Rare Diseases Day 22

 

Today is Rare Diseases Day and as my original diagnosis was a rare blood cancer, I thought it would be a good day to write a new blog. 

I’m my last update I explained that I’d been an inpatient and they were treating me for pneumonia. It seems I have a fungal lung infection that then caused a bacterial infection. I was put on some strong antibiotics as well as a hefty dose of antifungals. 

I got out of the hospital Sunday night which gave me a day to prepare for my friends funeral that I was taking. I felt pretty awful. I’m normally very quick in writing liturgies and personal eulogies. I’m lucky that I have this ability to sit and let it all come out in one stream. What I found was that I kept losing my concentration. The words would also start to swim in front of me on the screen. It was a strange experience. I kept at it but it took me twice as long. The other thing I noticed was I was shaking. My hands had an obvious tremor. Also my legs were uncoordinated. If I had to step over something, I’d really wobble. On top of this when I was in the car, I’d look up and not recognise where I was despite it being a familiar road. In what is highly unusual for me, I asked my other half to drive. This went on for a few days. I felt like I was dying. I was uncoordinated and clumsy. I couldn’t concentrate and I was very shaky. 

Despite all of this I was determined to take Eileen’s funeral. It was at a nice time later in the afternoon so I didn’t have to get it together too early. My lovely Maggie drove me to the crematorium and went for a wander in the grounds while I took the service. When I write these liturgies I always print them in large font. This makes it easier to look up and connect with the people at the service and navigate your way back to where you’ve left off.  This was working fine until we came to the hymn. The family were keen to have a hymn because their mum loved music and singing and used to be on the rota to play the recorded accompaniment during our church devices. I told them all they needed to sing. The only problem was the backing track was a choral version that was set too high for congregational singing. Normally I would belt it out and try to encourage others to join in. Sadly though my lungs were not up to singing. The effort it took started making me shake from head to foot. The small print of the hymn words meant the words were swimming before my eyes and I couldn’t find my place. I had to grab the chair beside me at one point and I also gave up on attempting to sing. 

It’s never happened to me before.  I felt vulnerable in that moment and just decided to concentrate on my breathing. Fortunately I was able to dig deep into my soul and find the resilience and resourcefulness I needed to get through the rest of the service. I was so pleased to have pulled it off without incident or anyone noticing. I hope I did Eileen proud. May she rest in peace. 

The next day I took it really easy and recharged the batteries. Then I had to go for a check up to the hospital. I explained how I was feeling and that I don’t remember ever feeling so frail and vulnerable. Normally I sleep like a log for 10-11 hours a night. I hadn’t slept for 3 nights more than a brief doze and this was also making me feel very spaced out. I told the doctor and it seems that the strong antibiotics were the culprits. Also the antifungals were causing problems so they changed both of them and I slowly started feeling normal again.  It’s not until you’re really sick that you realise the huge impact that some of these life saving drugs have on the rest of your body. 

The current additional meds will need to be taken for around 3 months. Healthy adults do not get fungal lung infections. It’s something that only happens to immunocompromised people like me. Fingers crossed there’s not too much lung damage. 

I’m feeling slightly sad just now at the impact all of this has had on my voice. I had to give up so much over the years. Football was a hard one to let go of. Hill walking and circuit training and bike riding all have gone by the wayside. What I’ve held onto was my singing. The last couple of years with covid put pay to communal singing for me. The hard thing for me now is that I just don’t have enough puff. I’ve been struggling to get to the end of the line of music before taking a breath for a while. If you sing with others you can hide that you a breathing in the wrong places. These days though I can’t push enough air out of my lungs with my diaphragm to make a good quality sound. Music is the language of the emotions and it’s speaks for us when we can’t out into words how we feel. It’s also good for you mentally and physically. I really miss it and don’t feel I’m ever going to get back to be able to sing in cathedrals when my old choir covers the cathedral choirs for absence. 

On this rare diseases day I wanted to share with you how debilitating it is to have a rare blood cancer. Then after transplant to have rare side effects like losing my hearing and the ongoing battle with GvHD (graft verses host disease) and now lung damage due to a fungal infection. All these things are rare and people like me are beginning this journey every year. The big cancers of breast, lung, bowel and prostate take the lion share of cancer funding. The rest of us have to fight our corners to shine a light on to the issues. Please help us share our stories of living with rare diseases so that funding is given equally and also so that people begin to recognise the early symptoms of blood cancer. In case you don’t know what they are its:

fatigue

breathlessness

bruising 

night sweats 

prone to infections 

If you are experiencing any of the above, please see your doctor and ask for a blood test. This will be enough to show if there’s a problem that needs further investigation. 

Thank you to everyone who has helped me with living with my rare blood cancer. My family and friends  are an amazing bunch. I’ve also met many dedicated medics. I’m really proud to be part of MDS UK which does so much to demystify this appalling illness and bring comfort and support to so many. On this Rare Diseases Say 2022 I dedicate this blog to Sophie and all the staff and volunteers at MDS UK. You will never know the difference you make to so many. Keep going all of you, we need you and the world needs more people like you too.