Coronavirus...advice for a family member

[LewLew19]

Hello all, I dunno about you but I feel like we’ve all had enough on our plate without a global pandemic! Strength to you all during this horrible time.

So my predicament... my mum is doing well on immunotherapy, she had her treatment last Monday and next one not for 6 weeks. She’s a little down and seeing me (daughter) and my young son really lifts her. With the Coronavirus advice, she’s staying at home and limiting her contact as much as possible, no shops, minimal contact.

I’m also limiting contact and my son is not in nursery anymore. I work from home. I figure by lessening my contact I in turn lessen the risk to her.

My dad is really keen for us to keep seeing her, despite the rather stark advice. So we’re thinking of ways to lessen the risk... I’ve been putting my son in his pram and going in their garden via side gate... we sit a distance apart. I don’t enter the house and my son does not have contact nor is he let out of his pram. As long as the weather holds this seemed to work ok. Tomorrow, we plan to meet and take their dog for a long walk, again no contact with my son everyone a distance apart and getting some fresh air.

Obviously our number one concern is keeping her safe, but we’re also trying to keep her mind and mental well-being. She’s already on antidepressants and so prone to negative thoughts.

Every time I look at the news I’m terrified that seeing her will cause her harm but I’m really trying to make it happen in a safe way. Obviously no one is 100%. If we all locked ourselves away then we wouldn’t get sick, but at what cost to our mental well-being.

Also, does immunotherapy weaken the immune system like chemo? The advice from government kept mentioning chemo and radiotherapy, but not immunotherapy. Obviously she’s high risk regardless, but I was just curious.

Thanks for your thoughts.

Xx

[Sisters1]

Hello Lew, I empathise with your predicament in these scary times. my sister had cancer a year ago, continues to cough up blood and they have not yet found the cause of this. in the interim I have been having to visit to take supplies etc and am terrified every time I go to see her. She had been going to the shops previously however I think reality has now hit now and she is not going out as much now. Also starting to struggle for breath and unclear if this is a symptom or her already frail condition. its like a scene out of a nightmare. All we can do is try our best and take care. it sounds as though you are doing all the right things, social distancing being a good one. I will try as much likewise.

take care.

[LewLew19 in reply to Sisters1]

Thanks so much for your kind words, all the best to you and your sister! Stay well x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Sisters1]

Dear Sisters1

We have sent you a private message.

The Roy Castle Support Team

[Shan_E]

It sounds as though you're doing a fantastic job in the circumstances. I have two thoughts (you've probably had them yourself, but here we go anyway). One, having a laugh is great for feeling positive, and babies and toddlers often do things that make us smile. Have your phone at hand through the day, video anything promising, choose one or two good ones at the end of the day and post them on Facebook or some other platform for her to smile at. Second, and connected with the first really, a lot of people (me, for example) use Facebook without really understanding how it works - maybe your mum is one of these? If you show her how to choose what she sees in her newsfeed it might be a good way for her to enjoy positive news of family and friends without being overwhelmed.

Do keep on seeing her - you're doing it in the safest way possible. Every time you make her (or anyone) smile it's a tiny victory over cancer, coronavirus and negative feelings.

[LewLew19 in reply to Shan_E]

Thanks so much for the words of advice and encouragement, what times were living in. I really hope we get to look back on all of this soon and see how we have learnt some lessons. Chatted to our neighbours, been more considerate. I know I’ll certainly enjoy normal things! X

[AnnW1]

My mother has terminal cancer and we are self isolating her and communicating on facebook video calls - not ideal but will have to do for now to keep her safe

[LewLew19 in reply to AnnW1]

All the best to you and your mum. Fingers crossed this doesn’t go on for too long x

[AnnW1 in reply to LewLew19]

And to you and yours. Stay safe!

[LewLew19]

Thanks for your advice. We’ve taken the decision not to see mum today. She’s not that ‘techy’ and isn’t on Facebook, in fact she really doesn’t like the whole concept! But she can video call and we will be doing that later. My husband will be delivering flowers and presents outside their house. I can’t bare to go as it would be upsetting for her if I knocked on window without seeing her. She understands. Let’s hope this all comes to some kind of resolution as soon as possible. I feel better to of made this decision, it’s not easy but the right thing to do. Thanks for your advice.

My house will be so clean and tidy over the next few weeks 😀😀

Xx

[Denzie]

You are doing a great job protecting her.

Check with her doctor to make sure but I’m thinking the immunotherapy doesn’t weaken the immune system the way chemo does. Chemo works because it attacks all fast growing cells including the cancer, bone marrow, hair, etc. immunotherapy works by telling your blood’s T-cells that the cancer is emitting an enzyme that lies about the cell being okay.

If she is having inflammation from the immunotherapy drug, the question I would ask the doctor is if the inflammation is opening her up to a secondary illness.

