So I have not written here for a while and the main reason for this has simply been how awful I have been feeling. This has partly been due to the maintenance chemo I have been on but also because I have been dealing with a lot of changes and I guess some major disappointments. Today however I, well I don’t exactly feel great, but I feel better than I have for a long time. Firstly that is because I now have a flat to which I can escape when out of hospital, secondly I have been off maintenance chemo for 4 days and that means that I don’t feel like death warmed up (pardon the pun ;o) well not quite so much, and thirdly I just got to pee in a toilet like a real person for the first time since Monday and you have no idea how good that makes a person feel. You see having chemo is not just about the getting but also about the getting rid of and thus I have been hooked up to a drip for 24 hours a day having the chemo they put in me flushed back out and in order to do that they have to keep an eye on the levels of liquid that you have inside you as what goes in – what comes out = water tablets (or not). Now I know why maths is so important in school.
The more I deal with this disease the more I realise that 80% of the time just involves me sitting or lying down doing nothing but fighting boredom and nausea and the rest of the time involves accepting that any dignity I had, and I must have had some, has flown right out the window, but as that has gone out a better (some would maybe say more twisted) sense of humour and understanding of what is important in life has come right back in. I know now that it really is your friends and family that count. Those people that stand with you and fight alongside you, that make you soup, that clean your flat, that take you out in their car, that talk to you by text, email or phone, that travel for hours just to spend time with you, that whisper in your ear ‘you’ve got this’ when everything around you is telling you to give up. Those people who are there in whatever way saying ‘how can I help? – what do you need?’ those are the people that make life worth the living and those are the people that I am fighting for everyday – that and I have to help keep the people who make the pee pots in jobs. So to each and everyone of you I say thank you for helping me find the strength to get through this and to inform you that you are the reason I have just spent 4 days peeing in to cardboard containers (and I bet that just made your night ;o)
Love you and goodnight xxxx
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.
So my treatment has now started. I have had two lots of chemo, and more anti’s than you could shake a stick at. Anti-sickness, anti-fungal, anti-viral, anti-sleep and diabetes inducing drugs (steroids), anti-infection injections and tomorrow I start the pentamidine again (which is an anti-lung infection drug). So the plan is still the same. Follow the same course of treatment as before until I am back in remission an then the big decisions are going to have to be made. I must admit I am tired today but not too tired to go out and find a church to attend and it seems that the one I found has connections with half of Glenelg. There are some people who may think it is funny (odd) that I still want to go to Church especially now the leukemia has come back, but there is no issue about me looking for blame, looking to point the finger; It is what it is. Worse things happen to better people all of the time and trying to look for answers to the big question of WHY will just drive me mad so my great plan is just to take this one day at a time. I have been told this is probably going to be a rougher ride than last time but that does not worry me because we have done it before and I know that we can do it all again. xx
This has been the longest and shortest week of my life. Yesterday I spent the day behaving like an upset toddler, refusing to pack until the very last minute. However no matter how amazing I may believe I am I have yet to find a way to stop time ;o) So here I am back in B7 of the Beatson and the poking and prodding has began again. I forgot how much they like sticking sharp objects into people and by people I mean me! So this week has been one of highs and lows – of being confident that all will be well to being terrified of all the things that can go wrong. This was never part of the plan, I have just been accepted to train for the ministry, to do my Masters and was even beginning to understand at least some areas of my job in the doctors surgery (just don’t ask my boss to support that comment ;o) Cancer was behind me. Things were going right and now…… Well I have allowed myself a couple of days of negative thoughts, of having doubts, of being, well being terrified but no more. How can I be negative when everyone, and I mean everyone, I have spoken to has been so positive. We have go this. If it was not for you lot I would probably be weeping in a corner somewhere but that is not an option. So tomorrow I get my wires put in and then we sort out the plan and sometime soon I start to get the good drugs and this time they will work. I don’t have an answer to why this has come back and I don’t know what tomorrow will bring but today, today I know that I am doing ok, that nobody could ask for more support and that at no point do I have to do any of this alone (well apart from the poking and prodding that is ;o) because I have you, I have my family, I have the medical team and I have God and together we will get there….. wherever there is!!!!!
I wish I could say that I am doing ok, but the truth is that I am not sure I am. I am so scared and am trying to hide that from everyone which is why this post is not going up on Facebook. I had just started to get my life back to find a way forward. I was doing good, great even. Now I am left hoping for the best and fearing the worst. I don’t think I am strong enough to do this again but I have no option. I just want someone to tell me that it is all going to be ok but I know that they can’t. In truth I think this must be what drowning feels like but I am not giving up – if I paint on a smile for long enough I am sure that I will get it to stay and if I can convince all those around me that I am doing ok then maybe I can convince myself.
I am not really sure how to start this. I want to sit down with everyone and just look at them in that kind and heartfelt way that Dr. F has obviously practised and tell them the truth. The problem is that I am struggling with that truth. I thought I had fought my fight, I thought I had won my battles and my war, but I was so wrong. Today I was told that my leukemia really is back. Today I was told that I had lost and it had won. Today I was told we have to start again and find a new way to beat this thing. Today I was told that I have to go back in to the Beatson on Tuesday and today for the first time ever I started to question the outcome. But I am home now, I know I have people who love me, people who support me and God is with me – so what more can I ask for? In my last post I mentioned something about big pants well now I am just going to have to pull them over my leggings and find my superpower, because my story is not over yet not by a long shot. I understand if those of you on Facebook are getting fed up of my drama but I can’t say that I am going to stop posting any time soon, so if you need a break I get it and if you don’t then I guess all I can say is LETS DO THIS – you, me and God versus leukemia – I know which side I would choose to be on.
So there are some days when you get up and you just know it is going to be a good day. There are other days when you get up and you know it is just going to be crap (pardon the wording), when nothing you do goes right. Then there are the days when you get up, plod along and then life goes and……. well goes and slaps you in the face. Today turned out to be one of those days!
5 weeks ago I had my bloods done and they were a little off. 3 weeks ago I had my bloods done and they were a little offer (if you know what I mean ;o) On Monday I had my bloods done again and today I heard that they were a little more off. So what does that mean? Well it means that I have to go down to Glasgow next week with my big girl pants on and they are BIG. It means that I have to have a bone marrow biopsy on Monday (which I hate as it is kind of on the painful side) and then meet with my doctor on Tuesday for the results. It means that at that moment I am holding on to that life raft called remission with both hands while the water is getting rougher and the sharks are circling. It means that I had to tell my family that today could have been better. It means that if you are a person of faith please send up a prayer and if you are not just send me some happy thoughts if you can (oooh or chocolate would be nice ;o). It means that I am having to prepare for the worst and hope for the best. What it really means is that if you have stuck along for the ride thus far things may be about to get bumpy but I am sure we will cope. Love you all xxxx