There's a really helpful link for Coronavirus advice posted in another discussion:
bloodwise.org.uk/.../coronavirus-and-blood-cancer Thankyou!
I've just joined this Community as any suggestions from others on 'watch and wait' and the current advice for Covid-19 would be great to hear/share :-)
Diagnosed with non-Hodgkin Lymphoma Waldenström’s macroglobulinaemia (WM) six years ago I've been dealing really well with 'watch and wait', until this past week. We (my husband and I, that is) decided in 2014 not to tell anyone about my diagnosis - but it now places me (and him) in the 'vulnerable' or 'at risk' category. We're both 66, but generally pretty fit and active, so don't really 'feel' our age puts us 'at risk'!
The way I've dealt with it up to now is to put it completely out of my mind except when I have blood tests and consultant appointments . . . These past couple of days I keep thinking about it, so maybe we should be more open with family and friends about my diagnosis? I really don't want people to feel they need to ask 'are you OK?' though, and not very sure about how to have the conversation anyway . . . is anyone else having a similar dilemma?
Hi to our little corner of the Community and good to see that you found the Bloodwise link helpful. I did see your profile come up and was looking for you to set up a post - well done.
I do understand the challenges you are facing and knowing what best to do and say.
Some blood cancers are now beening seen as chronic illness like diabetes - treatable but incurable. Indeed, when I was diagnosed back in 1999 (see my profile) I was told "Treatable but Incurable and I would never see remission from the condition"..... but I must add that I have now been in remission since Sep 2016. I was basically on W&W for 14 years before the big treatment guns had to be used.
You will need to control the people you come in contact with and honesty my well be a way forward. Why live with the stress of not telling folks and making up reasons why you need to keep clear when this can easily be controlled by telling folks the truth...... we were completely open as we had enough to deal with and though the years of treatment it paid off as we need a lot of help to get through the treatment.
Remember, see this as a chronic illness that you have been successfully dealing with for years and answer any questions when you are asked.
As for getting though this time - follow the advise in the link. You will see that I have had two Stem Cell Transplant resulting in months of having little or no immune system so a simple cold could have been just as dangerous as this new virus..... but our family and friends around us understood and were great and we all understood the limits as to what we could or could not do. as we did our best Avoiding Infections
Keep posting as you have found a say place to get support from people who do understand.
