Thursday, 28 January 2010
February thoughts.
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 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?.