Hello All
I have been absent for a while, due to work and other challenges. When I wrote my last comment it was to just charge the number of vaccinations.
Well since then I caught covid prior to the Easter bank holidays so prevented me from going on holiday.
As for the anti virals well that is a bit of a joke to be honest. My private team registered me on the Monday morning very quickly, my normal hospital accepted me by lunch and I was amazed. Then they advised they couldn’t now treat me due to the new government post code rules, two days later I was registered at another NHS hospital (never been there before 1.5hrs form home, my normal hospital 30mins) I eventually got a call from a doctor on Thursday night 6pm (now 4 days from positive test) went through a huge list of questions, which at the end he said you qualify for it. He went to say good by, I push and said you cant.
I ask when I would get treatment he said at the earliest Tuesday but its bank holiday so it might be longer, (Tuesday would = day 9) the recommendation if treatment within 5 days that I read.
I explained this and the doctor said how are you feeling, do you have breathing issues (which obviously I didn’t or I would have gone to hospital / note I am asthmatic as well) he said if you are not having breathing difficulties then I wouldn’t bother.
So needless to say I didn’t get the treatment and I have recovered okay, but it took 11 days to get a clear test, then I had a week feeling tired but not okay. Then I got a sever cold, caught and infection which need antibiotics after, I swerve its from covid but cant prove it.
The only then I keep thinking at least I had developed some immunity that showed up in the immunity test.
If you can see the funny side the Wednesday after the bank holiday the NHS sent me a text to ask for me feed back on the treatment, needless to say in the free text section I was less than complementary.
Up to now my NHS treatment when I have it (I am mainly treated through my private health) has been good but this was shocking.
Hi @Cannon what a palaver is all I can say and just when you are not feeling up to it and anxious that you have Covid.
Really look after yourself, thanks for updating us and I hope you did give the NHS feedback of your experience.
Please do keep posting.
I have lymphoma and just had phone consultation… As well as usual bloods they tested for Covid antibodies as I am very scared and still shielding. Very disappointed to learn that after SEVEN vaccinations I have ZERO Covid antibodies. Treatment finished a couple of years ago and at moment having regular blood tests so felt sure that I would have some response. Scary business attending any NHS facility as nobody wears masks (apart from me)and shortly my husband will have daily radiotherapy for eight weeks for prostrate cancer. Anxiety levels through the roof
Hi @Maureen54 I’m so sorry you’re feeling so anxious. Please do give us a call on 0808 2080 888 if it might be of any support to you to talk things through. It must have been so disappointing to hear this test result.
You may find it useful to read through our vaccine efficacy webpage here, and the ‘What do the findings mean for me’ section may also be useful in formulating questions for your healthcare team - Covid vaccine efficacy and blood cancer | Blood Cancer UK. Don’t be afraid to be honest with your healthcare team about how anxious this is making you and seek their advice.
Something that it important to remember is the process around accessing an assessment for post-exposure covid treatments, if you were to test positive for covid - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK. You may find it useful and reassuring to get in touch with your team and talk through what the plan would be if you were to test positive.
This webpage might also have some useful information for you Coping with the lifting of restrictions | Blood Cancer UK. Also, we have a blog here where six people affected by blood cancer talk through what helps them to make decisions around risk - Blood Cancer and Covid-19. Making Choices that Work for You | Blood Cancer UK
We also held an Ask the Experts Q&A the other day, on the topic of anxiety, - you’d be so welcome to watch it if you feel it might be useful, even if it just helps to remind you you’re not alone in what you’re experiencing - Ask the Experts Coping with Anxiety - YouTube.
We’re only at the end of the phone/email if you want to talk anything through, at any point.
Take care, Alice
Oh @Maureen54 I am so sorry to hear that your anxiety levels are through the roof.
I had zero antibodies after my 2nd or 3rd vaccine and I haven’t bothered since then.
I have decided that if I am concerned about my surroundings it is up to me to take precautions. However with the NHS it is worth asking the staff to wear a mask or let you wait somewhere away from others, the worst thing that can happen is that they say is ‘no’.
I am not surprised that your anxiety is so high as your husband is about to have treatment for prostrate cancer.
I find I am extra sensitive to others getting a cancer or other diagnosis, it really hits me since my diagnosis.
The main thing is that you both look after yourselves, you have a lot going on.
Be ever so kind to yourselves and please keep posting and/or ring the Blood Cancer UK support line on 0808 2080 888
Oh Maureen54
That is a worry for you . Wow no antibodies! I have had 7 vaccines too but also had covid twice, so not sure the antibodies and vaccines are always the same it evolves so quickly.
