The good news is that I my thyroid is fine. The bad news is that I have many more tests to come to determine the cause of my weight gain. The doctors are considering a condition known as cushing's syndrome - an illness usually associated with steroid use but it can also be triggered by other factors. I'm back at the hospital next Wednesday for some special blood tests but first I have to carry out various tests myself at home on Monday and Tuesday. Finally, we met with the QEHB charity today who kindly loaned us collecting buckets and wristbands for our charity ride.
Tuesday, March 3, 2015
With two hospital appointments on the horizon I am a little anxious. I should however discover what is leading to my weight gain as the results from my thyroid tests should be back. If the thyroid is clear then in should be a simple case of water tablets to clear the excess fluid I am carrying.
Monday, March 2, 2015
It's a year today since our first charity ride - and the weather has been awful again. As March has been terrible in weather terms again, it has reinforced our thoughts that our ride has to be held in April - or later. Meanwhile, I'll be helping the charity Anthony Nolan in the coming days as they launch a campaign to help dispel the myths surrounding stem cell donation.
Sunday, March 1, 2015
This coming week is going to be exceptionally busy as I have two appointments on Wednesday. Having to get to Birmingham for the first one at 9am will mean having to leave home before 7am. We are also meeting with the charity QEHB to discuss our BONE-shaker MARROW-thon motorcycle plans.
Saturday, February 28, 2015
There was a huge scooter event at the National Brewery Centre today so we popped along in the hope of attracting some extra riders to our fund-raiser in April. The good news is that our promotional banner for the ride is now on display for drivers to see.
Friday, February 27, 2015
Thankfully I am now fully recovered following the side-effects from my latest injections. I suffered 24-hours of feeling depreadful and expected to be returning to hospital but I managed to contol the fever and swollen arm myself at home.
Thursday, February 26, 2015
Thankfully I feel much better today - although my arm is badly swollen following the injection. It was a good job I was feeling better as we had an appointment at the National Brewery Centre with the blood bikers for a promotional photograph. A photo to partly promote our ride but also their services.
Wednesday, February 25, 2015
My predictions were correct. Throughout today I have felt increasingly worse following my injections yesterday. My temperature also spiked to 38.8 which put us on high alert for a possible hospital visit - thankfully I was able to reduce this with paracetamol tablets.
Tuesday, February 24, 2015
I have been back to the doctors again today for more injections. Today's jabs were another shot of pneumonia and diptheria. For some reason, these injections hurt more than previously - I may be in for a bad night.
Monday, February 23, 2015
I am starting to experience some timgling and pain in my scalp. The last time this happened, I was later diagnosed with shingles and was hospitalised. I really hope this is not the case this time.
Sunday, February 22, 2015
It may be Sunday but we had some positive feedback from Burton College today. We have asked them if any students may be interested in helping with street collections at our fund-raiser as we now have a licence from the council. Early indications suggest this may be happening.
Saturday, February 21, 2015
We always attract a high number of blood bikes at our charity ride and as they are now making more and more trips to the Queen's Hospital in Burton, we are planning a joint promotional photo this week. The photo if we can arrange it in time will be at the National Brewery Centre with some blood bikes and us with our new BONE-shaker banner.
Friday, February 20, 2015
The new online petition has started well and has already attracted a few hundred signatures. I know my original petition needed 100,000 signatures before anyone would take any notice and I suspect this one to be the same. The difficulty with an election on the horizon is that these signatures have to be gathered before the end of March.
Thursday, February 19, 2015
It's been a busy day on social media as the new petition regarding the cancer drugs fund was publicly launched. The petition is a joint initiative between leukaemia, bowel and prostate and kidney cancer charities.
Read about the campaign on the Leukaemia CARE website:
Wednesday, February 18, 2015
There have been a few changes since I launched my petition calling for a reversal of the changes made to the cancer drugs fund.
My petition just concerned blood cancer patients and there were many other patients with different cancers fighting their own corners. After a few weeks of planning, it has been decided that one joint multi-cancer approach would be better and I have been asked to represent the leukaemia front. The new joint-charity joint-cancer petition officially launches tomorrow and you can add your name to the petition here:
Tuesday, February 17, 2015
The mystery over whether or not I have a hospital appointment tomorrow continues. I've come to the conclusion that without having official confirmation of an appointment, I'm not going to make the 70-mile round trip to Birmingham and waste time. When I next see my usual consultant I will let him chase up what's gone wrong.
