Post 18 – Dose of reality

I’ve been busy recently. Really busy. Until last week, I was working 22 hours a week, looking after the kids and trying to fit in 40 Challenges around all of this. So what’s the problem I can imagine lots of you saying. And you’re right to a degree….loads and loads of people do that…..single parents do all of that without any support – at least I have Nick to help me out. Lots of people probably do even more than me.

BUT, every now and again, I get reminded that I am not quite the person that I used to be and that my health is a little bit wobbly. Don’t get me wrong. I am very, very clear that I am lucky with my myeloma. It could have been so much worse. I could have relapsed by now, I could have had bone or kidney issues. I could be constantly ill. So this most certainly isn’t me moaning about it, but just me trying to let people know how things are.

Generally I am really well. I get on with everything these days, and rarely think about my myeloma apart from as a fundraising focus. However, underneath it all, the drug that I am on that I believe keeps me in remission (Revlimid), causes me to have low neutrophils. The lower my neutrophils, the greater my risk of infection. If I become neutropenic, I am at risk of being taken into hospital until I’m not! Basically it would mean that my body couldn’t fight the infection efficiently and I would need to be monitored. At the moment, I have neutrophils of about 1.0….a bit on the low side. If they went under that and I got any sort of infection, I could be admitted.

I know all of this. But I slightly stick my head in the sand, ignore it and keep going. Last week I kept going because it was my last week at work. Then I had the sad event of my godmothers, husbands funeral…I wasn’t about to miss that as she (and he!) have been amazingly good to me throughout my life and now I need to be there for her. And then I fell flat. I got aches, headaches, a sore throat and a cough. I spent the Friday in bed…..until the evening when I made a couple of cakes for one of my challenges that we had on the Saturday…..Nick was NOT impressed. And probably he was right as I felt awful again by Saturday evening. We had to spend fathers day apart as he took the children to visit his 96 year old nan and I couldn’t risk making her ill. I’m still not well although now I think I sound worse than I feel.

it is the one bit that frustrates me these days. I want to keep going like I used to be able to and I don’t want to feel like people are always watching over me, that I have to be careful with what I do, or that I have to ask for help. I want to be 100% again, and not just 95%. Greedy isn’t it?

As I say, I shouldn’t complain though….I just wish I didn’t have that niggling reminder of what my reality is these days!

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If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

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e.g ‘DEBG99 £40′ if you want to donate £40

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About Deb Gascoyne

I am wife of one, mother of two 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 :-)
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13 Responses to Post 18 – Dose of reality

  1. HI, Deb, this so sums up just what life is like for those of us with Myeloma. I overdid things last Thursday – I know how lucky I am to be as fit as I am – and am still trying to recover 4 days later. The constant fear of an infection and a hospital visit is always with us,( my neutrophils are 0.7 !! ) And , yes , we do ignore it all to an extent, if we think about it all the time, it gets so boring ! Jeff

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    • Deb Gascoyne says:

      Take it easy Jeff! Don’t want to find you in hospital! Btw I’m out and about at the moment but thanks for the latest donation on my just giving page! You’ve done amazingly! All the best and let’s catch up on email v soon. Deb x

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      • Hi Deb, Neutrophils 0.7? Turns out it was a typing error on the Doctor’s letter, should have been 3.7 !! Phew, one less thing to worry about.Jeff

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      • Deb Gascoyne says:

        So glad to hear that!! I was surprised they weren’t more concerned if it was 0.7!!! Think I would have been kept in! Enjoy the sunshine and the weekend. Deb x

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  2. I don’t think that fear of being ill/myeloma returning will ever completely disapear, however much I try and ignore it. Although since I stopped REV on the maintenance trial in January 2014 my neutrophils have slowly crept up to 2, platelets are still under 100. Would love to know if the tired feeling or ‘hitting the wall’ as I call it will last for ever. At least the sun continues to shine 🙂 x

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    • Deb Gascoyne says:

      I know what you mean Sarah. Good to hear your neutrophils are better. How has your pp reacted to coming off the revlimid. I’m paranoid about it! Can I ask why you came off it? Cloudy here today but nice and warm 🙂

