Hi @Billy1mate I have been thinking about you, how are you doing?
Hi @Marylin, I’ve been thinking about you, how are you doing?
Hi @Lulu999 I’ve been thinking about you, how are you doing?
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Hi @Annie78 I’ve been thinking about you, how are you doing?
Hi @Dottydogwalker I’ve been thinking about you, how are you doing?
Hi @Mickbrit I’ve been thinking about you, how are you doing?
Hi Erica thank you for asking about me.
Sadly not doing too well. Just started another lot of antibiotics as still have pneumonia which is rather annoying. I am beginning to. Wonder if I will ever get rid of it. It makes me feel rather low and very tired. Not helped by this extremely hot weather. Can’t stray far from my fan.
How are you doing? How are you managing in this heat? Are you. Managing to keep cool. Marylin
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Oh @Marylin the pneumonia and antibiotics sound miserable to me, especially with the hot weather. I think antibiotics make me feel rough and perhaps the pneumonia is really going to wear you and your body out.
Our fans are our best friends now.
It is funny that you should ask how I am managing in the heat as I was only thinking this morning that I am not tolerating it as well this year and I do not like it when it is muggy out there. Our flat is not too bad, the sun works it’s way round during the day.
Take lots of care and the main thing is that you look after and be very kind to yourself
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Hi, so it has been almost 2 months since my last post and a lot has happened. My OH had his second follow up appointment since diagnosis just about a year ago. The haematoncology team were happy with the results but for now to remain on 6 monthly follow ups. Hr has had another infection and then unfortunately i caught covid for the first time, amazingly since i work in the NHS, despite my best efforts, i passed it on to him. What happened next was an amazing example of how well the system can work, within 24 hours of reporting his positive test, on a Sunday no.less, he had received 2 calls from the covid unit, 1 from his GP and 1 from the consultant team and the antivirals were delivered to the door. Within 2 days of starting them, he started to feel so much better , by day 4 you wouldn’t have know he had it apart from the fatigue that is still around. We are currently in Sorrento on holiday and a truly amazing thing happened, at least for me it is, he actually told someone that we have made friends with that he has Chronic lymphocytic leukaemia (CLL), i finally believe that after a year, he has now accepted he has it and so i have hope now that we are truly in this together rather then just me watching and worrying from the side because he hadn’t accepted anything was wrong. Sadly 2 friends of his currently are undergoing staging for cancer, 1 renal had his kidney removed the other day for histology but we know it hasn’t spread and his other friend, Liver, they are due to operate to take a large amount out, so maybe talking to them has helped. Whatever has caused this acceptance, i am grateful. As always i am grateful for this safe space to talk. Wishing you all well. X
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Hello this is my first post so hi to everyone ! My husband was diagnosed with Chronic lymphocytic leukaemia (CLL) last year purely by chance after having blood tests for an operation. Of course it was a shock and I must admit he has found it very hard to come to terms with, not wanting anyone to know, I, on the other hand wanted as much information as I could get and have found this forum very reassuring and helpful. I relay all the positivity to him ! He’s slowly getting used to his diagnosis and is on watch and wait, so far so good. He’s just completed a sponsored bike ride 100 + miles so is getting on with life and enjoying it. Best wishes to everyone
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Wow, what a true story, @Jujuju99, yes, we and our forum are a safe space which is always there for you.
It is the one place I can really say how it is for me.
Look after yourself and please keep posting.
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Hi @Erica and Everyone else
I’m doing really good still.
Have a bit of back pain but I’ve resigned to the fact that I’ll always have that. Otherwise life is good. Lovely to hear from you always 
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Hi, I have been having some highs but unfortunately on a down at the moment . Seems wrong as had a second ‘good’ blood test result with a drop in platelet count - however it does mean my Hydroxicarbamide dose has been increased again and that seems to knock me out for a while.
Here’s hoping it sorts itself so I don’t want to give up and go for the stroke or heart attack option, which is how I felt for first few months after my ET diagnosis
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I seem to be doing OK, even though I don’t often post, I find this website to be very helpful when I am feeling down.
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My feeli8ngs exactly, platelet count goes up and down, Hydroxycarbamide seems to do its stuff and it is far better than the alternative without treatment.
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Hi @Jill57 welcome and thanks for taking the leap to posting on here.
You show so well how people react to a diagnosis in different ways, although I am the one with Chronic lymphocytic leukaemia (CLL) my husband just buries his head in the sand.
I think shock also affects people in different ways, and in my case took a long while to get over.
I am very impressed with your husbands sponsored bike ride though.
I think getting on with life and enjoying life is a very good philosophy.
Look after yourselves and I look forward to hearing more from you.
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Oh @Danmar great o hear from you and sorry to hear about the back pain, perhaps make sure that your medical team are aware of your back pain, it’s severity and impact on your life.
Look after yourself
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Hi @Pollyp a great big welcome to our forum.
You are in the right place if you are on a down at the moment.
I don’t think there is much reason behind how my emotions are, they have just been all over the place my diagnosis 19 yrs ago. Mine do usually sort themselves out for a short while.
This forum is the one place where I can really say how it is for me.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I really look forward to hearing more about you.
Be kind to yourself
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Great to hear from you @Dottibag, you don’t have to post, sometimes I can also get so much out of just reading posts.
Look after yourself
Hello @Pollyp
Welcome to the Forum. I am glad you have posted here, but sorry to read you are a bit down at the moment. ET, platelet counts and the Hydroxycarbomide doses do often take a while to settle down.
Certainly don’t give up with the treatment, just tell yourself this happens to everyone and the period of adjustment doesn’t last forever.
Please remember you can call our support-line if you ever need to talk.
Take care, Heidi.
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