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How are you feeling?

Hi online community,

I hope you are all keeping okay. On behalf of the patient team, I want to check in and see how everyone is feeling now that we are seeing a relaxation of nearly all restrictions across the UK? Understandably this may provoke some worry or differing thoughts.

Is there anything we can do to further support you?

Do let us know how you are doing and how things are.

I look forward to hearing from you.

Best wishes,
Clare

Comments

  • Morning Clare,

    It's good to have a little freedom back at last but as someone who had my transplant a long time ago now I guess I'm probably a little more relaxed about the easing of restrictions. That said, I am still nervous about being exposed to Covid and how my body would respond if I caught it. I work in a busy site office on a construction site and there have been times when the bug has gone through the office like a dose of salts, with several positive cases and many others being notified to self isolate. I feel lucky to have avoided it even though I didn't shield fully last year, though at the start of this year I heeded the advice to shield completely due to the new, more virulent strains.

    I still have concerns about how my immune system would react to a Covid infection. I'm currently waiting for my hospital team to arrange my late effects test which has been delayed since last year, and I'm keen to explore whether there is an antibody test they can do at the same time to see whether I have any resistance.

    I heard on this mornings news that it's been announced that booster jabs are likely to be available in the near future for the over 50's and clinically vulnerable (I fall into both those categories!), so will be eager to take up my opportunity for the booster when it arrives.

    I had no qualms about having the original vaccinations, having taken the time to listen to experts in presentations by the likes of Blood Cancer UK and so on, rather than the media. I had no major side effects from either of the doses, with just a headache for a couple of days on the first jabe, and very little on the second jab. Hopefully the booster will be the same. I'll be curious to see what vaccination will be used for the booster and whether it will be the same as the Astra Zenica I had previously.

    I know there will be others out there who are preparing for transplant, going through transplant, or recently transplanted who will be a lot more concerned than me about the easing of restrictions and I can certainly appreciate their concerns. Had this been around when I'd been in that position I would certainly be very concerned. As it is I will continue to be cautious, maintaining distancing, minimising exposure to large groups, wearing a mask whilst shopping, and exercising a strict handwashing regime. Having come this far I'm still keen to avoid the risk of contracting Covid.

    Regards,

    Steve.

    Tom_AnthonyNolanFalloutOnTour
  • Hello Steve,

    Always fantastic to hear from you and thank you for this insightful, honest response.

    It is so valid to still feel nervous about the situation, and especially when you are often hearing about cases in the workplace, where often people can feel most vulnerable. It's good that you feel able to put in those cautious measures like you have said and to feel that you have some ways to manage the fear.

    Fingers crossed that your hospital team are able to do the late effects testing soon so that you have a clearer idea on things. I am glad you are still able to keep in touch with them and raise any questions you may have.

    It's also great that you're keeping up to date with reliable sources, as we know that's also important! We will continue to update our coronavirus webpage: www.anthonynolan.org/covid

    Thanks Steve for letting us know how you're getting on and please do feel free to also let us know if we can support you in anyway.

    Thanks for continuing to be a brilliant online community champion too, and for being there for others.

    Chat soon,
    Clare & the Patient Team

    Dieseldrinker62FalloutOnTour
  • Hello Clare

    I know those especially going through treatment have understandable concerns especially around the effectiveness of the Vaccinations in those immuno surpressed.

    Myself, I am carrying on as I have been. Following strict measures with use of good hand hygiene, social distancing, using masks and utelising lateral flows multiple times a week.

    I got through last year with my art and walking my dog. I shileded up until June as I am a carer for a family member and had to support them. I found taking contol of things that i could like the above eased my overthinking and anxiety.

    For me the hardest part is the current school holidays, i am less inclined to attempt going new/different.

    I think even having this as an open dialogue will help others.

    I had reasurance from my team this week that i have some immunity. With advise to carry on the precuations i take and have the booster when it is available.

    Best,

    Michelle

    Tom_AnthonyNolanFalloutOnTour
  • Hi Michelle,

    So good to hear from you and thanks for taking the time to reply.

    That's great that you have felt able to utilise what helps you most, especially as you navigate your own health and wellbeing as well as care for your family member.

    Glad to hear that your team are on hand regarding your immunity too, so that you feel informed about how that is and what may options may be ahead.

    Agreed - it can be helpful to recognise that there is still uncertainty and just doing what is best for the individual.

    Thanks for letting me know Michelle. As well as for continuing to be a brilliant online community champion too, and for being there for others.

    Chat soon,
    Clare & the team

    chelle_16
  • Hi Clare

    I hope you are well.

    I feel quite isolated from mainstream society a year after my transplant I am very vulnerable and having both astrazeneca vaccinations and no antibodies showing I am counting down days to my booster which I hope is pszizer.

    I have been shielding and find when I'm out people are not clear of the meaning of being immunocrompromised. Keeping 2m distance etc.
    I had my first well overdue dental appointment and the practise was great but just getting there walking caused me a lot of anxiety.

    I written politely updated note on my front door to remind people to keep their distance. I'm still taking every precaution I did last year. Looking after my garden and new cat I recently adopted.

    Would be good to hear from those also new out of transplant I'd love to be able to move on and I practise yoga mindfulness at home. At the moment with no antibodies showing it is very difficult to partake in normal activities without worry of infection constantly around.

    I haven't been going anywhere and now have a bad infection with hospital treatment required.

    Clare_AtAnthonyNolanDieseldrinker62FalloutOnTour
  • Hi LauLau1, thank you so much for your reply.

    It is completely understandable that you are still feeling isolated as you navigate what it means for daily life to be immunocompromised during the ongoing pandemic. It's still not an easy time whatsoever. It sounds like you are doing what you can to look after yourself and feel safe.

    I am glad to hear that you feel that there are precautions you can take, to ease some worries.

    Taking some time out for yourself to practice yoga and mindfulness sounds like a great idea. Please do let us know how you find that.

    Fabulous news also about your new companion! I hope you are both settling in to each other. I know many patients find comfort in a pet to keep them company and to bring joy to their day to day.

    It sounds like you are keeping in touch with your transplant / healthcare team, to make sure you share any concerns with them.

    Hope you are keeping okay and please know that we are here for you if you need anything.

    Great to hear from you, thank you for taking the time to let us know how you are.

    Clare

  • Hi Clare

    Now Scotland have been free from restrictions for a while now, I thought i would leave a message.

    It’s been honestly refreshing to get back to normal after a difficult 18 months for everyone. Even though there is an increase of cases, I still feel safe if i follow all the rules and wear masks in every public place I am in and from what i can gather, everyone else I have also talked to feels the same way.

    When in public, there also seems to still be large number of people wearing masks which is very reassuring to myself when going out.

    I thought i would leave it short and sweet but still wanted to give an update anyway!!!!

    Cameron

    Clare_AtAnthonyNolan
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