It Is What It Is (Part 1)

What some of you may not know is that my preferred name for this whole blog site – is blog singular or a summation of the collective, by the way? – was not The Relapse Club. Okay, so maybe it was at first. Hence the website being called The Relapse Club and all that – I mean it’s okay name; it fits the bill. I’ve had a few relapses in my time, you know? But I set this whole blog up and then it came to me: The Terminal Club. Because I’d moved on from the relapse club, hadn’t I? Officially, I’d become one of the “unsavables”.

I do wonder, however, whether that title should just be put on anyone diagnosed with any cancer, terminal or not. Once you’ve got it, there’s always that worry that it’s going to come back. People like to tout the idea that once you’re five years in remission, you’re officially cured and I suppose people like to believe that because it’s better than living in fear. But it’s utter crap. The first five years are when the cancer is most likely to come back – that little cell that the chemo didn’t kill, hiding in some sanctuary spot, ready to pounce – and once you’re past the five years, you don’t suddenly become immune to cancer. Sometimes the treatment for cancer will give you another cancer. It’s in all the information booklets you get before starting chemo or radiotherapy or whatever but you put it to the back of your head because surviving now is the important thing.

When you’re first told you have some form of cancer (in my experience) thinking about the consequences of the treatment on your future doesn’t seem at all important – just having a future at all is the focus. I think everyone has a different reaction to the news; in movies, they have that whole unfocussed background shot to make it seem like the moment the character’s life unravels. And for some people (*cough* Walter White *cough*) it really does unravel their life.

But I’ve never had that unfocussed background moment. I may have been a bit shocked and upset – it’s hard to remember after four years exactly how I reacted but I remember a bit of crying from both myself and my mum. And the call to my dad that I’m pretty sure he also remembers well; he wasn’t even in the country at the time. It’s not the sort of news you ever really want to hear but when you can’t even come to the hospital to provide comfort and be comforted, that must’ve been horrible. You know, I’ve never really thought about what my parents went through that first night or even those first few weeks but looking back, I appreciate their strength during this time. I think I needed it.

There are several things you can do when you get bad news like this: you can breakdown, do all the crying and screaming about how the world is so unfair and why you etc; you can deny it all and live with your head in the clouds until reality hits you; or you can suck it up and get on with it. Personally, I’m a fan of the latter option. I don’t have much, if any, time for people who believe that having tantrums or ignoring their problems are going to make them go away. Constantly whining about your lot in life just makes you a problem for someone else to deal with, and most likely that person is going to be a loved one who’s attempting to deal with your diagnosis too. It is definitely the most selfish and useless reaction.

Of course, this is merely my own opinion. I do believe most of my attitude towards my cancer is influenced by my grandmother, who was ruthlessly no-nonsense about the cancer that plagued her for as long as I can remember. While I was always aware that she had an illness, it was never something that was made to be a big deal. She was just my grandmother, over every Tuesday and taking my brother and I to Frankie and Benny’s a ridiculous amount of times during the summer. Sometimes she’d have operations to get lumps removed (she had melanoma), but they were just things she did, things that she’d always done. Maybe it wasn’t such a big deal to me because it’d always been like that or because I was so young and none of the adults felt we should be dealing with the reality of her situation. But I never remember hearing her complain, although I’m sure I wouldn’t have been part of the audience to which she would have done so, being only 13 when she eventually passed away. Either way, the fortitude and stoicism I remember her showing is, to me, the only sensible way to move past a cancer diagnosis.

I think that perhaps another reason that this cancer diagnosis never ruined my life is because I don’t feel like it specifically changed much of it. Sure, the first six months of intensive chemo meant that I spent a large amount of time visiting hospital and therefore had little remaining time to go to school (such a hardship for a fifteen year old). But the key word in the previous sentence is visiting the hospital.

