It is hard to believe that I have been in Glasgow for over a year now but finally the doctors are saying I can go home soon. While it is true that I need a top up of cells from my donor, he is sadly unable to do this at the moment, so there is no real reason for staying down here. I spoke to the docs today and asked them what the chances are of the leukemia coming back yet again and they told me with a cell top up it is 50/50 – I did not bother asking them what the odds are without. So 50/50 I get my life back. With this in mind I have confirmed that I will be starting Uni this year (although I am not sure that my brain is agreeing with me on this ;o) Here I am now being faced with reading books that have words with more than one syllable when in reality Netflix has become my new best friend over the last few months. I can tell you everything you need to know about Hawaii 5-0 but when it comes to the differences between exegesis and hermeneutics that is much more of a struggle. I must admit there are days when I have questioned whether staring training now is a clever idea but if nothing else the last few year have taught me that life is short and while I may not be feeling completely up to the challenge I am not willing to run from it either. So for now I can start planning on moving forward, for moving home, for trusting that this is still the path God is asking me to follow, to pray that my donor is able to give me the cells at some point, to believe that a 50/50 chance is enough and that my brain can cope with something more than bad tv cop shows – this last one is probably the most doubtful but only time will tell ;o)
I would never consider myself to be a delicate flower, more baby buffalo, but even I appear to have met my limit. On Monday I had to go in for another bone marrow, lumber puncture and chemo. I have lost count of how many I have had but lets just say I am now a pro. The bone marrow was as good as having a needle stuck in your hip bone can be, but then they moved on to the lumbar puncture and let me tell you it is nothing like you see on those made for tv films. There I was sat on the edge of the bed, good as gold, as they tried to push a needle in to my spine – well one minute I was sitting the next minute I was waking up to an oxygen mask being put on my face and then if that was not bad enough I decided I had to start throwing up. You would honestly think by this time I would have seen/done it all, but obviously not. To top it off I was told on Monday I will need a top up of cells as my donor count has dropped again. This means that I will be stuck in Glasgow for at least another few months as there could be issues with this procedure. On the plus side my mother does like a good charity shop rummage so she is in her element now the shops are open again.
With all this in mind, one might not think that this is the time for make huge life changing decisions, however it turns out that is not the case. This week I had to decided whether I was going to start training for the ministry as well as start Uni and this has not been an easy decision. While I could put it off for another year I have come to realise how short life is and after much prayer and debate I found myself ticking the yes boxes and as of Friday I start my training. While I have no idea how easy or difficult the next stage of treatment is going to be I need to try to move forward. While it is true that I am not in the clear yet, I feel that this leap of faith is the right one to be making, after all there is very little that can stop a baby buffalo (except for a needle in the spine ;o) especially if she has faith.
So I was asked a couple of weeks ago by a friend why I had stopped posting updates and it has taken me a while to find an answer to that question. I guess I though that the main reason was that with all of us in lockdown we were all in the same boat and I should just get on with it and I guess that is what I have been doing up to a point. On reflection however, I believe that the main reason that I stopped posting is that I have lost myself a little along the way. Unlike the last time fighting this disease, the spark that is in me (that is me) has become a little diminished and I am not sure how to get that back. I guess that this time I am more tired than previous and it means that everything is just that bit harder. I have asked the hospital if I can go back home but they have said no just now to that little idea. This is due to the fact that my own cells are not giving way to the donor cells (I always knew I could be stubborn but did not relies that went down to cellular level) and they need to do some more tests to decide their next plan of action. They have said that it may mean that I need a top-up of donor cells but that raises the risk of GVHD so they are just playing the waiting game. On the plus side this would not mean having to go back in to hospital as I can continue to be treated as an out patient but really I am just tired of this disease. So while I may have given up a bit in the last few weeks and months I have recently given myself a bit of a shake and have even been in contact with the Church of Scotland and Aberdeen Uni to see if my places are still available for this year (chemo brain beware) which they are. So my plan now is to try to pull myself together, to continue with the tests and treatments but to get home as soon as possible as both mum and myself need out of here. This is the view we have had for the last 3 months and I can tell you this even mum is missing Glenelg at this point.
All I can say just now is that I am so grateful to the friends and family that have supported me thus far and can’t wait till I can see you all in person again, but until then keep safe and be kind to yourselves and each other. Love you all xxxx
This is just a quick post to say that as of yesterday I have been discharged from the hospital and am now home under the tender loving care of my mother (which is just as well as I feel around 1000000000 years old). I have now to attend the hospital twice a week – Monday and Thursday – in order for the doctors to keep and eye on me (these may be the only days that I actually put day clothes on ;o) It is funny how fit I thought I was in the hospital but now I am home I realise that I may have some work to do. It is also notable how safe I felt in the hospital and now I am home and faced with the possibility of catching the corona virus how vulnerable I feel. Yesterday mum and I did something we have never done before and bought some dry and canned goods just so neither of us will have to go out too much should it come to Glasgow (brave virus!!!!). While it may see silly to some the fact that I cant fight anything means that it is better to be safe than sorry and if the virus does not come here then mum and I will have plenty to eat for the next few weeks, months or years lol.
