Wednesday, 29 December 2010

Worse ever side effects.

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.

Thursday, 16 December 2010

December in Frankfurt

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.

Friday, 26 November 2010

Yet again to Germany.

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.

Sunday, 7 November 2010

8th Treatment in Frankfurt.

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.

Friday, 29 October 2010

St. Bart's Scan Results

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.

Wednesday, 6 October 2010


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.

Tuesday, 21 September 2010

Meso Warriors

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.

Saturday, 11 September 2010

Frankfurt Treatment

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.

Friday, 27 August 2010

Devastating news.

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.

Tuesday, 10 August 2010

I Am Happier Now.

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.

Wednesday, 4 August 2010

Off to Frankfurt again....

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

Monday, 19 July 2010

Back to Germany

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.

Saturday, 10 July 2010

Here we go again.....

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.

Tuesday, 6 July 2010

St. Bart's Visit.

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.

Thursday, 1 July 2010

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.

Saturday, 19 June 2010

Not good news.

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.

Wednesday, 2 June 2010

May and Mistletoe

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. .

Sunday, 16 May 2010

Race for Life 2010

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!!!!

Saturday, 8 May 2010

Good news after check-up in Germany

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.

Wednesday, 28 April 2010

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

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

Saturday, 3 April 2010

Easter Greetings 2010

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

Saturday, 20 March 2010

A month after Mistletoe

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.

Saturday, 6 March 2010

Mistletoe follow up.

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.

Monday, 22 February 2010

Mistletoe reaction

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.

Saturday, 20 February 2010


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.

Friday, 5 February 2010

Fourth Treatment.

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.

Thursday, 28 January 2010

February thoughts.

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.

Tuesday, 19 January 2010

'Race for Life' sign up

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!!!

Wednesday, 13 January 2010

January snow time.

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!

Saturday, 9 January 2010

After the third treatment.

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.

Tuesday, 5 January 2010

Very good news

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.

Saturday, 2 January 2010

Happy New Year

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?.