Ronny: the last page

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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

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.

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.

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......

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

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.

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

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.

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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.

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.