In the treatment for ALL, the first six months are split into several protocols. I’m only going to attempt to give a basic summarisation as I can only vaguely remember what these protocols entail (four years is a long time, okay). After a bone marrow aspiration to determine what type of disease I had – common B Cell ALL, if you’re interested – we were handed sheafs of paper detailing the next few months of treatment. We spent the first two weeks (I think) in the hospital in the Induction period, which I remember involving lumbar punctures and several other chemo drugs. Then we were released back into the big wide world.

And you go back into the world, trying to continue to live the life you no longer quite fit in. Before Madi never made frequent trips to the hospital, never sat in a separated waiting room for clinic appointments on Wednesdays, never had to sit in separated waiting rooms, even. Before Madi had been growing out her hair after making the dreadful decision to cut into a bob a year and a half before; the Madi that emerged from Southampton Hospital that first time wasn’t going to be doing much growing of anything except fatigue.

But crying wasn’t going to stop my hair coming out by the fist full. It sucked, but the whole situation sucked. And when your hair falls out like that, it is at first quite amusing just pulling it out and it just coming free, but then it just is annoying. You shed like a dog or a cat, leaving trails of hair. I decided to get it shaved off before we got to that point – not going to lie, I looked fabulous bald. I had just enough hair to fit the minimum donation for the Little Princess Trust, so we sent it there. Some of you who attended school with me in either Year 10 or 11 might remember the wigs I used to wear – long blonde things, one with a particular similarity to Holly Willoughby. How I hated them. Wigs are itchy, overly hot sight-obstructing things. I think if I were back there again, I would’n’t have bothered with them; if you’re comfortable being bald, wigs only serve to make other people more comfortable. I think the sight of a bald head is just a constant reminder that that person is ill. Unfortunately when I was fifteen and sixteen, I wasn’t confident enough to go without the wigs, although I really should have. I really don’t think anyone would’ve made fun of me or anything. The fact I had cancer was pretty well known common knowledge (although apparently not to the P.E. teacher who tried to make me tie my wig up into a ponytail; never have I seen a man so apologetic – it was hilarious).

The key point, however, was that the first round of treatment was basically outpatient. More frequent in the first six months, but the last eighteen months of the treatment are much less strenuous in normal circumstances. This eighteen month phase is called “Maintenance” and it’s purpose is to keep the body in an immunosuppressed state because apparently that’s been proved to be the most effective way of stopping the leukaemia returning; boys have a longer period of maintenance since I guess that works better for them.  However, I’d signed on for a trial running at the time called UKALL2011. I figured that if I could help make the treatment better for the future sufferers then I should really do it; after all, isn’t that how medicine progresses, by the individuals who take those little risks? I was randomised a maintenance that contained only oral tablets – methotrexate and mercaptopurine – and a lumbar puncture every three months, as opposed to the standard that on top of that trio had monthly doses of vincristine and five days of dexamethasone steroids. So I went to my Wednesday clinic appointments and took my meds and every three months went for a lumbar puncture; in between I went to school and studied for my GCSEs like everyone else. I used to try to plan my clinic appointments for lessons I didn’t like (mainly Physics) and I think the teacher eventually caught on but it’s not the kind of thing she could accuse me of, considering what I was leaving for. Madi: 1 point.

And that eighteen months of maintenance came to an end on the 26th of April, 2015. I wasn’t on Piam Brown for my end date; I never got to ring the end of treatment bell. I don’t remember the day too well actually, surprising for a day you’d consider that important. But there was never that sense of finality, you know? We’d still be coming back for clinic appointments, and we’d still have to come onto the ward if I got an infection. You can’t suddenly go back to normal after all that. You just can’t.

Maybe I don’t remember if well because it never really became a significant date. As my AS Levels drew nearer, I had unexplainably put on a significant amount of weight each time I got weighed at the clinic appointments. And I started having these awful migraine headaches and double vision. One afternoon  in school, the pain got so bad that after a fire alarm, I started walking back to my class, realised I could not sit in a stuffy classroom one more minute and just kept on walking to my car and drove home. It was a very good job that my house was probably less than a five minute drive away because I doubt very much that I was in a reasonable driving state. Another memory I have is revising (cramming) for one of my history exams in the library and just struggling to actually read the information through this double vision and headache; I still have no idea how I didn’t completely bomb that exam, especially after the invidulators moved me to a different room across the school five minutes before the exam started, causing me to miss the start. Must admit I may have had a breakdown at my history teacher after I finished the exam.

