Archives For Musings

Musings upon different topics that aren’t everyday.

On the 11th of July, NHS England announced which treatments and services it will make available to patients. There were over one hundred policies considered, and twelve of them were “cost-neutral or cost-saving” and therefore confirmed. Twenty two more policies were split into levels 1-5, level 1 being the cheapest and of greatest clinical benefit, and level 5 being the most expensive and of lowest clinical benefit. There is enough money to pay for the treatments in levels 1-4, although that may change now a judge has ruled that the NHS can pay for PrEP.

Level 2 includes more treatments for Graft vs. Host Disease, which is excellent news. It also includes penile prostheses for erectile dysfunction. No offence to the people who need this, but it hardly seems quite as important as saving someone’s life. Level 4 includes stem cell transplants for people with Lymphoplasmacytic Lymphoma. It’s expensive, but not so much that it isn’t worth the money.

In Level 5 is “second allogeneic haematopoietic stem cell transplant for relapsed disease”. This decision was based on this public consultation, and I have a lot of issues with it.

The epidemiology and needs assessment uses evidence from one hospital in the USA from 1989 and 1998. Data from one hospital, between eighteen and twenty seven years ago. So we’re not taking into account any advances in science or understanding since 1998. This seems purposely ignorant considering the NHS had been providing second transplants routinely up until 2013 and has information on all the patients they were provided to. We know how long patients in this country using the methods that are standard are surviving having had second stem cell transplants, yet this is being completely ignored. I can’t quite understand why.

They say there is enough evidence to give second transplants to a few, very special people that will somehow be chosen through an exclusive selection process. This sufficient amount of evidence is very limited (an oxymoron, surely?) and rather poor, but they have no intention of trying to obtain more evidence by actually giving more people the treatment that could save their lives and turning second transplants back into a routinely funded policy.

I have tried to simplify the evidence review summary:

Do transplants work?

There is very little published evidence, and the evidence that exists comes from a couple of studies over a period of more than twenty years. The evidence might be biased, and the people involved in these treatments are so varied, there are so few constants that the results are not what one would call reliable, so the outcomes fluctuate. It is clear from the evidence that they do work, but sometimes people die and there are a myriad of reasons for that.

Are they cost effective?

We found one study that recorded the cost of second transplants, but not the cost effectiveness. In short: we don’t know.

Could we determine some criteria to decide who deserves a chance to live?

It seems so. If they relapse after a year, that would be good. Being under forty would also help. If the person’s relapse is caught early, that might be favourable, and if they had full-body radiotherapy.

(I would fulfil two of these criteria: being under forty and having my relapse caught very early. But seeing as it was only four months after my first transplant and radiotherapy wasn’t part of my treatment the first time, I’d be sent home to die.)

When the panel reviewed data from the British Society for Blood and Marrow Transplantation (BSBMT) database for the period 2007-2012, they found that survival outcomes for allogeneic transplants using matched unrelated donors are nearly as good as those using sibling donors; five year overall survival of 30% is comparable with the outcomes of first transplant for some subgroups of acute leukaemia.

If this is the case, why are second transplants considered such poor value for money when they have almost the same outcome as transplants using the best kind of donors, which are routinely funded?

The final decision was that patients whose first stem cell transplant results in relapse should be offered a second transplant if they were in complete remission before the relapse, the relapse is at least twelve months after the first transplant, and they are deemed clinically fit to undergo the transplant by a team of specialist doctors and nurses. However, if a patient relapses within a year of the first transplant, they should not be offered a second transplant.

This is appalling. I am greatly upset by it, as I relapsed only four months after my first transplant. My first transplant came from my sister, who was a 100% match. However, I did not get any Graft vs. Host Disease, which is defined in the consultation as such:

“Graft-versus-host disease is a common complication following an Allogeneic tissue transplant where white blood cells (immune cells) in the tissue (the graft) recognise the recipient host as “foreign”. The transplanted white blood cells then attack the host’s body cells. Graft-versus-leukaemia response is the desired effect following Allo-HSCT where donor cells eliminate malignant cells.”

