Lockdown - how have you been?
Hi everybody.
As we're now almost through the 9th week of lockdown due to the Covid-19 pandemic, I wondered how everybody was coping. We're all at different stages of treatment and recovery so I guess it has been more stressful for some than others. I don't know whether many of you caught it, but I took part in a Blood Cancer Alliance webinar on Zoom last week that was broadcast on Facebook to discuss the impact of Covid-19 on blood cancer patients.
For me I suppose I've been fortunate due to the stage of recovery I'm at as it's 7 years since my transplant, so the risk to me is much lower than those of you who have had transplants more recently. The government guidance for shielding was particularly aimed at those who've had transplants within 6 months, but I think all of us no matter how long ago our transplants were, are acutely more aware of the risks of infection regardless of the current pandemic.
Having gone through a period of my immune system being compromised, I am probably more rigorous in my approach to infection control than I was before treatment, and this recent period has heightened that again considerably. I find myself washing my hands constantly, particularly if I handle anything that has been handled by anyone outside my home, such as our shopping, post or parcels.
I haven't been shielding, but have minimised trips away from home, taking a daily walk to the local park with my dog, and the occasional trip to the local supermarket, maintaining more than the recommended two metres social distancing. One thing that has astounded me at times though is how oblivious people are to the precautions they should be taking and how they carry on as normal when shopping for example. Given the restrictions we've all faced in supermarkets to maintain the social distancing, to see people dawdling around browsing goods, picking over loose fruit and vegetables, and picking goods up then putting them back on shelves, has at times caused me quite a bit of anxiety.
I'm lucky in that I've been able to do my normal job working from home, and was one of the first to be asked to work from home the morning that lock-down was announced later in the day. During my recovery originally, I built a home office in my garden and worked from home for probably 18 months after my transplant, so for me this is familiar territory and has been quite easy to cope with. As such I've been working full time, and have been on full pay, but I recognise that not everyone will be so fortunate.
My wife has also been working from home, but my twin boys whose A level studies ended abruptly, took on some contract work in a supermarket frozen food warehouse, so are the only ones who have really had prolonged exposure to the outside world. It will still be a big relief to us all when things can return to normal though.
You may or may not be aware but Anthony Nolan recently launched a new telephone emotional support service specifically for patients like us, giving an opportunity to speak to an experienced psychologist for therapeutic support during these stressful times. Hopefully this will help those who have found this period difficult.
Without wishing to turn this into a political discussion about the rights and wrongs of the lockdown, I'm interested to know how others have felt about it, what effect it has had on them, and how they have coped practically and mentally. Have you had the support you needed, either within your family, or externally. Do you have any tips and advice for coping during this time?
I look forward to hearing peoples views and experiences.
All the best,
Steve
Comments
Hello Steve
I’m pleased to report that in general I’m coping well, in fact, the greatest challenges I face during lockdown are not linked to my health. Like you I am fortunate to have undergone my transplant a number of years ago (4) and therefore the risk to me is lower.
I have also been a vigilant person regards my wellbeing as a result of being immune compromised. To date, the time I felt most vulnerable and in need of protecting myself was to attend my routine blood tests. My Haematology unit, were incredibly supportive and had put numerous measures in place to reduce the risk of transition.
I concede to feeling vulnerable when I consider the coming months. As the lockdown eases and the eagerness of many to resume a ‘normal’ life, I suspect there will be times when I find myself under pressure to partake in social events etc. which without a vaccine or medicine to manage the condition, I will feel reluctant to partake in. That is where being post-transplant by a number of years, I find it difficult to convey to others the anxiety which I feel in relation to increasing the risk of contact with the virus. For friends and family, AML was a dim and unpleasant memory and I believe they see me today as a robust strong healthy person. Whilst time does heal, I doubt the diagnosis and treatment will ever be a dim memory and like most cancer survivors there is always a nagging fear of it returning. Consequently, being vigilant regards my health is of utmost importance to my mental wellbeing.
On a more positive note, I have found it incredibly heart warming to see the NHS uniting many people across the UK, especially as someone who owes my life to the hard work and devotion to care of those who work in the NHS.
Warmest Regards
Rachel
Hi Rachel, it's good to hear from you.
I've heard others say they have been nervous about attending hospital for appointments during these times, but when they have, the experience has actually turned out better than they expected. I think hospitals these days are super hot on cleanliness and infection control and from what I've seen are a lot quieter than normal due to reduced activities. I'm due to have a late effects test shortly, though I'm expecting this may be delayed for the time being, but if it does go ahead I'd probably be fairly confident about attending the hospital.
I think you're right that the main source of concern for many of us will be as things return to normal and business as usual resumes. I had a conversation yesterday with my line manager about returning to work from my office, which is on a construction site. I indicated that my preference was to return as late as possible, when there can be some confidence that the risk of infection is low. Even at my late stage in recovery, I'm nervous about exposing myself to unnecessary risk of infection.
Like you, I think I'd be happier returning to a busy office environment or some form of social gathering once there is either a reliable vaccine or anti-body test in place. I think it will be some time before life returns to normal, but that goes for everyone, not just those of us that have undergone treatment like ours.
I agree that it has been great to see the recognition that NHS workers have had and the support that has been shown since this all began. As transplant patients we all recognise the care and dedication of the NHS staff that cared for us, but I think there's a new level of respect in the country for the work that the NHS does.
All the best,
Steve
Hello,
I'm a new Online Community Champion and was interested by this conversation Steve started some time ago.
