Monthly Archives: June 2015

Something Borrowed

I am often being told that My Myeloma is not all my own. It would be correct to say that my illness is not all about me, the people around me have suffered effects of the illness just as I have; they’ve metaphorically and actually held my hand, they have lost a drinking mate, they put up with me and fained interest in me describing in minute detail what I have cooked on any given day, they have dealt with my mood swings and there are many, many more things that are too long to list here. 

Very soon (with my fingers crossed), somebody is going to be physically affected by My Myeloma. I will be borrowing something quite exceptional from my Big Sister. It’s beyond exceptional. It’s a minor miracle.  Just as this will be a new experience for me and a potential lifeline, it is a brand new experience for her. I’m not even sure if the word ‘experience’ encompasses the enormity of what she is about to do. I really isn’t just about me anymore…

Two weeks ago, Big Sister travelled to London for her pre transplant tests. From this, among other things, we learned that it is not only me who has to wait around a hospital.
And so, without further waffle, for one time only, I give you Big Sister:

I had known for 33 months that I was a match for my sister and that I carried round her magic medicine and possible cure. Just a few days after Emma’s diagnosis, my tissue was tested to see if I was a match. There was only a 25% chance that I would be, so we were all thrilled when it was confirmed I was a 10/10 match. I can still remember everything about the call from the hospital telling me this, and my phone call to Emma to tell her.

It’s been quite a responsibility carrying the stem cells around, if I had had my way they would have been taken as soon as we knew I was a match. I even carry around an ICE card in the event of an accident which states I am a living donor and they meant let me die until my stem cells have been harvested.

A few months ago, we were told I would need a medical before I donated. After months of asking, my medical for stem cell donation was arranged for the 11 June. I was anxious to say the least. What if, after all this time, Emma’s own stem cell transplants and our hopes, I couldn’t donate?
I caught the 7:21 train to London, sat in my reserved seat and tried to revise for my upcoming exams. Instead, all I could do was listen to the moron diagonally opposite me, try desperately hard to make conversation with the barrister next to him. Among the many conversation starters he came up with was ‘we all have cancer you know?’ I sat there wondering if I should say anything about his rather random and insensitive comment; in the end I figured my thoughts would be wasted as he was a proper know all. 
I hopped out the train and grabbed a taxi to St Barts. I was there a few minutes before my appointment. I was weighed and measured and then sent to see a consultant. The consultant was nice and cheery, he told me a load of things I already knew and completed a questionnaire about my health. I signed a consent form, the same one I give women at the hospital I am training at, before they have a caesarean, except this time ‘donate stem cells’ was written in the blank space.
Next, I went to meet my CNS, my very own CNS, how about that? She talked to me about dates, and we agreed that the harvest would start on the 22 July. I assumed this meant I had passed the medical, although no one said. My CNS then sent me for an ECG, and some blood tests.
I wandered round the huge hospital to where I was told I would get my ECG, only to be told the department had recently moved and I now needed to be at the other end of the hospital….so off I went. I was called in immediately, it took about 5 minutes to stick on all the sensor thingies and then just a minute to do the trace. I was handed the trace and told to take it back to the CNS. I was a bit reluctant to hand the ECG trace over before I knew it was ok, so I quickly Googled what a good trace looked like. Mine was similar, what a relief, so I handed it over.
Next it was time to take ‘some’ blood samples. Off I went, back to the main building and up to the 6th floor. I went and sat in a bay where other people were having chemo. A nurse came and started taking out the empty sample bottles. Now I am not going to lie, I hate needles, I always have and always will. Trying desperately hard not to embarrass myself in front of these poorly people that have to under go needles frequently, I let her take my blood…..all 16 bottles.

  
Finally, I was sent to the pharmacy to get my G-CSF injections. I waited over an hour, but they never appeared. It turns out that the prescription was wrong. As a result, I couldn’t meet Emma for lunch and Emma will now need to collect my injections for me at some point.

A week or so later, I had a text from my CNS to say all my blood tests were ok. The next day, I received a letter in the post from St Barts. My heart pounded a bit as I opened it, luckily it was a confirmation to my GP that I was suitable to donate, requesting they do check up on me following the harvest.

  
So after all that, and after 33 months, on the 18 July, I will start to inject myself with G-CSF, the growth hormone to make more stem cells. I’m not entirely sure how I will do this, but I will cross that bridge at the time. On the 21 July, I will go to St Barts for my pre-op tests. On the 22 July, I will have my stem cells harvested. They will be cleaned up and given straight to Emma. 
It all sounds quite simple. If simple means needles, stem cells and giving your little sister a lifeline. 

Can it really, finally, be happening?

EJB x




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Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

• Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

• Further treatments (DLI, Chemo, HSCT)
• Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

• Diabetes

• Myopathy

• Osteoporosis 

• Avascular necrosis 
LATE EFFECTS 
• Infertility (N/A)

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not delve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

EJB x

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Hair Today, Gone Tomorrow

In my montage the other day, I missed a crucial part of my transplant tale. A superficial, vanity riddled part, but crucial all the same. My hair loss and how I am coping with it. I have obviously been through this process before, I lost my hair in 2013 and again in 2013 (not a typo) and despite my initial fear, I enjoyed being something of a chameleon with whatever was on or off my head. If anybody had asked me in 2014 what I thought of my hair loss, I would say that it turned out to be far better than I had anticipated. Fast forward to 2015 and I do not know how I feel about losing my hair. I can’t decide. Trust me, indesicion is something I am familiar with.