Monday, February 16, 2015
I'm certain that I am meant to be seeing a new specialist on Wednesday. However, as I don;t have an appointment letter, I ventured into telephoning the hospital.
After speaking to four or five different people and sending an email, I'm still no further forward. The appointment is needed but at the same time I don't want to waste my time and money travelling to the hospital if I don;t have a slot booked.
Sunday, February 15, 2015
I'm coming to the end of my two week trial without taking my leukaemia drugs and unfortunately, I haven't noticed any difference. The doctors wanted to check if it was the tablets causing fluid retention but as there hasn't been any noticeable changes, it probably isn't down to them.
Saturday, February 14, 2015
Each day I now try and get out and about for a little fresh air and exercise. That is easier said than done at this time of year when the weather is so unpredictable but it is a regime I have been sticking to for the past couple of weeks.
Friday, February 13, 2015
This weekend marks the one-year anniversary since I was placed in remission from leukaemia. I will have been cancer-free for 12 months without any sign of relapse.
I may continue to suffer other side-effects, but at least I am well-clear of leukaemia.
Thursday, February 12, 2015
I've now done more than a week without taking any of my leukaemia tablets. This trial is to test if it is the tablets - Nilotinib - are causing water retention. After seven days I haven't noticed any changes which is unfortunate as I was hoping this may have answered some of my ongoing issues.
Wednesday, February 11, 2015
Today has all been about my charity motorcycle ride again as the publicity stories are appearing already in the pages of motorcycle magazines and websites. We are also 90 per cent of the way to securing a very special bike for the day of the ride. It will certainly attract a lot of attention if we can sort the deal in time. Meanwhile, Hardy Signs has supported my ride again by producing another amazing banner for us:
There has been some significant progress in relation to my charity motorcycle ride.
I've applied for a street collection licence which will allow us to collect money in charity boxes on the day and I've been liaising with the police with regard to the plans. A press release has also been arranged through a specialist PR agency, this will be sent to loads of motorcycle magazines.
Monday, February 9, 2015
It's usually me who is the patient but this week it's my husband who is booked in at the doctors, the hospital and the opticians.
There has also been progress in relation to the online petition surrounding the Cancer Drugs Fund. It has been decided that the best way of securing a change of policy is if all of the various cancer charities join forces and campaign together. I have been asked to represent leukaemia patients.
Sunday, February 8, 2015
Organising our charity motorcycle ride takes many months of behind-the-scenes work. Today we have made a small impact on the huge list of tasks to complete in the next few months. Meanwhile, the numbers attending keeps increasing.
You can find details on the ride here:
Saturday, February 7, 2015
I am enjoying not having to take some of my medication as it is giving me a break from fasting. My usual routine means I cannot eat for two hours before I take the tablet and for one hour after - giving me a window of three hours when I can only drink water. And I take those tablets twice a day so this takes up six hours of an average day.
Today marks the one year anniversary since I marked 100-days post transplant.
If you remember, reaching the 100-day milestone was a major achievement as this was the time frame when things were most likely to go wrong.
Thursday, February 5, 2015
Wednesday, February 4, 2015
On World Cancer Day I was back at the hospital. I'm going to stop taking my anti-leukaemia drugs for two weeks to see if they are causing fluid retention. I am due to see a specialist in two weeks' time so this trial will help formulate some results. I am also being referred to an eye doctor as I am starting to suffer with a few vision problems - another common side-effect of a transplant.
Tuesday, February 3, 2015
Monday, February 2, 2015
Make sure you mark Wednesday in your diary - it's World Cancer Day.
This day enables people to unite around the World with one common theme - cancer.
To support the event in the UK, Cancer Research charity shops are selling special 'unity' wristbands for £2. My local charity shop has already sold out - has yours?
Sunday, February 1, 2015
The first of many publicity articles appeared in the press yesterday and already it is helping to spread the word. Physical numbers may not rise as a result immediately, but having an online story enables others to share the news on your behalf and reach a wider network of friends and supporters.
Saturday, January 31, 2015
Thursday, January 29, 2015
Monday, January 26, 2015
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 22, 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 21, 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 20, 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 19, 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