2021 My Little Story

This topic contains 4 replies, has 5 voices, and was last updated by  mulberry 4 months ago.

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  • #142598

    hendaz68
    Participant

    We all thought 2020 was a totally f*cked up year. Well 2021 totally trump’s the lockdown year hands down. From finishing my 5th Great North Run in 2019 the world went tits up. This is a little part of my journey in this god forsaken year.
    I’m 53 year old been married to Andrea for 30 years next July 25th 2022. We also have a beautiful daughter Jasmine who is 27 years old. They are both my entire world & my rock’s.
    So in March 2021 I had severe stomach pains I couldn’t straighten my body & lay on sofa for well over a week, no appointments available with my gp. Eventually got fast tracked into the QE hospital in Gateshead, I was given CT scans, MRI scan, endoscopies to investigate fully what was going on with my body, frustrating times for me, diagnosed with anaemia which was causing me to become lethargic and dizzy. To make matters worse in July after all of my scans etc I was diagnosed with Coeliac disease which is a gluten free diet for life, which was a massive shock as we live a healthy life style. So that’s it I hear you say?
    Is it bollocks, I was still feeling terrible constantly feeling dizzy & tired all of the time with no energy whatsoever. So more blood tests & the consultant Dr Saeed who diagnosed me with coeliac disease sent me to a haemotologist blood specialist Dr Summerfield who carried out more blood tests & eventually a bone marrow sample. All of this from having stomach pains in March?
    The following day after my bone marrow sample Dr Summerfield rang me it was a Friday, could I come to the hospital on Monday & could I bring my wife with me “holy shit” a telephone conversation that I wasn’t expecting. My wife & I spent all weekend on Google searching & getting the inevitable results “DEATH” (it always ends on death on any search lol)
    Monday 8th we went into the QE hospital to see Dr Summerfield who then politely gave us the news that I had Myeloma blood cancer. WOW! Google missed that one!
    That day had come that I had been diagnosed with a cancer which has no cure yet, but can be treated with chemotherapy & stem cell implants. My wife & I both took the diagnosis really well if I’m honest. I often wondered how I would react if I was given this kind of news, well I took it on the chin & from day one I will always be positive throughout my chemotherapy treatment.
    15th November my chemotherapy started with VTD & various medication. Cycle 1 completed next sessions 14th December until 24th December 💪.
    Everything so far is going well apart from losing sleep think this is down to the steroids, but I can live with that as long as I’m in no pain again not sure as it’s early days another 5 month of chemotherapy then a stem cell implant.
    But don’t worry I’m going nowhere as long as I’ve got my family & friends & my positive mind set I will continue to fight this & keep being healthy going out for walks when I can.
    So that is the start of my little journey, hope I have shed some light on my 2021 so far 😁.

    #142606

    paulapurple
    Participant

    Hi,

    Welcome to the club nobody wanted to be a member of! I was only 56 when I was diagnosed at the beginning of 2017. You sound very upbeat; it’s good to remain positive if you can. I’m like you and take everything in my stride really.

    Yes the steroids make it difficult to sleep as we take them in such high doses. You also get a ‘come down’ when they wear off, which isn’t pleasant. VTD is the usual chemo to start you on and works very well for most people. You don’t say what type of Myeloma you have. Some are measured by paraprotein and others by free light chains. I have lambda lightchain Myeloma. Mine is hard to treat so I spent two years on chemo before I had a stem cell transplant in 2019; I’ve been in remission since. Most people have 6 months of chemo and then straight on to stem cell transplant. Watch out for Peripheral Neuropathy on VTD. If you get it speak to your team.

    Good luck with it all. If you feel you would like to have support from like minded people then you might like to join the UK Myeloma Facebook page; it’s very supportive and full of knowledgeable people who have been through it.

    Paula

    #142697

    loneowl
    Participant

    Paula Purple

    I have my very close neice age 47 going in for her stem cell transplant next Friday Chemo on the Monday then transpant I am sure you know the script.

    What I would like is advice what to send her whilst in isolation for the proposed 3 or s weeks we wanted as a family to try to send something every single day trough AMAZON her 1 visitor to keep her spirits up little silly daft things, or anything really that would make her smile and feel loved.

    #142700

    I found that bordom and lack of appetite were killers for me.

    So I would say things for bordom and snacks they like.

    If I had to pick one of the two I would pick snacks as the food in hospitals is not great. Also, even though bored I was so tired that I could not think straight most of my stay.

    Hope this helps in some way.

    All the very best,

    Steve

    #142703

    mulberry
    Participant

    Hi Loneowl
    What a lovely idea. I’m sure anything will be really appreciated. I agree with Steve that snacks are very welcome, although many of us have odd tastes and desires for food after transplant, so variety may be a good idea! I couldn’t concentrate that well so ‘light’ reading matter & puzzles. I found I slept quite a lot, so didn’t do crafty type things until I was back at home. Socks, pretty scarf, someone made me a lovely shawl which I used a lot.

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