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  3. I got a combination of Rev and voronistat on a maintenance triaL after SCT. I didn’t like the side effects of vor (I’d been fine doing 5 cycles of rev as treatment). So after discussions with team decided quality of life was important. 11 mths post SCT, pp is still undetectable, platelets around 100, WBC just about normal. Only thing I take is bonefos daily (bisphosphonate). Blood tests every 2 mths. Although I have a lovely bone marrow biopsy this week for the trial :/ Had one cold which lasted 3 weeks in May but have avoided anything else. Just tiredness and aches and paranoia!

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    • Deb Gascoyne says:

      That’s great that you are doing so well! I’m on revlimid on its own. Good luck with the BMB – drugs, drugs and drugs is the answer to them I’ve found…gas and air, and a bit of diazepam and I almost enjoy them now 😉

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      • Wow I must be missing out on all those drugs LOL. Local anaesthetic is all I get, but the consultant seems good, I just get a brief shooting pain down one leg and a sore lower back for a few days. As it was a trial I couldnt just keep with REV, I’ll save that for a rainy day when/if it returns LOL
        Hope your cold gets better, I’m looking out of the office at sun 😦

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  4. karenbakingmad says:

    Hi all,
    I was newly diagnosed with asymptomatic myeloma this year and have now been told they want to start Velcade in the next two months. I have two lytic lesions but my bloods have been ok with no significant changes. I feel well and work as a teaching assistant in a secondary school.
    I have two sons and three young grandchildren and I am 53 years old.
    I have two artificial heart valves and am on warfarin.
    I feel so confused and quite lonely as there is no one I know who knows someone who has had it or have even heard of it.
    That is why your blog is such a godsend. Thank you.
    I would be interested in reading about the process of chemo and the effects of it. I have been told I can carry on working. In reality will I feel well enough? So many questions!!!

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    • Deb Gascoyne says:

      Hi Karen
      I’m so sorry that you’ve also been diagnosed with myeloma. I can totally understand your feeling of loneliness and isolation, but would say, that as you move through your journey, you will meet lots of us who, like you were shocked to pieces by our initial diagnosis. It IS scary when you are first diagnosed, and you shouldn’t feel worried about having tonnes of questions or concerns….we’re all here to support you! Just like we all had support in our early days.

      I know a bit about velcade having had it, although I’m assuming that they’ll give you the newer version which is sub-cutaneous (through the skin) rather than intravenously which is what I had. I have to say, that it really kicked my myeloma into touch. I think you can keep working…at least in the beginning. The drugs affect everyone differently. I was on velcade 3 weeks, and then 1 week off. I quickly realised that it was on my week off that I felt the worst and was really tired, but that the week I started back onto it, was my strongest week. Hopefully your school will be good and will be able to work with you as you learn what you can and can’t do, but hopefully you can keep working to a degree at the very least. I think it’s a case of trying it out and seeing how it goes. Don’t be tough on yourself through it all….it really is a journey. If you would rather, send me an email to gascoynedeb@gmail.com and I’m happy to keep chatting and answering questions if that would help?
      Take care and try (!!) not to worry too much. Far easier said than done, I know!
      Deb xxx

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      • Hi, Karen via Deb, I am much ( much ) older than you and Deb, although we were diagnosed about the same time. Deb has been a marvelous support to me over the years. All I can say to help is although now on my third set of chemo drugs I have been fortunate to have kept fairly fit and have managed to keep doing gardening, still getting under my old car. My limiting problem has been back damage caused by the Myeloma rather than the chemo. I do understand how frightening and scarey your diagnosis must be, life changing to say the least. Hope all goes ok with the Velcade, it didn’t work for me, but was fairly side effect free. Jeff

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      • karenbakingmad says:

        Hi Jeff,
        Thanks for your comments, I must say that this blog has been so helpful. I appreciate the advice and am glad to hear that you are still able to do a bit of gardening . I have been lucky so far have had no bone pain although I am ashamed to say I still don’t do the gardening ! Take care Jeff
        Karen

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