Can’t sleep tonight (which is a change as that is all I seem capable of doing these days), so I thought I would let you know that yes I am actually in the land of the living (just!). So many times in my past I have faced challenges which were hard (or I thought were hard) but nothing, absolutely nothing like this. Even just the energy taken to write this so far has my arms shaking which is so not like me. There have been moments in the last week where I have not been sure I could get through the next minute never mind the next hour or day but I have, only because of the prayers and good wishes I know that are out there supporting me onward. A transplant, I know now, is not something you can ever really prepare for as it would appear to be something that zaps every last drop out of you before even thinking of rebooting your system and I am so ready for that to start. On the plus side the staff here are amazing, you could not get better, and the level of care is first rate and beyond. For those of you who have been in contact and have not heard back from me, just let me say thank you now and I promise some time in the very near future I will be in contact but for now I am going to find something that does not involve my brain or my arms to pass the time. Love always xxxx
Fiona here, I have stolen Jades blog , ha ha that will teach her to leave the computer out. Ok, so that is a lie, she has asked me to help her do it as she has chemo brain. You can tell she is not firing on all cylinders, when her instructions were limited to” nothing rude.” So here goes
Jade had her transplant yesterday and therefore has a second birthday. So I now technically have a younger sister, mum and dad we need words. She is doing well especially since mum and myself are here to torture her. Having done her sleeping beauty trick yesterday, she is now awake and functioning as best as she can. That being said she is still sitting around doing drugs, which is wrong.
When you really think about it, what this complete stranger has done for our family is out of this word, amazing. We will never get to thank them, but I can thank everyone who tried to sign up, those who are now on the donor register and those who shared it. You will always be in our families hearts. Having this journey to travel may not be fun, but we have it and will definitely find major laughs along the way.
I would also like to thank everyone of you that has sent positive words of encouragement, sent letters, followed her blog, prayed for us and those who have been able to visit her. This has really kept her spirits up, when it all got too much. It has also made it easier on my family, to know she always has someone to talk to, being that we are nearly spread for one end of the country to the other. That is for noise control not because we don’t like each other.
At present she is on antifungal drugs ( she did have the lurgy as a child lol), anti sickness and her blood sugars are all kinds of crazy, but all in all she is doing ok. Unfortunately she has pet bugs in her line so she needs to have anti biotics. I have managed not to bring any germs up this time so no need to be vaccinated against her family.
Now you get to know the real Jade. She is fleecing mum and myself out of a dog when she finally kicks this cancer in the bum ( not too rude ). I think a mix would be good, so may be a bull dog crossed with shih Tzu, you can work out what that would be lol. Who cares, she can have what she wants for this one time ever lol
So that is me for now and handing back the blog to Jade.
Love Fiona xxxxxxxxxx
Who new eating as many ice-lollies in half an hour could be part of any medical treatment but it turns out that it is. Today I was given a bag of heavy duty chemo and to try and preserve as much of the soft mucus tissue in your mouth and throat you have to eat ice-lollies. I managed 5 – the max is 10. Turns out that I am also starting to suffer from chemo brain as it took me about half an hour to remember the word cookbook and not menu when thinking I should invest in some good diabetic recipes. See that the thing while I am still feeling mostly alright I am suffering from high temps, rigors, bugs in my line, rashes, allergic reaction and diabetes again. On the plus side none of this is new to the team, and the team here are fabulous, so each new problem is investigated and treated well. So today I am having more chemo and more chemo and more chemo, followed by antibiotics and antibiotics and antibiotics then they give antihistamine and that is good night from me as it just knocks me out. Tomorrow I get my new cells and then from what I have been told the fun will really start but I am ok with that. Over the last few days this has got me thinking and it is not because I think anything will really happen to me, but because it might, that I wanted to say that each and every one of you means so much to me and has enriched my life in some way, you have made my life’s journey more interesting and enjoyable and basically helped to make me the person who I am today (some of you might not say that is such a good thing ;o). And in that respect I know I am not perfect and I want to take this opportunity to say sorry if I have ever hurt or wronged you in some way. I hope that you can forgive me for I really did not mean to. I also want to say thank you for the fun times, the laughs and the giggles, the nights of deep conversation, the meditations on God, the teaching about prayer and faith, the holding through the tears, the letting me in to your lives to do the same. You are all amazing people. Just remember (and I know you will have heard it before) life is short. Don’t put off today something that you should be doing, something that will make you happy, we don’t get do-overs in this life just one chance to make the right choices so make yours count. Anyway here comes the antihistamine so it is time for my afternoon nap. Love you all xxx
This morning I woke up in the QEUH for the first time ready to start the next step in my journey. Yesterday was day -8 and today is -7. At day 0 I receive my new cells from some amazing stranger out there who has never met me yet is willing to try to save my life. In a world full of horrid news about awful people and situations there are still wonderful, wonderful people out there doing good, kind and caring deeds just because they can and we should never forget that.
So this morning I had another bone marrow biopsy which is always fun, fun, fun and then my first dose of chemo. The amount of tablets they have me on is fairly substantial, with these being the ones I get before breakfast
So this next wee while is going to be a bit rocky but at least I know what the plan is and with God’s help and your continued good wishes I hope to be out of here in no time!
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)