I have Follicular Lymphoma - before the first lockdown I asked my Consultant if I needed to shield given it was 11 years since my CVP-R treatment and I am now on the watch and wait regime. (I’m 64 and quite active/fit - running regularly and not over-weight) His view was that my immune system should be back to normal, that I as in a stable remission and I probably didn’t need to shield. So I didn’t and remain very happy with his advice. I have been very careful using masks, washing and avoiding crowds and public transport etc… I did actually receive a shielding letter (in fact I got 3 in total) but held to the Consultant’s view. I was wondering if there are others in similar circumstances, how they handled lockdown and what advice they were given.
Hi @AndyS, a warm welcome to our forum an interesting question, I am not medically trained or in a similar situation although I am also on watch and wait.
Personally I did not happen to be seeing my medical team in March/April and just decided as I was classified extremely/very vulnerable by the government I followed their guidance and also took advantage of priority on line shopping slots and the local support I was offered but did not take up.
Since I have been guided by my medical teams advice and Blood Cancer UK’s guidance.
I have basically shielded since March and just gone out for a morning walk (avoiding people and having masks.) since July. I have done a pilates dvd every morning and I have never been bored for a second.
I am retired and I have got used to Zoom and Skype meetings, however I really miss social interaction and touch.
This is purely my view though, there is no right or wrong.
I am sure there will be different views out there and I await them.
Hi @AndyS and welcome to the group. I have follicular lymphoma to, 4 years on watch and wait so not as long as you! It’s a tough one isn’t it. They always say follow advice from your team. I assume you have a good relationship and trust your consultant? It will be interesting to hear if others have experienced the same. My consultant advised on following the guidance but I do have low grade activity in the abdomen. Each case is different isn’t it.
Hi @AndyS, I was diagnosed with Follicular lymphoma and received Rituximab and Bendamustine in 2015. I have been shielding since March and will continue until a vaccine can be found. Along with many others, I’ve joined classes via Zoom and kept in touch with friends online. I know I will find it very frightening to use public transport and go into shops again but I’ll deal with that when it happens. One of my concerns is that the vaccine may not work very well with people who have poor immune systems. I’m sure I’m not alone in this so we wait and see. Look after yourself and take care.
Hi @AndyS. I’m with you on public transport. I’m not sure I’ll feel comfortable travelling on it for a while yet! How have you been?
Hi @Strad, @AndyS, and @Nichola75 I have also been shielding since March but did use buses, outside the rush hour, walking a back way into the town, and actually found I felt safer than I thought I would. I sat in a less popular seat near the middle of the back of the bus.
I wore my Blood Cancer UK mask and badge and everyone was very respectful of others space and masked up.
I also found the hospital a very safe, caring place. I had my temperature taken twice, found hand sanitiser and was also given a disposable mask in case my one felt too hot in the hospital. Everyone was lovely.
I was fascinated at all the different masks out there in the world.
Stay safe everyone.
Hi Nichola. I’ve been fine throughout if not getting a little fed up with limited social contact - I have been getting out but not in crowds etc. I’m a bit nervous about the effected of lockdown lifting and what that might do to infection rates but am optimistic for the New Year and the prospects of a vaccination. Stay safe.
I could quite easily build a collection of masks @Erica. Just too many to choose from!
Let’s all hope for a better new year. You stay safe too!
Hi @AndyS
It’s so understandable to have mixed feelings about the new year, how have you been getting on? it’s sounds like things have been especially tough for you, particularly like you say, with the limited social contact
Hi @AndyS, I think I echo your mixed feelings, I also think it will be quite a while for the vaccination programme to be effective, it is a massive logistical undertaking worldwide.
I think I have Covid fatigue, it just seems to have been a long while since last March.
In a weird way I think I am resigned to my isolated routine.
However I am optimistic for 2021, especially after this 2020.
We will be supporting each other with our thoughts and feelings on this forum during Covid times and beyond.
Take care and stay safe.
Hi @AndyS. Though if you when I saw this session on ‘Ask the Experts - COVID-19 Vaccines’ Have you registered?
Hi Erica, It’s been a while since I posted. I had a telephone appointment last week with my consultant and I asked if people with NHL are making any antibodies following 2 doses of vaccine. He said they just don’t know.
I had Bendamustine and Rituximab 5 years ago and am in remission nevertheless his advice is to keep wearing a mask and keep social distancing. People with blood cancer are being admitted to hospital with Covid even though they have had 2 doses of vaccine.
I see that some people on this site have had antibody tests privately and I wondered whether anyone has ever had a positive result. I expect we are all asking the same questions at our appointments.
Hi @Strad it’s interesting to hear what your consultant said and I think he was probably very truthful when he said they didn’t know about antibody production, and to continue to be cautious.
No, I haven’t taken an antibody test, it will be interesting to hear other’s experiences.
Look after yourself and keep posting.