As cancer is so much in the news at present after King Charles shared his diagnosis, I thought I would share my story and give voice to the impact that cancer can have not only on the sufferer but also on all those that love and care for that person.
My rare blood cancer, Myelo Dysplastic Syndrome was officially diagnosed and confirmed in 2000. That’s not where the story started though. I had my first strange blood tests in the 80’s when I was in my early 20s. My GP discovered I had very large red cells and was a bit anaemic. She asked me if I was drinking too much and gave me some iron and left it at that. This continued to come up as an issue every now and again for the next few years.
One day my GP phoned me at work and asked me if I was lactating. I started to laugh and asked her had she rung the right patient? She said that my prolactin was sky high. She repeated the test a couple of times and got the same high reading. Also my cortisol was high too. On top of this some of my thyroid tests were a bit off as was my calcium but not all of them were off. She eventually referred me to a specialist. I was given a brain scan as they thought I might have a pituitary tumour. This was negative. I was prodded and poked many times and by a variety of specialists. Lots of things were just slightly off but nothing conclusive was discovered.
After a couple of years I was sent to a local haematologist as the one consistent finding was the large red cells and the low grade anaemia. They did some tests and said that it could possibly be MDS. So my diagnosis became ?MDS. Eventually in 2000 I was sent to Kings who did a bone marrow biopsy. This was when I got to meet the amazing Professor Mufti. He told me it was definitely MDS and put me on what was called “watch and wait” It’s a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it and the term used now.
As the years rolled by the appointments got closer together as my illness progressed. I’ve had sepsis numerous times. On one occasion this went to septic shock and I ended up in ICU. My poor family were told my organs were failing and I may die. As well as all this I’ve also had serious line infections from having a hickman line inserted into my chest which would sit just above my heart. I’ve had NG and NJ tubes and eventually a PEG J inserted in my tummy due to long periods of not being able to eat. I had this for a couple of years.
When all this started I was a young fit football player. I never walked any where, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies.
I had a stem cell transplant in Oct 2016. My amazing younger sister was my donor. We had a tough childhood and I did my best to protect her. She felt this was a way of paying me back and was really keen on helping. That was because there wasn’t a good match for me on the system. Siblings are only ever a 1 in 4 match so we waited with bated breath. Gail rang me in floods of tears one day and I thought something awful had happened. Then she managed to get it out that she was a match. We were all jumping for joy that day.
My life has been saved many times by the amazing team of haematologists and allied health care professionals at Kings but there is a cost. My quality of life is much less than what it was. I now walk very short distances with a stick or use a mobility scooter. I have serious hearing loss and wear bilateral hearing aids. This is due to damage from the high dose chemo and antibiotics. I have myopathy which is muscle weakness from all the steroids I’ve needed. My lung function is not what it used to be and I get breathless very easily on exertion or when singing. My skin feels like it constantly has ants crawling all over it. I have awful reflux and wake up choking in the night. I can’t lie down at night because of this and that has an impact in my neck and shoulders. I get ulcers and lesions in my mouth and several of my teeth have cracked and snapped off. My muscles and joints throb, burn and ache. I haven’t been able to work since my transplant and this has been a big blow. The list feels endless and there’s often a new issue to add.
Despite all of that, I’m glad I’m still here. I’ve seen my daughter grow up into a wonderful woman and capable mother. I’ve loved and nurtured my 4 beautiful grandchildren and miss hugging them terribly due to ongoing shielding. Amazingly I’m still here and in love with my long suffering partner. When someone in the family has cancer the whole family has cancer.
Cancer takes a lot but it also gives a lot. It has taught me to live deep within my soul. Its opened up honest conversations in my heart. It’s taught me what’s important in life and not to sweat the small stuff. It’s made me even more resilient than my unusual childhood had already made me. It’s introduced me to some fantastic people among the patients, doctors, scientists, advocates, allied professionals, admin teams, cleaners, patients support groups personnel and charity workers.
I’ve also met two amazing sisters and a brother and their wonderful families who I had never met before. We share the same dad. My cancer diagnosis spurred me on to keep looking for them. I’m so glad I did.
I am also blessed to live in a country with a first rate health service. I have the most supportive and loving family around me. Not everyone is so fortunate. I also have some very clever and creative consultants and medics who I trust and who always have my best interests at heart even in these strange covid times we are living through.
My job is to keep on top of it all and not curse the darkness but just keep lighting candles.
My brilliant medical team continue to touch me with their commitment and faith in me. I’m also willing to give anything a go that may help. Advances are being made all the time. What I have to do is when I get to the end of my rope, I need to tie a knot in it and hang. So far, whatever obstacle, I’ve always bounced back. I have to choose to live in hope.
To all of you at different stages of your own story including The King, I write this to encourage you. Sometimes the only thing you can do is grit your teeth and breathe through it. There will be days though when the smile of a grandchild lifts your day or a cuppa with a friend eases the burdens or a hug from the partner reminds you there’s more to you than cancer. I try not to be defined solely by my illness. There is so much more to me than cancer and hospitals and medication.
I’m a partner, mother, grandmother, auntie, sister, cousin, niece, priest, friend and neighbour. Cancer can’t rob me of that and I choose to keep moving forward and step out in the hope and light of each new day.
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