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nick63 Total Reaction Points: 5
First of all, hello everyone. Wow, I've been binge reading this forum over the last few days and I wish I had known about it at the beginning of my journey. There is so much helpful information here and people seem really helpful and supportive.

My journey started a year ago, when just after the Christmas holiday I started to feel unwell. I was tired and lethargic, I had the world's worst cold sore and lumps appeared under my armpits. I booked an appointment at my GP and he gave me antibiotics and some cream for the cold sore. After a week or so I still wasn't feeling much better and my fiancé told me to go back to the doctor. On the second visit a blood test was organised and i was told they would be in touch in about a week. Well first thing the next morning I had a phone call on my mobile from the doctor telling me I was anaemic and that he had booked a consultation for me at the haematology department of my local hospital. Anyway, long story short, after more blood tests and a bone marrow biopsy, I was was diagnosed with acute myeloid leukaemia. I'd never even heard of AML and struggled even to spell it. I am so grateful to my fiancé. If I had been single, as a typical man, I would have kept going until I keeled over one day. It was her insisting I go back to the doctor that saved my bacon.

I was swiftly admitted to my local hospital where I began a course of chemotherapy. At the end of the chemo another bone marrow biopsy revealed that the chemo wasn't doing it's job and I was told I would need a bone marrow transplant, which at the time was quite a blow. There followed another three rounds of chemo, this time the much stronger flag ida. Side effects included diarrhoea, vomiting and a very nasty urinary tract infection. About 4pm each afternoon I would get the shivery shakes. I believe its called a rigor. I think the nurses used to set their watches by it. All I know is it's one of the weirdest experiences. You feel absolutely freezing, I would shiver so much the bed would shake and my teeth would be chattering. Meanwhile, the nurses would be pulling the sheets and blankets off the bed, opening windows and directing an electric fan at me, because in reality my temperature was climbing to the ceiling. Around this time I also lost my eyesight. Not totally but my vision would be blurred so that i couldn't read or write and people's faces would just be blobs. I was told this was due to the leukaemia. Fortunately, the chemo nailed it and my eyesight returned to normal after several weeks, but it was pretty scary at the time.

At the end of July I was transferred to University College Hospital London for my transplant. I have to say, compared to everything I had already been through, the actual transplant was quite straight forward. The hardest thing to deal with was the sense of isolation. Back home in Wiltshire, my friends and family were able to visit on a daily basis but the distance to London and the cost of transport meant they could only visit once a week. Fortunately, I was only kept in for about three weeks before being sent home.

Since then I have been attending regular check ups as an outpatient and things have been going well except for a chest infection in November which meant another three weeks in my local hospital followed by another transfer to UCH. I was afraid I might not get home for Christmas but fortunately I was discharged a week before the holiday.

Compared to some of the posts I have read on here, I seem to have escaped the worst effects of GvHD except that recently my eyebrows have fallen out which I have to admit has been causing me some distress. I had normal male pattern baldness in my twenties, I'm now 54, and have been shaving my head for years, so losing my hair was never going to be a problem. It just seems cruel and ironic, that having gone through five rounds of chemo, this should happen now, especially as I am due to return to work at the end of next month and could do without the added social anxiety of feeling that I look different.

Anyway, that's my journey so far. As I said at the top of this post I am enormously grateful to my family, and in particular my fiancé for all their help and support. As for the medical teams both at Great Western Hospital in Swindon and UCH in London, I owe them I dept I can never repay. While of course I would never have chosen to have a serious illness, the upside is I have met the most talented, dedicated and caring group of people I could ever wish to meet.

Wishing all the best to my fellow forum members.

Nick.

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Nick and welcome to the forum, I’m one of the online community champions here. Thank you so much for sharing your story and I’m glad you’ve found the forum interesting reading. It’s a really useful resource to a lot of people and being able to compare notes with others that have the same condition or similar experiences is so useful. I had my transplant five years ago for ALL before this forum was created and I know how useful I would have found it.

    My diagnosis went a similar way to yours when I felt generally exhausted and thought something wasn’t right. Thankfully my GP sorted a blood test together with an ECG and suggested an eye test. The ECG and eye test were normal but the blood test showed a low white cell count, so like you I was referred to the Haematology department for a further blood test and bone marrow biopsy.

    I found out the day after the biopsy I had Leukaemia and just four days later I started chemo in hospital. Hearing you have cancer is the hardest thing I think anyone could hear, but after the initial shock I resolved to beat it even before I started treatment and I think that helped me get through.

    It’s interesting what you say about your eyesight. I didn’t lose it completely like you but my vision was certainly blurred which is why my doctor referred me for an eye test. My symptoms actually sounded similar to diabetes and it was a diabetes awareness campaign at work that made me visit my doctor when I did. I’m glad I did!

    I had a similar experience when my hair came back too, as it came back thicker and darker at first, then I started losing it again, but in my case I think this was down to skin GvHD which has thankfully been successfully treated and my hair has returned to normal.

    Chest infections are a pain and we have to be careful, particularly in the early days, but I’m glad to hear you’re over yours now and I hope your recovery is continuing unhindered.

    Please stay around for us to keep supporting you and please join in the discussions where you can. One of the great things about this forum is that whilst we are all unique and our experiences can vary, it’s often the case that something somebody is worried about will have happened to somebody else, and knowing that they’re not alone is so helpful to those that might be worried.

