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Best Laid Plans

When I eventually wake up today, the first thought I am going to have, after the one we all have first thing in the morning about emptying our bladders, will be ’16 days’. I know I will have this thought because I have had the same sort of numerically decreasing thought every other morning for the fortnight. It’s a countdown.  All being well, it is going to continue to decrease until I get to ‘zero’ and then I will find myself at what I have just decided will be called ‘Lift Off’.

I have been with this once,  silent countdown since 2 March and I have known of the less time bound specific transplant plans for slightly longer that that, but in the age of uncertainty and limited brain capacity, I have been quite loathe to write them down and explain it all. Since I only have a measly 16 days left to wait now, 16 days in which I imagine that my emotions are going to be here, there, under the stair and quite possibly anywhere else I can imagine, I thought it is high time for me to share this information with you.  The information of course, is also commonly known as a ‘Plan’. The Best Laid Plan. A lot can happen in 16 days. Coughs and sneezes spread diseases and all that, so, do understand my disclaimer. 

It has been quite a while since I did my MS Project training and I wager that I am in a minority of the population who have undertaken MS Project training, so my plan will only be presented to you in the form of words and potentially, the odd bullet point. Anyway, WordPress is not Microsoft Office, so I should just continue.

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I am having two transplants, you could say that they are going to be ‘back to back’, but that would depend on your definition of ‘back to back’ now wouldn’t it? Since my visit to St Bart’s on 11 February, during which I was bombarded with so much donor transplant related information that I had to take a 10 hour nap, I have slowly been trying to get my head around the implications of their plans for me. For your information, based on my discussions with the Medically Trained People, ‘back to back’ means a three or four month gap between transplants. Subject to the outcome of the first transplant. 

A month since my appointment at St Bart’s Hospital and I am none the wiser about whether what I was told was expected by me or not. I was told that I was going to suffer from severe fatigue post donor transplant for an undisclosed, but probably a long, period of time. I was also told that they will want me to have a little of something called ‘Graft vs Host Disease’, but not a lot of it, because if I get too much of it, the result could be worse than My Myeloma itself. Read from that sentence what you wish, but I have a full bottle of water next to me, so I am hopeful. To cut a long story short in terms of the graft and my host, they want me to get some rashes. Sexy. 

There are three possible outcomes to the procedure (they negated to mention a negative fourth outcome and so I will do the same). The first outcomeis a quick relapse, the second is a long period of remission and the third is a cure. They do not know which door I will get, and my, my, my, is that like, The Most Exciting Game Ever.

Prior to the appointment, I knew all of this information. That said, there is quite a difference between knowing it by piecing information together from various conversations and leaflets in isolation, to one Medically Trained Person confirm it all to my rash free face. 

What I did not know and what came as surprise to me way back on 11 February, is that I will not behaving a full allogeneic transplant. I will be receiving Big Sister’s stem cells in all their maroon coloured glory, but I will do so without any high doses of chemotherapy and radiotherapy. I will in fact be having what the Medically Trained People at St Bart’s call, ‘a Mini-Allo’.

There is a 50:50 chance that the mini-Allo procedure could be administered to me as an outpatient. News I welcomed with pleasure and a mental image of my television screen. On the downside, I feared this news might confuse my people over the severity of and longevity resulting from the procedure I will be having. I was told that whilst doing it this way removes some of the immediate risk that comes with high dose treatment and a severe lack of neutrophils, everything I will face in recovery is the same as if I were to have had a ‘full’ transplant.

Enough of that. That is my main course, which I will apparently be hungry for at the end of June or beginning of July. Plenty of time in my future to go through the minutiae. Plenty of time. For now,  I have my starter to contend with, which is provisionally booked in for the 1 April. Saying I am concerned about my next transplant would be an understatement. Unlike my previous autograpt, and to extend this  metaphor, I have been continuously snacking for these last eight months on various forms of chemotherapy, and so, I am not particularly hungry for more right now. I fear the overindulgence my adversely impact the proposed high dose course of Melphalan on that Wednesday, 16 days away.

