About as clear as mud on Covid 19

I was in the same position as everyone else here so mailed my MacMillan nurse. Hopefully this helps others through:

From me:

Hi  xxx,

I am sorry to bother you during this busy time. I am currently in remission from follicular lymphoma and am trying to find out if it is safe for me to attend customer sites. I am a key worker so I would like to find out. I have been in remission now for nearly 3 years. The government advice in some web pages are advising that anyone with lymphoma, no matter the stage, should be working from home, whereas other pages say that folks in remission are low risk. I have contacted the MacMillan online team over the weekend but am still waiting for a reply. Possibly you might be able to help if I should be working from home or I am safe to go out.

Response:

Morning xxx ,

Unfortunately your Follicular Lymphoma even though in remission still puts you in the high risk category . Therefore you should definitely be self-isolating & working from home.

Take care

Macmillan Lymphoma Nurse Specialist
Further query:

Thanks,

Does this mean that my family should now self-isolate too for the foreseeable future? Interaction with them will be unavoidable as we live in quite a small flat.

Response:

No they don’t . Your immune system is compromised because of your Follicular.

My thoughts:

Government Advisory on Cancer is below and states that basically whatever stage you at with lymphona you must isolate and have others that live with you practice social distancing. For follicular this is at all stages. I am going to self isolate but practising self distancing will be hard for my wife as she uses public transport. We are currently considering our options. Hope this helps!

lymphoma-action.org.uk/lymphoma-action-statement-coronavirus-covid-19

Hi  and welcome to our corner of the Community.

As you see, for blood cancer patients - regardless of the stage and type is all very confusing and indeed challenging.

All you can do is do your best until the goal posts are moved again and I do expect them to be moved.

Be safe not sorry.

It say this

" It is likely there is a spectrum of risk. Those at the lower end include people who are in long term remission following treatment several years earlier and have no other health conditions."

So I am waiting for a letter telling me to self isolate.

Because I am in remission of sorts and have no other health conditions. 

Me I'm not waiting for a letter I am self isolating and have been for a couple of weeks

Really don't want to get this Covid-19 virus after all this time getting my Lymphoma to go to sleep

Checked on my records via systmonline and it clearly states

"High risk category for developing complications from COVID-19 infection
(Y228a)"

Not sure what that reference is in brackets

Be safe not sorry

I understand its difficult if you are still working but at least you can get 80% of your wages if your not self employed 

That's very helpful thanks craftyirish.

I was wondering the same thing...I'm 2 years in remission and finished immunotherapy 2 months ago.

your nurse's response is crystal clear.

best wishes

Tina

I agree re. self isolating.  I do wish there was something I could do as a nurse, but there don't seem to be any 'work at home' options and only medical doctors to do phone based advice. 

In the meantime, I'm happily stuck here trying to find yet another recipe for wild garlic.  My breath would kill flies at 40 paces...

Cecren

Well I haven’t received a letter yet, no post at all perhaps the postie is self-isolating?

Looks like we might have to go shopping because no available delivery slots.

Also, the orders I managed to place last week are shrinking as stuff becomes unavailable.

Doh put a hanky inside a scarf and wrap it round tight and put on gloves - this was me every time I went to hospital after my SCTs

Hi Steve, I have seen posts from others in a similar position to you on the various lymphoma action platforms, who have had the text or letter so certainly worth chasing, I understand from those who work in the NHS its all down to the searches and whether you have the right code on your records, I know my GP records were never changed post treatment so I never appeared on the annual flu jab list. Thee other thing I was going to do before this really escalated was get a full blood test to see what the levels were like and what shape my immune system is in.

Worth chasing up and maybe a visit to the vampire ;)

John  

I had heard part of the problem was that our care is fully consultant led, with limited GP input.  If the people trying to identify vulnerable individuals only extract data from GP databases, we'd not show up except by age, perhaps.    These databases aren't perfect.  Letters are probably going out to some people who have moved house, even some who have quit their earthly existance.

Trying to self notify is pretty hopeless because the supermarkets that said they could feed the nation can't adapt their websites or answer their phones.  I have heard of one call that got answered about 3am, but it seems extreme.  I think it takes an emergency to demonstrate the weakness of some coverage.  Well, we know now!

I have wonderful neighbours who have shopped for me, but I hate the thought of exposing them to the wild eyed hordes pillaging every supermarket in UK!  We thought the situation might be short term, but this is doubtful.  It does look as if resources are quite limited and things mightn't be functioning for a while.  These are early days...  I do hope the payments of benefits and other support is bit better since these were announced earlier.  It's an anxious time, but worse for those of us whose treatments are interrupted or delayed.  I can wait for fresh food.

Cecren