Essentially, a bit of donor/recipient cell fighting is desirable, because any lurking malignant cells are also destroyed. I had none of this with my first transplant, because my sister was almost too good of a match. I was so lucky to have my only sibling be a match when those odds are just one in four, yet so unlucky as to have that be the thing that came back to bite me. And that would be the reasoning that the NHS would now use when I would be informed that treating me would not be good value for money for the taxpayer. I would be offered chemotherapy to try to keep the cancer at bay, and/or palliative care should I wish to just die as comfortably as possible, the costs of which can amount to equal those of a transplant itself.

Today I received a letter from my MP, Andrew Mitchell, in response to an email I sent via Anthony Nolan’s campaign to ask MPs to support funding for second transplants. He was not particularly interested in doing so. He has met me, and I reiterated this and my story in my email, yet he still decided to write back and say that actually, treating me has been very poor value for money and basically, the NHS should not have bothered giving me the past eight years.

He also felt the need to inform me of just how great the government have been at investing in improving the provision for stem cells for patients who need a transplant. We appreciate that, but it seems somewhat redundant when that provision is not allowed to be used for certain people whose lives could be saved just because their disease came back earlier than someone else’s. It seems barbaric to me to decide that these people are not “cost-effective”. I think it is the terminology that bothers me, like they have gone out of their way to try to forget that these are real people that this decision will affect. Human beings with parents, siblings, children who simply experience bad timing and for that, they are written off as unworthy of help. People who may have worked a long time, paying taxes, expecting the NHS that they have put money into to help them in their time of need, being told that that money is going to pay for a prosthetic penis instead of a treatment that has a good chance of saving their life. Or people like me, who get an aggressive cancer at sixteen and never have a chance to work but grew up believing that as a wealthy first-world country, our healthcare system was there to treat the sick and will now be informed that actually, no, it’s not for everyone. Not if you’re not “cost-effective”.

Do the right thing Jeremy. We don’t deserve to die.

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I’m not going to vilify Kylie Jenner for using a wheelchair in a recent photoshoot for Interview magazine. I am sure that she was sold the concept by Steven Klein and the team at the magazine, and would have been convinced it was a good idea. She won’t have had advice from any sensible person who might have recognised that this was possibly not the best plan. Attacking her personally almost legitimises the feature, in which she talks about how she constantly worries that people are making negative comments about her. This was the reasoning behind the entire story of the shoot, “placing Kylie in positions of power and control” and “to unpack Kylie’s status as both engineer of her image and object of attention.” 

It is these words I have a problem with. Being sat in a wheelchair is not a position of power or control. In a manual wheelchair, I don’t have the ability to self-propel, and am entirely reliant on a companion to get me anywhere. Even in a motorised chair, I still can’t just go out and use public transport to get where I need to go on a whim. Every trip I make is planned, I have to arrange assistance to get me on and off trains, and you can’t imagine how it feels to need to alight and have no one show up, with each minute that goes by hoping that the train doesn’t try to leave with you stuck waiting for a ramp. I have literally no choice about how I get around, what speed I go at and where I can and cannot go. Despite changes in the law twenty years ago, so much of the world is still inaccessible to me, and I guarantee that if you are able-bodied, you don’t notice. 
 
Regarding being “an engineer of [one’s] image and object of attention”, to use a wheelchair to demonstrate this is laughable. In a wheelchair, I have no power over how I’m seen by the public, if I’m seen at all. Just this week, a man didn’t see me in front of him, tripped, and fell on top of me, his elbow digging into my head and his other hand on my lap. He apologised, but then rushed off without even asking if I was alright. It made me feel like nothing.
 
The rest of the time, I am desexualised and infantilised. As soon as I’m in my wheelchair, any prospect of being seen as a potential partner is out the window. Any prospect of even being treated like an equal. Once, when out shopping with my mother, she decided to fill in a form to get a store card. I was in my manual chair, so couldn’t go off by myself, and I just sat and waited like anybody else would. However, when she was finished, the sales assistant leaned over the desk to me and said, “And you’ve  been very good, haven’t you?” I’m not sure what she was expecting, perhaps for me to have some sort of fit or start screaming the place down, and her only reasoning for treating me this way was because I was in my chair. 
 