Despite my oncologist at the time having looked into the backs of my eyes several times by this point, he found nothing to indicate a cause for my problems. It was actually my regular optician who noticed that both my optic nerves were swollen. This condition is called papilledema, where increased pressure from the brain causes the optic nerves to swell, resulting in a host of problems including headaches and visual disturbances. The images from that optician appointment were sent to the hospital where they decided to run an MRI of my brain, finding a leukaemic deposit on my pituitary gland. For those of you who don’t know (I didn’t), the pituitary gland controls the hormones in the body.

Another bone marrow aspiration confirmed the news: I’d relapsed in both my bone marrow and in the central nervous system. It’d only been just over two months since I’d finished my maintenance treatment. Quite obviously, the less time that passes between remission and relapse means a worse prognosis. The only real plus side for me was that I hadn’t relapsed during the treatment itself.

When you relapse, the treatment gets tougher. Two rounds of chemo and then a stem cell transplant, for which I had a Hickman line inserted, but this would only begin after the disease in my CNS was eradicated. To get chemo into the CNS, lumbar punctures are the traditional procedure – I was to have two a week, every Monday and Friday, until there were no leukaemia cells in my brain fluid. During the three or so weeks it took to clear the CNS, I was given steroids and vincristine to control the disease in my marrow.

At this time, I was seventeen and too old to continue treatment in Southampton’s paediatric unit. So after the official diagnosis had been made, I was transferred on to the Teenage and Young Adult Unit (TYA) where everyone and everything was friendly, but unfamiliar. The unit itself was fantastic, a much nicer ward than Piam Brown ward which was in serious need of refurbishment, with six individual rooms, a social space and a day ward. Each room was individually decorated in a boutique style – so different from a standard hospital room. If you go on to the Teenage Cancer Trust’s website, you can see photos of the Southampton Unit; there’s a link to the website under the ‘links’ tab.

However, this amazing new ward grew less impressive after several weeks in it. See, being in the ‘adults’ section of haematology meant adhering to a different set of rules than had been enforced in paediatrics. The main change revolved around neutrophils and how many you had to have before being allowed out of the hospital. Neutrophils are a type of white blood cell that defend against infection – susceptibility to infection is a serious concern for haematological diseases, especially on chemo, as the immune system is weakened. Theoretically, being kept in a hospital environment would be better protection from infection than the scary outside world. This meant after the chemo round had finished, you had to spend weeks waiting for your neutrophil level to reach 0.5 (or make a deal with the doctor depending on how long your neutrophils were taking to come back). On paeds, the only time you were really in hospital was for treatment or when you were really ill; this new imprisonment was frustrating. Especially as we’d been told there was no real evidence to support not being allowed outside with no neutrophils. Infections can happen wherever you are.

The first summer that I would’ve been able to legally drive around and do what I wanted was spent looking over the grim skies of Southampton from a hospital window. I actually got through the first round of chemo fairly well and was due to start the next round on the same day my school started a new term; it was pretty much certain that I would not be attending classes for that year. It was decided that as I had completed the AS Levels for my subjects, I would be granted a full A Level if I completed the coursework. Since I would have completed over 75% of the course, the exam boards would be able to assemble a final grade based on my previous work and I would be to apply for UCAS like anyone else my age. I had no intentions on repeating the year; cancer can take a lot from you, but only if you let it.

