My mouth is still sore so I am still having to resort to prescription-strength mouthwash to ease the pain. You'd think it would only be spicy foods which caused the stinging sensation but I'm finding I can eat certain spices without any pain and then the plainest of foods sets my mouth on fire.
Thursday, January 23, 2015
Today, completely without warning, my mouth has developed soreness. I have had to resort to using some of the prescription-strength mouthwash I was issued when I first left hospital. I have prided myself on not having to use this much but today I was left without a choice. I just hope the various niggles I am currently experiencing are not late bouts of GvHD - a condition whereby your donor cells starts to attack your own body.
Wednesday, January 22, 2015
After my dealings with the doctors earlier this week, I've now got my prescription to help ease some of the pain and discomfort I have been suffering in recent weeks. I just hope it is fast-acting as standard pain-killers have been of little use.
Tuesday, January 21, 2015
I've been in touch with my GP today after days of pain and discomfort - I'm hoping the prescription that's waiting for me is the answer to my problems.
Aside from my grumbles, I'm pleased to say that stamps are still arriving on a daily basis for my campaign and signatures are slowly being added to my Cancer Drugs Fund petition.
Monday, January 20, 2015
I've been suffering pretty much daily for the past three weeks or so with bouts of pain and discomfort. I've tried pain killers and I've given things time to right themselves naturally but I think it's time to pay a visit to the GP. Hopefully I can get an appointment to be given the once over in the next couple of days.
Sunday, January 18, 2015
My online petition regarding the Cancer Drugs Fund is slowly progressing. It received a boost today thanks to a couple of television personalities using Twitter to promote the web link. As we need 100,000 signatures before someone takes notice of the issue, every signature counts - especially as you yourself may count on these de-listed drugs one day.
Saturday, January 17, 2015
I'm continuing to receive stamps and donations through the post - thank you for saving them for me over the Christmas period. Last week I posted a hefty box of stamps to Leukaemia CARE and already I have enough to send another sizeable donation. Your stamps help the charity maintain a 24/7 helpline for patients and their families.
Friday, January 16, 2015
My petition has been approved and is now online. i now need to find 100,000 signatures so please sign and share. Share it with your friends, neighbours and work colleagues as it is only through widespread sharing and the power of social media that we will hit the 100,000 mark.
Thursday, January 15, 2015
After a little deliberation and some useful guidance from the charity Leukaemia CARE, I have submitted an online petition. If approved, the petition calls for the Cancer Drugs Fund panel to re-analyse its findings surrounding certain de-listed blood cancer drugs. There may be cheaper and newer drugs on the market, but the ones which have been de-listed are tried and tested and proven to be effective. Once the petition is approved and online, please sign it in support.
Department of Health
It was announced on Monday, January 12, 2015, that life-extending cancer drugs are to be removed from a list of medicines that are approved for funding via the Cancer Drugs Fund.
Bosutinib and Dasatinib for blast-phase Chronic Myeloid Leukaemia;
The de-listing of Bortezomib for relapsed Myeloma, Mantle-Cell Lymphoma and Waldenstrom Macroglobulinemia;
The de-listing of Bendamustine for non-Hodgkin Lymphoma;
The de-listing of Ofatumumab for relapsed or refractory Chronic Lymphatic Leukaemia;
A re-analysis of the decision to reject Vemurafenib for all Hairy Cell Leukaemia patients and also a re-analysis of the rejection of Idelalisib for Chronic Lymphatic Leukaemia.
Wednesday, January 14, 2015
I've been looking closer at the Cancer Care Fund since changes were announced earlier this week. I am now consulting with a couple of leukaemia charities so that the true impact of the changes can be monitored. I'm interesting in starting an online petition to call for a re-think on some of the drugs, but before this can happen, I need a better idea of patient numbers and costs. There are a couple of areas causing me concern but it's too complicated an area to jump in with both feet until further research has been carried out.
Tuesday, January 13, 2015
You've probably seen the news surrounding the changes to the Cancer Drugs Fund.
