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My 500th post!

Hi all, I recently noticed that I was approaching 500 post conversations and comments and so here it is, my 500th since I joined the forum and soon after became an Online Community Champion.

I hope you’re all keeping well and managing to stay healthy despite all that’s going on in the world. For those going through treatment at the moment or in the early stages of recovery from your transplants I can imagine how worrying a time this is for you.

My transplant was just over 8 years ago so my immune system has hopefully built up some resistance to most infections. I’ve also had my childhood immunisations again a few years ago too. Even so, the risk of contracting Covid-19 makes me nervous, and despite the time since my transplant I still received shielding letters from the authorities. In the first lockdown I didn’t shield totally, but with infection rates this time much higher I’m following the shielding guidance more rigidly.

My employer has thankfully been sympathetic and as I would normally be based in the offices of a large construction site, I’ve actually been banned from site! In recent weeks the site has had a number of positive cases and others that have had to self isolate due to contact tracing, so I’m glad I held my ground and didn’t return in the new year, choosing to work from home instead.

Having had a shielding letter I’m not sure where I sit on the priority list for vaccination as my GP possibly views me as clinically extremely vulnerable, even though my transplant was well over the 6 month threshold. I know that my GP is now vaccinating the over 70s and the CEV group is the next cohort they say they will be contacting. In theory I would be a priority 6, but it’s possible that I may be registered at priority 4, maybe due to my age or my high blood pressure increasing the existing risk from my transplant. I ran the Covid age calculator and those three factors calculated my Covid age to be 75!

I’m hoping that I will be contacted soon and have no qualms about having the vaccine despite the scare stories being spread by those that choose to cause mayhem. I’m satisfied that sufficient research has been done into the vaccines to ensure they are safe and pose no more risk than other vaccines.

I can’t wait till all this is over and our lives can become more normal, though like us as transplant patients I think everyone will have to become used to a ‘new’ normal. I’m not sure things will ever go back to the way they were pre-Covid.

So to all of you, whatever stage of treatment or recovery you’re at, I send you all my best wishes and hope that you all stay well. I will continue to support you alongside the other Online Community Champions and the brilliant Anthony Nolan team.

Here’s to another 500 posts!!

All the best,

Steve

chelle_16Tom_AnthonyNolanChiara_AnthonyNolanBernieFalloutOnTourClare_AtAnthonyNolanamcnamee

Comments

  • Hello Steve

    Wow! 500 posts. Congrats! In the short time i have been volunteering along side you i have seen what amazing work and what a huge impact you have on those that are part of the patient and families forum.

    It's a pleasure to be alongside you in this community as a volunteer.

    I agree with the vaccine. I am more than confident in the research and safety. After all it would not be cleared to be used if it wasn't safe. Ofcourse we have no idea on the level of protection for those post SCT or on treatment. But some protection is better than none.

    My county is behind, although I haven't followed up with my GP about where we are at. I know we have a hub in my town so hoping that is where I will go. Other parts of the country seem to have to travel alot further. Which can be difficult logisticaly if people haven't got transport.

    Either way it gives me hope for the end of this. I hope it does for others too. For me I am not conerned with what 'normal' is after as i have had to adapt to 'new' normals before. So i think i will adapt ok. Might not be easy for others and i apprecaite everyones situations and experiences are different.

    I have found shielding harder this time. I think because I lost my support network and there where a few changes in the proffesional support I get leaving me a little unsettled. But as a whole i have my art and my dog they both keep me occupied enough to stay out of trouble 😉😉

    Congrats again on 500 posts. What an achievement.

    All the best,

    Michelle

    Dieseldrinker62
  • Steve

    Congratulations on the 500th post. I'd like to echo Michelle's comment about your work on this forum, you are unfailing in responding to people in a positive and approachable way.

    I had my transplant for ALL in late 2015 and ever since I joined this forum you've always been someone who had a relatively similar experience to me, but being about 2.5 years ahead of me, showed me what was possible and in a slightly silly way gave me hope!

