As precautions were abandoned I welcomed the “Distance Aware” idea that started in Wales and spread to NHS Scotland. I was disappointed when badges and lanyards were only available in libraries and Asda stores (nearest 45 miles) but even more worried that although NHS Scotland produced posters they were not circulated. Making a start I put on badges and lanyards and printed posters and took them to our Hospital, GP, pharmacy, school, Fire Station, Mountain rescue, shops and allotments. I reasoned that when NHS England promoted the scheme and awareness it would help protect the immunosupressed. The result was not encouraging - in our small town we get lots of tourists (mostly English) and they keep coming really close to peer at the badges - absolutely defeating the purpose.
In the face of the news of waves of Omicron variants I decided to change tack and brought out the “Please Stand Back” badges I had purchased from Blood Cancer UK - at least that message can be read from a distance although the “I’m shielding” bit is too small and invites people to come close and squint anyway.
I think I’m going to become a hermit until a conventional vaccine and an antibody vaccine become available to the immunosuppressed.
P S if BCUK order more badges PLEASE get better fastenings as the tiny safety pins are useless…
Hello @UncleRoy,
I will pass on your suggestion regarding the badges and their fastening to the team.
Do take care and get in touch if you need any support:
Gemma
Gosh @UncleRoy I have to say that you are really doing everything you can to get the message across, thanks for all your hard work.
Yes, @GemmaBloodCancerUK I do agree with @UncleRoy bout the very small flimsy safety pins.
Take lots of care of yourself and stay safe.
Hi @UncleRoy, @GemmaBloodCancerUK and @Erica. I agree. The safety pin on the back of my BCUK badge broke more or less straightaway and I have tried several ways to repair it without success. Would it be possible to produce a lanyard of some sort, rather like the ones people wear to say they are exempt from wearing a mask, for example? Some sort of badge to encourage people to keep their distance is vital, I think. Thank you. Willow X
Helo @Willow, @UncleRoy and @Erica
I have spoken to our lovely supporter relations team and they were so sorry that the badges were not robust. They have sent out over 2600 which is great, they did explain that the fastening were simple to keep costs down but are very happy to replace and hear your feedback/suggestions:
The best way to contact our Supporter Relations Team is on 0808 169 5155 or by getting in touch online.
You can also email them on hello@bloodcancer.org.uk.
Hope this helps and take care
Gemma
Thanks @GemmaBloodCancerUK I understand and thanks for the contact info
i have NHFL . covid numbers going up fast in the south now, i am due a 5th vaccine but due to bad affects from them so far ( heart beat whirring before complete the beat ,scarily could not breath in or out like a short paralasys and other symptoms) spoke to GP who wasnt interested said it was my choice ,was dismissive even of my cancer as i am in remission, i also have heart desease ,i am hesitant to have it i keep putting it off. my friend had heart attack after his vaccine. i am very carefull every day . confused as to what to do its causing me anxiety .
Oh @skye what a fearful, anxious dilemma you are in…
Can you talk to someone on your Cardiology/Oncology/Haematology team with your fears and whole medical history?
If you would like to speak to someone the Blood Cancer UK support line is there for you and I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK
Have you had different vaccines or the same one each time?
Please let us know how you get on and be kind to yourself.
Hi @skye
Hope you’re ok and thank you for posting.
I share your anxiety, I was one of the earlier ones to multiple covid vaccines 1st Feb 21 2nd Apr 21 3rd Aug 21 and 4th Oct 21 and despite being a generally healthy 39 year old I had a pretty severe heart attack late November. I would say that was a bigger shock than being diagnosed with blood cancer and it’s still a mystery what caused my attack. All the known causes of a heart attack didn’t apply to me and though I came up with a few ideas what triggered it, having the jab did and still does pop into my head. I researched online as I’m not sure whether it’s because I had a heart attack but it seemed to be more prevalent with people suffering at football matches and supporting events and younger people going down with it too, but the odds of it being due to the vaccine was like 1 in 200000. I guess I was just unlucky and took one for the team.
When the 5th jab was advised I spoke and asked regularly every new medical professional I met whether I should have it, but neither were 100% which to be honest is understandable. My haemotologist said in April 22 that I should be fine with 4.
