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GP letter and blood testing advice please!

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Hi everyone, I was hoping for some advice and clarification on 2 subjects! This is specifically directed to UK members of the group

i haven’t received the letter with extra advice for vulnerable high risk groups from my GP practice. I understand from what I’ve read that the letter should be sent out from my GP surgery not the hospital I am under, is this correct? When I contacted my surgery they flatly denied that they should be sending out the letter and have refused to do anything further. Does anyone have a recommendation about what I do next? I dont even know what is in the letter so can’t really decide whether it’s important or not! I’m thinking of sending an email to the practice manager because if they haven’t sent to me they probably haven’t sent to any of the vulnerable people registered with them.

my other query is about our 3 monthly blood tests. Have many of you had your blood works waived during lockdown? I’m in stable MMR but our hospital where I have my bloods done have closed phlebotomy dept and moved it elsewhere. When I’ve called to find out whether they are making special provision for high risk patients they informed me that they aren’t, it’s first come first served no appointment all mixed together. I’m obviously not keen to get amongst people so would really appreciate any feedback on whether your bloods have been cancelled until things improve or if you are having bloods done but under stricter control due to lockdown? Thank you for any info, I’m afraid there are only 2 of us at my hospital who have CML and as we span haematology and oncology we get overlooked for updates. Stay safe and strong everyone xx

 

Hi shayner, I to have been waiting for this letter from the nhs, or from my gp for work purposes, I was under the impression it was supposed to be delivered by the 29th March, when I made enquires I was told by my surgery it would be 5th of April, I did receive a text with what I presume is in the letter, as for the 3 month checks, where in a very challenging time for the nhs, I personally am leaving everything in the hands of my doctor, they haven’t forgotten us. Peter 

Hi there,

I’ve still not received my letter but I am receiving texts about the “high risk” group. I was told I will receive one eventually.

In terms of blood tests I had one due yesterday (Monday 13th) went to the hospital wearing a mask and gloves only to find the blood department closed due to the bank holiday!!! It’s a bloody hospital lol!

Anyways I emailed my consultant and told him and he’s sending me another appt for the 27th.

I enquired about the high risk group when COVID kicked off and my consultant said CMLers are at no greater risk than the general population as our meds do not suppress our immune system and only attack the bad ones.

In light of this there isn’t a special provision for blood tests just take precautions as if we were high risk. That’s my attitude anyway. As I said mask and gloves, I even wore glasses to ensure I don’t touch my eyes.

All the best

Alex

Thanks Peter, I agree about it being so challenging, I’d rather not have my bloods done if possible and wait and keep safe and not burden nurses and hospital when they are so stretched. I think I’ll probably contact the haematology secretaries and see if I can take a bloods holiday! Hope you get your letter for work. 

Hi Alex, thanks for sharing your situation - bloods is always a nightmare around holidays. I always fall due on New Years Day - those bloods are not representative of my usual composition! What a kill joy, you really can’t let your hair down!

I know we all respond differently to our different meds, I’m on imatinib, but I am not convinced about no greater risk than to those without health issues. I know from experience that if I catch something it will take at least twice as long to get over it than for those without a health issue. I don’t catch a lot of germs but when I do it has a profound impact on top of the side effects and fatigue and an infection always pushes me out of remission. So I’m worrying not about being at a greater risk of infection, but rather the ability to recover. Let’s keep everything crossed for an end to this sooner than later, take care.

Hi Shayner, felt I had to come back to you on your reply to Alex, I totally agree with you about the non high risk of Cml, in the 5 years since my diagnosis I have had 2 stays in hospital once with pneumonia during that stay I also picked up swine flu! and a second stay for a viral infection, I believe in both cases caused because of a compromised immune system due to condition and medication, I take nothing for granted and am ultra cautious, especially now in working/social environment. Stay safe Shayner, stay safe Alex. Peter 

Peter thanks so much for coming back on that, I think you are spot on and makes total sense that you’ve had such a time of getting over infections - you’ve sure had more than your fair share, we are putting a poison in our bodies every day that keeps us alive. I think there’s a disparity between the reality of life for the people who are suffering this disease and the views of the ones treating us. Time and again on the support group you see the struggle and adjustments we are all making to something that none of us brought on ourselves or asked for and I think everyone is brave in the face of a huge life upheaval but still hugely thankful for the science that is giving us more time with the people we love. I do feel there is a general lack of understanding within the medical field of what a challenge day to day life has become for most of us, I’m sure we’ve all thought at some point that we wish just for a few weeks our drs etc could live in our shoes and then see how patronising the nhs definition of our future life is - I think very few of us “experience a full and normal life” compared to pre CML! Of course there is a certain amount of white cell suppression, otherwise those cells would kill us, my count at diagnosis was off the chart! A consultant recently told me I was cured, In that case I could stop the medication? No, as it would come back, don’t think that’s definition of ‘cured’! I guess I’m saying that for whatever reason our medical support often say things that are a rosey spectacled version of the truth or an overly upbeat version. And I get that that helps some of us, I’m all for positive thought and counting our blessings but I’d rather have the truth and make my decisions from there. When each day is challenging, frightening and strips away your dignity it’s a bit insulting to be told by a healthy person that you are pretty much well and able to lead a normal life. I’ve rattled on, I’m a happy person, promise! Just a bit of a niggle when we are told something that blatantly goes against common sense and the proof of how our lives play out with CML. Do keep safe, err on the side of caution!

Hello,I was out and about doing all the normal things before the lockdown. I must admit that I used to get a lot of colds before I started with CML .Now I rarely catch colds and flu.

Keith