So here we are in the last few hours of 2015 and while everyone else is being rather positive I must admit that for the first time since I was diagnosed with ALL I cried. I cried because the docs (all three of them – they like to work in herds) came in to tell me that I can’t go home to be with my family for New Year. I cried because the room I am in has no signal and I could not even phone them and tell them. I cried because I am just bloody sick and tired. I cried because I know that next week I will be back in here getting more drugs and blood pumped into me to fight a disease that is robbing me of so much. I cried in front of a bunch of strangers (nurses, doctors and the other patients) and there was nothing I could do about it (once more my dignity flew out the window). Yes I can/have been strong and positive but I guess even I have my limits. I then look at the family across the way, who are waiting for the inevitable, and feel so stupid for being upset but still can’t stop the tears. If asked, this time last year, what the future would hold I would never once have imagined that I would be here now. While I may be feeling sorry for myself today I also realise how blessed I am. This year I discovered just how amazing the people in my life are; both old friends and new additions. I also truly realised just what an amazing family I have and how lucky I am to have all of these people in my life. Things may not be how I would want them right now but they could be a lot worse and I must remember that. I am loved and am so blessed by this knowledge and I want to take this time to say thank you for all the kind messages, prayers and support I have received this year without them and all you/these amazing people in my life there would have been a lot more tears and a lot less laughter, so THANK YOU you are amazing.
So I made it home for Christmas which was fantastic. Three months since I had been there but I had 3 wonderful days at home. I am in hospital every day now for treatment and it is pretty hard going and that is why I have not being updating as much, but today they have caught me and kept me in so I have plenty of time on my hands. I am waiting for a blood transfusion and am to be given antibiotics as my neutrophils are low but I still plan to be on the three o’clock bus tomorrow. My entire family is up north so I feel the need to go and annoy them and thus will be on that bus come hell or high (or even flood) water. I somehow don’t think I will be out dancing tomorrow night but you never know these bloods might give me all the energy I need 😋
Today I spent the entire day at the hospital – oh the joy. The good news is my liver continues to improve, the bad news is that means I am now on 4 different chemo treatments and they are all going to be full strength. Somehow I think that this might cause a small issue with energy levels over Christmas. I have, however, been given some anti-sickness medication so I am hoping it does its trick and turkey stays on the menu.
The high point of today for me happened while sitting in the pharmacy. James Martin was doing his Christmas cooking programme which is all full of butter and creams (see I am not the only one watching what they cannot eat). This other woman in the pharmacy was watching it and started a conversation with the rest of us about how all her friends have been giving her books, advice etc. about the right foods to eat when fighting cancer, however she has decided that if she is going to die she will eat what she likes. The only problem being that she can’t cook – death by microwave meal I am not sure if that is the way I would want to go out!
Sadly this week Fiona also found out that she is not a match for any transplant that I might need. (As Fiona did not take this news well she asked Chad to let me know and this meant that I had a small panic attack when I saw his number as I thought something awful must have happened.) I know I have said this before but I truley think that the families of those of us with serious illness go through more than we do in some ways. Before Fiona was tested I told her that she was not to be upset if she was not a match but I guess that is easier said than done. I hope that if I need a transplant a match is found, but the fact that Fiona can’t do it does not bother me as I know that she and all the rest of my friends and family are there supporting me every step of the way and that is what is really important.
Started chemo again yesterday and feeling pretty yucky tonight, however the good news is that I have Friday, Saturday and Sunday off next week and thus should get home. I am so happy about that, I know it may only be three days, but I have not been home for three months so three days at Christmas is such a blessing. I have been told that I might not get home for New Year as I may be back in hospital but I am hoping to prove the docs wrong.
So as I have already mentioned I have started my chemo again and you would be amazed at how cheery the ward is where I go for treatment. The hospital is having a Christmas window competition and the window in my room has the theme “blood is for life not just for Christmas” which is apt I guess ;o) The staff there are fantastic and the patients, well nobody would know that they were in there fighting for their lives (except maybe the hair gives it away) as there is only fun and laughter in the treatment room even amongst strangers which is the way it should be I guess.
So I am not sure if this is good news or not, but the doctor at the hospital today said that I could resume part of my treatment, as my liver is improving. The problem being that this part of the treatment involves going in to hospital 5 days a week for the next 4 weeks, for chemo, and during this time there is Christmas, New Year and my birthday. I know it sounds sad but I have never not been home for Christmas, and I had my heart set on it, and now I am not sure what my chances are of being there. There is also a little part of me that is not wanting to start the treatment again as I ended up being quite sick (literally) after the last session of chemo due to my intestines not working properly. I was unable to keep anything down, including the medicine that they were giving me to help, and I just felt awful and the idea of being that sick again just sucks (ok I know there are bigger and better words I could have used but that says it all). I also realise that my treatment has to start again if I am ever to beat ALL. On Friday I was talking to another woman who was on my ward and she was waiting to see the doctor terrified that she was no longer in remission. She is waiting for her transplant (which had just been postponed) and was now having to take morphine to deal with new pains in her bones and I don’t want that to be me; I don’t always want to be wondering if today is the day that I get sick again. Therefore on Monday I will not think about what I will be missing out on but instead try to remember that with each treatment I may actually be gaining something another day, or month or year and that bigger picture is what is important – plus I can always celebrate Christmas again be it in May, or June, or July……. barbecued turkey anyone?
Today has been a good day. Today I went to the cinema with a friend and I did it all by myself (yes I know exactly how that sounds). Three weeks after getting out of hospital I am still unable to climb the stairs without stopping half-a-dozen times, but I managed to get in and out of town without help from friends or family. In the last week I have been out for afternoon tea with my sister and a friend, and have also been to a museum with another friend, but in both cases I was driven from the house to where I was going and then driven back again. I also have to admit that I was exhausted both times and just crashed when I arrived home but as you can tell that is not the case tonight. Today I was out of the house for almost 5 hours, and yes most of that was spent sitting on my butt watching the new Bond movie (which is really good by the way as is his butt), but the fact still stands that I did it. As I wait for my liver to start functioning again, I am unable to receive any more treatment, and as such I have really just been treading water. At times this has left me feeling a bit down and a bit frustrated but the fact that I can now get into town by myself means that I have a little more freedom, although I will have to plan all my trips starting from the top of Buchanan Street and working down, as I am not sure I am quite up to going the other way yet ;o)