• March 2, 2012 /  Myeloma

    It’s 3.47 am and can’t sleep which is unusual on a Thursday – normally it’s just Tuesdays and sometimes Weds. Have awful acid reflux. Have just changed from Ranitidine – I discovered my Adcal (Calcium Carbonateand D3) reduces its effectiveness. Also a lot of aching and stomach like a balloon!! I know cancer patients are supposed to be uncomplaining and stoical, but sometimes I’m just plain grumpy. Having read a whole book of short stories I gave up trying to sleep and came downstairs. I often do some ironing if I’m up in the night but can’t be bothered.

    Well just nearing the end of my 20th monthly round and although I think the side effects haven’t got worse (except maybe my digestion has deteriorated – constant reflux and a couple of bouts of bad diarrhoea and constipation plus piles), it does seem a bit hard going psychologically. Must be terrible for people who live with worse conditions for many years. It is true you adapt and get on with it, but every now and then I find I get resentful.Also, I am so stupid atm that, for example, I am correcting every few words I write and quite often I can’t write or say a coherent sentence.

    However. Good news is my peripheral neuropathy hasn’t got worse. Also we have a new haematology suite at the hospital. It’s not much bigger but the treatment area is much better. But it is all being funded through charity – and they are only half way through raising £1.5 million for it through Macmillans. Shocking really that we have to rely on donations. I am sure it has affected the income of other charities across the town for ages.

    We are still campaigning against cuts generally and the NHS Reform Bill. Anyone reading this – please do something to oppose this extremely dangerous Bill. Frankly it terrifies me, not least because I could find treatments and drugs no longer available to me in future. And that could apply to any of you one day. All in the name of profit, whatever they say. And my local hospital is now talking about patients having to travel to other centres to get treatment – I will be going along to a meeting next week about that. Write to your MP and paper. There’s lots of good oppositional material online.

    Next week I give up being Sec of Trades Council. I will assist whoever takes over, but I hope to shed a lot of the workload and just assist with a few defined jobs. It’s too tiring, I don’t get to meetings and I want some me/family time. Thinking of trying to take up something creative – I have a whole set of pencils waiting for me to start drawing. Union and political work is still important to me, but there has been a lot of it the last two years and now I will be able to support without having to organise so much.

    We are planning some short hols this year, as we only had one last year. I find a few midweek days at a time more manageable and I don’t feel brilliant Fridays to Sundays. Tonight we booked a few nights in Bruges with my son and his wife! We’ll also go to Floriade later in the summer, a huge flower/plant show in the Netherlands which comes round every 10 years. Then maybe one or two other short breaks back here. No big house or garden projects! So fingers crossed my health remains OK so we can enjoy ourselves.

    Well, maybe I’ll stop drivelling on and go and go out in the garden now! The foxes were mating loudly yesterday. The frogs have returned to the pond. And my bulbs are eventually coming up. The garden is a mess, and I’m looking forward to pottering around as it gets warmer.

    Take care everyone and I’ll try to update a bit sooner (don’t hold me to it!).

    Posted by Sarah @ 4:35 am

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17 Comments to March 2012 update – plodding along

  • I have been following MM posters for some time due to a relative with it, and recently discovered I have PN, probably caused by my spine compressing (age related) and someone suggested I up my b vitamins for that. I have been doing that and it actually has helped. Not cured, but helped. I am also about to start a regimen of stretching my spine and that is supposed to help as well. No blame for the feelings of being grumpy; comes with the territory I guess. Intending you are feeling better!

  • Hi Sarah,
    I decided to log into your blog to find out how you’re doing. Have you had omeprazole for the acid reflux? When I take one every morning I’m ususally better. Sometimes I even do something very obvious like have a couple of drinks of antacid a day.
    I too take supplementation with VitB. I don’t know if it helps. I’ve been on Thal now for 10 months and I’ve got mild neuropathy.
    I know it’s very difficult to keep our spirits up sometimes. I’ve tried to analyse what I need to experience every day in order to feel ok. I’ve come to the conclusion that I need to talk to someone( other than my husband), so I try to have social contact with one person, even if it’s on the phone, to do something creative – so I push myself to cook new dishes or take photos or work on my art, and thirdly, I try to do something for someone else. Doing these things is a bit of a challenge when I’m starving myself in an attempt to lose weight or having bouts of anxiety about my illness. And yet, when I do them, I feel better. There are many other things I ought to be doing, like sorting documents that I haven’t done, and I’m going to have show some self-discipline soon.
    Thinking of you,
    Eva

  • Hi Sarah,
    I’m so pleased that your peripheral neuropathy hasn’t got any worse. However, you are still a very ill person and you absolutely have every right to be grumpy as often as you like!
    Like you, I think the proposed NHS cuts are very scary so I have already written to my MP (bland, standard reply) and have signed petitions etc.
    Your holiday to Bruges sounds absolutely fab as does the Floriade trip. Don’t forget to book in for Warwick! I had a great trip up to Scotland in Feb. I stayed in a friend’s B and B on the northern most part, not far from John O’Groats. I was hoping to catch the Northern Lights which have been good this year but unfortunately my hopes were quashed by cloud cover every night. Oh well – another time perhaps. Love to both, Jane x

  • Dear Sarah

    Easter Monday – rain and chill and grey skies! But our day at a local Country Fair yesterday with my daughter was a sunny and dry day, so we were lucky.
    I was looking at sites on Adcal D-3 and Clasteon – which I have just been prescribed – checking up because instructions on the presc form and the box are different – I shall see my GP soon and sort it out. And I came across your site. How great to read your comments(?) – it was so helpful as gloom was descending over me – unusual – even though I usually avoid feeling miserable for myself.
    Beautiful Bruges – holds happy memories for me. Have a lovely time.
    Yes, short breaks are better for us also – three days maximum – and less expensive too. My husband’s driving distance is about 120 miles – (he also has cancer) so we are restricted to where we go, though we are considering rail passes.
    This really just to say ‘hi’ and I shall keep in touch.
    Cheers
    Ros

  • Dear Sarah,

    I have just found you on Website. Its been so interesting reading about you, makes me realise there are other people out there with the same problems as myself.
    I was diagnosed with myeloma last October, last summer i was suffering with bone pain and my doctor put it down to sciatica and the menopause as i am 54 years of age. I went to Malta in september with my par tner Roger, whilst there i could hardly walk when i came back I started to be sick and doctor put it down to plurisy as I had burnt my lips on holiday and he thought it was poison in my blood stream!
    After taking antibiotics for 2 weeks i was still poorly, demmanded blood test then found out I had Myeloma it came as such a shock.
    I was then put on a Myeloma Trial X11 for 5 months (Thamidalide tabs, Chemo tabs, Steroids etc). My paraprotein went down from 65 gramms to 1 gramme. I then had stem cell transplant at Notts Ciy, i was there for 4 weeks. I am now in remission for next 2 years which is good. Unfortunately I got the dreaded shingles 2 weeks ago and its awful, it is so uncomt ortable, cant sleep very well at night, like u say its like having electric shocks put through you, i am taking 4000 gmms of Acliclover a day for 2 weeks. Did u take any pain killers and if so which ones.
    I amd hoping to go back to work in a few weeks time but i dont think i will its quite a set back. I am an office lady and miss it very much, i been on the sick for the last 9 months.
    I just hope with having this set back that it doesnt bring back on the Myeloma again.
    Oh what a long journey it is and like you say you have your ups and downs.
    I hope you are okay now bless you.

    Take care

    Celia

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