    Thanks again for posting and all the best,

    Steve
  • Meerkat Total Reaction Points: 8
    Hello Nick and Steve.
    I was interested to read that you both had visual disturbance symptoms around about the time of your diagnoses. I had never given it a thought prior to reading these posts, but I saw an ophthalmologist because of double vision, about 4 weeks prior to visiting my GP with symptoms that led to my AML diagnosis. I had never had these symptoms before, or indeed since. By the time I saw my GP my double vision had resolved. (This was in spring 2015). I wonder if this is a recognised issue. Perhaps Hayley could comment. Thank you.
  • SuePSueP Total Reaction Points: 60
    Hi Nick,
    Welcome to the forum. I am one of the community champions on here. Thank you for posting. The more members we have, the better we can support each other. Your post is an excellent example of this as it has already initiated a discussion about eye problems with leukaemia.

    My background is a bit different as I had a double cord blood transplant after 14 years of battling non Hodgkin's lymphoma. That was four years ago and has so far been successful, touch wood.

    I totally agree about all the hospital staff - they are so professional, knowledgeable and kind. To say 'thank you' almost seems inadequate.

    Good luck with your recovery.
    Very best wishes,
    Sue
  • nick63 Total Reaction Points: 5
    Hello Steve, Meerkat and Sue, and thank you for your kind comments.

    Losing my vision was certainly a bit of a shocker but it helped that I was already in hospital so they were able to send me straight down to see the hospital ophthalmologist. He quickly diagnosed a haemorrhage in both my retinas which is what caused the blurred vision. I initially assumed that was a side effect of the chemotherapy but in actual fact it was a symptom of the AML which was cured by the chemotherapy.

    I remember having a bit of a stress attack over it one day because I couldn't read or write and flapping that I wouldn't be able to work or drive again. We had a very no nonsense doctor on the ward, who simply said, " don't worry, it will recover. Right now my priority is keeping you alive". I was fine after that.

    One thing I discovered while in hospital was the importance of physical and mental exercise. Its very easy simply to sit or lie in bed all day, and as we are usually long term patients one soon starts to vegetate. As much as possible, and when I wasn't being kept in isolation, I used to walk up and down the ward. I had a Fit Bit and at times was managing three miles a day. Even helping the nurses with making my bed gave me some interest and physical activity. I quickly discovered that medical staff appreciate those who take ownership of their own fitness. Likewise, reading, crosswords, soduko etc help keep the mental processes working.

    Looking forward to contributing as much as possible to this forum.

    Best wishes,
    Nick.



  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    edited January 25
    Hi again Nick,

    I understand the panic losing your sight must have caused as I had a similar panic part way through my recovery. I woke up one morning and my eyes were in agony and I couldn’t open them due to the pain. When I did struggle to open them everything was completely blurred and I couldn’t see. I couldn’t work out what was going on and I honestly thought I’d gone blind.

    I had a checkup appointment at the hospital that morning and this was at a time when my wife was still driving me to the hospital. I sat in the passenger seat with a woolly hat pulled down over my eyes as it was a bright sunny day and the bright light was making my eyes worse.

    The journey to hospital took around an hour, but seemed to take an eternity. I felt completely helpless. My wife got me into a wheel chair when we arrived and dragged me backwards into the hospital as it was one of those bulky hospital wheelchairs which never go where you want them to when you push them.

    When we got to the clinic we went straight to the reception and told them what was happening. They contacted ophthalmology which was the floor below and they said they’d see me straight away. The ophthalmologist put some anaesthetic drops in my eyes which eased the pain and I was able to open my eyes but everything was still blurred.

    The doc inspected my eyes and could see that the eyeball was really badly scratched. It then became apparent what had happened. At the time I was having severe problems with GvHD and my skin was really dry, to the extent that I had a crust of flaky dry skin all over my face each morning. I figured out that I must have been rubbing my eyes through the night and rubbed my crusty eyelids on my eyeballs which scratched them.

    The complete loss of my sight only lasted a couple of days but it was the most helpless I felt throughout my treatment. My heart goes out to anyone that loses their sight for any reason as I think it’s the one sense you would miss the most. I’ve had problems with hearing periodically but it is nothing compared to losing my sight.

    You mention using a Fitbit to track your steps and how far you’ve walked each day. I got one last year and wish I’d got one sooner as it was great to track my progress. By the time I got mine I was fully returned to work and busy as a project manager on a construction site. I was surprised to see that I was walking between six and eight miles a day and climbing over twenty floors of stairs each day. They’re a brilliant piece of kit and I can recommend using one or something similar or maybe the iPhone health app to track your activities.

    Please do contribute as much as you can to the forum. Sharing experiences helps others understand what might be happening to them and knowing that that it happens to others helps us all cope.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Nick and Meerkat

    Sorry for the delay in response. Thank you Nick for posting, its great that you have shared your experience and it has raised a question about vision impairment. Yes vision disturbances can be a symptom of AML and ALL, but its not typical and it wouldn't be a symptom that a GP would naturally associate with leukemia. It can be a build up leukemic cells that cause a problem with sight or the affect of the leukemia on platelets that cause bleeding around the eye that can affect the sight. Often it is after diagnosis that any visual disturbances are linked with the diagnosis and resolve after treatment has begun

    Experience like Steve's are to do with post transplant side effects like GvHD or CMV infections that can affect the eyes.

    I hope this helps and please do ask any questions if you have any.

    Bw
    Hayley
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