The one thing about being sick is that I have discovered what a fantastic bunch of friends I truly have and on Saturday 1 such friend had his hair sheared (and I mean sheared) off to raise money for the Beatson Cancer Charity. Andrew went above and beyond and has of now raised over £600 pounds for the hospital and I think that is an amazing and wonderful thing for him to have done. I honestly can’t believe what he was willing to do (as the hair really was part of the man ;o) but he did it and for that a huge thank you must be said.
I also know that it has been a while since I have written here but I guess I realise now that I am sicker than I thought I was while in hospital. Each morning starts ok, but 9 out of 10 times by the time I am up, showered and dressed I am exhausted. So for those of you who have written, texted or emailed me I am sorry if I have not got back to you but most days I have just been completely shattered before it has even started. Today however has been an exceptional day, as not only have I achieved all of the above, I have also been to the hospital and still have some energy in reserve – go me (or maybe it is the green tea with lime!). I wonder if this means that my liver has decided that it wants to play with the big kids again? Best not hope for too much at the moment.
Since I have been on here last I have had another bone marrow sample taken, and while the docs did not have the results on Friday when I was in, my consultant was very positive that the first round of treatment had done what it was supposed to as my bloods are holding steady. If this is the case then as soon as my liver settles down I will be starting my second round of treatment. There is part of me that is shouting “bring it on” but there is another part of me that would just like a little while to get my feet back under myself and be allowed a some time to feel half human again. There are some days when I forget what that was like and it might be nice to enjoy that feeling for a while but I guess the sooner I start the sooner it is over and done with.
So now that I have this extra energy boost I am away to apply for the psychology and counselling course that I hope to start in Feb. One of the items on my bucket list checked off. I realise now that while I love the jobs I was/am doing (and am not planning on quitting them in the foreseeable future) I guess I feel that maybe I could be achieving more and this is a step in the right direction. My life before ALL was not awful but when I look back I hope to see a distinct line drawn before/after ALL. I don’t want to stagnate anymore, I want to start living and in order to that I need to start making changes and this is step one in a long line of such changes hopefully – sadly in order to make said change forms must first be filled in any volunteers? I am sick after all ;o)
Just now I am living with (or should that be tormenting myself with) the three C’s – cancer adverts, Christmas adverts (there was one save the donkey advert but that does not count) and cooking programmes. Everywhere I go there are adverts for either Christmas or cancer be they in newspapers, magazines or television they are just everywhere and the slightly twisted irony of it all is not lost to me. Christmas is fast approaching and I am so hoping to be home for a few days over the festive period. I want to wake up on Christmas morning at home with my family, whom I miss very much, and just spend the day with them. I watch all the Christmas adverts (and the occasional film I must admit) and keep hoping that that will be me. I have no idea if it will even be possible as I don’t know when the next round of treatment can start but that does not stop a girl from wishing – it is Christmas after all.
Then there are all the cancer stories and adverts. I swear that there were never that many articles and adverts about before I was sick. There are happy stories, sad stories, charities looking for support and adverts giving advice. There are days when you think that it is almost impossible not to be confronted by the disease from the media and then you go and wake up, or stand up, or look at yourself in the mirror and you realise that there is no way for you to avoid it anyway so what does it matter.
Add to the fact that as I no longer taste anything and many foods are on the “I can’t eat list” and guess what I have found? That’s right, the food channel and it has become my new favourite friend. I love to watch all these wonderful meals being made and hear about all different smells, textures and flavours, when tonight all I could eat was half a bowl of soup. I can even torment myself a bit more by watching Christmas cooking programmes, which even I will admit is just wrong, but you never know it might just be alright on the night!
Yesterday I was discharged from being an inpatient in hospital. They told me this at 9am but it was 4.30pm before all treatments etc were over and I was set free. Now while I thought that this was a huge step forward (and it is) and celebrated by having my first decent meal in weeks (thank you Aunty Mary) there are a couple of draw backs. First my liver is totally shot or as the doctors like to call it “deranged” so I have become a wonderful shade of yellow. However, you can only see the yellow in the places that the drugs rash is not covering and that makes for an interesting state of affairs. In order to combat all this, and so that I can start the next part of my treatment, they have taken me off as many of the drugs as they can and this includes my bipolar medication which could be fun. To top this off I have to go in to the hospital 3 times a week for various different tests and procedures. Now for many people getting across town may not seem a great hassle, for me it seems impossible. You see today I went in to town to meet my Aunt and my mum, I was dropped of at the bus stop and met them in town. I then walked with them to look for a winter jacket and had to sit down twice before I passed out. The house where I am staying (thanks to the most amazing friend in the world) has stairs and this morning I had to come down them on my bum as I could not walk down them and on Monday I have to get to the hospital by 10.30am, how I am going to achieve that I have no idea. So yeah, while getting out of hospital was an amazing achievement, now it seems that I have to truly come to terms with what living with cancer means.
