World Blood Cancer Day 2022

As today is World Blood Cancer Day I thought I should do a post about the continuing trials and tribulations of a life differently lived due to blood cancer and the effects of treatment. 

Many of you know but for new readers this story started when I was diagnosed with MDS (Myelo Dysplastic Syndrome) a rare blood cancer when I was in my early 30’s. I’d had weird blood tests back as far as my early 20’s so there had been a problem for a very long time. It took a while to diagnose me because statistically I was not in the demographic. Most people with MDS are diagnosed when they are older and it effects more men than women. Trust me to be different! 

I lived with the condition secretly for many years. My poor old long suffering partner knew but I even kept some facts away from her in the beginning in my bid to not worry people. I used to say when people asked why I looked so pale that I had a funny blood disorder and left it at that. 

As the years went by I was hit by more and more bouts of sepsis. Sepsis is a very serious condition with a 40% mortality rate. The reason I kept getting it was because my blood wasn’t producing enough white cells. This makes you prone to infection. MDS also affected my red cells and platelets. Some MDS is confined to one aspect of blood but mine was what they call multi lineage. That means I would bruise easily at times and also become seriously anaemic and need blood transfusions. Each time I got sepsis, I would fight my way back and after recovering I would get back to full time work. The dips and hospital admissions were getting more frequent and I was beginning to struggle. For my 50th birthday I wanted to go on holiday with my extended family. 13 of us went to Majorca for a couple of weeks of chillin’ in the sun. We had a super time including a brilliant day out in a speed boat. The day before we were due to fly back, I was taken seriously ill. I’d been sick in the night and I had a temperature in the morning and was a bit confused. My partner marched me straight down to the doctors. Thank heavens she did. The doctor didn’t speak English. I don’t speak Spanish. He took my temperature which was really high. Then he took my blood pressure, pulse and oxygen levels. All were in my boots. He looked at me, then looked at his readings and he banged the machine and did it again. Same thing happened. He was in disbelief that I was still upright. The next thing I knew I was put on a bed and I was surrounded by medics and had needles put in my neck and my clothes cut off. I had developed sepsis again but this time it had developed into septic shock and that has a 60% mortality rate. I was placed in ICU and my poor family were told I was going into organ failure and I may not survive. 

I can’t image how hard it was for my daughter and sisters and extended family to fly home not knowing if they would see me again. Our travel insurance enabled my partner to stay on with me. The Spanish system was excellent and they certainly saved my life. I got out of hospital after 11 days and then had the best part of another week before I was well enough to fly. 

It seems I have more lives than a cat but my medical team were worried that one day I wouldn’t bounce back. They prepared me for a bone marrow transplant which happened in October 2016. They started to search the bone marrow registers but no one was a good match for me. They said they would test my younger sister as she was the only full sibling I had. They warned us both that there was only a 25% chance of a match with any sibling. Fortunately, Gail was that match! 

The transplant was a gruelling process but I embraced it warts and all as I hoped it would put me into remission and give me longer on this earth. It has certainly done that because 5 years later I’m still breathing. 

Sadly though I live with the consequences of such harsh chemotherapy. I also have muscle myopathy (weak muscles) probably from all the steroids I’ve had to take. I have still got a wonky immune system that is not strong at all. I am treated with IVIG to give me some antibodies but I can easily pick up infections. If I do get an infection it seems to have a dramatic effect on my weak bone marrow and it goes into free fall and all my counts bottom out. My fantastic medical team at Kings keep a good eye on me and if they spot that process happening they admit me and fill me up with strong antibiotics. As I am fragile in that way covid has been a nightmare. I’m still having to shield. I haven’t hugged my daughter, grandkids, sisters, brother, extended family and friends since this horror started. I’m very tactile and I miss that contact. However I am blessed to have a garden that I make really good use of during the warmer months and entertain people. 

Some of the side effects of all that treatment have been serious damage to my hearing, lung damage which leaves me breathless on exertion, muscle wasting, skin itching, cataracts, dry mouth and eyes, gut and absorption problems, gastroparesis and reflux and dental issues. I had a condition called SVCO which has left a few issues and I had a small stroke last year. I have also developed osteoporosis. 

Despite all that I count myself lucky. I’ve seen my daughter grow into a beautiful young woman and a fantastic mother. I’ve seen my 4 grandchildren born and grow. I’ve proudly watch my niece finish her degree and start to make her way in the world. I’ve celebrated more than 30 years of love with my amazing soul mate and partner. I’ve presided over my sister and mothers funerals as well as many other family members and friends. I’ve welcome new life to the world and given thanks in baptism for them and I’ve married people and celebrated love. 

If you are newly diagnosed, do not despair. I was diagnosed in 2000 and I’m still going. 

One of the things that ill health has taught me is to live deep within my soul. I don’t sweat the small stuff or the big stuff. I know I’m blessed to live in the time I do where all these treatments are available to me. I’m blessed to have such a supportive family and friends. I’ve also got to know many virtual friends all over the world that I wouldn’t have known otherwise. 

Living with blood cancer is not easy  but it doesn’t have to be the end , it just means letting go of the life you thought you’d have to then live the life you do. It’s ok to struggle. These things are not easy but the struggling helps you to be the best version of you that you can be. 

On this World Blood Cancer Day I wish you every blessing for all your experiencing and going through. Just hang on in there, some of the best days of your life hasn’t happened yet. 

Garden Blessings

 

Sometimes I just don’t know where to start. I’m in the midst of one of those times where I just have to keep breathing. 

Today is a big Kings Hospital day. I left home shortly after 8am. I was due to have IVIG at 9.30, then a skin biopsy at 12, then haematology clinic at 1.30 and finally rheumatology at 3.20pm. It will be a minor miracle if all that happens without any hiccups. 

