So this time I said there would be more positive news and there is. We are at that do you want the good news of the bad news point. So let me start with the good news. I have finally moved out of the hospital and am now living in a flat, which mum and dad came down to see on Wednesday and then helped me to furnish it. The flat may be tiny but it is on the ground floor and now that I am in it it feels ok.. It may not be home but it is my home for the next wee while.
So that is the good news. Now for the not so good. On Wednesday I had another bone marrow biopsy, and let me tell you there is very little that beats having a needle stuck in your hip bone. Today I got the results and they had to tall me that I have not made remission and that I still have 6% leukemia cells. In order to get the transplant I have to be leukemia free! They also explained that if they get me in to remission I have to stay in remission until my transplant and that treating relapsed ALL in people of my age is difficult. Of course they told me this in the nicest possible way but it is all very difficult to hear. Thankfully mum was with me (yes I know at my age I should not need that) and that helped as she does not hear the negative and only the the positive and while I might be only thinking the worst she sees only the best (some people might call it denial, but not me ;o). So the question is what now? Well first off all there will be much prayer and secondly I will have to get myself out of this funk then I guess we try again. While the news today has left me wondering what if the worst happens my mother is right onwards and upwards and just keep fighting.
Before I start this I have to make it clear that this is not me asking for money in any way, shape or form. I am lucky enough to have a supportive family and a nephew who would sell his left kidney for me ;o) What this is, is a new understanding of how the world works. I have heard it said that we are only one or two pay cheques away from homelessness but until this month I have never really understood that. Your leukemia is back they said, move to Glasgow they said, you can’t go home they said (there is a fear of sepsis) but what they did not say is that nobody will rent a flat to an unemployed cancer patient and there is not a hope in hell of getting a 2 bedroom flat (thankyou very much bedroom tax) even though you know that at some point you will need someone to look after you. I have no idea what scares people the most – the fact I am unemployed (even though I have family who will act as guarantors) or the fact that I might end up being found dead in my bed and thus not able to pay rent (I could come back as a ghost and help them to make money ;o) It is totally mad that people would rather have an empty flat than someone like me living in it. Thankfully I may now have found a letting agent willing to take a gamble on me. There is a tiny bedsit in an ‘interesting’ part of the city that has just become available and thanks to the MacMillan team here (they are fantastic) I may have a chance at getting it. It has got to the point that I have said yes and I don’t even know how much the rent will be because real homelessness is not something I ever want to face (I am not that brave). How have we become this kind of country? The kind where the size of your bank account is all that matters. Where someone in need is someone to be ignored? Going to see these flats (and you have to) takes up so much energy and even though I have to admit I am not looking my best I am far from looking my worst (bald and bright yellow which is probably still to come) and yet they still say no. There have been moments recently when I have to admit I was ready to quit and go home because everything seemed so hopeless. It would appear that there are actually worse things than being told you have cancer, other things that keep you awake at night – but somewhere out there in Glasgow is one MacMillan worker and an estate agent that I may actually owe my life to. Sometimes you really are rescued by the Good Samaritan. But the sad thing is I know I am the lucky one for there are plenty more people out there just looking for a hand to pull them up. So how do we do that? We have to learn not to close our eyes, turns our head away or just pass by on the other side, because while we may think we are safe from the harsh realities of life it really does not take much for the ground to be swept away from under our feet.
Insomnia, not exactly a bad word in the real world but here in Leukemia Land it is a real monster with arms, legs and a venomous bite. Here it has you sitting in the dark worrying about everything. Thinking of all the ifs and buts, the risks, the drugs, the statistics (now they are things that one must really stay away from ;o)
Boom – ‘Your cancer is back’
Boom – ‘Move to Glasgow – find a place to live’
Boom – ‘Start treatment straight away’
Tick, tick, tick. Did all of that (more or less) but now, now treatment has began, now I am stuck in the hospital, now I have all this time on my hands. This weekend I was supposed to get out and spend some time with friends and family (it is called a weekend pass) but due to steroid induced problems and neutropenia (low blood levels meaning I can’t fight infection) I only got out for a few hours here and there and I could only see my sister briefly in passing and had to abandon a friends in the middle of the first evening in order to come back in to hospital for treatment, none of which were part of the plan. The Plan – I think that is something I am just going to have to give up on just now. Accept that there really is a time to give it all over to God and stop trying to tick all the boxes. In saying that tomorrow (today) I am going to ask the doctors what exactly the plan for my treatment is. While this weekend may have shown me that my control is lacking (and yes some of you might have known that for a while ;o) that does not mean that I can’t at the very basic level gain some insight to what is round the corner – where we are going and while it maybe true that the statistics are not on my side, I am so much more than just a number. I am a fighter, a believer, I am someone who is not going to just sit back and let this monster win. I am going to give this my ALL, pardon the pun, and after this post I am going to try and do it with more humour and positivity (maybe even some sparkles and panache). But tonight I am tired and Leukemia Land Insomnia has teeth and a vicious bite and while he may not have done any permanent damage, and he really is no big deal in the grand scheme of things, he has left me a little more bruised and little more tender and for that I won’t forgive him.
So I am never sure how often is too often when it comes to updates, however I will just wing it and see how it goes. I have been spending the last week trying to convince the doctors that there is nothing wrong with me and actually I can almost convince myself. Today I get my second dose of chemo and therefore I am back on the heavy steroids, oh the joy. Last night I tried to organise a breakout to the pub and had almost all the nurses on side but did not quite convince them (I could only go if I took them all and they were working!).
While my ‘Stories From My Hospital Bed™’ hopefully are proof that on the whole having cancer is not always the negative thing people imagine, there are moments when even I go OH BUGGER. Today was such a day, as they are talking about a transplant in a few months.
TRANSPLANT is the boogeyman.
It is the word that has kind of hovered in the background since my original diagnoses and it is not something I ever wanted to face. Transplant is going to be the fight of my life and may make everything else seem like a walk in the park. Sadly Fiona was tested years ago and shown not to be human (you all knew that anyway ;o) ok shown not to be a match so they will have to go search out the general bone marrow registry and find me a match – talk about Cinderella syndrome. So here is my request for you, and it is just something for you to mull over, have you ever thought of giving blood or becoming a bone marrow donor? If you have done it congratulations it could be you that saves my life (sucks to be you I know) and if you have not thought about it, could you consider it because while you may never be asked to donate, you and you alone may make the difference between life and death for someone like me or the person in the bed opposite me and that, that is……………………..well there are just no words.