Hello all,
We thought it would be good to have a space for people who have had their treatment delayed or cancelled due to Covid-19. If this is something you have experienced please feel free to share below and as always, please feel free to give us a call on 0808 2080 888 if there’s anything we can do to support you.
Has anyone experienced this? How are you feeling at the moment?
For the first time treatment was mentioned in a consultation in clinic and followed up by phone consultation, mentioned again. I was told that as I could wait it would be better to wait for COVID to improve and a vaccination to be given. Technically that is a delay. Whilst appreciating the circumstances it does make me anxious that, on top of shielding for however long it lasts, I will then be expected to continue in restrained circumstances for even longer when/if treatment is started. Without COVID I would already be 3 months in. My next consultation is by phone so have yet to have a face to face discussion about what is entailed with the treatment, side effects etc or the pre treatment tests so the delay is naturally going to be extended. With the knowledge that the vaccine second dose is only going to be given around May, if on target, I am looking at a much longer period of restriction. Whilst totally understanding the cause of the delay, it restricts the opportunities to really engage with a meaningful future at the moment.
I had 3 rounds of FCR. I went to hospital and had the Rituximab Of round 4 on 16th March, the next day I was just sorting the chemo tablets into my box when my consultant called and told me not to take them and my treatment was being stopped.
Luckily a scan later showed the treatment I had had was enough to put me into remission.
Actually I have just remembered that my GP believes my skin cancer has returned on my head, including on it’s initial site which I had an operation and skin graft on in 2016.
My GP has done all the treatments he can without success and referred me back to my dermatologist in early 2020. Then lockdown 1.
I had a phone consultation and course of treatment prescribed for me to administer last May. This has not helped and the area is larger than before.
Then in August I received a follow up appointment for the beginning of May 2021.
I rang the department at the hospital to tell them my appointment was booked for the Bank Holiday Monday, so they said ‘oh, dear we have booked all that day, thanks for telling us’. The appointment was rebooked for the Tuesday and I asked if I could be put done for a last minute cancellation.
I know this cancer is unlikely to kill me off but it will mean a bigger operation and I haven’t got much head or hair left!!!
Oh @SP7, to actually start sorting out your chemo tablets and then to get that call from your consultant to say your treatment was being stopped, I cannot image what thoughts and fears went through your mind.
I am so glad you were able to have a scan later to show your existing treatment had put you into remission.
Gosh @Lababe, these actions by medical people really do play with your thoughts, emotions and practicalities don’t they.
Also as you say it restricts and delays your opportunity to re-engage with the world and don’t we all want that, if has been a long old slog.
However we will be here and you can always speak to someone by contacting the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Take care and stay say, that’s the main thing.
I was due to start another chemo treatment last year March, but because of Covid, I’m still haven’t. I do understand that it isn’t safe to keep going to hospital for weekly blood tests, but at the same time frustrated that things aren’t on the move. I know that having a chronic leukemia means it will always be there, but it would be wonderful to be on a watch and wait category, more so to feel “normal” again.
I haven’t had anything delayed but the quality of my appointments is definitely poorer now that they are by phone. For many months I didn’t even have a blood test. I’m now having four weekly Zometa and they’ve done ok with that over the last six months, no disruption.
Every time I’m at the hospital for my monthly check up, I raise the issue but my consultant isn’t going to do anything before the pandemic is passed… which I don’t see happening anytime soon even with the vaccine, so yes, frustrated. I don’t what might happen if my blood count goes to zero, maybe then the treatment outweighs the weekly hospital appointment risk?
You must be very concerned @MoMo, but I suppose it depends if you have confidence in your consultant.
I have heard others in similar situations.
I know consultants like to keep patients on watch and wait (active monitoring) for as long as possible. I have been on it for 17 years and my blood tests fluctuate.
You are at least having monthly check ups so any changes in you will be picked up on.
Perhaps keep asking the question as the situation with Covid vaccinations and restrictions is ever changing.
Please keep updating us.
Take care and stay safe.
Had a telephone consultation today. My bloods went missing over the new year so no count and, once again, because of COVID a meaningful discussion cannot be held. Having a chronic condition I can afford medically to wait but my condition has progressed through the last 10 months and so a conversation about treatment would, in normal circumstances, have been held. Mentally, this is very difficult to come to terms with. COVID continues to monopolise consultations and your life. The bigger picture is not under discussion but on an individual level this is extremely challenging. I am in this position because I have a blood cancer, shielding for a considerable length of time, but I cannot address the condition because of COVID.
Oh, @Lababe I think a lot of us are having these feelings and personally I think as Covid fatigue gets worse, perhaps these feelings get worse, sort of mixed in with the hope of the vaccination programme being effective.
With my CLL I have had my routine blood tests and I have had copies of the results and I know when to raise a warning flag.
My thoughts and feelings are about my skin cancer on my head which has returned and my appointment is for May.
So it is lots of confused thoughts and feelings going round and round.
The main thing is that we take care and stay safe.
Please keep letting us know how you are.
I had my Stem Cells Harvested a couple of weeks ago, but i have now been told I will have to wait for them to be put back again, which I think is fair enough, with the COVID outbreak as bad as It is at the moment the safest thing is to do is to wait.
I fully support my consultants decision not to go ahead with the implant of the Stem Cells, they are in a no win situation and it cannot be very nice for them
Hi @andymeer it sound as if you have found us at just the right time.
We are here to support each other on this forum and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
It must be so difficult being mid treatment during Covid times and whilst you can see the logic of your consultants decision, it would leave me with lots of thoughts, feelings and practicalities.
Have you got support and how are you doing?