Tomorrow I’m back at Kings to be admitted for a small op to tighten up the muscle between my oesophagus and stomach. What a life eh? 

I’ve been feeling really tired for the last few days. Let’s hope the good sleep with the general anaesthetic perks me up. I can live in hope. Lol. 

One of the good things thats been going on recently is being able to get back out in the garden. It’s been so nice to hang out with family, friends and neighbours and share some good wine and food as well as great conversations. My poor mate Alison came from Cumbria for a visit. Sadly it was bloody freezing that day. We wrapped ourselves up in blankets and enjoyed the conversation. I hope we have a warm and dry summer so that we don’t have to freeze when catching up with people. 

One of the really good things that’s happening for me just now is I’m almost there in getting my bike back on the road again. I haven’t ridden “Theo” for just over 7 years. Being a motorcyclist is part of my DNA. I’ve had bikes since I was 17. It gives me such a sense of freedom. I feel like I’m at one with the bike as I glide through the air. Many of you know I suffer with terrible nausea and vomiting. When I’m on the bike that goes away as I feel the air whistling around me. It’s so refreshing and invigorating. I’m very happy about that but I know my poor long suffering partner isn’t that impressed. What I always say to people is that it’s really important to live until you die. Being wrapped up in cotton wool is like a slow death to someone with an adventurous spirit. Watch this space as I get back on two wheels and have a new set of adventures to blog about. 

Last week I found out that a lovely man who had been very important to me as a teenager died. David was the priest when I showed up as a street urchin come new chorister. The choir trainer at the time was called Gerald Gostling. He used to keep me behind after choir practice to sort out my diphthongs. Lol. For those who don’t know what they are it’s the point in the word where the vowel sound changes. If you have a South London accent like me you change the diphthong early. When singing it’s important to change it late. He also made me practice my vowels so I wouldn’t stick out. I remember all that so fondly. I still have my London accent but you won’t hear it when I sing. 

Any way getting back to David. He was a fairly traditional priest. He had a big pastoral heart and helped a lot of people. I was encouraged to speak to him about my unhappy home life. I felt he listened and understood me. Even when I ran away several times and he was left with the task of taking me home, he never berated me. He made me feel that I had some genuine grievances and he didn’t judge me. He was the first person to stand up to my dad for me and I loved him for it. When he hugged me I felt safe and loved. 

Despite all that love and good church based influence, I was still a mischievous imp. David and his wife Mary had 3 children Peter and Stephen who were twins and Carol. When we were younger teenagers we were all really close. At 17 Peter and Stephen went in separate directions. Peter Became a Verger at Norwich Cathedral and Stephen joined the army. There was one occasion when David was away on retreat. Stephen and I “borrowed” his car and drove to Norwich to see Peter. I did some of the driving despite not having a license. It was great fun and we never got caught. Funnily enough I think the car was a green hill man imp. Lol. Those were the days eh. 

Sadly Stephen died in an accident about 10 years ago. My heart goes out to Peter, Debbie and Carol and their families as well as Honor at this sad time over the loss of David. 

It’s taken me a couple of days to write this as I’ve been so busy with hospital appointments. On top of what I mentioned above over the last 2 days as well as seeing the 4 consultants in their different specialisms, I’ve also had a skin biopsy which left me with 2 stitches, a photo session with a medical photographer and an X-ray of my neck. The next day I had the ARMS procedure (anti reflux mucosectomy)  under general anaesthetic. The anaesthetist was lovely and had read up about me waking up under anaesthetic before. She said I would be fine and she would look after me. I warned her I had problem veins and it took 3 attempts to cannulate me the day before. She said she was confident and was only using a small one. I didn’t like to say they even have trouble trying with paediatric ones with me. The first try didn’t work then bled everywhere when she took it out. Typical. She got in on the second go though. She gave me a strong painkiller and said I should begin to feel woozy. It was nice. For the first time in ages my neck didn’t hurt. Then she slowly put in the anaesthetic. She was talking to me and said to go to my happy place. I told her I felt drunk. She said that’s nice, I said yes and very unusual, then I don’t remember any more. It was lovely. 

When I woke up I had a bit of a sore throat and a slight chesty cough that hurt  my chest when I coughed. My stomach felt like it had been messed with but it wasn’t too sore. They had booked me a bed for the night as I’m a complicated patient but I’m also very tolerant of all these medical interventions and I cope well. I asked if I could go home and they were happy to let me. I just need  to stick to a soft diet for a few days. 

Since I’ve been home I’ve taken it a bit easy as my tummy feels a little delicate. I went to vote on my mobility scooter and went to the wrong polling station. It’s all changed with the new ward boundaries. Never mind. Serves me right for not reading my info properly. 

Today I had a lovely time in the garden. First I had a leisurely lunch with my daughter. I’m so proud of her and the mother she has become. I miss hugging her enoumouswith 3 of my neighbours. Over a few glasses of wine (them no me) Lol we put the world to rights. It was a lovely sharing of the lives of 5 women. All of us come from differing backgrounds but shared the common human experiences of life. We drank from the well of lives deeply lived and experiences had. It’s such a shame that people don’t gather regularly to just chat. We all learnt from each other and I’m sure we each took things away from the richness of the conversations. 

One of the good things about the pandemic is that it has built community in places. In the last weeks I’ve had lemon drizzle cake from two different neighbours as well as rock cakes and rhubarb crumble. When my partner makes nice bread or rice pudding we share that with people. All these little things add up and really help in getting through this tough time of continued shielding. Of course I long for the day when I can be free again but I also count my blessings to have so many great family, friends, neighbours and NHS staff in my corner. 

Wherever you are in the world reading this blog I hope you also have some good people in your corner too. If not go and find some. I promise they do exist and the more light you let into your life the brighter your world will become.