All I can offer is that the prevalence of covid and the strains of covid in the community do appear to be significantly lower. Treatment for covid has advanced too on both occasions I received antiviral / antibody treatments so my experience with covid was really not that bad at all. In fact my husband had it at the same time , he was in bed for ten days meanwhile I received antiviral treatment and was absolutely fine. So yes absolutely get your worries but also be reassured that should you be unfortunate to contract it there is lots of treatments and support still available.
In our local cancer centre patients and staff do still wear masks but only there and my appointments take place in the main hospital and no one does there. Do you know I’ve travelled on planes , trains , sat in hospitals, been in restaurants, pubs, both times I believe I picked up covid was from the supermarket. Thinking of your husband hope his treatment goes ok.
Thank you all for your kind words and encouragement - it’s good to know there are people who understand x
Hi @Maureen54,
No wonder you are anxious, after having learnt that you have no Covid antibodies, and with your husband about to start radiotherapy. All I can say, is that not all Covid antibody tests are equal. I did one of the Government antibody tests and tested negative for antibodies. I was quite alarmed until I realised that that the test I took only tested for antibodies to the capsid protein and at that time I hadnt actually had a Covid.infection, so negative was correct me.
Hope the radiotherapy goes well.
Please do not be afraid to ask nhs staff to where masks when around you, or feel uncomfortable wearing masks in the waiting areas when everyone else isn’t.
Best wishes
Helen
Distraught and in tears after my 8th Covid jab. Despite no antibodies after 7 jabs I was told to keep having them. Awful experience this morning at local GP. When they opened their doors I explained my situation and asked at the very least if the people seeing to me could wear a mask. Marshall said to wait and he would speak to someone. I waited outside whilst loads of people (without masks) filed in many sneezing and wiping their noses! Eventually someone - I believe an NHS professional, possibly a doctor, came out and I explained yet again. After a lengthy argument with me citing that surely they have a duty of care to try to keep me safe he just said masks not mandatory and cannot impinge on their rights not to wear a mask. He refused my request that he asks the personnel involved if they would wear a mask! He said if I did not like it then maybe I could try to find somewhere else. Eventually I had to give in and joined a lengthy queue in a small space - he had told me they had 40 appointments in a ten minute period. Nobody wore masks. To add to my distress is the fear that I may pass something to my husband. He was diagnosed with prostrate cancer July 2022 and after lengthy delays he finally has an appointment next week for the preliminary scan prior to radiotherapy. They hope to start the treatment a few weeks after that!
Oh @Maureen54 I am so sorry that you have been distraught and in tears after your 8th Covid vaccine, it sounds as if you had a really distressing experience.
As you say you are not only worried for yourself but also your husband.
Obviously you have the right to take matters further in writing or you could just really look after and be kind to yourselves, you have so much going on.
Please do let us know how you get on over the next few weeks.
Fingers and toes crossed for you both xx
Thank you Erica - complaining won’t help.
I have lost all faith in the NHS. In late July 2022 my haematology consultant told me they had “overlooked” - his word - the fact that I should have had a PET scan about 15 months before ie May/June 2021, following some treatment.it was the first time I had dealings with the consultant as prior to that telephone consultation junior doctors phoned me so l guess they brought out the big gun in case I complained about negligence. In the end I had the scan about 18 months late and luckily nothing too bad showed up. I read on the forum some people are lucky with their doctors etc but unfortunately I have to chase everything including letters, blood forms. It’s impossible to reach them by phone so I email and chase until I get a reply.
Thanks again for being there and letting me vent x
Oh @Maureen54 we are always here for a vent and so sorry for your experiences.
Look after yourselves
Hi @Maureen54,
I am so sorry that you had such a horrible experience getting your jab. There is no reason at all why your GP surgery could not accommodate your needs. They could have vaccinated you in a separate room, in your car, or simply outdoors. Their behaviour was quite discriminatory,unacceptable and unexcusable. If it was me I would complain, starting with the practice manager.
Best wishes
Helen
Helen
Thanks for your support. It was not my GP practice - they don’t do Covid jabs it was another practice. I did ask if they could do the jab by the open front door - the answer all their equipment set up elsewhere. All you ever get is that masks are not mandatory and he was so keen to stress he could not impinge on their rights. I was amazed that he would nit even ask! I argued that they have a duty of care to me - he was not interested. I find that when you explain to the general public they seem sympathetic - NHS hide behind its not mandatory and the super vulnerable have no voice.
I hope nobody else has to go though a similar experience. We have to deal with so much that having to fight all the time just adds to the stress.
Thank you all for for your kind words and support.
Best wishes Maureen