Christmas fun and challenges

Dear All,

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

What a clot!

It seems the weather backed how I was feeling today. I’ve attached photos of the moody skies over London which I viewed from the hospital waiting room. It’s not just today. It’s been one of those weeks. I was meant to have 4 different appointments as the week unfolded. I went to the first one on Tuesday and that’s when the fun and games started.

I was sat in the haematology waiting room when the consultant I know very well came over. She told me she had asked a new consultant to the department to see me. She was hoping that this consultants fresh eyes might pick up on something that is being missed. I was happy with this and appreciate that they are still trying hard to fix me.

The new consultant was lovely. She asked me how I was feeling. Then she said had I noticed my face and neck were swollen. I said yes but I’d put it down to steroids. She said that Victoria, my long standing consultant, felt that I didn’t look right and the puffiness was not normal. The new doc gave me a really good going over and said she felt I had a clot and needed an urgent CT scan. I explained I had a dermatology appointment but the doc insisted this was more important and dermatology would need to be rescheduled.

I had the scan and a clot was provisionally confirmed . They still needed the radiographer to report on it but they wanted to start treatment straight away. I now have to inject myself every day with a large dose of blood thinning medication. I was asked to come back on Thursday to discuss treatment plans. I had arrived at Kings at 12 setting off from home an hour earlier. I got home after 8pm. What a day!

Today I set off for the hospital at 2pm. I had to go to Guys first for a dental appointment. They are very good at looking after my mouth GvHD. Unfortunately due to the weather, traffic conditions and the fact that everything takes so much longer when you are medically complicated, I had little time to get to haematology and rheumatology where I had follow up appointments. Guess why happened? Yet again I missed an appointment and couldn’t see the rheumatologist. They had cancelled my last app so I was long over due a review. Haematology told me that the clot is outside my Hickman line but they are still waiting for the full report. Then they dropped the bombshell. My line has to come out. Regular readers of my blog will know I’ve had 6 lines inserted. They are incredibly painful to have put in and taken out but it’s the only way to access my ECP treatment. I was also told I can’t have ECP until I’m 6 weeks clear of treatment for the clot. This thought fills me with dread. This means my GvHD symptoms will flare. Also there is no guarantee they will put a new line in as there maybe too much damage in the vessels. I’m absolutely gutted.

Fortunately I bumped into the specialist nurse from ECP. I explained what’s happening to her. She said it might be possible to give me ECP once I’m off the blood thinners. One of the possibilities is that I get admitted and have a femoral line inserted. This goes into your groin. Then have ECP and  go home the next day. Then the whole process is repeated every two weeks. Sometimes I just want to shout and scream. It’s hard enough coping with all this any way, yet alone have to put up with all these complications. It’s rare that I feel sorry for myself but this has pissed me off.

I think what’s added to my mood is missing the other two appointments. My skin is awful just now. It bruises really easily but that’s probably down to the steroids which the new doc slowed down the weening of.  Now I drop by 1mg every 10 days. I’m currently down to 9mgs. Can’t wait to be off them. As well as bruising my skin is very very itchy. That is a quality of life (QOL) issue. It’s like having electric ants crawling all over me at times. It’s almost unbearable. I can control myself and not scratch when I’m awake but when I’m asleep that filter doesn’t work amd I wake up covered in bruised and scratches. They look awful as you can see from the pictures.  The red ones are from scratching and the blue/purple are from where they tried to get a cannulas in for my CT scan. I also missed rheumatology and really wanted some tips on managing my very stiff, painful and weak muscles and joints. Again this is a QoL issue.

I know the clot is life threatening. I’m not stupid and I’m grateful that my fantastic team picked it up. What saddens me is that the appointments that would have helped my QoL were the ones that had to be shifted. Yet in a weird way they will make more difference to how I feel.

Despite missing out, both departments were helpful. The receptionist squeezed me in next week for the dermatologist and I literally bumped into my rheumatology consultant in the corridor. He said he would see me in a special clinic he is running on New Years Eve I guess I should be grateful and concentrate on the fact that Kings are saving my life again and nice people heard me and accommodated my request to be seen sooner rather than later.

If you are the praying type, please pray that things work out and the clot disperses and that the GvHD (Graft Verses Host Disease)  doesn’t get too bad and I can start treatment again as swiftly as is possible.

Finally I also want to say thank you to my long suffering partner and family who always bear the brunt of news like this and carry the pain and tension too. Love you all loads.