Edit to add: I would be most concerned about pneumonitis which is a common side effect of immunotherapy.

[LewLew19 in reply to Denzie]

Thanks so much Denzie as always your advice is so very much appreciated. You help many many people, you should be proud x

[Emkins]

Hello!!

I am in same predicament with my dear mum.

She had chemo last year, but just completed radiotherapy to her heat and head.

She’s feeling far worse than she ever has, but feeling more down not seeing me....

I don’t know what to do for the best really.

Xxx

[LewLew19 in reply to Emkins]

it’s so tough isn’t it. Take each day as it comes, we’re all adjusting to a new temporary normal. It will pass. Things will get better. It’s all a shock at the moment. All the best to you and your mum x

[LewLew19]

It’s so difficult to know what’s best. Life has really dealt us some rubbish cards with the diagnosis and now this. I guess we just have to learn our new temporary normal and hope it’s not for too long.

The sun is shining today. Lots of gardening and keeping busy.

Thanks for your advice and I really wish everyone well x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LewLew19

Your question is very valid and one I think many are asking on the impact on asking those at risk to self isolate and family to comply with social distancing.

Especially in addition to what your Mum and the family have gone through.

It is not easy at all to adhere to this, when it is a time we all need each other most, but by keeping to what has been advised, collectively we continue to nurture and support each other for the sake of protecting our loved ones.

There are been some lovely replies to your question and globally we are all truly together in the struggle for this in keeping our loved ones safe as much as we can. I have placed a link from Macmillan support of the guidelines of Covid-19 for those with cancer, as you appreciate this may change as the days/weeks go on. These guidelines are from a group of charities called -One Cancer Voice:

macmillan.org.uk/cancer-inf...

This link from Mind UK provides information on how to reduce the impact of your mental well being during Covid-19 restrictions:

mind.org.uk/information-sup...

They have an online chat and their helpline number is 0300 123 3393

Immunotherapy does not weaken the immune system in the way chemotherapy would, but good to be aware of any new symptoms, especially respiratory and have a medical review if required.

If you wish to discuss anything you can either email us at [e-mail] or you can call our helpline number on 0800 358 7200

All the very best to you all

The Roy Castle Support Team

[GoldenDoodle19]

Hi there

I’m in a similar boat to you. My mum has stage iv lung cancer. She’s having immunotherapy and chemotherapy although they’ve stopped the chemo after 4 cycles, I guess because of corona virus and she’s going in today just for keytruda (permbrolizumab). I’ve got anxiety about stopping chemo but just glad she’s carrying on with the other, in the circumstances. But we have the same issue as you with seeing her and with the kids seeing her. We went round a fortnight ago and sat at the opposite side of the living room. If was the first time she’d seen the kids in person for weeks and I’d only seen her once in the previous two weeks. Since then she’s been totally isolated with my dad and after Boris shut the pubs, he been isolated too (it’s been hard to get through to them both why dad can’t go out either!) I’m sorry she’s not able to see us but I keep dropping things at their door and sending pictures and we’ll start up the FaceTime calls more regularly from now on. It doesn’t feel enough but what else can we do? She’s very weak and is losing her hair but not in too much pain, only discomfort from her bowels not working properly. I’m hoping seeing her oncologist helps today as she thinks he’s the bees knees. Amazing people, carrying on through all of this. And by that I mean all of us! But especially doctors and nurses and support staff for the NHS at large. I’ve got nothing but admiration for them. I’m hugely anxious that my mum will die during the crisis and I won’t be able to say goodbye in person or give her a funeral. It’s keeping me Awake at night to be honest. Keep doing what you’ve been told to do and hopefully we’ll get good times with our mums ahead. Such a cruel double blow. My love to you and your family. You’re not alone. X

[LewLew19 in reply to GoldenDoodle19]

Thanks for your kind words of support. Sounds like we’re in similar situations. My dad also cannot go to the pub but he’s making beer at home now! Think he might start selling it soon he’s making quite a lot

Mum has been doing well on keytruda alone, she says it much easier to handle than chemo (despite some side effects) so maybe a break from it will give your mum a little respite from the tiredness and chemo related effects.

keytruda has shrunk her tumour considerably.

I really wouldn’t think about the what ifs. You’ll only send yourself crazy, you need to stay healthy too.

My mum is still gardening and when the street is empty very early she is taking the dog for a walk. It’s not advised but the way she sees it, it’s good for her mental state, exercise and she’s got to make the most of her life. I was worried like you at first and I just want to put her in a room and not let anything happen but now I’ve just tried to let go... it’s something we can’t control but we can lessen the risk. She’s got to get on after all and cancer makes it so important to live every moment.

Much love to you and your family during this horrible time. It’s so cruel and in no way do I underestimate the seriousness of the situation. I guess you have to make peace with it in your mind. I hope your mum feels better on the single keytruda for a while, it really can be an amazing treatment.

X