I have spent the last week feeling ill – thank you Mr Chemo. I also still have a blood clot (somewhere) but as of today I am trying to get it together and start acting like I am not ill. As of this point I still have cards and gifts to open, from my birthday, but I want to open them when I am feeling ok and not at this moment when I am feeling like death warmed up. I have decided to move home on Sunday as the treatment is on a standstill yet again until the clot goes. This means that Rhona and Alan can have their house back and I can stop living in their upstairs bedroom like some lunatic aunt from a Bronte novel. However, I do this, in the knowledge that I can move back down (and resume lunatic aunt status) as and when I need to. I have also spent the last week realising that I don’t want my life to go back to the way it was before. I know that because of the liver problems the doctors don’t want to do the transplant and I am not sure what that means for me long terms as yet. All I know is that I really want to start living and enjoying my life. Living with this clot and knowing that it could move (and possibly damage if not kill me) is making me very appreciative of the time that I have had and am still to have. I want to spend more time with the people I care about doing the things that I enjoy. I want to start working outdoors more and enjoying each day for what it brings. This year I am going to learn how to garden (my mother is probably killing herself laughing about now) and I am going to finally make the jams, juices etc. I have been telling myself that I would do every year. This year I am going to start “doing” and stop waiting. We only get one go at this life thing and I have let so much of it slip away but not any more Sure I know that there are still lots of days to come when I will feel ill, when even getting up and dressed will be an achievement, but that is ok because for every bad day I hope there will be numerous good days which I will grasp with both hands and enjoy. None of us know what is around the corner. If today was your last day are you living it the way you would want to? Is there anything that you would change? If there is then now is the time to change it, because honestly you might not get another shot, and for me that is a terrifying prospect.
Thank you for all the wonderful birthday wishes, and sorry I have not been in contact until now to say thanks, but I have been feeling very “blah.” I was sadly in hospital for my birthday, although my family came to visit, and made it so much better. Also the staff here made a huge effort, and I had cake and gifts from them, which was really nice. So the reason for feeling under the weather has been that I have had a pain in my neck and chest, which has meant sleep has been hard to find, add to that a swollen arm where my PICC line was means I have been having x-rays, ECG’s, CAT scans etc. and it turns out I have a clot in my left arm where my line was. So today while the PICC line has been taken out I am not able to get out :o( So here I sit, all packed and ready to go, but not able to go anywhere. I am going to be shown how to give myself blood thinning injections and I just hope they do their job and the clot dissolves. At the moment I must admit that I am not feeling my best (the injection in my spine yesterday also did not help), but I know that the only way from here is up and that has to be a good thing does it not?
So still in hospital. I have been put on a diet of antibiotics, antifungal, and antiviral medication to complement my antisickness and anticancer drugs. All I have to do just now is cross my fingers and hope they work until my neutrophils come back on line. Let me tell you something, this is a very easy thing to do until someone coughs or sneezes next to you! Having said that I do feel like rather a fraud sitting here taking up precious bed space. As I have already said everyone else in my room is very sick, some of them terminally so, and here I am playing on my laptop. Yesterday, sadly, I had a front view seat on how they break the bad news to patients and let me tell you this if they ever ask me when my family are going to be visiting I am running for the hills as Denial is a destination I would much rather prefer to Bedside Bad News. In saying this the human spirit is fantastic, and after listening to others stories, I for one can’t help but be amazed at how strong some people can be when faced with all that life can throw at them. I listen to their tales and wonder how I would cope. While I would like to think I would cope with grace and dignity, I do have my doubts (I know myself), however I also hope to never have to find out. So lets pray that my anti’s do their job and do it well, and maybe then this time next week I will be back in the real world, as I believe (sadly) that someone else probably needs this bed space a bit more than me.
So back in hospital again, neutrophils are down to 0.1 and I am needing more blood AGAIN. Please, please donate if you can – it is so important for so many people. Being back in hospital is always interesting with new staff and new roommates to get to know This time the people I am in with are really quite ill but they were short of beds so here I am. Today I had a big decision to make about whether I was going to start my course now or in six months time. In the end I decided 6 months would be the best idea as I have no energy at the moment and still don’t know what the next step of my treatment involves. While I have never been really “sick” since that first infection I am always completely exhausted in a way that I have never been before. It is hard to explain how bone deep it goes and how sometimes even replying to a message or making a phone call takes a Herculean amount of effort. There are some days even getting to the hospital is a killer and I am not daft enough to think I can then sit and study afterwards. So I have a six month reprieve and by then I hope to be on my feet again, fully fit and ready to go and if not? Well we will cross that bridge when we get to it.
New Year -new me? Not quite.
New Year – new appreciation ? Yes
This time last year my life was very different from what it is just now. For starters I was working (right now) in a job that I love and I had also just brought in the New Year with my family. While I had a good time I must admit that I had definitely not appreciated all of that as much as I should have and that is hard for me to have to acknowledge. This year I was in bed for the bells having spent 30+ shitty hours in hospital. However this year while not participating in the festivities I do appreciate everything slightly more. I appreciate my family and the friends that I have in my life (both the old and the new) you are all amazing and inspire me to be a better person. There is something quite hard and sad about going for all these appointments and treatments by myself but I know that I am never alone and at any point I can pick up the phone or post a message and there will be someone there for me. I also appreciate that maybe I am learning something when I go to these appointments by myself, as I then talk to other people and hear their stories and realise that for all the darkness we hear about each day, there is an awful lot of light and love in the world. That love and light includes the perfect strangers who donate blood so that I, and all the other patients, can stay alive and face another day. Yesterday I had four units of blood given to me and at no point could I take for granted the gift that some perfectly random stranger had given me. That light also includes the work that all the hospital staff do, a more dedicated team you could not find (even the ones that make me cry). This year I am not going to make my usual resolutions but I am going to promise myself to live in the moment, to love more, to laugh more, to be kinder, to be a nicer version of myself. Basically at the start of this year, 2016, I may have cancer but I am still here, still fighting, still loved and cared for, caring and loving and that means more to me than I ever truly understood or appreciated before. So while I am not saying things are going to be easy, I am going to face the challenges head on, revel in the good bits, fight through the bad and hopefully when I look back at my life this time next year I will be cancer free and happy with what I see.