I just want to start this post by saying a big thank you for all the Christmas and birthday cards, messages etc. I have no idea what I have done to deserve such amazing friends but I am truly grateful. I also want to apologies if I have not answered a message or sent a thank you card yet but this leads me to the second part of the reason for this post….. When I started this blog I wanted to give a true description of what it feels like to be dealing with this illness and I have come to discover that it is far from the negative path that I thought it would be as there have been plenty of moment of humour and light during this journey. However at the moment I appear to be really struggling to find these moments. I don’t know if it is just everything suddenly catching up on me, my transplant looming on the horizon then being postponed, or just because I am a bit run down but this last month or so has been such hard work. I am struggling really hard with exhaustion at the moment, the kind that no sleep seems to sort, and my energy levels are low. I was told last week that they have a possible new donor and have set the hospital intake date for the 4th but I did not manage to feel anything, either excitement or fear, about that and maybe that is a good thing – who knows? I am however worried that if I feel this tired now how am I going to feel during and after the transplant????? Anyway no matter how I am feeling it is onward and upward, I have to get my head in the game for the 4th. I am in the middle of all my tests at the moment and my line goes back in on Wednesday so no more trips North after that. However I just want to say thanks again, you are a fantastic bunch of people and I really do appreciate how lucky I am to know you xxxx
December, is normally my favourite month of the year. I love Christmas – all the hope and promise that it brings. I love the story, the lights and the glitter, the trees and the decorations, I love New Year and being surrounded by friends, family and love. This December however has really been trying to kick my ass. In the last few weeks I know what it is like to be blue lit across Glasgow by ambulance, to have an infection that is resistant to antibiotics (not fun), I have had to have my line taken out and will have a new one put in on the 23rd. I have had to have a tooth taken out before transplant in case it causes a problem and I missed my last two doses of chemo as well as my heart and lung tests due to being in hospital. Just when I thought things were on the up (I managed to stay awake for a couple of hours straight ;o) the hospital phoned today to say that my donor had failed their medical (I do pray that they are ok), so my transplant is postponed until they find a new one and all we can do is hope and pray that I stay in remission. So I think it is fair to say that December is really doing a number on me this year but this time next week will be Christmas and there is nothing that can stop me from enjoying my favourite day of the year (at least I hope there is not). If however you are missing a card or a gift from me I can only apologies and promise that next year I will be more organized – but this year I just have to admit that December has got the better of me ;o)
So I am going to start this post by apologizing. I am sorry if I have not replied to a message or email, if I owe you a thank you or have missed an important date or event in your life, you are important to me it is just the last few weeks have been very, very difficult. Even having been through this before I did not realise it was possible to feel this tired, or sick or worried. I have been spending some time considering what it means to be brave. I have decided that being brave is about choosing to continue with an action, belief or idea etc even when the odds are against you and you actually have a way out. Recently I have felt anything but brave. I don’t have a choice about what is happening to me and as such I have just kind of buried my head in the sand, possibly so deep that I am beginning to see daylight again ;o) I have been so busy trying to pretend that all is ok, even though I have been terrified that the treatment has not been working. I have spent days praying to God asking Him to cure me but acknowledging that is not always the way things work out. Then on Monday I had to go in for another bone marrow (oh they are just so much fun) and I received the results on Friday. Those were some of the longest days that I have had to face. On Friday morning I woke up and stopped asking God to heal me and instead just prayed that His will be done and that I would have the strength to deal with the outcome. It turns out that sometimes just handing it all over to God works, who knew ;o) and we did it – I am in remission. The new drugs are working. So for the time being I can stop making plans for the worst case scenario and try to start focusing on the here and now. I still have 3 rounds of chemo to go and then I take the next step. On the 31st of December I go in to the Queen Elizabeth to start my transplant (ok I know they could have picked a better date). So I really just want to take this opportunity to say sorry again for being a lousy friend, to thank you for all you support and to ask you to continue on this journey with me as we move forward, move hospitals and move treatment plans. Thanks xxxx
So this has not been the easiest week in my life and thus I may have seemed a little bit quieter than usual. On Monday I was to start a brand new treatment never used by the Beatson before, but there was a little bit of a legal hitch and I had to have a bone marrow before they would start treatment. The bone marrow was carried out on Tuesday and on Wednesday I was told that the chemo is not working and the leukemia has increased. This was very hard to take as I had been feeling so positive up to that point and it has taken me some to time to pull myself together and start to get to grips with this news. They only way I can explain it is it is like being trapped in a sinking boat with sharks all around and only a tin can to bail you out – at no time are you willing or able to stop but the water just keeps getting higher.
On the plus side I did sneak home for the night so I could see the dentist as if I am going to have a transplant then my teeth have to be in good condition. It was great to be home and so hard to come back but if the docs knew I was not in Glasgow they may have killed me themselves. It is so funny to be planning for the future and worrying that you may not have one. I want to live, become a minister, get my masters, fall in love and dance in the kitchen (thanks Tom Paxton), make it to Christmas, have that party I promise we will have when I am better, get a dog, watch how your lives turn out, travel the world, have another birthday, be there with my family and watch Rory, Cameron and Louise live their lives, spend more time, more time, more time doing all these things and so much more. So this week I am back to plan A – beat leukemia and to do that I have had to dust myself down and start living RIGHT NOW. So I am sorry I have been quiet but I am back now and while this new treatment I have started has a ‘this may kill you’ warning written all over it, it is my best hope (faith aside) and so long as there is hope there is life and right now that works for me.
So I have no idea how to explain today, except that it did not involve me passing out in a restaurant in my lunch plate like yesterday (got to keep my mum on her toes ;o) Today I had a meeting with the transplant unit and to say it was terrifying is an understatement. In fact the doctor has folded up my consent form and told me to read it only before I go back in. So basically they sat with me today and gave me a large list of the things that can go wrong, I think death probably being the worst but at this point I am not sure. On the plus side my mother was with me and she can only see the positive and for that I am 90% grateful and 10% annoyed. However before I go for the next step in this fun journey, I have to get in to remission, so come Monday I am back in hospital and hooked up to the drip again 24/7. To say I can’t wait would be a huge lie but if I am to make it to terrifying transplant (although if you are reading this mother I mean fantastic opportunity transplant :o) then needs must and all that. I know that positive thought makes all the difference and tomorrow I will be Miss Positive Pants again but tonight I am just a little bit wobbly.
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.