Back down to earth with a bump.

It is important to visualise, to dream and to be positive but at times you also need to be realistic. This is the lesson I learnt yesterday, not that I didn’t already know it but I had allowed my fantasies to perhaps go a step to far. Yesterday my consultant brought me back down to earth.

I was excited about my visit to see the consultant. I had imagined him hugging me and shaking Colin’s hand,congratulating us for beating all the odds. I had visualised him telling me that now that I had no para proteins in my body I was free of cancer. That is what I, my friends and family all wanted to hear. This is what we had been saying to one another. You don’t have cancer now. The doctor told me differently. The bits I heard before my eyes glazed over with tears and my emotional brain took over from my thinking one were;

  1. You will always have cancer
  2. You still have cancerous cells in your bone marrow 
  3. The blood tests show some areas of high risk
  4. The pain in your legs may take months to get better and in the worse scenario may never go away
  5. You should go and make good use of your local hospice and get to know the people there.

The reality of the conversation as translated later by Colin was; Yes I will always have cancer and that although my blood tests show no para proteins, this actually means that there are no active cancerous cells (just dormant ones) which indicates that I am in a period of remission. The doctor was delighted as to how well I had responded to the trial. He did say there were some indicators in my blood that showed I was in a high risk group but there were also some positive indicators too. The doctor couldn’t give me a timetable as to how long it would be before I needed the stem cell transplant but he did say it definitely wouldn’t be ten years (I am of course going to prove him wrong on this point!). The neuropathic pain in my legs may take several months to subside and in some cases it doesn’t go away all together.

I also met a new nurse who took me through my next time table events, spoke to me briefly about what to expect and have me a big pack of reading material to bring home. My next appointment is May 21st. On this date I will need to get another ECG done , see the consultant and have a two hour slot with the harvesting department, (I think it has another name but I am not sure what this is yet) to go over the consent forms and sign them. There must be a lot to explain if it is going to take two hours?

So my harvesting timetable is:
May 21st – consent appointment
May 25th – chemo
May 26th – injection with growth hormone (this can be done at home by myself or a willing volunteer)
May 27th – injection with growth hormone
May 28th – injection with growth hormone
May 30th – injection with growth hormone
May 31st – injection with growth hormone
June 1st – injection with growth hormone
June 2nd – injection with growth hormone
June 3rd – go in for Harvesting
June 4th – go in for Harvesting

During this period and apparently for a little while afterwards I am apparently likely to be Neutropenic. This means that I will have a very low white blood cell count therefore more open to infection. I apparently must take this very seriously and there is even a special diet you must follow when you are Neutropenic which is a bit like the diet restrictions for a pregnant woman. No uncooked meats, pâté etc, no raw eggs, soft cheese like goats cheese (my favourite) and no probiotic yoghurts. It doesn’t seem too bad a diet anyway.

I must admit I was quite tearful yesterday so I did pop in to see the lovely ladies in the Macmillan room and they helped to calm me down a bit. Maybe it was because I just felt very tired yesterday, perhaps the time away had caught up with me? I suppose also that I had been feeling a lot better and thinking more about my future and going back to work sometime. I think the hospital visit yesterday has re confirmed that my life has changed and that there will be no going back to it as it was. I think maybe I need to take this positively and see it as a time to look at different opportunities. This would all be fine if I could include winning the lottery in my plans then I wouldn’t need to work.

Today I will rest and perhaps start reading the pack of information given to me yesterday. I would also like to get the party invitations done and dusted if only I can get a clear enough head on.

I hope that it’s a good Wednesday for you all.

Try to do something every day that you enjoy as you never know what is around the corner!

Best Wishes

Deborah x

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10 thoughts on “Back down to earth with a bump.

  1. As long as you do something every day that makes you happy then that’s all Elliot & I ask 🙂 whether that’s sleeping, seeing friends/family, painting, watching tv or going out. Or anything else. 🙂 we love you and all want you happy xx

  2. Deb we are all travelling a little on your immense journey.But have faith in the power positive thoughts, they got you this far.Look forward to a chat. See you soon. US.X

  3. ‘Try to do something every day that you enjoy as you never know what is around the corner!’
    Debs this is true for all of us, well or unwell. It’s so important to do…it changes your outlook and affects how you approach things. Great advice! x

  4. Hi Deb, try to stay positive and prove the Doctors wrong – you really are doing so well! Sending lots of love. xx

  5. Theres quite a debate about whether people are currently being cured of myeloma, or if it is becoming a chronic condition (or if “incurable” is more bleak than that). My doc (and I trust him) thinks we’re heading for it becoming a chronic condition, and I can live with that (ba dum tss). Either way, theres no reason not to be optimistic, but every reason to adjust how we live, in light of our greeter appreciation of mortality. I’m wondering too about working full time, or alternatively, making do on less and spending more time with my kids. Once upon a time that would have seemed obvious – Work! Produce! Achieve! – now Im leaning more and more to the “enjoy living” option.

    Having a stem cell harvest is fine, btw. Yes, it’s one more dose of chemo, but you can deal with that. The injections are easy. And the transplant itself, whenever you need it, will be something you will be able to deal with too. I’m amazed at how I’m recovering after mine. I feel much much better.

    • Thank you Alex It’s good to hear that the injections are easy and the whole harvesting process is fine. I am hoping not to need the stem cell transplant for some time yet. Your quite right things are moving so quickly they are bound to find a cure sometime soon, I just hope it’s not too late for us. I think I have just been having some down time as I am usually very optimistic.
      Oh well the sun is shining today
      Deborah x

  6. Well, if anyone knows how to make the most of her life and opportunities it must be you Debs, you waste barely a moment. So not new advice for you, but a salient reminder for lazybones like me xx

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