I'm wondering how others are feeling with the 1st August approaching Racael and Steve ?
My self I'm eager to get back to networks that I find supportive but with family and friend's gatherings increasing I find I'm less likely to involve myself. I think that it is definitely anxiety about the risk to COVID for SCT patients, as I'm still on quite a bit of Cyclosporin due to GvHD. But I'm also anxious due to the length of time without face to face contact. Has anyone else found that they have retreated into a safe bubble and finding the outside world a little overwhelming?
I think this is all normal and a majority of the extremely vulnerable will be experiencing this. I wanted to assure any one concerned that it is OK to make decisions that make you feel safe. So if that means staying Indoors longer it is OK to do so. We need to be kind to ourselves and do the things that make us feel safe at the moment,
I hope you are all getting on well otherwise.
All the best,
Michelle
Hi Michelle,
I guess as you’re still in cyclosporin you must have been shielding fully due to its effect on your immune system? I’ve been out and about as necessary during the last few months but have been very cautious when I’ve been out.
I went into my office on a construction site on Monday for the first time again and it was a weird feeling. I actually had an email today asking me how I feel about returning to work and to be honest I’m not sure how I feel about it. My employer has made a lot of modifications to the offices which is to their credit, but part of that is building some plastic screens around some of the desks to allow people to sit in their normal desks, but I think I’d find working in one of those very strange. It would feel like an oxygen tent around me.
For the past few months I’ve been able to do my job efficiently from home, and the expanded use of things like Zoom and Microsoft Teams has enabled a much more flexible way of working. With some of my contractors starting work on site shortly I can’t hold out forever and am thinking about going back a couple of days a week to keep an eye on my contractors, but still work from home the rest of the week to continue the work that I don’t need to be on site for.
It’s a strange situation to be in and I’m keen to hear whether anyone is in a similar situation and how they feel about it.
Steve
Hello Steve
Good to hear from you.
Yes I would be interested in others experiences too.
I have been shielding since the start of March. My team actually advised the week before to stay in more.
I have to say having a dog and living ruraly I felt safe walking him still and got my respite from my four walls at the times my dog needed to go out. The idea of shops and crowded places has never sat well with me and probably less so now.
Although I have utelised online shopping very well and the zoom and teams virtual advancements have made social contact the a better experience for me. Which I'm grateful for. In fact I probably done more virtually than I did before shielding.
I think the potential for this way of life practically is do able for a lot longer. Not neccesarily emptionaly or socialy. As humans we need contact.
As you say though the platforms make work so accessible. I dont work because of my treatment and long term effects but do create art and fundraise so relatively busy and is all on the inter web. Good old inter web.
Even as far as clinic appointments being managed virtually unless needs must ofcourse. My experience of face to face hospital appointments was reassuring. In fact I felt very safe had no concerns.
Good luck getting back into the rythm of the working environmemt. Glad you team have been considerate and supportive.
Keep safe and well,
Michelle
Lockdown 3.0!
After last nights announcement by the Prime Minister I expect there is some anxiety again amongst blood cancer patients, particularly due to the rapid increase in infection rates and cases. The NHS capacity is under increasing pressure but from what I understand from a friend who is a Haematology consultant, treatments and transplants for blood cancer patients are currently still proceeding. I hope that's the case for all of you out there.
I know last year was a stressful one for everybody, not least us blood cancer patients, but hopefully with the rollout of the second vaccine there is some hope and potentially light at the end of the tunnel. Blood cancer patients sit within some of the higher priority groups for the vaccine and when the vaccination programme ramps up to full speed we are hopefully only weeks away from getting the first dose of the vaccines.
For those that might be interested or concerned, there is a Facebook Live 'Ask The Experts' event tomorrow (Wednesday 6th January) at 17.30-18.30 being run jointly by Anthony Nolan and Blood Cancer UK to discuss the vaccines. The event is aimed to answer questions you may have about the vaccine in the context of blood cancer patients. The following link should take you to the event page.
https://www.facebook.com/events/156115189182560/
As always, the Anthony Nolan team and me and the other online community champions are here to support you in any way we can. Please don't feel alone and don't be afraid to reach out to us. The patient community is incredibly supportive and we all understand what we're going through. Please share your concerns and lets help each other get through this.
Take care everybody and stay safe and healthy.
Steve
Hello Steve,
Thank you for this reassurance and the link. I think that will be incredibly helpful for patients.
I, for the most part didn't struggle with the shielding and lockdowns with living alone with my dog i felt ok. Isolation, as like every other blood cancer/blood disorder patient it is not a new concept to isolate or shield. However now I'm certainly feeling a bigger strain on my mental health.
I already have prodound difficulties with mental health and I'm sure like others out there the constant changes to services is hard to bare at the moment.
But as you say Steve, there is very minimal disruption to cancer services and I also know that my team are functioning as normal. I'm 2 years post SCT yesterday which means I can 1. Keep things like blood tests local and 2. Have telephone or virtual contact for the most part. I'm aware this won't be the case for many especially those prepearing for conditioning. Meaning there will be some of you out there experiencing uncertanty, higher anxiety, frustration, disappointment.....
We are all here to support you and each other. Reach out any time, ask questions or just to have a chat.
Anthony Nolan staff are always on the other end of the phone too to reasure or ease any anxieities.
You can also see the Anthony Nolan Emotional Support Telephone service on their web page https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
Best wishes,
Michelle
(Online community champion)