Dear friends,
Please excuse my very long lapse in providing you with an update of where I’m at. Life, post transplant, continues to be a struggle for me. In fact my quality of life these days is worse than it was pre transplant. I still live in the hope that one day things will improve. In the meantime my life consists of attending Guys Cancer Centre for 2 consecutive days every 2 weeks. I also attend Kings most weeks and sometimes have to visit my local hospital too. I have to be highly organised to fit all these appointments in.
My list of medications is vast. This is another area I need to be highly organised in. I really feel for people who are illiterate of vulnerable. It’s an awful lot to cope with but I’m lucky in that I have a fantastic support network around me.
One of my biggest problems is my ongoing battle with GvHD. (Graft Verses Host Disease) The amazing team at Kings started me on a new immunosuppression drug to try and tackle this. It seemed to be working but sadly made me throw up continuously. In the end I couldn’t even keep an ice cube down. Sadly that medication had to be discontinued. The team are now trying to get a drug released on compassionate grounds. This means it’s not quite licensed yet but probably will be.
On top of this my immunoglobulins are low. This means I don’t produce the antibodies needed to fight viruses and infections. I’ve had flu the last two years. Each time this has resulted in me being admitted to hospital. With all the news about corona virus at present it’s a scary time. I need some infusions of IVIG. Unfortunately there is a shortage of this and my team have to make a case to a panel to see if I am sick and vulnerable enough to have it. The NHS is really struggling at present and I yearn for the day when people realise it’s worth paying more tax to preserve this amazing institution.
On top of hospital appointments, GvHD, reactions to medications, flu and opportunistic infections, I am also suffering from extreme muscle weakness. I fell in the public library recently because my legs didn’t support me as I tried to stand from a low chair. I felt such an eejit!
Another unexpected problem recently involved my Hickman line. It had been blocked and not working for a while then I developed a large swelling near the line that went into my neck and face. I didn’t look like me because everything was so puffy and swollen. An urgent CT was requested which showed a potential clot and several areas of stenosis. This is where the blood vessels narrow and stop the blood flowing through. I ended up needing urgent angioplasty surgery. They put a balloon into the vessel and inflated it then pushed it through to stretch and dilate the vessel. A month later I’m still puffy but the line is working and maybe the lump is slightly less. As a result I have to inject myself every day with a powerful blood thinner. My poor tummy is really bruised.
It can be so hard to be outward looking when there are so many things to deal with. Next week I’m having a general anaesthetic to remove a polyps as well as check out my stomach and maybe remove my PEG. I will be so pleased to have one less tube coming out of me.
This Christmas I was too unwell to send Christmas cards. I’d been an in patient just before the festivities with flu and I felt washed out. Please accept my apologies for not sending a card. You still have my love and hugs. Out of sight doesn’t mean out of mind.
One of the things I long for and also hope will come to fruition this year is to be able to go abroad on holiday again. I’m fortunate enough to be able to go to Ireland but I’d love to go to Spain and also explore more of Europe. I’m also desperate to go further afield and visit my sister in Canada. The problem with all these things is that it depends whether I can get travel insurance before I can even contemplate heading off. Fingers crossed this year will be the one I get to travel again.
Despite dealing with a continuously changing landscape I am trying to do a few things. I still do my regular audio diary with BBC Radio Kent. I get some lovely letters and cards from people who listen to the show. It’s very humbling. I am now also part of the volunteer chaplains that cover Canterbury Cathedral during the day. I am able to book myself on the rota for the afternoon, so that works well for me as I still find mornings difficult. I am getting stronger and hope to soon be able to start taking more services and cover for colleagues who are away. If you need a hand with anything and have a service that needs covering, then get in touch. I need to be active all round because I am more than just the sum of my blood work and physical problems. I am also an emotional and spiritual being. I need to be invited out by friends and have my spirits lifted. I need fun, laughter and mischief in my life. I also need to be creative and be intellectually challenged. All these things are necessary if I’m going to get through all this.
As is always the case, when there is long term suffering or illness, friends can fall away. Some people just find it too hard to stand in the face of such suffering. That can be hard but is also just part of life. People move on and you have to let them go. That can allow room for new people to come into your life though. Recently I’ve met some lovely people. Thank you for bringing light and love into my life.
For my friends of long-standing please accept my apology that I am no longer the same person and can no longer run around like I used to. Keep walking beside me and let’s hope that one day there will be a breakthrough.
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