Just not sure what we can and can't do

[kitchengardener2]

Can someone clarify just what we can do as 'vulnerable people'. I am watch and wait with my CLL and my husband is healthy apart from blood pressure. I am 67 and he is 68. We have been told by a health worker (not connected to my treatment) that we should not be taking our daily walk on the almost deserted cliff tops. My husband is doing our shopping, supermarket once each week and then very quiet local shops. Can someone please clarify the rules for us. So scared that we may be putting ourselves and others at risk just by going out.

[Hidden]

go out as little as possible-and suit up as well as you can if you have to go out

[kitchengardener2 in reply to Hidden]

Trousers, thick jacket with hood and woolly hat and thick gloves, scarf round my face. Use antibacterial cleaner when we get back in car for our five minute journey home. Through wash when we get home.

[Hidden in reply to kitchengardener2]

are you talking about your walk?

[cllady01 Former Volunteer in reply to Hidden]

She in UK, not US, so has different rules....

[Hidden in reply to kitchengardener2]

Yesterday on the CLL Society Town Meeting they said after you go out to shop or to the pharmacy, or anywhere else where you are exposed, take off all your clothes and put them in the wash, then go take a full shower.

[devonrr]

I’ve read that there are two types of vulnerable. Those who are acutely vulnerable and have received a letter from NHS (900k) and those at risk who have not had a letter yet (600k), possibly this week.

Those in the at risk category have to be very very careful but have freedom to exercise I’m led to believe.

The government does not want people at the supermarkets each week. Plan. I now have no need of the supermarket for 4 weeks! Just got a milkman who delivers extras and small independents are delivering veg boxes etc.

But I need exercise and do walk. I walk from the house and am fortunate to be next to walking trails and the beach. Although busy last weekend the police has cracked down on those who use their cars to get to my area for exercise. I only walk where I know there is enough space to avoid people and people are being good.

This would be different in a city environment with many people and surfaces you might encounter.

I do not wash all my clothes on return as my consultant advised gloves must go into a very hot wash. I do not touch surfaces, like gates when outside and wash my hands thoroughly after exercise.

I need my daily walk for mental health. I believe I can do that in a safe place. Life’s activities at the moment are a risk you personally have to consider.

Me I’m post FCR 4 years and at consultation last week was told totally normal bloods but I do have CLL.

Take care.

[spiller in reply to devonrr]

Hi!

My husband was told by his haematologist that he had the same antibodies as someone without CLL.... is that similar to what you are saying....”totally normal bloods”

His WBC is about 11 and has been for 5 years..... very lucky we know. We have not had a letter yet but haematologist did say we need to isolate for 12 weeks. I /husband go for a dog walk with 1 child each day and don’t touch anything. ( he, like you, needs his exercise for his mental health)

I actually also contacted my GP who looked at his notes and said that there was nothing next to his notes about him getting a letter.

She was very concerned as she believes he should get one so she is writing to haematologist for clarification. Very confusing.

Spiller

[devonrr in reply to spiller]

Yes. So confusing but letter or not all CLLers are at risk and must be so careful.

Seems the letter business and those who fit was introduced in haste and not thought out. But!!!!

Your walks are your choice. Consider the risks.

Take care

[holly2 in reply to devonrr]

Very sensible reply which I agree with wholeheartedly! I am in remission but do not have normal blood counts with my lymphocytes at 0.8 and WBC 3.3. But at least my neutrophils are now 2.2 which is great. I had FCR in 2017 and my marrow is underperforming as a result.

I am still dog walking for both our sanities and I love my exercise. I live alone so am lucky not to have someone else coming in risking my health. Currently I have 3 more supermarket deliveries booked for the 3 weeks ahead - hoping that will continue though …! All the best, Holly.

[kitchengardener2 in reply to holly2]

Thank you Holly, just going now for a little walk. Stay safe

[Big_Dee]

Hello kitchengardener2

I do the same thing, only my walk is not at cliff. Very doubtful you will meet anyone on your walks with coronavirus, probably more than they feel up to. Blessings.

[kitchengardener2 in reply to Big_Dee]

Stay safe and warm x