Sorry if this has been discussed before, but I concerned about what happens if my husband contracts Covid. Obviously, we’re being really careful and he goes nowhere except to his chemo/transfusion appointments.
He was diagnosed last October and at no point has he received any formal communication regarding him being clinically vulnerable, let alone any information about priority test kits.
Am I right that he should be classed as clinically vulnerable and if so, how do we chase up a priority test kit. Everything I’ve read seems to indicate that it is a mine field!!
Dear @SueD, no need to apologise at all. You are right to think that Myelodysplastic syndrome (MDS) makes you CEV and in particular those on chemotherapy treatment. We have some really good guidance on what to do if you test COVID positive and are a Blood Cancer Patient Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK. The most important things is to get a PCR test quickly, inform the Haematology team and await guidance from there. It may be that your husband is on the CMDU assessment list but it is just that the letter and PCR have not made it to you yet. The Haematology team can contact the CMDU if they have not already called you following a positive test. Hope this helps? Please do call or email the Support Services Team if you need to talk things through Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma
Hi @SueD well @GemmaBloodCancerUK has answered your query, aren’t we lucky to have Blood Cancer UK to keep us informed with up to date information and helping us through the minefield.
How are you both doing being isolated and have you any support from family and friends.
Look after yourselves
Trying to balance ‘living’ with ‘isolating’ is certainly a challenge…!
My husband is so insistent that I don’t stop doing the things I usually do and that his Myelodysplastic syndrome (MDS) doesn’t unduly impact my life, all of which is very sweet but totally unrealistic.
The nature of the treatment regime and the fact that I take him to and from his appointments has automatically stopped or reduced some of my activities and I’m gradually scaling back other things in such a way that it seems reasonable to him
This week has been a chemo week and it has been the hardest thus far. Knowing that this forum is here and that I/we are not alone is fabulous!
@SueD sorry to hear that this week has been the hardest for you husband.
You show our dilemmas over the last 2 yrs so well.
This very special forum and the Blood Cancer UK support line has definitely supported and got me through the last 2 yrs
The important thing is to make sure you are on the Government’s list of vulnerable patients. I can’t quite remember how I was put on that list - I may have done myself it their excellent GOV.CO.UK website, but I get all the communications, the emergency PCR test kit with instructions on how to get the ant-virals if I contract COVID, and Sainsbury’s even had me on their priority delivery slot list when slots were unavailable!
I have continued to ‘shield’ throughout the pandemic, which I regard as a wise move, and my wife (and carer) has been shielding too, although she has been getting about a bit more lately, especially since I had my 4th COVID jab.
I have relapsed myeloma, after chemo and stem cell transplant, and am back on chemo again.
Hi @Julian yes, 2 yrs is a long time to basically shield isn’t it.
My husband seems as if he is doing what your wife is.
I also believe ‘better safe than sorry’ and Sainsburys is also my lifeline.
Look after yourself
Hi. Both Blood Cancer UK and Guy’s Haematology Department say that I SHOULD have had the Priority PCR Test and details of how to access antivirals, but apparently nobody can tell me how to get hold of them when I haven’t received them. Has anyone else been ‘left off the list’ and found a way of getting added to it, please? But please DON’T give me the ‘sticking plaster alternatives’ of how to use an ordinary PCR test instead, etc. - we should be sticking up for our rights, not making do with second best!
A great big welcome @Rataxes and I will copy your issue to @BloodCancerUK.
I look forward to hearing more about you and how you have been doing.
Look after yourself
Hi @SueD
I am still waiting for the relevant test and info, rest assured it will come. As I understand it there was an error when selecting some CEV people and we were missed off the original distribution but from here (BCUK) it is in hand.
Everyone at BCUK and the forum helpers are great, you are in the best place.
I have just had a GP’s appointment. Well with a GP’s assistant, virtually impossible to get an appointment with a GP. I took printouts about the priority test kits and letters, neither of which I have received. I have Chronic lymphocytic leukaemia (CLL) and in treatment now. This GP’s assistant who is not a nurse but has some training, knew nothing about this and even less about Chronic lymphocytic leukaemia (CLL). She promised to pass the information on but not holding my breath!
Thank you @Billy1mate , that’s reassuring!
(Sorry, thought I’d already said thank you and realised when Iogged in just now that I hadn’t press the red button when I’d finished typing!
We’ve just booked a GP appointment for my husband and I shall talk about this with him then!
I’m in the same boat Retaxes. No-one seems able to help with it and I now have the convoluted workarounds thanks to Blood cancer UK’s online updates. Basically go to a testing centre if develop symptoms and then keep calling GP, etc. until you hopefully find someone who will help. Far from re-assuring!
In general terms, I’m ok thanks but these are uncertain times for the CEV amongst us. It does feel like we’re being thrown to the dogs a little, it’s not that I want society to be held back but the removal of masks and testing are very worrying. I don’t understand why ‘learning to live with Covid’ doesn’t include society learning to live with those. Still, let’s see what (if anything) there is for us in the announcements today.
Finally (i.e. many weeks late) got hold of my Priority PCR test after intervention by my MP, Helen Hayes. She referred the case to the Clinical Commissioning Group, who in turn got Test and Trace to email me, telling me to 'phone 119 and speak to the ELECTIVE CARE TEAM. It took a few attempts to reach the right people, but they were right on the ball and very helpful. Ms Hayes, you are a star! Anyone else in the same position might want to contact the ELECTIVE CARE TEAM directly. Good luck!
