Thursday, 26 November 2009

Passed the buck.

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

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

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

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

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

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

Saturday, 21 November 2009

Day five after second treatment.

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

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

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

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

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

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

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

Thursday, 19 November 2009

Day three after second treatment.

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

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

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

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

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

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

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

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

Tuesday, 17 November 2009

Results of first treatment

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

Well, it is good news, The area of my cancer that was treated last time in Germany has improved by 5 - 10%. The Prof. was reluctant to put a figure on it but it is nice for me to have some idea of the amount of improvement. It hadn't shrunk but has less pressure, which means it is less aggressive. He says he treats the biology of the tumour. This is a relief, as the treatment could have had no effect. The Prof. seemed quite pleased.

I go again on the 4th January, 7 weeks away. I thought this a long time but the Prof. says it is OK. I had a rougher time of it this time as I had an adverse effect from the tracer they inject so the Prof. can see what he is doing. I went very hot all over, burning almost, and felt violently sick. I managed to hold on until he finished. The treatment takes about 5 minutes. Then I was quite sick for about half an hour until they gave me some extra strong anti-sickness on top of what they put into the treatment. I slept for the next four hours and felt better after that.

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

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

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

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

Tuesday, 10 November 2009

Royal Marsden, Sutton.

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

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

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

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

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

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

The more senior Dr Banerji said that they don't know if the drug is good for mesothelioma, or just happened to really suit this particular man. They haven't yet had enough people try it. They like to have three people at each stage of the trial.
Both Doctors were able to answer my questions and said it would be entirely up to me. Also I could leave a trial at any time without question.
They currently have about thirty-five active phase one trials going on.

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

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

I have some thinking to do.

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

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

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

About the same as my golf actually.

Thursday, 5 November 2009

Bonfire night

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

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

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

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

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

Monday, 2 November 2009

Trick or Treat

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

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

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

Questions for Prof. Dr. Thomas Vogl.

  • What bit is being done next?
  • How many treatments needed?
  • How long does the plug stay in place?
  • Do I need Blood tests? (My oncologist seems to think so)
  • What is the first drip they give me?
  • Has the tumour reduced in size, if so by how much?
  • Have the other tumours grown?
  • What happens about the lymph nodes?
The picture today is of a deserted beach
in the Costa Blanca, we came across it on a visit to Valencia. It went on for miles and was beautiful.

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