Kylie did speak about the wheelchair in the interview, comparing the use of it to the limitations she faces because she’s famous. I’m not entirely sure what these are, with her being a young, beautiful, able-bodied, wealthy woman. I understand that she might find it sometimes difficult to be discussed in the press so much, but that is in no way the same. Her privilege offers her any opportunity available, whereas my disability has taken so many away. At eighteen I suddenly lost the entire life I had planned, in total opposition to Kylie, whose life is just beginning. I understand other wheelchair users are upset by these comments because they feel their chair gives them freedom, but I just can’t see mine that way. I wish I could, but I have yet to let go of being ambulant.

Fame is not a disability. My illness stole my future, and Kylie Jenner has no idea how that feels.

The 17th of August. 

On, I had such a great sleep. Only briefly interrupted, and I was in bed until ten, although I could easily have stayed much longer. I got dressed without doing any hair or makeup because I really wanted breakfast. I have felt human enough to eat proper things today. This morning, I blogged the last four days which took a while, and Alison came over to borrow some cake tins as she has to make more cake for a chess thing that Chris has tonight. 

This afternoon, I’ve been to the GP’s to have the nurse take the stitches in my leg out. Took about twenty seconds. Then we ended up on a little jaunt to find batteries. First, Pets at Home for hamster food, then we went to Boots for a watch battery, but they didn’t have the right one. We tried Comet, but no joy there either. Then I had a brainwave and thought I’d look at Maplin who did indeed have the correct battery in stock so we went there and I bought two. 

Lots of Becky and James’ proper wedding photos are online now and they’re so pretty. Except the one in which it looks like I’m asleep. 

The 18th of August. 

Today is eight years since I was diagnosed with cancer. Eight years since Mark sat me down, said “We found leukaemia cells in your bone marrow” and everything else was white noise. A third of my life consumed by being sick, scared, strong, and now suspended in a state of fine-but not-fine. 

It’s a hard place to be. In life, you usually are working towards something, you have things to do each day, objectives to aim for, goals to achieve. I don’t have those things. I’m trying really hard to think of reasons why I should keep going. I find it difficult to envision myself in even a couple of years, let alone getting into my thirties and beyond. 

Part of me doesn’t know if I want to. Years and years of every day not having any point to it. I like it when people sign up to be donors because of me, but is that enough? I could only leave home if I employed a full-time carer or had a partner to look after me and both of those ideas are impossible. No man is going to take on the burden of me, and I think living on my own would make me so lonely I’d kill myself, never mind the financial issues. 

I know I should be grateful to still be alive and I am; I’ve done wonderful things and been incredibly happy, but I just sometimes wonder if it would matter if I wasn’t here at all. I am both sad and not sad. But honestly, a little bit more sad. 

Reasons Why #IGiveASpit.

August 4, 2015 — 3 Comments

Eight years ago, someone sat me down and told me I had a rare form of leukaemia, a kind that was very unlikely to be dealt with by just having chemotherapy, and I would need a stem cell transplant. I didn’t need Anthony Nolan that time, because I was lucky enough to have a big sister who was a 100% match for me. What isn’t always immediately mentioned with stem cell transplants is that when dealing with cancer, the doctors want your donor to reject you a little bit, in a condition called Graft vs Host Disease. The donor cells recognise the recipient as foreign and they attack, which can be troublesome, but they also attack any remaining cancer cells lurking in the bone marrow. I didn’t get any GvHD from my sister because she was so good, and four months after my transplant, I found tumours in my face. I’d relapsed. I’d been previously told that if the transplant didn’t work, there wasn’t anything that could be done, but that wasn’t strictly true. I was offered a second transplant, but I had about an 80% chance of dying. I decided it was worth the fight. I couldn’t use my sister again, and we needed to search the world. 

We found a donor in Germany, but he was then suspiciously unavailable to donate on the day he was needed, which was the day of a big German football match. We were all set to use my dad’s cells, when a new German came on the scene. He was 18, not as good a match as the previous one, but much, much better than my dad. I got a dangerous amount of GvHD from him, mostly in my gut and liver. The lining of my stomach was destroyed, and I had no enzymes to digest anything, so was IV fed for over a year. Eventually that healed though – my liver was not so lucky. The damage from the GvHD was too great, my bile ducts had shrivelled to nothing, and I was put on the liver transplant list with about a month to live. I got it with just a few days to spare. 

