Dealing with cancer treatment all by myself

What a dreadful worrying time for you. 
mine is no way on par with yours but I live with my husband who works in the largest food distribution depot in the county, my daughter who works 3 days a week and My 3yr granddaughter.  
After discussions with the chemo nurses during a treatment day they advised me that we all should be shielding to protect me. My husband has taken holiday ( don’t know where we go from there) and luckily my daughter managed to work from home and my granddaughter nursery closed and her dad agreed that she stays here and not visit for a while. 
If you stayed with an adult child as awful as it would be would you be able to self isolate in a bedroom and be brought food up, use the bathroom first as they suggest in the vulnerable letter. I realise how awful it would be but that’s what we are planning if my husband has to return to work before my 12 wk shielding is over. 
I hope you get to a solution soon 

good luck Kim 

Hi SR8,

I know on your previous post you and your family didn't want your Hubby to go into a nursing Home whilst you have your treatment but, does your hubby have a Specialist Nurse from the Motor Neurone Team or one from the Dementia Team?  Or you could speak to your GP about it.  If so, they could possibly arrange for him to go into a Hospice, don't be alarmed at this suggestion, its not only end of life they care for they also take people for other reasons and your situation is very urgent and you need to feel he is being cared for without you being at risk from all the people coming to the house to care for him, he would receive excellent care I'm sure.  I worked in a Hospice and believe me the care is excellent and they would have an understanding of caring for someone with MND. 

Other than the above I would think you moving in with one of your family is a safer option than staying at home.  It sounds as if it would it would be less people around you.  

Thinking of you. 

I had spoken to the Clinical Nurse Specialist at our local Marie Curie Hospice who used to visit my husband on a monthly basis as he is receiving palliative care but due to the coronavirus now she phones and talks to me instead of making a home visit.  The last time I spoke to her she said they are not taking anyone in just now because of the coronavirus.  Normally the Hospice is for people who are  in the process of dying,  or they go there for respite for the carers or for pain management (like my husband did last year).  They go there on a Monday and are sent home on Friday.  It is not a long term facility. My husband was happy when he was in there for pain management and said he wouldn't mind going there again if I needed a rest.

I am going talk to the Oncologist if I am able to; I will email her and see if I get a reply.  The GP wasn't very helpful and suggested I try to stay away when the carers or nurses are attending to my hubby but was okay with me going into his room to see to things once the carers had gone.  The way I see it, if my hubby caught an infection from the nurses/carers (they haven't been screened for the virus) that is a danger to me once I start the chemo.

Thanks for your suggestion/s peterawake

Hi,

Does the Clinical Nurse Specialist know about your diagnosis and treatment plan?  If not it would be worth updating her, you are going to need some support.  I know at the Hospice where I worked we took people for longer in exceptional cases which yours is.  

Your GP's response wasn't very helpful or a safe suggestion.  Yes, good idea to contact your Oncologist he might come up with a suggestion of how to proceed and he has the authority to over ride some things, someone needs to be taking on board that you need additional support as you've got so much deal with including psychologically. I know I was an absolute wreck, I honestly thought I was on the verge of a breakdown at times I was so frightened of getting a cancer diagnosis, I'm pleased to say I got through it but it was hard and still is at times and that was without Chemo.

Take care. 

Please keep us updated. 

Peterawake, I will talk to the Clinical Nurse Specialist at the Marie Curie Hospice again tomorrow.  Worst comes to the worst, he will have to stay at home and have the continuing care he is receiving at the moment and I will have to move out to stay with one of my kids (they are very supportive and I get on extremely well with all of them) but they wouldn't be able to shield as they have young kids and my son-in-law was saying if the lockdown is reduced, he would have to go into the office.  I don't know what the implications of that would be for me.  I wonder if the Beatson hospital would agree to keep me in the hospital though that would mean that I would not see ANY of my kids for the duration of the treatment, not even from behind the window.

Hi, 

If you do go to your family, if it becomes your only option, at least its easier to control the environment and masks could be worn, I know you say they have young children but I do think its safer than you being at home, if your son-in-law goes back to work theirs the risk again but if Marie Curie wont take hubby and the Hospital won't keep you it would be your only option.  

Keep us posted and hope everything works out as well as it can in the difficult circumstances. 

Best Wishes. 

Thank you kind people for replying to my message.  

The Hospice were going to admit my hubby for a couple of weeks then we would have had to move him, so in the end we decided one move would be better than two.  Managed to find him a temporary placement in a Nursing Home, for the duration of my treatment - was the only option really.  My husband moved into the NH on Thursday and I started my chemo on Friday.  Missing him terribly as we have been together for 43 years and it is not easy knowing he is confused and in a strange place.

Feeling pretty rough today - noticed a difference today since the steroids were stopped last night.  After the oomph of the steroids, now I am feeling down.  I think the side effects of the chemo are beginning to kick in.  Not nice being on my own but I just have to ride it out.

Hi SR8,

I was wondering how things were with you and Hubby.  I can imagine the worry regarding your Hubby being moved from home to the NH, particularly in light of him being confused, its difficult for both of you.  Hopefully he will settle and you will be back together again post your Chemo.  Its a lot to cope with and I feel for you.  I didn't have Chemo so I can't advise on side effects etc.  At least this way you are not at such risk as you would have been with all the carers coming in.

Take care and keep posting to update us.

Hi Peterawake.  My husband is missing me and keeps asking the nursing home staff where I am and whenever I call to speak to him, he keeps telling me to take him to wherever I am.  I too am missing him terribly - missing the companionship even though it wasn't possible having a conversation with him but we talked or I should say he talked and I listened.  Hate being lonely. 

Kids FaceTime daily and the  2 who live within 5 minutes walking distance, bring their kids round and stay in the back garden at least 4 metres or so away and I sometimes stand in the kitchen door or in the dining room overlooking the back garden and talk to them through the window slightly open (barely and inch or two).  The other 2 kids and their families live a 45 mins and one and a half hours drive away respectively, so can only FaceTime with them (really miss being able to see them) Friends phone regularly other wise the day seems awfully long.  It would have been so much easier if the coronavirus wasn't here.