As with July 2013, I have been told that I will be in hospital between 3-4 weeks.   I will be at the place where everybody knows my name, UCH and I will initially be staying in the hotel again, within the confines of Tottenham Court Road, until I become too unwell at which point I will return to quarantine in the Tower. Unlike in July 2013, I have been told that I cannot come in with painted toenails as the MTP may need to look at them. They did not need to look at them last time, and if memory serves I was sporting a hot red near my bunions, by I best not complain… I have other, more important things to plan for.

Having had a transplant already is a doubled edges sword. It’s both a blessing and a curse and for the life of me, I cannot decide if I am better off knowing what to expect or not… Let me tell you something for nothing, it does not make me any less scared nor emotional about doing it. 

Depending on the outcome of some tests I have tomorrow, in 16 days time I know that I am going to start a course of treatment that is going to have me clasping my stomach in pain, a pain that will last for well over a week and unrelenting.  At the same time, I am more than likely to once again, as an adult go through the embarrassment of soiling myself.  My mouth is going to become so dry due to a lack of fluids that I will have at least a week long film in and around my mouth, with cracked lips and a dagger for a swallow. My hair, my beautiful hair will once again fallout. I am going to need a lot of sleep. I will then get discharged from hospital and become reacquainted with solids and fresh air. And all the while, I will be the only person I know going through it…  Then, just about when I am starting to feel better, the main course will start  and that is something I have not tasted before. In 16 days time I will commence a course of action that leads to a plethora of unknowns.

I have purposely arranged this month, my time now, where I have a reasonable handle on my limitations, so that I can enjoy myself as much as my body will allow. It’s a crucial part of my plan. Fun is a tonic, as is completing things on lists. I suppose that, however, is another story. 

When I officially wake up today and say to myself ’16 Days’, I am telling myself that I have 16 days of freedom left before I become, well, before I become, I do not know what. I am telling myself that I have 16 days of normal left, 16 days to find the strength to get through the x number of days that will come after it, as well as the strength to manage all the other unknowns I, my family  and my friends are going to encounter.  

A Best Laid Plan

  • 11-31 March – Drug free. Attempt fun. Avoid snot.
  • 1 April – Day -1. Temporarily relocate to Tottenham Court Road, stayin in the hotel. Recieve Melphalan.
  • 2 April – Day 0. Recieve stem cells transplant. Spend the next few days waiting to get sick.
  • A Few Days Later – Be very unwell and spend several days shut in a room with little to no privacy. Await the happy news that I can be discharged.
  • Two to Three Weeks Later – Get discharged. Allow Mamma Jones to look after me until I am strong enough to put things in the microwave, which would mean I will be at the point where I am able to eat again.
  • Sometime in May – return to London Town to do some more recovering and more sleeping.
  • June/July – have the next transplant.
  • August, Autumn and December – recover. Avoid germs. Perfect drug cocktail. See signs of weight loss and hair growth. Attempt to keep personality intact, 

So there it is, the big plan. A plan that is probably as clear as it will ever be. A plan that I know all too well from past experience, is subject to change. I hope it does not change, for the simply fact that I am ready to move on now, or at least I will be in 16 days time. 

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I will leave you with one final musing. Getting over my last transplant, the months of recovery after it was the hardest thing and I mean the sort of difficulty that is weighted in isolation, lonliness, endless broken sleep and fuzziest of fuzzy brains, hardest thing I have ever done. I am not the same person because of what I experienced in  aftermath of that transplant. And the memory of these consequences is usually my second thought after I wake up and recommence the countdown.

EJB x

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Some Festive Cheer

It is Christmas Eve. Christmas Eve happens to be one of the best days of the year, if like me, you happen to love Christmas. I am Kevin McCallister, such is my love of Christmas, it’s traditions and the pure wonder that can be a nicely decorated Christmas tree. This Christmas, more than the last two I have with the disease they call myeloma, I have planned and longed for a ‘normal’ Christmas. By ‘normal’ I mean ‘special’. I had meticulously planned something so much better than the 12 Days of Christmas, so that I could enjoy every single moment of Christmas commercialism. I wanted to gorge on Bing Crosby and Jimmy Stewart until the leftover meat fertilises next year’s tomatoes.