So I know I have not posted in a few days, but that is because it has been a rough time although on the plus side my neutrophils are fantastic. In the last few days my hair has come off (as the hairdresser said it was probably time when the cleaner was hovering my bed) and my eyes have gone a lovely shade of yellow. The other night I had 3 units of blood, an anti-sickness medication (I did not know it was possible to be quite so sick) and an anti-clotting drug and by the morning I felt so much better. However today I have had an allergic reaction to one of these medications and am now an itchy spotty version of my usual self. I appear to also be on the cancer diet where the only things I can eat and keep down are soup and yogurt. To top it all my mouth feels like I have been licking slugs bottoms or is that the bottom of slugs (I would like to point out here that I never have) and is rather horrible. So I guess that explains where I have been and I don’t mean slug licking. As such I have decided to write this and post earlier than usual because it appears that most days now the afternoons and evenings are nap or bedtime.
Tomorrow the wig lady comes in and I get to choose my new hair style. I am at this stage unsure whether to go with something similar to my normal hair or go funky. I guess I will have to wait an see what the choices are and what she thinks works. Tomorrow I am also getting a scarf tying class, this is to show us the best and easiest way to cover our heads. So I guess now is the time to show you the new me (I might as well get it over in one go) so this is me now…
So that is it. The hat came from my cousin and I think improves things 100%. While it is brilliant at covering up my lack of hair I must admit that I can’t wait for my wig.
Being on a cancer ward is a strange and unusual experience. While here everything is shared, from blood counts, to bowel movements (don’t ask and I would rather the doctors took that advice also), temperatures, family and friends histories be (be very worried), our backgrounds, when and how our cancer was discovered; everything. What we don’t share is our plans for the future (although as I have said before Christmas dinner is discussed a lot), contact details or anything else linked to our life after here. It is almost like mentioning the future might be bad luck. One of the women that came back on my ward has only been in remission for 18 months and her cancer is back and while we are being supportive there is a part of each of us that is praying please not me. Today however one of the women on the ward was discharged home and put under the care of another ward so she wont be back in here. Now she has been in and out of here for months and when she left instead of saying anything about seeing her again we all just told her that we did not want her back. It is a strange world that you live in when a goodbye means just that, it is a hope that you never cross paths again. The reasons for this are many but I guess it comes down to the fact that if you are meeting them in the ward again it means that something has not gone right with your treatment. Each and every one of us wants to go into remission and stay there and in order to make that a reality then we have to be off the ward and stay off the ward, but we don’t just want that for ourselves we want it for everyone in here and thus for us goodbye means just that It means I don’t want to see you again. It means good luck. It means stay healthy and keep well. Most of all it means I know you can beat this. So for the first time ever “Goodbye and I don’t want to ever see you again” is seen as a positive statement and one day soon I want these words said to me. Once I am told that I am out of here I hope to hear these words said to me and sadly unlike everyone else on my ward I hope that it is the first and last time I hear them.
So five weeks today I was admitted to hospital and let me tell you something five weeks trapped inside can be a very long time. Now however I am finished my inpatient treatment, more or less, and I did it without any problems – I even still have my hair! At the moment I am being given an injection every night in order to get my neutrophils up and once they reach a certain level I become an out patient – yipeeeee.
Now however, as I am looking forward to getting out, my sister is getting ready to go in to hospital. After coming home to visit the family healthy she is left with cement burns on her knees. So on Thursday she has to go into hospital for a skin graft. I think between the both of us we may be pushing my mother towards the edge but in our defence we were never really sick when we were growing up.
So tonight is craft night. Two of the ladies on my ward are running temperatures, but are still asking to go (and they managed), which I think shows just how much these evenings mean to us. For the majority of the time we sit in our rooms passing the time by reading, colouring in (what? It’s therapeutic or so the books claim), playing on the internet or chatting to each other and visitors but still our day starts at 6,30am and that is a lot of hours to fill.
That’s me back from craft night, where I made a snowflake this week. It is a bitter sweet class because some people are making these decorations while knowing that they will not be home for Christmas and will instead be in isolation after transplants. Tonight I decided that I will be home for Christmas even if I can’t stay there full time. I have so many people praying for me and sending their positive thoughts that I think maybe I can do this. I want to be with my family, I miss them so much, and I want to hang these decorations on our tree. So now I have set myself a goal, which in all honesty I am not sure is realistic or not, but it gives me something to aim for and we all need that.
On another positive note I have a friend who has just offered to run a half marathon raising money for autism and the Beatson which is more than generous and extremely touching. In a world where we are so often inundated with bad news there are still so many kind and inspiring people out there, people willing to go that extra mile (pardon the pun) and I feel blessed to know so many of you.