While all the chemo and waiting for neutrophils had been going on, the search for a stem cell donor had been ongoing. They took an ungodly amount of blood from both my brother and I to see if we had a compatible tissue type, which was about 30% chance of happening. Fortunately (from my point of view, I’m not sure my brother felt the same) we were a 10/10 match. The tissue typing match is measured by the amount of antibodies that are the same and a full match is preferred, although sometimes lesser matches have to be considered for those who cannot find a donor. And what I’ve always found strange is that although my brother and I obviously have the same tissue type, our blood groups are different and by having his stem cells, my blood group would eventually change to his. Part of me was quite saddened by this as I would be going from the somewhat unusual A- group to the common O+. However, with my most recent relapse I was being give A- platelets and O- blood transfusions so I have no idea what blood group I am anymore.

I am very grateful for my brother donating his cells to me. It’s not something he had to do, but voluntarily agreed to do; I wasn’t going to make him do it, not even when having a sibling match improved the success rate by a significant margin. However, not having to search for an unrelated donor on one of the registers (despite my chances of finding a match being greater than some, being a white caucasian) made the process much less stressful. And I think that he actually took a day off work to lie on a bed for hours, donating the cells (you have to know the guy to realise how special this is) and suffered through days of GCSF injections really said a lot about his character. I like to think over the past years, he’d grown some sort of attachment to me.

As this blog has reached over 3,000 words and I haven’t posted one in nearly two weeks, I’m going to end at this point and continue in next week’s blog. I don’t know if anyone wanted to hear the whole shebang but here’s the majority of it – well the majority of it from 2013 to 2015. I only really started sharing my ‘journey’ on Facebook after my first relapse in 2015, but as you can see, there wasn’t really much to share before. Well, I’ve not mentioned about my methotrexate neurotoxicity in April 2013 or my kidney stones in August 2014 but this is mainly because I’ve mentioned the neurotoxicity before and the kidney stones never seemed to be anything cancer-related. However, maybe I’ll write about them in another blog so don’t be too disappointed!

At the moment, my plan is to go through the transplant and then the following year into the next relapses and finally onto the terminal diagnosis. A nice, neatly wrapped up story for you all. Hopefully these blogs are still something people are enjoying reading, even if they’re not posted on any regular schedule. I try to keep them interesting and as medically correct as I can (but I am definitely not a doctor by any means) and the feedback continues to be good. Thanks to any readers that made it this far. Best wishes to you all.

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4 thoughts on “It Is What It Is (Part 1)

  1. I have read every blog – some several times. You write with such honesty & humour that I laugh out load, or cry, or wince as you give an insight to the variety of hideous cancer treatments. A friend of 30 years relapsed last year and your words have helped me deal with her situation – so I thank you for your courage in telling your story. (I would have used the phrase “inspirational” but after one of your blogs, realise this is not right). I think of you often & pray for you to have strength to continue and to keep writing such words of wisdom. I’m not sure you realise the positive effect you have on anyone fortunate to read them – God bless you. xx

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  2. Another excellent blog. Unlike you no one seen me with no hair but like you I had it shaved off by my local hairdresser when it started to fall out. During my regime ( which is 10 years ago in April ) I keep things as normal as I could my girls didn’t need to see me mopping about and sometimes I just wanted it to all go away. But things happen for a reason what I don’t know and I’ve yet to find out. That’s for putting things real. Love Diane ❤❤

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  3. Another well written documentation Madi – interesting you say your Dad was out of the Country – we can sympathise with that – we too were out of the Country when Daniel rang us to say he had ALL – knowing that we were a plane flight away from being with him was indeed very hard to take, having to call his sister and ask her to go to meet him at the hospital so he had family with him was very hard to take but trust me as a parent it is nothing compared to what you guys have to hear, what you have to deal with, what you have to go through. I would take 100 heartbreaking phone calls if I thought it would help you guys and I know your parents and any parents would say the same. You are an amazing girl – you think how your situation affects others but the truth is none of us care about the affect on us we care about you. So, what a wonderful thing to discover we all care about each other – what a shame the whole world doesn’t follow suit. Keep writing Madi, keep up your honestly, keep up your caring xxx

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