Lonely days

Hi T just wanted to let you know that yes, there are others out there who completely get where you are coming from and how you’re feeling. I’m so sorry your hubby is in so much pain bless him xxx mine has oesophageal cancer and finished treatment last Tuesday (5 weeks every day Monday to Friday, chemotherapy Wednesday and radiotherapy every day). He wasn’t too bad during treatment but literally from last Wednesday he’s had bad headaches and he’s now having trouble swallowing as everything is so sore. He’s absolutely exhausted, he also spends a lot of time in bed. He got up to spend a bit of time with the family earlier but had to give in and go back upstairs. It’s perfectly normal for you to feel the way you do, as you say, no one signs up for this. Your life has changed too, and it’s very hard seeing someone you love in pain and not being able to help. Give yourself a break, you are only human. You find you cope even though you think you can’t. What’s that saying “you only find out how strong you are when strength is the only option” You will find lots of support and advice on the forum from some lovely people so keep popping in. Sending you a big hug and love

Tishy

Dear Tishy,

You are so very kind to write me back and comment on the stressors which you also know so well. I have been thinking about your letter and well, just all the things that are going on. He had immunotherapy today which has made him feel "weird" and kinda wired at first but now tired and weary. This morning he was talking about wishing to die with all the endless pain he is in. It's become the new norm for me and us to have these almost casual conversations that are truly so heavy! It's always he and one dog upstairs and me and another downstairs. Sad and lonely. I am so tired now too- if I make it past 930 pm I feel daring and almost wild! Lol. Anyway, touching base. Does anyone else feel so tired in themselves after looking after someone?

Thanks so much,

T.

Hi Mama T 

I totally get what you are saying about the tiredness and then I also feel guilty for not coping when it’s “not me” that’s dealing with the side effects of treatment (although I know that we are sharing this horrible journey with our loved one). I sometimes feel so sad and angry that I’m not doing a better job of supporting my husband, he tells me I am doing all I can but for me I just want things back to before we knew. He has stage 4 NSCLC which is inoperable and although the plan was to have combined chemotherapy and immunotherapy once every three weeks things have not gone to plan because of side effects which has meant cancelling cycles. So since June he has only managed to have 3 treatments. He had a CT scan last week and has his video oncologist appointment next week, we just hope that there has been some positive effects despite only managing three cycles. I find the Macmillan Online community a great help when I need to let off steam or “cry” about things. As Tishy said everyone here has similar thoughts, fears and hopes. I hope things are a little better today. 

Grasan

Dear Grasan,

How kind of you to reply. I am new to this forum but finding it a great support. As in so many people in our lives have no idea what we are going through- or to what extent. My husband also has the non operable non small cell lung cancer. Has your husband's metastasized at all? One way I have coped is to make the spare room into my sanctuary. I have had it recarpeted and I've basically given it a make over. For months I was in the spare room- with the tiny bed thinking "Why am I in the crummiest room in the house when I'm doing everything"? So I moved into our daughter's room (who is at Uni) so basically not here anymore- talked to her about it and we all agreed. But it's made me very happy. I wish I could be in our room- with him at times but with the severe pain, it's not gonna happen. Not if I want any sleep that is. I think we do find reserves we never knew that we had. But I also find myself dreaming about what I may do (when it's all over) which makes me feel horrible in many ways and mercenary. BUT somehow I also feel it's necessary for my sanity. So that when and if he doesn't win this battle- that I can and WILL cope. I actually said that the other day as I have had to take care of things around the house now- gardener, electrician etc and when he asks I finally was candid and said just that...."If you don't win this battle, I will need to manage around here". I was proud of myself for saying this as he usually is kinda Peter Pan- as in he doesn't want to know things. No prognosis. I am off work now to look after him as up until a month ago I worked full time on a busy stroke rehab ward. 

Okay better scoot- as you know there are so many things to do- it's ensure time!

Take care,

T.