However, some of the stem cells that came with my liver went on a journey to my bone marrow, decided they quite liked it there, kicked the German out, and so I effectively had a third, accidental stem cell transplant. This one gave me chronic GvHD in my lungs which prevents me from living anything resembling a normal life, and now I need another liver transplant because my bile ducts are harbouring superbugs which will kill me, but my lungs won’t support me through the operation. However, they’re also not bad enough to warrant replacing, and that isn’t going to change. 

My point is this: I am a miracle, indescribably lucky to be alive right now, and I wouldn’t be here without my donor’s decision to register with Anthony Nolan. I am incredibly grateful, but I know that I could have the life that so many of my transplanted friends have, free to live almost as if this never happened. If I’d had a better matched donor, I might be able to walk up the stairs without getting breathless, or wake up each day not worrying about coughing up junk from my lungs. I might not have had to make the phone call to my sister, my original donor, to utter the immortal words, “They said there’s nothing they can do”. That was the hardest thing I have ever had to do. I don’t want anyone else to make that call. That’s why I want as many people as possible to register to save lives. That’s why #IGiveASpit.

Register to donate here.

Days like this are really great. As in, the reason I stay I alive great. When the doctors told me in October ’13 that I needed another liver transplant, then that I couldn’t have one, I couldn’t see myself getting past the next six weeks, forget next few years. But I’m somehow still here, and I could never have imagined some of the things that have happened. Being in the news all over the world, meeting some of my favourite comedians, even now having the honour to call some of them my friends. Today I’ve been at the agency Heidi works at in Bristol because they were presenting a cheque to Anthony Nolan for over £4500, a charity they chose because of me, and it feels so incredible to know that so many donors will be registered and possibly lives saved in my name. I may not have a voice right now, but my message is still being heard. No doubt I will continue to have difficult times, because frankly my situation is totally shit and that isn’t going to change, but when I do, I remember that there is light in the darkest of places, and I have candles everywhere. 

The 14th of March.

Today has been a day off extremes. This morning was Saturday Kitchen and a blog post, but no Guardian as Daddy had taken the Galaxy to get a new tyre, so Mommy hadn’t gone shopping. Thankfully, he was back by half past eleven which was when we wanted to go out to brumyumyum at King’s Heath for tasty streetfood! I had a Chorizcow burger from The Flying Cows and Mommy had a toastie from TSK Brunch. After getting grease all over my face and fingers, and being grateful for the wipes in my bag, we went to Bake to buy masses of cakes from the two lovely baking fellows. A red velvet bundt, a raspberry cheesecake pie, a double down brownie and a black and white cookie sandwich. I ate half of the cookie sandwich on the way home, but then I was stuffed.

After indulging in all that, I really felt I ought to go to the gym, so I did my two o’clock aciclovir and mouthwash, then Mommy took me there. I worked out for about two hours, although it was freezing – I couldn’t seem to escape the air conditioning. Since returning home, I’m not sure I can manage any tea, and I’m still trying to warm up. My arms are squidgy again. I’m so glad the line is coming out on Monday. Then some of my problems will abate for a while, at least.

The 15th of March.

Today has been Mother’s Day, so I thought I’d take the opportunity to tell you about mine. Not much has happened today anyway, besides Grandma coming over for lunch.

Anyone that knows her, knows just how spectacular she is. Before I became ill, she was the Hospitality and Events manager at the Birmingham Hippodrome, and continued in that position until my liver transplant, because by then she was with me full-time and work wasn’t possible. But for as long as she could be, she was with me before and after work, whenever I needed her.

Besides me, she also had my sister to support through leaving home, and her own mother who has Parkinson’s and add my health improved, hers declined. In 2013, there was a period during which my Grandma and I were in different hospitals, and all Mommy did was shuttle between the two of us and home.

When I am at my worst she is there. She will stay up with me all night while I rock back and forth in pain, get my food and drink, take me anywhere, hold me as long as I need. She is literally everything to me – without her I would be completely lost. She must be exhausted and angry and sad so much of the time yet she never complains or snaps. She is strong, funny, kind, selfless and the only person I could wish to be my mother. I don’t know anyone who comes close to her. And she gives me a daughter’s day card. I cannot believe just how lucky I am.