It took a while, but I had fallen head over heals in love with my new curly hair. Had the transplant not happened, I was just a few months shy of reaching my goal of a ‘do reminiscent of Michelle Pfieffer in Married to the Mob, post husband’s murder. But that was not to be.

In an attempt to take control of the uncontrollable, I had a friend shave off my hair, a day after it started to fall out with the greatest of haste on Day +12. It happened that quickly. Some members of the Network told me to wait, for they thought there was a chance I wouldn’t lose all of it, but the thought of leaving clumps of my hair all over Tottenham Court Road was too much to bear. 

In two days, my hair went from full and bushy to a Number 3 crop.

Why a Number 3 and not a full head shave? Well, on the advice of the lovely Macmillan Support workers, alopecia needs a helping hand. In order to lose my hair with the minimum amount of trouble, I needed to keep some weight so that it could fall out naturally. As naturally as chemically induced hair loss can be. So there I was on Day +12 with less hair than I had on Day 0, but still with hair. You will note from the complication above, the slugs that make up my eyebrows went absolutely nowhere.

Over the next seven days, my hair quickly left my follicles and made it’s way to whatever surface I was in the presence of. A lint roll proved to be an invaluable tool during this time, especially for use on my beds, and don’t even get me started on the power of the Electronic Power Sweeper… Mamma Jones likened the situation to having a black Labrador in the house. The fact I enjoyed pulling my short hair out of my head marginally dulled how depressing it was to see evidence of a hair massacre everywhere I went. Hair today, gone tomorrow.

  

The whole process took eight days. Eight long days. I lost the hair on my head and another area of my body, but it remained everywhere else. It’s not growing anywhere else, but sadly, the beard, moustache and somewhat dastardly, my sideburns remained. That’s right, sideburns. Unlike events of 2013, I kept my sideburns and more strangely  than that, my hair line. To all intents and purposes, I was bald, bar circular line from my forehead round the back of my head (along with the side burns and a few stray hairs). It was a style that screamed cancer. Squarked it, actually. Thus, it was necessary to get those clippers out one last time to remove my hair line and some of the sideburns, not all the sideburns as I do not want stubble on my face. The side burn issue is a situatuon most unfortunate. 

  
Once I was bald, and able to hit the streets, I encountered another hurdle, a daily hurdle. What to wear? In 2013, I think I found baldness something of a novelty. I enjoyed wearing my collection of wigs. At times, I found it fun. I do not remember feeling as self conscious about it as I do now. I am finding that with or without a wig, I feel self conscious. It’s not a dressing up game. I imagine the world secretly pointing at me saying that is a bad wig, or laughing at the fat crease at the back of my bald head. Early on in this process, I went on a day trip to Tesco, naked as it were and found strangers either stared at me, smiled and tilted their heads at me or worst still, tried and failed not to look at me. Either way, I felt their discomfort tenfold. Since then, whenever I am in public, I want to cower. 

I very much wish I could just say “fuck it” and embrace my situation and play with it. Do not get me wrong, outwardly, I do vary between my wigs and baldness and leave the flat, but I am never not aware of it. The Afro wig I loved so much before, because it was so obviously not my natural hair, has become something like a nemesis. I am prone to exaggeration after all.

I’ll let you into a little secret, when one finds themselves without any hair, it doesn’t change them. My brain still works exactly how it did before and I enjoy all the same things.  If I am in the comfort of my own home, I feel whatever normal is. Hair holds no secret power to my personality. Well, it doesn’t until I look in a mirror and I am reminded that I now look like Shrek. Perhaps if my weight was not so unruly I would feel better, perhaps if I did not have to worry about the next transplant or my finances or my future employment, and everything else that keeps me awake at night, I would be able to not care about my baldness.

A relative of mind told me that I should wear my wigs to ‘feel pretty’. Feel pretty? Is that to say that I am not pretty without one? Has having cancer made me inherently ugly or just uglier? On the other hand, a friend of mine, on seeing me walk down a street with nothing on my head but my headphones, donning my Raybans and a healthy application of Ruby Woo on my face said I looked ‘swear word cool’. I don’t think he adopts the belief that femininity and beauty can only be achieved with a full head of hair. But, beauty is in the eye of the beholder and there are a lot of beholders out there.  

The truth is, I see neither cool nor beauty when I look in the mirror. Yesterday, all I saw when I wiped condensation from my bathroom mirror post shower was Martin Sheen emerging from the swamp in Apocalypse Now. 

It’s an issue. 

It’s not an issue unique to me. Well, maybe not the Apocalypse Now bit. I read an article in Vogue Online last week about just this thing, hoping it would help me recapture the confidence I once felt (http://www.vogue.com/projects/13262618/hair-loss-women-cancer-chemotherapy-alopecia/?mbid=social_Instagram). It didn’t. I do not know how it made me feel, like a fraud maybe. I’m making all the right noises, doing all the right things, but the fakery does not seem to be working as much as I would like. 

Until I am able to pull my socks up, I’ll gently stroke the prickles on my head and marvel at my dazzling collection of wigs. 

   

EJB x

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