COVID-19 advice for post transplant patients

Hi Fanilow,

Is your husband already shielding within the house? (Ie, staying away from all occupants, separate bedroom, separate bathroom, washing utensils, towels, etc?). If so, there’s an argument to say adding two extra people into the house shouldn’t have that much of an impact to him, because he just continues with what he is already doing. However, if the act of your son and daughter-in-law coming back into the house would put him into shielding mode, that is a separate matter and one which your son should think through before putting his Dad in that situation. I have a similar situation at home. At the minute, I am not shielding within the house. This is because my wife, my 3 kids and I have not left the house for 2 weeks, so we’re pretty certain we don’t have the virus. However, if one of us goes out of the house, that puts me in a room on my own away from everyone for at least 11 weeks - that is something I’ve been desperately wanting to avoid, and I’m guessing your husband would feel the same.

Hope this helps

Greg

fanilow

Anyone having contact with the outside world resets the clock for everyone in the household.  That's a significant stress to put on you and your husband.

I think your son is being unreasonable.  Being in lockdown with others for months is not the same as staying with them and going about your own life.

We have adopted the same social distancing measures as the UK.  They are being enforced by the police and people are being fined for breaching them.

It sounds like your son hasn't really grasped what all of you being locked down together indefinitely would entail.  That he's dismissive of your feelings about it is a huge red flag which suggests that there could be considerable conflict if he and his wife were to come and live with you.

There are no easy options here, but you don't have to justify putting your husband's welfare before your son's wishes.  As a mature adult, he should respect that choice.

Hi Fanilow,

much as you’d like to see them I agree, this would need to totally ‘reset’ each and every time they came into any contact with your husband. I would have thought that, coming from Singapore they would have realised all this. From personal experience Singapore is really well regulated and organised and the systems they put in place speedily has helped prevent major problems. 
please be firm (I know it’s hard) and ask them to think things through; they would, I’m sure, never forgive themselves if anything happened as a result of them.

hugs xxx

Thanks everyone for your replies, your support means a lot.

When we agreed to this at the beginning of March we honestly didn't think that my husband would be in the high risk category but still vulnerable.

Government guidance says blood cancer at any stage of treatment. He is 6 years post SCT for AML and not on any treatment so we didn't think it applied. Also they said if SCT was within the last 6 months. How they came up with that figure I don't know, when I think back to how poorly my husband was for that first year and the restrictions on our life was far from normal.

I think our son has thrown a wobbly because he is scared of his own situation. He had job interviews lined up for his return to the UK but they have been cancelled as nowhere is hiring. His wife's car ompany is based in Spain and I don't think they are paying her at the moment. They had an apartment to move into in London but had to change that plan as they can no longer afford the rent so that's why they wanted to come home. It was always going to be difficult to come back here after the high powered professional life they have lived in Singapore with their own swimming pools, tennis courts and a maid. I did expect him to call us again yesterday but he didn't. We need to wait until he has cooled off so hopefully we can talk sensibly about it.

We are both feeling extremely sad at the moment especially my husband who is convincing himself that it will turn out like our eldest son. For those of you that don't know, when my husband was ill our narcissistic daughter in law decided they might catch something from the chemotherapy. As a result she stopped us seeing our son and grandsons and the entire family has been ghosted ever since. I don't think it will end like that as our youngest sons wife is not a problem but I can see what this is doing to my husband and we really don't need the stress at the moment.

Thank you all once again for listening.

It is ALL about the ‘long term’ greater good in all this and some short term pain will produce long term positive outcomes.

When I talked with my team a few weeks back I was told “Mike....... like any virus you are at risk..... but this one we just don’t know how a post SCT patient will react, you are in remission not cured, so we don’t want to ‘wake’ up some dormant cancer cells that your new immune system is successfully controlling - let’s be safe and not sorry”

((hugs))

Hi Fanilow,

I am really feeling for you, I can see how your previous experience would make you feel nervous. 
I think everyone is being put into difficult positions by these unprecedented times. The government’s advice is merely that: advice, I think everyone is going to have to make a judgement call around what is best for them in their unique situation.

Wishing you all the best with whatever you decide to do.

Greg

Hello,  I am in the same situation 6 years post SCT for AML. I understand the reason why we are clinically at risk is because the cancer affected the white blood cells and the immune system will be compromised if you get the virus, the cancer may take advantage and return, that is why they need us to stay at home.

Hope your son sees sense soon 

regards

jackie

Well I haven’t got any letters or texts and I have been verbally told I am vulnerable but not high risk from my immunology team. Looking at things logically I haven’t had any treatment for the ALL since the stem cell transplant in May 13 and any treatment after that was a bonus treatment for GVHD. EBV etc. I do my immunoglobulins at home to keep topped up, not that it would stop Covid-19. As for the ALL returning if the white blood cell was compromised I can’t see that being the case for me. I have lived with a compromised immune system since Sept 13 and it hasn’t returned and I have been told it wont.. Of course all the leukaemias are all so different so what is the case for one could be very different for another.

My wife is a nurse at the main regional hospital which makes things tricky at home. We are in separate bedrooms and bathrooms and try and keep 2 metres apart. But we still have dinner together and walk the dogs in the evening keeping our distance. It’s tricky but possible and she has a regime in place when she gets home to go straight for a shower. 

I did brave the supermarket yesterday fully masked and gloved, and I have to say our local Tesco Extra store have things well under control with social distancing in place, disinfected trolleys and good stock levels. Managed to restock my bleach supplies and may have slipped some wine in the trolley as well. 

That is the physical side of where I am.. mental well being is just as important. I am still working speaking to my clients but after today I won’t need to speak to them again for a few weeks. I have 20 litres of white emulsion so I shall be giving some of the rooms a fresh lick of paint. After that it all depends what I can source for jobs outside.. the fences could do with some new stain on them and the decking could be oiled.. (already jet washed). So plenty of things to keep me occupied for now. 

keep safe everyone.

Hi all! Always so much support, kindness and good information on here! Are chemo treatments still going ahead and are treatments sticking to original plans? My sct last August hasn't done the trick so it was to be imminent IVE chemo followed by car-t. Been told by CNS to manage my expectations and stay in. I'm taking that to be they'll hold fire. So I'm not thinking positive thoughts at the moment.

Stay safe, all

Lynda xx

Hi Lynda,

From what I can tell, it seems to be a case by case basis. I read on Myeloma UK last night that all SCTs are being put on hold for the time being, but they said chemo would depend on the circumstances and they didn’t specifically mention CAR-T. It seems to me that judgment calls are being made around what is the greatest risk to patients - being in hospital and exposed to COVID-19 or staying at home and having no treatment.

I am really feeling for you Lynda, I know that this will be a really unsettling time.

Greg