Problem was my place of work people aren’t testing, need exemption to WEAR a mask (which is crazy) behaviour and attitude has returned to pre covid (which I get) and recently have been dropping like flies with covid despite their jab and having it before.
I made the conscious decision to have a booster a few weeks ago as it has been 9 months since my last. It’s a risk as is anything but one I made at the time and won’t regret and it was only after spending weeks deliberating. The night I had the booster I suffered symptoms similar to my attack minus the pain. But the next day I was back to normal. I still walk around nervous and super aware of how I’m feeling but I feel for me, it’s not regret having it, though that first night I was f’in and jeffing at myself for having it…
I’ve not caught covid (touchwood) but believe that’s because of my behaviour and attitude as well as maybe the safety blanket of the vaccine. Though I can’t control others I can have an impact on myself and assessing risk. Can I trust the people around me? Is the event something I want and need to do? I’m certainly not shielding but whenever I’ve been somewhere busy or chaotic I come home wait a day and do a quick test. I definitely seek comfort that if I am unfortunate to catch covid that there is medication and a procedure special for us to manage the situation where we are fast tracked compared to non blood cancer patients.
If you are like me, I don’t think you will get answers to the question of should you get jabbed a 5th time… as people will be hesitant to get it wrong or be blamed for swaying you one way or the other especially if in hindsight is was wrong to do so.
Regardless, as blood cancer patients I feel we are in a better place than where we were last year with the developments of post positive covid diagnosis. With special thanks to the charity for representing us in pushing this forward with the government.
Hello Erica ,
thank you for responding, i have had 2 astrazenica and 2 pfiezer vaccinations.last one was 3 months ago. affects get worse each time. decided to contacted my surgery again and met with a short reply of " your choice " no discussion at all, just call them if i decide to have it. no mention of a different vaccine possibility, feels like damned if you do and damned if you dont ,its an issue to me because of what i experienced and what happend to people i know ,otherwise i would of been first in que for 5th one…decided to think on it bit longer ,the panic and anxiety has lessened today ( reigning in the galloping horses in my head) feel more in control .
Hi Rammie18
thank you so much for your response ,it is so good to hear someone elses experience and thoughts , i keep reading it and its helping me to get some perspective and take a step back from the blind panic anxiety to think about it more clearly . i get what you wrote and it helps thank you .
Hi @skye I like the ‘galloping horses’ so true, I think mine could win the Derby.
Perhaps just take time to reach a decision that is right for you.
Look after yourself and please do let us know what you decide.
Dear @skye, I am so sorry to hear that you have such anxiety regarding the vaccine. It is also a shame that you are not getting the support from your GP as I am sure this would be helpful. May I ask whether your reported you reaction via the Yellow Card site https://coronavirus-yellowcard.mhra.gov.uk/? This would help wit understanding these reactions for different patients.
Do you still have any contact with Haematology? This may be an avenue to go down in regarding to supporting further vaccine access. Your reaction sounds significant so I can understand your worries. There are allergy clinics within Hospitals that can support vaccinations but this would need a referral from your GP or Haematology team.
If you so want to chat this throught please do get in touch: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
Hi @skye I have been thinking about you and just wondered how you are doing and feeling now?
Take lots of special care of yourself
Hi Erica
i decided to not have the vaccine at least for now , have weighed up the covid risk and current lifestyle i have which consists of using mask ,cycling, walking places, meet people outdoors no groups ,some outdoor voluntary gardening by a lovely pond which i love, mostly food deliveries, been helping boyfriend with health problems has heart lung needs a double heart bypass op but they wont do it due to lungs are bad think the next heart attack he wont survive has bad angina everyday ,he lives nearby .we are doing the best we can together to enjoy life we have. strangely for all the bad stuff i feel so good at the moment living best life i can every day, as each one is precious , feel very alive and in the moment i even went swimming in the sea it was glorious at 7 am in morning .i guess i have let go of the anxiety of the vaccine for now( or burying my head in the sand ) it maybe that i suddenly decide to get it one day , i just want to enjoy what life i do have every day for now and spending time with the love of my life and soul mate .if i get covid then have to hope treatments help.
I always feel relieved when I make a decision @skye.
Enjoy your 7am swims, sounds wonderful to me.
How very special that your boyfriend is the love of your life and soul mate.
Your post reminded me of the Rod Stewart song Live the life.
Live the life you love and love the life you live, enjoy