It's wrong to say I am lucky, but my current medication doesn't fall under the remit of this fund. However, if this medication I take ever stops working - which it could as my last medication stopped working - then I am firmly into Cancer Drugs Fund territory.
I welcome the extra investment being pumped into the fund but the axing of certain life-prolonging drugs leaves me worried. Who is to say what drugs will be axed when the review body meets next time? Should pound signs play such an integral part when deciding the best medication to treat a patient?
Monday, January 12, 2015
Did you see my home from home on the television tonight? The BBC One show Inside Out ran a very interesting feature on organ donation - an issue very close to my heart.
The hospital at the centre of the programme was the Queen Elizabeth Hospital in Birmingham and the doctor who was the main focus was my chest consultant.
Being so familiar with the hospital and its doctors must show I spend far too much time in Birmingham.
Sunday, January 11, 2015
I'd like to say a big thank you to everyone who came along today and supported my marathon runners as they held a body combat session. Over the next few months there will be lots of little fund-raising events taking place as the runners need to hit their target before April. Please let me know if you'd like to help or donate.
Saturday, January 10, 2015
My team of marathon runners are in action tomorrow as they try and raise a few more pounds to help enable them to hit their London Marathon sponsorship target. We've got just four months left to help them raise another £4,000 so the three runners hit their minimum entry total of £5,550.
It's a tough challenge and that is before they even think about the run itself.
Friday, January 9, 2015
I posted the latest batch of used stamps to the charity Leukaemia CARE today. Readers listened to my pleas for stamps over the Christmas period and they have been flooding in along with some special first-day Royal Mail covers. This latest batch should be worth fair few pounds to the charity.
Thursday, January 8, 2015
I'm not sure whether I should be waiting on tenterhooks for the hospital to call me following yesterday' blood tests or if I'll just learn about them at my next appointment.
If the thyroid test does show I need medication to bring either an over-active or under-active gland back to normal, I'd like to start taking the relevant tablets as soon as I can.
I'm not particularly worried about the results because it is just one of a massive list of problems I am likely to encounter - and anything is better than having leukaemia.
Wednesday, January 7, 2015
It's been a very busy and tiring day at the hospital. The lung function test appeared to go well and I know that the results are better than the last time I did the test which is a promising step.
Over the past few months, I've noticed that I am gaining weight without reason and this is now being investigated. One of the side-effects of my tablets is water retention and this is one possible cause. Another side-effect of both the medication and the transplant itself is thyroid problems - both under-active and over-active. I've had extra blood samples taken today so that my thyroid can be monitored and corrected with medication if required.
Tuesday, January 6, 2015
As I'm at the hospital tomorrow, I'm having a day of anxiety today. I still get extremely nervous in the run-up to my appointment as so much hangs on the results of just a simple blood test. It's likely to be a long day as I have to also squeeze in a lung function test for my chest consultant plus I need a wheelbarrow full of drugs.
Monday, January 5, 2015
As Christmas now officially draws to a close, I'd like to thank the many readers who either sent me cards, letters or donated stamps. You have followed my journey since my diagnosis in 2013 and continue to support me and the charities I support. I touched your hearts and now your kindness is touching mine.
Sunday, January 4, 2015
I keep having occasional bouts of heartburn. I have never suffered from heartburn before but in the past few months I keep having instances after eating certain foods. I can only assume this issue is side-effect of my tablets reacting with certain foods.
Saturday, January 3, 2015
Everything gears back to full speed next week as many services scaled-down over Christmas return to normal. It's back to the hospital on Wednesday for two appointments. I have my routine clinic appointment as well as a lung function test as my recurrent chest problems continue to be monitored.
Friday, January 2, 2015
Another day and yet another blood cancer death hitting the headlines. This time it is Deborah Bone - the lady who inspired the Jarvis Cocker/Pulp hit Disco 2000 in 1995. Deborah died from multiple myeloma - a form of blood cancer which affects plasma in bone marrow. The attention this death is receiving because of the Jarvis Cocker link will hopefully help to raise awareness and funds for blood cancer charities.
Thursday, January 1, 2015