that the same would happen to me. Needless to say I had a pretty tough night worrying about it.

The good news this morning though is that the Prof. thinks that Debbie's problem is 'most likely it is a general lymphatic problem, there is no way for the meso to track through the vessel, because we never touched the cancer'. So we are keeping our fingers crossed and hoping that the enlarged lymph node at the wound site is just responding to infection and is hopefully nothing too serious for her.

Debbie has been a real inspiration to me and others stricken with this dreadful disease, and we all wish her well for a long long time to come.

I have to say I was quite worried and was turning over in my mind whether I would continue with the treatment. Of course I really have no choice but to continue as nothing else is on offer. It is good to know though that I don't have to worry now.

I am getting a bit nervous about my second trip to Frankfurt, as this is when I will find out if the treatment is working for me. Having just done another chemo drug trial that didn't work has knocked my confidence a bit.

This is a picture I took of the sunset from our hotel balcony in Havana, Cuba. I like to add a picture each time to break up the rhetoric a bit.

I just got a good price for the Euro for our December trip, which will be the third. By buying ahead I can get a speculative price by taking a chance that the rate won't change too much. Fingers crossed!

We have booked a holiday, we are going on a Mediterranean cruise visiting Madeira, Morocco and the Canary Islands and it should still be fairly warm too. We have to book pretty much last minute for holidays, as the future is a bit uncertain for me. Still, it is a good excuse to keep having short holidays and we also benefit with late booking prices, so an extra bonus for us!

I actually bought our nuts, yes nuts, ( you read correctly) for Christmas today as we had real trouble getting any near Christmas last year. All we have to do now is to NOT eat them now and then have to buy more!

Chemoembolization

2009-10-26T11:39:00.003Z

Hello again.
Chemoembolization is a procedure where they put a tube into the femoral artery in the groin and feed it up to the vein feeding a part of the cancer. They then squirt into the vein a mix of a type of plastic mixed with chemotherapy drugs. This temporarily blocks the blood supply to that part of the cancer and starves it of oxygen, then the chemo drug gets to work to damage the cancer further.
This is done once to each part of the cancer hopefully getting to most of it. Then it is 'wait and see' to find out if the cancer becomes stable or even shrinks for a while.
This will give me a bit more time and increase the chance of still being here if they eventually find a cure. This treatment, funds permitting, can be repeated when the cancer starts to grow again.
Prof. Dr. Thomas Vogl has been doing this treatment for lung cancer in a trial for 3 years so far, the trial has another 2 years to go. Of the 500 or so patients he is treating about 22 have mesothelioma, and of these about 70% have responded well with either static disease or shrinkage.
I will take my chances with odds like this. At least this treatment gives me some hope, where there is none with conventional treatment.

I found out about Prof. Dr. Thomas Vogl through searching Google and coming across Debbie Brewer, who has successfully had this treatment. What an inspiration she is to like sufferers, she fights and is very vocal in helping the cause. She also runs a blog, have a look, it is on this link http://www.mymeso.org/tags/debbie-brewer/

We offer Chemoembolization in this country for kidney or liver cancer but not for mesothelioma. I don't know why, as this treatment seems to have a good success rate, certainly better than the current UK treatment on offer. There was a petition sent to the government and their response was useless, see it on this link http://www.number10.gov.uk/Page20326 .
This country considers mesothelioma as an old persons disease so doesn't warrant it high enough for putting money into it.
If you want to know more here is a question and answer session from Prof Dr. Vogl http://www.mesotheliomacom-news.com/asbestos/mesotheliomanews/535-aq26awithdrvoglaboutmeso.html

Mesothelioma is caused by asbestos contact, which has been known to cause problems for over a 100 years, but still they condoned its use, in fact encouraged it in the 40's - 70's.

I can't really complain as I have had quite a good life. I am married with three wonderful children who are all so supporting of everything I am trying to do. They also all offered to re-mortgage or give me funds to help pay for the treatment. My sister and her son have also offered to help; what a great family I have. I also have a lot of support from my friends who have all been great, it is a big comfort knowing that others care.

I have had some pain in the area of my lung that had the first treatment, this is hopefully a good thing and shows that the procedure is having some effect, or it could just be my imagination!.
I will know on my next visit, finger crossed!

Christmas Fair

2009-10-24T19:27:00.001+01:00

Thank you for the positive remarks about my blog. Today has been good, I went swimming with friends but forgot my swimsuit (chemo brain) so we just sat and had coffee and chatter, very enjoyable. Trouble is I didn't as feel as virtuous as I would have had we swum. Still I have packed my costume now for next week!

We went to the WI Christmas craft fair and spent some money on one or two nice things, plus some Christmas cards from our local charity 'Gamble', who have built and finance a school in the Gambia. Do look at their web site, they are a charity that spends every penny raised on the school.
http://www.gam-ble.co.uk/..
l also I won a raffle prize, yet to be delivered as we had left by then. It is some sort of shower gel or something... We walked there at a brisk pace to get maximum exercise given the swimming fiasco and the fact that I wouldn't have time for a long walk today.

Spent the afternoon in Maidstone with my lovely daughter Emily and did a bit of retail therapy and stopped for coffee and more chatter; very nice.

I had a phone call from my 2nd cousin Chris Lewis; what a lovely young man he is. I haven't spoken to him for about ten years but it was as if we had only spoken last week. I always had a soft spot for him.

We have spent some time working out the best way to buy Euros as we have to pay ourselves for the treatment in Germany. It is amazing how the rate varies according to whom you speak to. We have found a couple of good online suppliers who give near on commercial rates and this will save quite a bit over the course of treatments.

We go back to Frankfurt on the 15th November for treatment on the 16th, the air fares and the Hotel are already booked. The trouble with Frankfurt is that they have huge exhibition centres and people come from all over the world to them. This means that on exhibition weeks the hotels hike their prices by 300%+ and it gets difficult to find somewhere near to the hospital cheap enough.
The Professor and the staff at the hospital are all very sweet and make me feel comfortable. The hotel we stay at is on the other side of the Maine River and is a twenty-minute walk away; very handy.

We got the train last time to come home from Frankfurt main station but got on the wrong one for the airport. The people on the train were very kind and put us right. One charming lady even accompanied us back to the train station and took us to the correct platform. How nice and friendly the people are in Frankfurt and they all seemed to speak English too.

History, my first blog

2009-10-23T18:16:00.001+01:00

I am going through that horrible stage of cancer when you know it is going to kill you but you want to do anything to delay the inevitable. I have Mesothelioma, a cancer caused by asbestos. There is no cure and no way of avoiding death.

I have had a pleurectomy done by Karen Harrison-Phipps, my surgeon at Guys Hospital in London. What an amazing lady she is.

I have had main line chemotherapy, Cisplatin and Pemetrexed. This halted the growth for a few months.

I have been on a drug trial for Sorafenib which made most of my hair fall out but unfortunately didn't work for me..

Now I am undergoing Chemoembolization with Prof. Dr. Thomas Vogl in Frankfurt who says he can help me. This is not a cure but may delay growth or even shrink the tumours for a while.

I am interested in anything anyone can tell me about the disease that may help me.

I did the Cancer Research Run for Life in May and raised an amazing £4500.00 with my team of six friends who were great. I would like to still be fit enough next May to do the race again. I say race, but I didn't run but walked the whole course. The whole team crossed the line together. An amazing experience.