I had a stem cell transplant back in August 2021. This wipes out any previous immunity and you have to be re-vaccinated with all childhood and covid vaccines.
I have a letter from the stem cell transplant programme director stating this which went to my surgery. I was given the first re-vaccine, but this was recorded as a booster as this was the only way they could record it despite the letter clearly stating how they were to record revaccination correctly.
Now it’s proving impossible to get a 2nd vaccine 8 wks later. Surgery, officious and unhelpful, no record of the letter despite it being sent by the hospital and me emailing it to them. They told me to contact 119 , or NHS England. Spoken to 119 on a number of occasions but as my records show I have been vaccinated pre-transplant they can’t help. Tried 119 again today, option 4 this time that deals with incorrect records and someone told me to get a 2nd opinion as to whether I needed my vaccine again. Eventually they found the details regarding stem cell transplant patients agreeing that the vaccines were needed again but couid only pass the request onto some other unknown entity that should phone me in 5 days time. They also suggested that I might go to a walk in centre with the letter. I did point out that I was very vulnerable and this would not be a good idea ( I can imagine that would also be a fruitless and painful process) and I really should be given an appointment the same as anyone else.
I am so angry and upset by this ridiculous situation. I just feel that no-one is able to carry out the simplest of directions and I’m left speaking endlessly to incompetent, unhelpful idiots that would rather see me using hospital resources than give me the vaccination that I need and am entitled to.
My stem cell transplant care was exceptional and no doubt very expensive but all other organisations seem happy to let me catch covid for the sake of a couple of pence vaccination, just beggars belief.
Hi @Lyn99, gosh I feel anxious for you reading this post and can understand why you are so upset and frustrated. It shouldn’t be this hard, especially with all of the information you already have!
Have you contacted your consultant at the hospital again? You said they were brilliant and just thought they may be able to advise?
I would strongly suggest giving the support line a ring to talk things through. They may be able to help with things.
Please keep us updated on how you are doing. Please take care of yourself and keep us updated.
Sending extra special wishes X
Oh @Lyn99 I really felt your emotions when I read your post, why is everything such a battle and nobody just uses common sense.
You must be so frustrated and exhausted, you need all your energy to look after yourself.
@Nichola75 has given you good advice to contact the Blood Cancer UK support line.
Please let us know how you get on one and take lots of care.
@Lyn99 we really dont need a battle after all we’ve been through. I would have thought the hospital could help with this but maybe not. you would think they wouldn’t want to leave us at risk.
My husband met a friend on Tues for a coffee they both wore masks and sat outside at a distance. The friend has tested positive yesterday. My hubby has no symptoms but has been for a PCR the morning, his lateral for was negative. We are a bit terrified. I really dont know what we will do if he does test positive as he takes me 3 times per week to hosp. Any ideas? I thought we could move into different bedrooms and I could leave him food outside the door:(
Fingers crossed he stays negative. He would be very unlucky if he tested positive. That’s really not what you need and must both be really worried. I’ve got fingers, toes and anything else that I can cross, crossed! Keep us updated X
@Summertime, I’m so sorry to hear that you have more worry about covid. Christmas Eve my older son’s lateral flow test was positive. We had 10 days of fear waiting for a positive lateral flow test result each day. Luckily I didn’t pick it up ( I’ve only had 1 covid vaccine so far) It’s all too much sometimes.
We immediately took my son for a pcr which came back positive and he was confined to the bedroom for 10 days, not 7 as is now suggested. Yes that was meals left outside the door and only him using the bathroom with a mask on between the two rooms.
I know in Swndon that they will provide transport for patients if necessary but goodness knows at the moment if there will be any staff or volunteers still at work. We have 400 staff off sick or isolating at our hospital. I have to go in on Tuesday next week and I feel so vulnerable.
Keep doing lateral flow tests yourself until you get hubby’s pcr result. You will have access to the monoclonal antibodies and antivirals if you get a positive pcr which hopefully gives some peace of mind. It does sound as @Nichola75 said that they were careful so hoping all will be fine. Do let us know.
Oh @Summertime, that is literally a bit close to home. I bet you are more than a bit terrified.
I don’t know how soon after a contact it is that another person tests positive or develops symptoms.
I suppose the answer to your question might be that he cannot take you to the hospital until he tests negative.
In theory separative bedrooms, own cutlery and plates, own towels, bathrooms and leaving his food at the door might be in order !!!
What a dilemma.
Fingers crossed for you both, please keep us posted.
That must’ve been so stressful for those 10 days @Lyn99 . It was when both my daughters had it a couple of months ago x
Hi @Nichola75 , @Erica I managed to speak to the original helpful lady in my surgery who has now booked me in for a 2nd covid vaccine on Tuesday. Their call handler clearly was talking complete rubbish. Hope she gets a rocket! She told me to go to NHS England and raise it with them so I did. I have a case number and I think they will investigate the matter with the surgery so more fool her
It feels so difficult to relax with the constant threat of covid and having to fight for everything we are entitled to let alone the cancer hand we have been dealt. We must be tough old birds xx
Hi @Lyn99 and @Nichola75 I am a very tough old bird, but also a ‘mere spring chicken’ in my head !!!
I’m so glad you have it booked in. One less thing to worry about x
Hi @Lyn99, I am really glad you eventually got a booking. It is awful that there is such a battle for the treatment you need and deserve. I am sure your transplant team would always be happy to help facilitate your re-vaccination if you have any further problems. I have also found this very useful letter from our colleagues at Anthony Nolan https://bit.ly/3zIuXPS that can be filled in and taken to any further appointments, it would just require your team to fill in your details. If you do need any more help please contact the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
Everything crossed your husband is ok. Neither of you need this additional stress. Best of luck!
Thanks @GemmaBloodCancerUK very useful info and I did speak to the blood cancer UK help line. Lovely helpful lady, thankyou.
My team did provide a re-vaccination letter to the gp and I had to email it again as it wasn’t received umhh. The call handler still couldn’t find either copy and refused me the covid jab that I can’t get through 119. I don’t like complaining but I am going to let the practice manager know as the false info being given out by this call handler could make others in our position very ill let alone the stress it has caused.
@Summertime , any news on the pcr test yet??
Yay PCR is negative and got results from last weeks bone marrow biopsy - no leukaemia present. Feeling happy tonight xx
Now that’s what I call a fabulous start to the weekend!
Brilliant news, @Summertime! X
@Summertime , fantastic news, I’m so happy for you. Time to relax a little…xx
Glad you were able to get this sorted @Lyn99 . i share your dread of dealing with GP practice receptionists as I always find them really unhelpful and quite often rude. I remember the hard they gave me over my fourth dose before conceding that my record was wrong but that “it wouldn’t make any difference”. Knowing you I’m sure that you’re more than capable of putting your case across, but it’s frustrating that you should have to and these things are not taken in hand by your practice.