..Myeloma is shit. It is a life sentence that takes control of your future. I am not brave and I have had enough but they’re is nothing I can do about it. There is no returning to the old me free of the disease because I never will be. Control has been taken away and I just have to put up with it.
The plans my imagination makes up are superseded by those of my body. My physical body has taken control. It decides wether I shall be constipated by the pain killers or have terrible diarrhoea from the strong dose of antibiotics. It decides to cripple my fingers so I can’t find the energy to fight it, to tap away on my computer and write the next chapter of my book. It tells me when to succumb which recently has been most days.
With this terrible disease the best you can hope for is a break from the fight (remission) until the buggers return and take over again. In the end they win it is just a matter of when, another thing you have no control over.
There is no use in pretending I will return to the old me as I won’t, instead I must reinvent myself just at a time when I was feeling good in my own skin. You know when you are at an age when you can sit back and start to enjoy the fruits of all your hard work. Why me? Is it because I am supposed to be able to cope, because I am strong and supposedly mentally resilient? Nothing can touch me for I am invincible. Or is it because those thoughts of being ugly and no good were right after all? Or just pure misfortune, I just happened to pick the wrong ticket?
Ok I can try and look on the bright side and count my blessings. I am more fortunate than some. So to prevent me going any deeper down a rather black hole, I shall list them if only just to remind myself.
- I wasn’t diagnosed until I was 50 ( well 3 days prior to to my 50th birthday, to be precise), some people are diagnosed at a much younger age. At least I have had my children and enjoyed many years free from this life sentence
- My diagnosis was picked up on a routine blood test not because I was already damaged some way by the disease. Often people first find out because of crippling bone pain or organ failure. And most of my life I have been pretty healthy.
- I have a brilliant support network. There are people around me who seem to really genuinely love and care for me. I am not alone on my journey. Family, friends and people who were once complete strangers or I hardly knew, I can now consider as friends.
- I did a job I loved and felt proud of, some people never achieve that. Last night I received a message from my chief exec, it’s so good to know he is reading the blog and that he is behind me and I am so pleased that he met the old me. Last week my manager came and painted my nails. In her capacity of a good friend she spent much of her valuable time off, keeping me company. And I often hear from my colleagues who are working their bollocks off to keep the spirit of Step 2 alive and ensure we stay in business, as well as doing the every day work of visiting children and their families, offering their skills and support and empowering them to achieve better mental health, or supporting the team in an administrative role. Before becoming ill I got to achieve many personal goals, like creating and setting up the service, meeting the prime minister, winning national awards but most importantly winning the respect of my colleagues. I think there is a time when most people feel like a fraud and then a time when you come to realise that actually you do deserve to be where you are. I was lucky enough to reach that time.
- I live in my dream home, surrounded by countryside in a perfect little village. The retired vicar popped in yesterday and many of the other villagers have rallied round and offered me their support. Just look how well the village secrets went. And I have my lovely sister living just down the road.
- I can be proud of both of my children, neither of them even through their teenage years have caused me much grief if any at all. They have grown up to be independent young ladies. both very different, but equally as special in their own ways.
- I found my soulmate, Colin, some people can spend a lifetime searching and never achieve that.
- I do have a positive mental attitude ( well most of the time !).
I am sure there are many more things I can add to the list above and I am truly sorry for my opening paragraph, but I promised myself that I would use this blog to be honest and not just as a way to entertain or please other people, so there you have it.
The reality is that you cannot always be upbeat. I don’t suppose anyone can, never mind someone who as been handed the diagnosis of a presently incurable cancer. Constant pain can seem relentless and I do spend many moments crying in to the arms of Colin and wishing it all away.
I am not brave, like the majority of Myeloma sufferers I am just doing the best I can whilst living with the disease. I will have better days and times again when I am pain free. I will return to work and I have learnt so much through my new experiences.
One thing is for sure, by really experiencing being on the other side of the NHS I feel more proud than ever to be part of our health service. Becoming a nurse is the best decision I ever made and I feel proud of my nursing and other professional colleagues wherever they work within the system, that is so unique to our country.
If you haven’t had a chance to watch it yet try to catch , Keeping Britain Alive: The NHS in a Day. The first episode was on BBC Two on Tuesday 26th March at 9pm, so you can probably get it on catch up TV or look out for episode 2 next Tuesday. The BBC did actually call and speak to me about the possibility of being involved in this programme, but unfortunately they never called back, maybe they thought we weren’t exciting enough for prime time viewing?
To my fellow myeloma buddies, I have learnt it’s about appreciating the days that we feel stronger and not beating ourselves up for not being on the top of the world all of the time.
To my family, friends, colleagues and other readers thank you for sticking with me on this journey and putting up with the good and the not so good times.
Today is a bank holiday and it looks like its set to be another cold one. If at the moment you are feeling healthy please don’t take it for granted, spend just a few minutes of your time appreciating it and thanking the universe, God or whoever you so wish for the privilege of good health.
With much love
Scores on the board
Physical Health = 7
Mental Health = 6.5
1 is everything is just fine, 10 is bad news 😦