No Daily cases
No ons results after 31st March
No advice for those vulnerable to Covid on NHS Site
Who do we turn to for advice and latest information?
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Hi @anon06 for the latest information we definitely turn to Blood Cancer UK, you are never alone on our forum @BloodCancerUK_Nurses and @BloodCancerUK.
Personally I think that it is now my responsibility to do what I am most comfortable with to keep me as safe as I can.
I cannot control what others do but I can control what I do.
I am going to the dentist tomorrow and then making an opticians appointment, the time has come.
You sound very abandoned, I know what you mean, we are in the minority well and truly and not in the media, how are you doing?
Look after yourself.
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âOkâ, just want to get on with life with no risk, I am not under any immunosuppressent drugs but have two on going health conditions, which effects my immune system.
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I think there is some sort of saying that âlife comes with risksâ ⌠unfortunately @anon06, but as you say you have two on going health conditions so you need to take extra care or yourself.
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Thanks Blood Cancer Uk are very good, they are more than aware I am their biggest fan,
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Hi @anon06
I can understand your frustration about this but as Erica has said the Blood Cancer U.K. website is a great source of up to date information.
I maybe can share some positive experience I have recently had. I contracted Covid for the second time a fortnight ago. Within 12 hours of registering my positive test our local Covid unit contacted me and arranged for me to get the Paxlovid antiviral treatment. Great support also from my haematology helpline as well. While not pleasant having Covid again the antiviral treatment really helped my recovery. Overall it is very reassuring that the support is still there for clinically vulnerable individuals like us.
All the best,
Peter
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To be honest I am terrified of having chemo and a stem cell transplant, plus rituximab maintenance thatâs planned for me to start soon now that masks are being removed and there are no other mitigations such as HEPA filters etc. I really would like to know what BCUK are doing on behalf of seriously immunocompromised blood cancer patients as they have been so helpful all throughout the pandemic so far, but some people will not/can not respond to the vaccines. I know there are antivirals, but it really is a postcode lottery as to whether you can get them in a timely manner (within the 5 days) as the situation with the abandonment of the CMDUs has either happened or is imminent and itâs unclear who will manage it. It feels like people who are concerned are in a minority but on this site we all have different levels of risk. Please BCUK can you tell us what engagement youâre having with the government and NHS about this. Thank you x
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Hi @lousyT I will copy your post to Blood Cancer UK for you @BloodCancerUK.
I am so sorry that you are feeling terrified about treatment but perhaps it is really natural to be terrified of the unknown, I certainly always am.
Perhaps ensure your medical team know how you are feeling.
Do you think an appointment to your GP is in order to tell them how you are feeling too and see if they can assist at all. Personally I found counselling helped me.
I believe Macmillan Cancer Care might offer about 6 sessions.
We are here for you and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 888 2080.
The main thing is that you look after yourself and be ever so kind to yourself.
Dear @lousyT
I can see that you posted some time ago so I am sorry for the late reply and please do ring through to us if you would like to talk through your worries regarding your future treatments: Blood cancer information and support by phone and email | Blood Cancer UK. It is understandable you feel this way.
As you mentioned the CMDUâs are no longer managing the delivery of COVID treatments, this is now the responsibility of the Integrated Health Boards (IHB). Blood Cancer UK are consistently working with the NHS and the IHBâs to provide the blood cancer community with the most current information on how to access these medications in the appropriate time scale, please do have a read of our updated information with the individual IHB information included which was collected in collaboration by Blood Cancer UK and other immunocompromised charities Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.
I do hope this helps and if you would like to talk this through please do call.
Kind regards
Gemma
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