The reality is…

..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The plans my imagination makes up are superseded by those of my body.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.

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. I found my soulmate, Colin, some people can spend a lifetime searching and never achieve that.
  8. 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

Deborah xxx

Scores on the board

Physical Health = 7
Mental Health = 6.5

1 is everything is just fine, 10 is bad news 😦

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27 thoughts on “The reality is…

  1. O dear Mum. They’re not very good scores for MH & PH. Eliot and I will come and visit you when the scores get a bit better. We love you x

  2. Hi Deb, it is rubbish and crap and not fair. You will start to feel better soon though, the drugs are raging through your body doing harm but also doing so much good. Just look at your results, they were so good last time. These days are made for rest and comfort and I know that everyone will do what they can to help them be as comfortable as is possible. XXX

  3. The reality is…

    that I love you and you are giving an excellent example to everyone around you especially your children and to be able to do that should make you feel very honored and proud

    Love Polly x

  4. Deborah, it’s sad to read that you are at such a low ebb and in constant pain. Pain like that is miserable and draining and it’s only natural to struggle from time to time given the mountain you’re climbing whilst carrying this burden. But i don’t think you can keep a good woman down and I suspect you will very soon return to that woman who defies this wretched disease and challenges its right to pick YOUR body to invade! Thinking of you x

      • You already shine, but today, we’ve been able to take off our sunglasses and see clearly a bit of your reality!

  5. DEborah

    Thank you. And thank you especially for saying you are not brave.

    My daughter Clara had acute myeloid leukaemia when she was four. Like yourself, she went through hell. She is now coming on for 16 and planning a career as a nurse. I’ll foward this to her to read – I’m certain it will inspire her further.

    • That’s good to know, Nursing is a privilege and I am sure Clara’s own health experiences will help her to feel even more empathic towards others. I wish her all the best
      Xxx

  6. Hi deb, sorry you’re feeling so low, I wish there was something I could do to take it away. You are allowed to feel this way, you are going throug a lot. Now take care and have a rest on this cold miserable day. Thinking of you. 😉

  7. Deborah – thinking of you and the sun has come out – so maybe a brighter day? You are an incredible lady who has achieved so much and respected by so many x

  8. Deborah, there are no words for me to say that will make a difference. But i am thinking of you and wishing that I could find some words are miracles. Be kind to yourself. xXx

  9. Deborah,
    I so often read your blog and try to think of the right reply, I never seem to find it. I am still following, you are marvelous. I was feeling sorry for myself this morning, I know it sounds a bit wrong/unkind, but it will help others living with various conditions to know actually it is shit sometimes regardless of how positive and strong you try to be, but that it is kind of in your own hands as to how much you let it defeat you or like you do so often, keep looking at all the positives instead of wallowing in self pity! I truly hope you will soon be feeling a bit better. x

  10. Hi Deborah,

    I have just seen your blog on LinkedIn for the first time. I’m so sorry to hear your diagnosis. I wish you all the luck & courage in the world to fight your battle.

    I’m still often in Hertfordshire. If & when you are ready for a change in scenery or conversation maybe we could meet up for a coffee.

    Love Liz xx

  11. That black hole is there for a reason… for days like this and you have every right to visit. it can offer sanctuary to vent cry scream and is made of tough stuff so give it your best shot!!! However it also offers a ray of light to guide you back when you are ready to leave take your time xx loads of love xxxx

  12. Hi Deb,

    Im am sorry to hear you are feeling so unwell at the minute. I read your posts regually and admire your strength and honeslty in the whole thing. I think alot of people in simialr situations as your self will find your posts enlightening and hopeful. Love to you and Colin and of course the rest of the family. V
    icki xx

  13. Hi Deb, it’s sad to read about all the pain and suffering you are going through at the moment. Hope you are back to full strength soon. Sending you lots of love. xx

  14. I read all of your blogs and find them so inspiring; it cannot be easy to write when you are feeling so unwell. I hope that you start to feel better soon, I send you love and distant healing. Pat xx

  15. Hi Deb, not spoke to you in a long long time, since you adopted Frodo, I can’t express how sad I was to read of your illness today by sheer accident, but your positive can do atittude is truly humbling, I wish you all the best and hope we will meet again sometime. Sue Trundle

    • Hi Sue

      How lovely to hear from you. Frodo is as gorgeous as ever although a bit quieter and enjoys resting his old bones asleep here in front of the wood burning stove. He loves it in our new home in the countryside although every now and then he goes walkabouts and we have to send out the search party. He can usually be found eating the cat food at the stables across the road, good job we don’t see much traffic around here! I am sure we will catch up again sometime. Take care and I hope you enjoy my daily ramblings, some are more positive than others.

      With much love Deb x

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