Life is on 10% of what happens to you

Amazing to see all the different colours that blood is. It’s been a strange day in many respects. 

I went to bed around 11pm last night and was still laying there wide awake at 4am. This is the second time that’s happened this week and is highly unusual for me. Even if I have something on my mind I usually sleep. I need around 10 hours most nights. At 2am I picked up my phone and checked the side effects of Clarithromycin on the NHS website. Insomnia is in the top 10. Oh my goodness. Only 2 more days of these tablets to go and hopefully my usual sleeping pattern will return. 

I was up early today because I had 3 separate appointments at Guys. The first was physio at 11am. That went well apart from me being late because my PEG pump was being temperamental. Getting out of the house early is really hard. I don’t feel brilliant at that time of day. Then I have to crush a load of tablets and put them down my PEG. Then I need to find the resolve to swallow the rest of the tablets that can’t be crushed. I have to do all this while feeling extremely nauseous and wobbly as well as being in pain and stiff. 

Any way, I digress. My next appointment was at 12 with the dermatology team that specialise in GvHD and are in charge of the ECP treatment I have fortnightly for 2 consecutive days. I saw a new doctor. He is Italian with a really lovely manner. He has changed my anti-itch medication as my skin has been really itchy again. He also said I probably have neuropathy. That’s the first time anyone has said that. I was asking him why my skin felt bruised if I scratch it and if I cross my legs I get severe pain for about 15 - 30 seconds when I uncross them as the pressure comes off the lower leg.  

Since coming home I’ve looked up neuropathy and it fits like a glove with some of the symptoms I’ve been experiencing. Guess that will need exploring next. In my case it’s a result of the heavy duty chemo I had to endure. 

After this discussion I got the dr to look at a few dodgy looking bits on my skin. He then confirmed all 3 were basal cell carcinomas and he would deal with them there and then. He got the equivalent of a blow torch. It contained some really cold chemicals. He then blasted each BCC. It was very stingy and hurt a bit. As you can see from the pictures the one on my leg has been oozing and stained my tracky bottoms. The reason I get these now is directly linked to having to take immunosuppression and is why I have to be extra careful in the sun now. Sad because there is nothing I like more than lying on a sun lounger listening to fabulous tunes and letting the warmth of the sun soak into me and kiss and heal the sore spots. It’s often been the way I relax most and strangely also been the time when I have many creative thoughts. 

After breathing deeply while he tortured me with his “blow torch”, he then said I would need to continue to have ECP fortnightly and it would be reviewed again in 3 months. By then that will be nearly 18 months of 2 consecutive days every 2 weeks. It’s a huge commitment and a tie to having to stay put. It’s hard to get away. On the other hand I am very fortunate that I live in a country with a free NHS and a great bunch of consultants who enable me to access all this expensive treatment and keep finding new ways to torture and treat me. 

I then went into the admin office and plotted all these appointments which will carry me through to the beginning of Feb 2019. 

After this I went for my ECP. You’ll be pleased to know my Hickman Line is working perfectly. This is the 5th one I’ve had and is the first to work so well. Thank goodness for small mercies. 

The man in the chair next to me is someone I’ve smiled at and said hello to before but today we had a really lovely chat. He is a year ahead of me and had his transplant in 2015. He also has a PEG. We had some really similar experiences. He has had ECP fortnightly for over 2 years. Oh my days, I hope something gives in me soon as I really want to get on with the rest of my life outside of the hospital. 

I managed to get back and take my gorgeous 7 year old granddaughter to her first learn to sing group. She asked me to help her with her singing. My good friend Simon runs this group and had space, so it’s a match made in heaven. She told me she really enjoyed it. It was lovely to have this oasis of normality in a busy and challenging day. She is a little ray of sunshine and I am blessed to have her and her 3 brothers as my wonderful grandchildren. 

I finally got home and slumped on the sofa. In the post that I opened when I got back was the results of my Short Synacthen Test. It confirmed I have severe cortisol deficiency. This means my fight and flight response will not work properly and I will need to be in steroids for life now. Oh well. Nothing I can do about that either. 

So today has been trying. I’ve learned that I have probable neuropathy. I have severe adrenal insufficiency. I need to be ultra vigilant with my skin to keep an eye out for further BCC’s. I will have to dig deep at times to make the heavy regime of hospital appointments work not only for me but  for my poor long suffering partner and family.  I also learnt through speaking with my ECP neighbour that life is hard for so many of us. This man has a small child and one on the way. My daughter was young when I was diagnosed. It is hard to be present fully for your children when you feel so rubbish most of the time. When my daughter was younger I had more better days and I hope she didn’t suffer too much. I feel really sad that I can’t do all I would  like with my grandchildren. My daughter said to me once that it hurt her to see me sit in a chair instead of playing with the kids. She said that she remembers me always being such fun when she was small. She knows I’d want to be like that with my grandchildren. At least the wonderful gift that my lovely sister Gail gave me in the form of her stem cells has brought me precious time. I might not be able to be as playful physically as I would like with the kids but at least I’m still here and in their lives. That’s got to be a good thing. 

I’m back at Kings in the morning and Guys in the afternoon tomorrow. Let’s hope and pray it’s less demanding and eventful than today has been. 

Remember people life is only 10% of what happens to you. The other 90% is how you react to it. You can’t change what life throws at you but you can keep your attitude in check. Good luck with whatever burdens you are carrying too.