    Like you I wasn't sure whether I would be in priority group 4 or 6 for the vaccine. I too had all of the "clinically extremely vulnerable" letters when I wasn't sure I should have had. However, I got a text invite for a vaccine on Monday this week and have an appointment on Sunday for the first dose.

    Fingers crossed you both get your appointments soon!

    Tony

    chelle_16
  • Thank you both for your comments and support.

    Michelle, I'm sorry to hear you're finding this lockdown difficult, but I don't think you're alone. I also feel that this time has been more difficult due to following the guidance more rigidly. I find working from home a chore as I am spending every day sat alone at working in a log cabin in the garden with very little interaction with people other than email and the occasional 'teams' call. As I headed out of the house this morning to my cabin my wife referred to it as 'Groundhog Day', which I thought was a perfect description. Hopefully as the vaccine rollout continues there is light at the end of the tunnel.

    Tony, I'm glad you've found my posts to be useful and that they've helped keep you going. Thats why me and the other Community Champions are here and the combination of us and the other patients and family members sharing our experiences is why this forum is so good. By sharing our stories and feelings we help each appreciate that we all go through similar experiances. Even though there are variables in how our bodies react to transplants, there is usually somebody else who has gone through the minor differences each of us faces.

    I liken this forum to the waiting room during my clinic visits shortly after my transplant, when you could chat to other patients about their transplants and how they were getting on. As your clinic appointments become less frequent you lose that interaction with others that understand your situation and I think that is where this forum becomes so useful. Even 8 years after my transplant I find it quite therapeutic to talk to others about our transplants. If it helps people get through the darker days and see that things can get back to near normal then all the better.

    I'm pleased to hear that you have your vaccination appointment and hope you'll let us know how it went afterwards. I have a work colleague who has COPD and he had his jab yesterday which all went well. My mum is in her early 80s and has had both doses with no issues and my dad in his mid 70s literally just had his first dose this morning without any problem. It's good to hear positive feedback first hand and I'm sure it gives comfort to those still waiting to be contacted.

    All the best for Sunday.

    Regards,

    Steve

    chelle_16Tom_AnthonyNolan
  • Hi Steve

    Yes 'groundhog day' sounds just right.

    We are certainly all feeling the same right now. That is helpful in some respects to know that we aren't alone and that everyone is experiencing the same constraints with lockdown or isolation.

    Hope your day in the cabin goes well.

    All the best,

    Michelle

    Dieseldrinker62
  • Hi Steve!!

    Congrats on 500 posts/comments!!! Its been great getting to know you for the short period of time I have been volunteering!

    Due to being an NHS volunteer, I got my covid vaccine 3 weeks ago and I can report that I didn't get any side effects for the vaccine. I had a sore arm for a couple for a couple days after though!!!

    Upon receiving the vaccine, I had to also wait 15 mins to make sure I was ok.

    Between that and getting an offer to study medicine, I have had a great start to 2021 and hoping it will continue.

    I have also found lockdown harder this time round as I cant meet up with friends and everyone is back at uni/college/school and work so I often found myself alone during the day until anyone is free to chat.

    Hope all is well

    Cameron

    Dieseldrinker62
  • Hi Cameron,

    Great to hear that you’ve had your jab and congratulations on the news that your offer to study medicine. I hope that all goes well. Well done too on volunteering for the NHS.

    It sounds like the sore arm is the most that people are reporting, which is no worse than having the flu jab so I’m sure this feedback will help put peoples minds at rest.

    Best wishes,

    Steve

    FalloutOnTour
  • Hi Steve

    Thanks!!

    I am starting to have offer holder days so I will get more information about the courses before I make a decision.

    In regards to side effects, like you, Everyone I have talked to has just had a sore arm as well and nothing more.

    Hope you are well

    Cameron

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