Hi,
I wanted to ask if anyone has received a letter stating they are at risk of Covid-19 while in remission?
My Cancer nurse told me I was (I finished 6 months of Chemo last June) but I haven't received a letter.
I just wondered if anyone can shed any light on this?
Hi Mbun, it is all very confusing but do have a look at the Macmillan Information at the top of the Community Home Page and this Government Information.
I received a phone call from my GP and one the following day from my Clinic Team days before the 'lockdown' was announced....... then two letters over the following two week period (Scottish Government).
Some letters are not getting through and it does depend on how up to date your online records are and who is triggering these letters.
But your team are the best people to know 'you' and tell you what to do.... rather than an algorithm looking through millions of records.
I am 4 1/2 years post my last treatments and I am in the 'Vulnerable - At Risk' group and have not been past the front of our garden for over 32 days.
Also check
Please visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.
If you are still not sure you call your cancer nurse.
((hugs)) from a safe distance.
Hi Mike, thank you for your reply. I just spoke to my Cancer nurse again and she has told me that yes I am at risk and that I need to be extremely careful. She told me I need to follow the Government guidelines very carefully. I'm just so confused as if I hadn't have asked I wouldn't know.
She said although my immune system may be ok at the moment, the effects of the Chemotherapy can cause it to change.
I'm off on sick leave from work and was hoping to be back soon, but this Virus is making it hard to do so. I work in a care home so not really ideal.
Many Thanks,
Mbun x
These are unprecedented times requiring unprecedented measures to be taken by the Government, NHS, employers and us.
Yes, chemotherapy stays in our body for much longer than you would think and weakens the immune system.
I am in remission (not cured) so my team don’t actually know what getting the virus would do to any cancer cells that are being controlled by at the moment by my immune systems and distracting my immune system to fight the virus could be the opening for the cancers to come back again.
Stay safe not sorry.
Hi Mike,
I'm in remission too, and as three lymph nodes were infected with Cancer they said to me if it comes back it will appear most likely in the Liver or Lungs. There's no guarantee I won't get cancer again.
Plus there's the issue that when you sign your signature to say Chemo can go ahead they warn you that Chemo can cause Cancer 20 years later in the body.
So does that mean I'm not cured because it was in my lymph nodes? I'm sorry to ask these questions but, I didn't get any information unless I asked my consultant and cancer team. I was surprised during my cancer that a stump that appeared after my first bout of Chemoradiation was Cancer, and nobody had told me, I found out about 2 months later.
Half my bowel, sigmoid and some of my rectum where cancer had grown was removed, so I know that cancer has gone.
However, the worry that Cancer will return is always a worry.
Many Thanks,
Mbun x
Hi again. now that is a very big question and not for me to answer as only your medical team can tell you....... but there is always the possibility of further cancers - I know people who have had 3 different types all unrelated to each other - luck of the roll of dice I suppose.
I was diagnosed in 1999 with a rare incurable but treatable type of Non Hodgkins Lymphoma and told I would never see remission - zoom forward to Sep 2016 I was told remission - result in my eyes.
But I am under no illusion that it can’t come back and indeed, due to the many many skin treatments (see my profile) I have had I am very high up the list for developing skin cancer so I am not friends with the sun and have to take great care.
But I don’t let any of these thoughts define who I am and what my future has in store for me.
Dec 2013 I was given 2 1/2 years unless my treatment worked....... I am now over 4 years past that alarm bell and doing great.
Live life in the moment - next week is next week don’t miss tomorrow x
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