Ready…..steady……

So Monday is D-Day as we had expected.

Today was the day that I finally got the details of how my treatment was going to look moving on. I’m not sure I 100% believe them as it keeps changing, but hopefully I now know exactly what will happen as I go into the QE in Birmingham on Monday.

It felt a bit strange today when I went in. It still all feels terribly unreal which is so bizarre considering we have been expecting this since November, and talking about it as a reality since February! I think that it is because I am so well in most ways….even the nurse who did my pre-treatment bloods/assessment today said that I was probably fitter and healthier than her! If it wasn’t for my bad back, I wouldn’t have a clue that I had myeloma.

So that was the first thing that I covered with my consultant. Apparently my myeloma is in my pelvis, ribs, spine and breast bone….but potentially no worse than it was last time, it’s just been measured in a different way (a PET-CT scan rather than a bone marrow biopsy). The pain in my shoulders and armpits doesn’t seem to be myeloma related, and luckily, he confirmed the scan would have shown up any other cancers – I’d been panicking that it might be breast related. He seems to think that the discomfort is more about frozen shoulders!

He doesn’t know why I’m experiencing pain in my back this time, but I think it’s fair to say that is likely to be due to the myeloma ‘mutating’ this time round. That’s the bit that worries me. The feeling that if my myeloma has changed, will my treatment work as well as last time. Or will I follow the route of others, where it doesn’t work and suddenly they’re thrown into 3rd and 4th line treatment.

I was writing to a ‘myeloma friend’ today though and it made me realise that what I need to do this time is to make sure that I don’t spend time worrying about the ‘what if’s’. I did that so much back when I was diagnosed and whilst I understand it was part of the process of dealing with it, I look back and think how much time I wasted being sad about stuff. Sad about whether I’d see the kids get to secondary school (they’ll both be doing GCSE’s in September!), sad about whether Nick and I would grow old together, sad about the things we’d all miss out on. All of which have been irrelevant for 10 years! So, this time, I’m trying really hard to stay positive and not get sucked into that way of thinking – no funeral plans at the moment!

The good news from the appointment, apart from the fact I only have one very small lesion, is that I’ll also only have to go in once a week for the day, and not twice a week like we thought. That is great news as it means that we can work around that with the kids, and might have time to try and get away somewhere in the UK over the summer. I think having time, just the four of us, will be so important to us keeping our sanity, but also to us keeping the communication really open with the kids.

So, in the spirit of not panicking about Monday, this weekend will be looking at decorating the toilet (!), doing some gardening (if the rain ever stops) and spending time the four of us.

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About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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6 Responses to Ready…..steady……

  1. Tim Robbins says:

    Hi Deb

    It was good to catch up with you at the Belbroughton Food Festival (hope you enjoyed the cocktails…)
    I’ll be thinking of you and Nick on Monday I’d like to add my good wishes for D-Day and beyond and trust that the next phase of your treatment goes well.
    BTW – thanks for nudging me to make a fuss about the Blood Glucose measuring device I mentioned – I saw my MP (Margot James – she has a bit more time on her hands now that she’s resigned her ministerial post) who followed up my case with Dudley CCG & my GP’s surgery – I think I might get a result, which will save me £100 per month.

    Best wishes
    Tim

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    • Deb Gascoyne says:

      Hi Tim
      I did enjoy the cocktails…esp the alcohol free one which may be good given what is coming up! I have a horrid feeling I may not be drinking for a while! It was lovely to catch up with you as always.
      So glad to hear that it’s looking good for the blood glucose device….fingers crossed re the savings….more to spend on fine wine hey?!

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  2. Susan Spruce says:

    Hi Deb, just wanted to wish you all the very best and good luck for Monday.
    I know where your coming from about the thinking too much about everything and wasting precious time thinking about what iffs !! I feel sometimes I have wasted my 11 years remission thinking about stupid things, maybe it’s only natural ? I went into the QE for my transplant in 2009 and it was the old part of the hospital then, really rough looking wards but always clean, the care in the hospital was second to none Deb you will be in safe hands, onwards and upwards xxxxxxxxxxxxx

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    • Deb Gascoyne says:

      HI Susan.
      Thank you for your reply. I think it is natural for us to have those moments…..I’m just trying to limit them as they don’t help me or the family. Yes I’ve heard the QE is good and the transplant would be in the new bit so that is meant to be great! Apparently you can walk around the ward as they have filtered air!
      Take care
      Deb xxx

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  3. meeshymeesh says:

    Not sure if you received my long email I sent a few weeks but just read your update and wishing you all the best.

    I was due to start a new treatment plan but after further discussion with my Dr have decided to hold off until after Sept when I get my annual PET/CT and bone marrow biopsy. My reasoning behind “delaying” my change of treatment as right now although my M spike is increasing slowly all other labs are stable and I do or have any of the CRAB symptoms so feel like we are treating the numbers rather than the whole picture.

    All the best for Monday Michelle Gillet – The Brit from South Florida that is sending some sunshine ☀️ your way

    Sent from my iPhone

    >

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    • Deb Gascoyne says:

      Hi Michelle
      I did reply to your last message on here? Your situation sounds similar to me…..no CRAB symptoms. Although I do now have the bone pain so there’s no way he would let me postpone now.
      Keep in touch about how September goes.
      All the best and thanks for the florida sunshine!
      Deb xx

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