When you’re in hospital you have even more time to reflect on life than normally. All sorts of stuff goes through your head. Like I’m forever telling people you mustn’t believe everything you think. That doesn’t mean however, that you shouldn’t think through things, especially difficult things.
The first time someone queried a problem with my blood was as far back as the late 80’s. I was anaemic at that time and my cells were large. My GP thought I might be drinking too much. I wasn’t and it settled down so was left. It all came back mid 90’s and I was given a ?MDS (Myelo Dysplastic Syndrome) diagnosis around 1998 and a definitive diagnosis from Kings, the centre for excellence for this rare cancer, in 2000. Strangely enough this was the same year that I started a 3 year theological uni course in prep for ordination. I certainly didn’t make things easy for myself.
Over the years life has been a challenge to say the least. It took me a long time to accept I had to change my life style to accommodate my more fragile physical being. I was forever pushing boundaries and over doing it. I also never told anyone about the cancer. If people noticed I was pale or looked unwell, I’d just say I had an unusual blood disorder. There were a few close friends that I confide in and of course my family. Initially though I tried to protect everybody.
As my illness developed, so my lifestyle had to change. Sadly my social life has really suffered. I haven’t been able to go to so many things I’ve been invited to because I haven’t had the energy or because the other person had a cold or bug. Slowly bit by bit your world shrinks. I fight very hard to keep a broad perspective of life and for it not all to become about me and illness. The problem is cancer can be very dominant.
Over the years I have had sepsis on 11 occasions. Each time there has been a 40% chance of death. Then 3 years ago I ended up in intensive care due to septic shock which carries a 60% chance of death. I really have cheated death on many occasions and beaten the odds. This is bound to change a person. It also has an impact on friends and family.
Some people just can’t seem to cope with it all so well. Friendships drift and some people fall away. It’s hard. This of course is natural over a lifetime. We have all experienced friendships that wax and wane as we change. When a serious life limiting illness is involved this situation is magnified. It’s like some people can’t cope with seeing the sickness and pain. Others maybe miss the easy ness of the previous relationship and find the complications of hospitals and lengthy admissions too challenging. It starts subtly with less texts and calls. Less invites out. Then people stop commenting or liking posts on Facebook. Before you know it there’s nothing much left.
The phenomenon of social media doesn’t help help. It gives an illusion of a connection even when it does not exist. People like me who blog and use social media are often misunderstood. People think they know all that’s going on because they’ve read my latest reflection. The problem is that’s only a small part of the whole picture. I still need contact with people and interactions and political debates and to know what’s going on in your lives. Just being in my own head is not enough for me. If you don’t respond to my posts or never comment, how can I feel connected to you. People, I implore you to just use this info to think about your connections with the people around you and how you are relating. If it’s months and months with no comments or contact in any way, is it a real friendship. It ok to admit things have changed and moved on. As much as I love social media it’s no replacement for real contact and face to face interactions. You can’t give a mate a gentle hand squeeze when you see their eyes going misty. You can’t put your arm around a text when you realise what’s not being said behind the smile. Friendships, like long term relationships, take work from time to time and need to be tended. If you value your friendships please invest in them. Don’t let things slide to social media likes as this can never replace the value of true and real friendships.
Ok enough of my reflections and ramblings about the challenge of maintaining friendships. My health news for those who want to know is that I have some kind of fungal infection in my PEG. Haematologist need to decide what best to do having been given advice from the specialist PEG nurse. I haven’t had results of today’s bloods yet but yesterday I was told my counts are still flat. Last night and you can see it was late from the clock in the picture, I was given a pool of platelets. They call it a pool because it is not just the product of one donor. Platelets are used by the body to clot the blood. Mine have been steadily declining. I started at over 200 and now they are 18. I’m covered in bruises as a result. My neutrophils are still extremely low at 0.02 and my HB is declining again after the last transfusion and is now 80. I continue with the IV antibiotics for another 2 days then hopefully they will stop them. Fingers crossed my temp stays down when they do that. They are keen to do an MRI of my bowel too to check why I get this awful abdo pain at times.
It’s like I’m in for a full service and MOT. Hope I pass with flying colours. I love the quote from the velvetine rabbit. After all these years of living with cancer my body doesn’t look like me any more. The shape of my face has changed due to the long term steroids. I have loads of scars from all the biopsies and lines and I’m incredible unfit and lacking in tone. However I am still breathing and I’ve learnt so much about life and learned to live deep in my heart. Despite the above reflection I have some great friends and a loving family. I have gained wisdom and insight and so much from being ill too so it’s not all negative.
The other photos are of my latest bone marrow biopsy site. It’s the back of your hip that they screw into to get the samples. Then there’s the nice juicy platelets.
I hope wherever you are and whatever you are doing that you have learnt to appreciate the life you have and not yearn for what you don’t. Be blessed people.
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