I am so sorry that I haven’t sent cards this year. I had flu, then an unexpected hospital admission and I’m still feeling a bit grim. I finished my course of Tamiflu and the double strength antibiotics today. I’m hoping that means my washing machine stomach will stop churning and I don’t need to be so close to the loo by tomorrow. I can live in hope!
As you can see the bruises are coming thick and fast. The large dose of anticlot that I inject every day is doing its job. It’s a horrible injection. It really stings sometimes for as long as a minute after. I’m hoping to not have to take it long term. Will see what happens when they do the venogramme to see what damage the line has done and also where and how big is the clot.
I was at Kings today. My lovely new consultant, Camilla was incredibly thorough and I was in her consulting room for an hour. Despite the long appointment, Camilla still rang me tonight about a couple of points she forgot to say.
Camilla was pleased with my progress and all my bloods have gone up.
The other bits of news to bring you up to date with is my immunoglobulin is very low. This affects your ability to fight infection. The lovely new consultant haematologist has referred me to an immunologist to see the best way forward. It’s normally given as an IV infusion but my veins are so bad that might need to do it under the skin which is more complicated. Today it took them 4 attempts and 3 phlebotomists to get some blood.
Next she said I needed another CT scan because there is an abnormality in my duodenum and it’s the 2nd time that this has shown up. They aren’t concerned just want to sort out what it could be. If they can stop the awful belly ache I get sometimes and the running to the loo I’d be eternally grateful.
Next she said that I’m to stop my Tacrolimus. This is the immunosuppression drug. Apparently it has to be well out of your system before I can start taking the new one on Saturday.
On top of all this I’ve also hurt my back and because my bone density test has come back saying I now have osteoporosis, she wants me to have an X-ray. I have two slightly protruding discs. One in my lower back and the other in the middle to my back. She also wants me to start on some alendronic acid to see if they can toughen my bones a bit. This problem has been caused by years of taking steroids.
Lastly we talked about the line. She has been in touch with the interventional radiologist drs who need to treat me and remove the line. This dr has said depending on what they find maybe the line can be protected. Camilla is going to have a meeting with the drs doing the procedure to look at all the options. We also talked about other ways to gain access to me intravenously. I’m being referred to the IV team for that.
The haematology doctors and nurses are a brilliant team to be under and I’m very lucky to have so many experts in my corner.
I’m also blessed to have such a wonderful partner. After 28 years together, to still be going so strong is a testament to our ability to rise to the challenges. Poor Maggie suffers with me through it all. She also has her wings clipped by my inability to travel. At this stage in our lives we thought we’d be travelling the world. I owe a debt of gratitude that in so many ways can never be repaid.
I also have a wonderfully supportive family. To them I say thank you all for your love and support of Maggie and I. I know it’s not easy for any of you, especially when I get really sick. Here’s hoping for a happy and healthy new year for all of us.
I thought I’d finish this long update with my favourite Christmas reading and quote. I found the reading on line and just changed it a bit.
1 Corinthians 13 Christmas Style
If I decorate my house perfectly with lovely tartan bows, strands of twinkling lights, and shiny baubles, but do not show love to my family – I’m just another decorator.
If I slave away in the kitchen, baking dozens of Christmas treats, preparing gourmet meals, and arranging a beautifully adorned table, but do not show love to my family – I’m just another cook.
If I work at the soup kitchen, sing carol in the nursing home, and give all that I have to charity, but do not show love to my family – it profits me nothing.
If I hang on the tree shimmering angels and glittery snowflakes, attend a myriad of Christmas parties, and sing in the choir’s cantata but do not focus on Christ, I have missed the point.
Love stops the cooking to hug the child.
Love sets aside the decorating to kiss the partner.
Love is kind, though harried and tired.
Love doesn’t envy another home that has coordinated Christmas china and table linens.
Love doesn’t yell at the kids to get out of your way.
Love doesn’t give only to those who are able to give in return, but rejoices in giving to those who can’t.
Love bears all things, believes all things, hopes all things, and endures all things.
Love never fails. Video games will break; jewellery will be lost; golf clubs will rust. But giving the gift of love will endure.
“love is what’s with you in the room at Christmas if you just stop opening your presents and listen”
I know this time of year can also be difficult for some especially if you are separated from loved ones or are recently bereaved. If you’re feeling sad light any candle, even a tiny one and say to the darkness, “I beg to differ.” Remember it’s people who die not the love that was shared. “When all that’s left of me is love, give me away”
Maggie and I hope you have a great day tomorrow sharing the love. Merry Christmas Xx
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