By today, according to my plan, all I should be doing is some elective baking, some constant film watching and some smiling. That is not what I will be doing today. Instead, I have all my presents to wrap, one present to buy and copious amounts of rest to fit in where and wherever I can find it. The need for rest is making me act like Scrooge at the beginning of the Muppet’s Christmas Carol. I do not have the time for it, and all it does is remind me what I was supposed to do.

The reason for my childish want of a normal Christmas will become more apparent as 2015 progresses.

I should have known that my plans would have gone wrong. I should have known that instead of coming back to my parents’ house early to enjoy my nieces’ festive excitement, I would be coming home to my parents’ house to get into bed, via A&E with some antibiotics. I have been a good girl this year; I did not need coal. I have been unwell every Christmas since my diagnosis, so I suppose I am just carrying on with the new tradition.

Now, I would be the first person to put my hands up in the air and wave them around to confirm that I have been displaying the sort of behaviour that shows that I care very much about Christmas and the more I care, the more option I give the myeloma to deviate from it.

Over the last few weeks I have been slowly tying myself in emotional knots in festive anticipation. I have a wonderful example of this. Much to his dismay, and my own surprise, Housemate recently incurred my mighty festive wrath after showed some initiative by taking the Christmas tree out of it’s box and put some fairy lights on it whilst I was out galavanting at 16:00hrs one afternoon. My initial reaction and then the one 24 hours after the deed was done, were ones that some, if they were being polite, could describe as ‘an overreaction’. As I concluded the following day, there is a lot of emotion connected to that Christmas tree. I do not want to be morbid, so I shall not type why it upset me, but if you add a failed bone marrow transplant to future Christmases, you’ll get somewhere near my reasons for wanting a saccharine Christmas.

I do tell myself that I have to be stronger and that I should not complain about my situation. Indeed, I do not want to complain about my situation. Myeloma and Christmas just do not go together and I know that despite what will follow in this blog, there are other families who will feel more pain than I this Christmas. To them, I apologise for my self indulgence…

That said, as it is Christmas Eve, I want to find the festive cheer that left my loins five days ago. In the lead up to Christmas I dragged myself North, South, East and West in order to fully embrace, as fully as my body would allow, the festive good times. There was a voice in the back of my head as I typed the last sentence telling me that I just lied to you. I should have added that as much as I wanted to do everything I did in the lead up, I knew that doing it all would be bad for my body especially when my hospital added five appointments last week. The bespectacled voice also says I probably should have shown more strength and stayed in when I needed to and I should have worried a little bit less about letting people down and had the confidence to think my friends would understand that me needing to stay in and lie on my sofa is not a reflection of my love for them, but is in actual fact, much needed medicine that would have got me to Christmas Day without a temperature of 38.6.

Alas, whilst I will still make it to Christmas Day, I will not make it in the way in which I had planned. I will not have the time to watch the films I wanted to watch nor will I bake the things there are a not enough people in the family to eat. I might not be able to rubber stamp my own wrapping paper for Ebenezer’s sake.

This illness crept up on me at my cousin’s fabulous wedding at the weekend. Not particularly unwell with anything drastic, but I had a fever, a cough and the things that usual accompany fevers and coughs. An annoyance if one is healthy, something a bit more if you are receiving treatment for myeloma. I do not have the resilience to battle it. True to form, to A&E I went on Monday for four whole hours for IV antibiotics. The general public out there with their bugs do not have to do that. They might complain like I am right now though.

Anyway, Mamma Jones says I have to try and get out of bed now. I just watched Die Hard 2: Die Harder. I only added that so you know that I am trying to find some good in a bad situation. I just wish, given the importance of this Christmas, I could do it without factoring myeloma into every single task.

If George Bailey has taught me anything it is that one should be thankful for what they have, so that is what I am going to try to do today and with that in mind, I wish you all a very Merry Christmas.

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EJB x

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