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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.
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
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
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
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.
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
Hi Clare,
I had my transplant in November 2019 in the height of covid, unfortunately due to a virus attacking my brain I ended up in a induced coma on Christmas eve and woke up on Jan 8th. I was sent home on 8th Feb.
I was fortunate enough to have a place I could stay where I was safe and away from the risk of catching covid and had company, I had moved into my parents house prior to my transplant and after I was discharged from hospital as I have children who go to school so needed to stay safe. (They still went to school at that point, prior to schools allowing kids to work on line). I moved back hone in July 2020 while my kids were on summer holidays, which was easier as every one was isolating then.
I was told to have the covid vaccinations as soon as medically possible. Luckily I have had all 3 Pfizer vaccinations without any side effects.
I have the childhood immunizations to be administered yet at some point this year, and to hope they are as easy for me to tolerate as the Pfizer ones have been.
I am still nervous about going outdoors but it is becoming more easier as mentally I feel better if I can go out and try and resume some sort of a normal life, (I.e. food shopping, going to the park, meeting friends).
Kal
Hi Kal, wow thats a dramatic turn during your transplant! I hope you're fully recovered from the virus now with no lasting effects. It must have been hard not being able to be with your children when you were discharged, but under the circumstances it was probably a sensible precaution.
It's now some time since my transplant, so in turn it's also some time since my childhood vaccinations. I didn't have any problems with any of them so I hope you will be OK too.
I had two doses of the Astra Zeneca vaccine followed by a booster of Moderna. I had a headache with the first, barely noticed the second and had a really sore arm with the booster, but everything seems to be OK now. I work in a busy office on a construction site and am surrounded by people, many of whom have tested positive at various times. How I've avoided catching Covid I just don't know. As a precaution we are all doing LFT's twice a week so hopefully we don't get people coming into the office with the infection any more.
For me and hopefully many others, life feels like it is finally returning to some sort of normality. Just in the last couple of weeks, I've been to a large awards dinner in London with probably 1000 people and have attended other social events with what seems like a normal atmosphere. It does feel like we have finally come through it all though I know there are stil people getting infected and sadly still people dying.
For those of you that are more recently transplanted I can relate to you feeling nervous. Hopefuly being able to get out and about, particularly outdoors where the risk is lower, must be a relief. I think it will be some time yet before we can all feel truly safe, and it's encouraging to see many people still wearing masks when out shopping. For those of us that still prefer to use a mask when in public places we feel less like the odd ones out.
I hope the rest of your recovery continues without incident and that the childhood vaccinations when you have them go smoothly with no ill effects.
All the best,
Steve
Hi Steve
Thank you so much for your reply.
I have been off work for over a year now, my recovery has been slow due to on going back/ sciatic pain and lack of sleep. I am extremely nervous about going back especially since it was a highly stressful banking environment. I feel work would be a good distraction and being in contact with people in a daily basis help mentally. I am re-evaluating my work options as i don’t want to go back to that stress.
When did you have your childhood vaccinations?
Kal
Hi Kal,
I've just checked my vaccination records and I started havuing mine in 2015, which was 2 years after my transplant. I hade GvHD after my transplant so I was immunosupressed for a long time, and I ssupect that I couldn't start my vaccinations until I was off the Ciclosporin.
As far as work is concerned, is working from home an option? I know it's not the same as working around other people, but many of us have adjusted to working from home in the past couple of years and if it gets you back into working it may help. I was off work completely for 11 months from the start of my treatment, but was able to start working from home and ease myself back into working life. I felt like I was at least contributing something, even though I was not given much work and often felt a bit of a fraud. I only went into an office a couple of times for around 18 months and even then was very cautious about my exposure to people.
Even if you can work from home on a light duty/part time basis as I did it may help, and with things like Microsoft Teams, I think everyone has adjusted to a different style of working due to the pandemic which might help you get back into things?
Regards,
Steve
Hi @Kalkaur
Claire from the Patient Services team here - I'm so glad you have found the Forum. I just wanted to direct you to some of our support and information, which might be helpful to you at this time.
Our dedicated webpage is regularly updated with information on coronavirus & stem cell transplants: anthonynolan.org/coronavirus. Please bear in mind that your medical team will have the most comprehensive understanding of your medical history and the potential impact COVID-19 could have on your health.
You might also find it helpful to have a read through our information re returning to work: https://www.anthonynolan.org/patients-and-families/recovery-life/returning-work.
Anthony Nolan also works in partnership with an organisation called 'Working To Wellbeing', a team of wellbeing specialists including qualified psychologists, with years of experience providing support for stem cell transplant patients (and family members). They can provide both telephone emotional support, and support re considering returning to work. You can find out more on our website: www.anthonynolan.org/tess and here: https://www.working2wellbeing.com/clinical-services/. If you would like a referral, please do feel free to get in touch with us, either via our Helpline (0303 303 0303, Mon-Fri, 9-5) or by emailing [email protected].
I hope this helps.
All the best,
Claire
hi , I had my transplant in the height of covid and I went in the week of lockdown and apart from 7 days at home I was in 7 months , we have kept ourselves so safe , and we really don’t mix with people
Hi Michelleanne
Similar for me. I've been feeling very isolated for ages, but this afternoon after a long time of avoidance, visited friends with my hubby. It felt really liberating. We laughed, a rare thing. I spent the whole morning working towards it, eating, resting etc. But till now it was worth it. It's a very difficult path, risk, self protection.
Best wishes
Helen
Hi Helen
I feel the same , we don’t go anywhere , I get all my shopping delivered , we met friends for coffee , it was nice to do something normal
Morning Claire. I am 18 months post transplant and when I think of my journey since then it is quite difficult to comprehend. I lost over 2 stone in hospital because I couldn't eat because of GVHD in stomach. I spent the first 3 months in a wheelchair as I didn't have the strength to walk. I was very fit before becoming ill and longed to get back to it. I am nearly 69 so it's not easy to regain lost muscle. I am happy to report that I have persevered and now go to the gym at least 4 times a week and can walk up to 4 miles in one go. I have also recently taken up a 10k swimming challenge for November and am swimming 62 lengths at a go. I know it is difficult to image how you can get back to pre-illness fitness, but with determination and support from your family and friends it is possible. Good luck to everyone fighting this horrible disease.