Hi. I was diagnosed with Acute myeloid leukaemia (AML) on 19th Feb on going straight from GPs to hospital and was in hospital for 6 and a half weeks for intensive induction chemo and recovery. I had fever every day for 40 days straight but they couldnt find source of infection. Bone marrow biopsy shows remission and I have just completed 10 day inpatient cycle 2 chemo with some side effects. I have been terrified and pretty much in denial all the way through and am now very worried about what comes next
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could I also ask this forum if anyone has suffered partial loss and distortion of vision. I have as a result presumably of the disease and this has not improved and they cannot say if it will. which is v worrying as it will affect driving / employment etc. thanks
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Hi @Gerard I am so glad you have found us.
I think diagnosis can be a terrible shock and then you have entered into into a medical world that speaks another language.
Then there is the whirlwind of treatments.
So don’t underestimate the emotional side.
Denial I think is just a body’s protection mechanism.
I think it is very natural to fear terrified.
If you need to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
This link is from the Blood Cancer UK website on mind and emotions
Blood cancer: mind and emotions | Blood Cancer UK
I look forward to hearing more about you.
Perhaps just be ever so kind to yourself and try and keep it in the day as much as possible and keep posting
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Hi @Gerard as to your partial loss and distortion of vision.
Perhaps an opticians opinion first, then your consultant’s opinion next, then your GP’s opinion,.
If you are not happy then 111 or A&E.
I have to say perhaps you should not be driving or using machinery.
If you cannot do your job then perhaps you need to talk to your employer and go to your GP for a referral to an expert and get a sick note.
Be careful of your personal safety and the safety of others
This is my personal reply and definitely not a medical one.
The Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself
Hello Erica
Thank u so much for responding, and for your kind support.
It has indeed been a whirlwind / rollercoaster. I feel like I’m in an extended nightmare which I can t wake up from. Ive lost 2 stone, my hair, and was so deconditioned after weeks in bed cycle 1 that I needed help to use a commode. I am 61 and was previously fit and healthy.
Good advice to take one day at a time. Otherwise I get overwhelmed by depression
Gerard x
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Oh @Gerard you have a lot to contend with, give yourself time and please do keep posting
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Hi Gerard,
Just wanted to say I hear you. I got diagnosed late January and admitted the weekend of my son’s 8th birthday. Intensive chemo first round whilst also being in not a great state. I had a chest full of infection that’s how my diagnosis came about after seeing GP. Also had a few side effects from the chemotherapy and treatment was brutal. 7 weeks in hospital before I got leave and only saw the kids once a week which was really hard. I’m back in now waiting for count recovery after second chemotherapy whilst being worked up for a transplant hopefully over summer. Hope your next biopsy is good news for you.
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Hi @Jilly thanks so much for posting, welcome
Whilst reading your post it really struck me how extra difficult emotionally and practically it must be for you as a mum to a young family.
I have always felt being in hospital can feel very isolating and lonely especially when you are going through brutal treatment.
You are now part of our forum family and I find this is the one place where I can say how it really is for me.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do use us and keep posting
Really look after yourself
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Thanks Erica, I was 44 on diagnosis, my son just turned 8 like I said on my acute admission and then my daughter turned 13 whilst I was in for round 2. Trying to stay positive and fortunate I have treatment options and have no long term health issues before this. I do one treatment block at a time and take it day by day and celebrate each week that passes as another one done. So glad I found this community that supports each other. Want to highlight how amazing my hubby is doing at home with the kids. Such a shock for them also and they don’t often get asked how they are doing. We were honest and used the word cancer as well as leukaemia but the youngest does fully appreciate it the way the eldest does.
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Oh @Jilly, it sounds as if you have a good philosophy.
I was also so impressed how you told your children.
Yes, you are so right to highlight how amazing your hubby is being and doing.
I often say that our partners are the unsung heroes, usually who asks how they are holding the fort, can be a very isolating, exhausting role.
Look after yourselves and please do keep posting.
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Hi @Gerard. I was diagnosed with Acute myeloid leukaemia (AML) on the 25th March and began my first cycle of chemotherapy on the 29th March for 10 days. I spent 28 days in isolation and Iam currently at home for a break before my 2nd cycle next week on the 7th May. I felt that my vision had got worse due to the treatment, so I booked in for an eye test and I have now been prescribed glasses for constant use, only needed them for reading before treatment. I haven’t received them yet so I can’t say if they will make a difference or not but Iam hoping so. I would make an appointment with the opticians like I did and go from there.
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hi caroline. thanks so much for responding. on finally having my eyes checked out at the Bristol Eye Hospital it turns out it was due to a clot and minor stroke and consequent damage sometime during cycle 1 which no one was aware Id had, despite me describing symptoms to the doctors every day. its one to watch out for
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i do hope all is going ok for you Caroline, re cycle 2 etc. i am at home for 3 weeks after my cycle 2 and now have a date for a bone marrow transplant in early June. xc
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hi jilly. thanks so much for responding and i hear you too. how are you now? . i am in much the same situation, post cycle 2, blood counts recovered, no longer neutropenic, now have projected date for transplant. x
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Hi Gerard, sorry to hear about the stroke. Another huge shock for you. Hopefully the eye sight is improving and they are aware to watch you as your journey continues. I also have a provisional date in mid June for STC so happy to chat on here if you’re up to it whilst we’re in. Good luck
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Hi @Gerard i was diagnosed in March 21, had 2 rounds of chemotherapy before remission, the had a stem cell transplant in October 21.
I suffered loss of vision in my right eye during the chemotherapy. I was looked after by the eye specialists at the hospital. It was a bleed behind my eye that was causing the issue.
After having my transplant, vision returned to normal and now I just go to the optician as normal.
I fully recovered and lead a normal life.
All the best for the future
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My dad has just relapsed with Acute myeloid leukaemia (AML) and although he didn’t have any loss of vision the first time, this time he’s struggling to focus and it getting a white ring in his vision. They referred him to an opthalmologist but as his vision was fine at the point of the appointment they couldn’t do anything.
Sorry that isn’t really useful, but just wanted to share a story that echoes that change in vision seems to be a common thing.
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Hi @Ilona yes, all experiences are valuable on here,
Thank you and please do keep posting how you and your dad are doing.
Look care for yourself as well as you do your dad.
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@Gerard sorry to hear about your stroke and I do hope your eyes and vision have improved and you are getting the help you need. My new glasses have certainly helped with my vision so were definitely needed during my second cycle, which I have now completed and recovered enough to go home today. @Muzza I was told when I had my eye test that there was bleeding behind my eyes which although I was totally unaware of, I feel were caused by my first cycle of chemotherapy, and a referral letter was sent to an eye specialist. My new glasses have certainly helped 100 per cent this time around.
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hi @Jilly hope you are doing ok! i had my Stem cell transplant on 6/6 (T-Day rather than D-Day!) so very early days and I am in hospital in isolation. with no pick up on bloods yet. just wondering if you had had yours yet and how you are. Gerard x
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