Hi Kuiper,

Welcome to Cancer Chat. I'm so sorry to read about your husband. I can only imagine how difficult this must be for you both. Please know we are here for support - do use this forum as a safe space whenever you'd like to, to write down your thoughts or worries. It's a very welcoming and understanding community of people.

I can certainly understand your wish to shut yourselves away. I'm sure people will naturally get involved and no doubt it will be because they care and want to offer support, so perhaps it is about balancing this support from others with your time with your husband.

Wishing you all the best - and I hope you find this forum helpful,

Ben
Cancer Chat Moderator

The Marie Curie Nurse came out yesterday, she was lovely. She checked and discussed my husbands pain relief, gave him some advice regarding them and he seemed ok. He did say to her that he still feels like it’s not real and he’s going to be ok. Then today he noticed some pains had worsened, new pains. I listened, acknowledged what he said and asked how he was going to treat them. He told me the type and dose of pain relief. Off he went and did just that. 

Ive suggested that he speaks to his Marie Curie nurse on Monday if he’s still concerned about the new pain. I think he will do this

I’m doing my best to keep things to some semblance of normality and be extra patient when he gets snappy or fed up

I feel useless and helpless

My husband wasn’t “right” this morning. He looked drawn. I was worried to be honest. 

He insisted I went to mum and dads with our daughters. I very reluctantly left. He’s now nicknamed us his minders. We never intended to make him feel that way

I do think perhaps we’ve been pandering to our own needs and maybe unwittingly overlooked his, which isn’t right or fair. We sensed he needed space and left him on his own.

As the days gone on he perked up a bit. He’s had two light meals which is better than normal. 

Maybe the break from us has done him good

Hes started being more able to talk about what’s happening to him and breaking the news to people who have called him

This week we have the dietician to see at the hospital and his Marie Curie nurse is coming the following day. 

I wish I didn’t feel so tired and had more energy but I’m putting one foot in front of the other and getting in with what needs to be done

Instead of seeing the Oncology nurse on Monday, he saw his consultant instead. He talked to my husband about the referral for palliative radiotherapy to help with his back pain

Yesterday he saw the consultant about the radiotherapy  He looked at my husbands scans and said they would start with his spine to relieve some of the pain. They think the tumours may be pressing on nerves in his spine. This results in his awful pain in his groin, down his leg and the lack of sensation on his upper leg skin. The consultant said he will deal with the radiotherapy one thing at a time  

we got home and an hour later the phone rang and it was the radiotherapy department saying they want to see him on Friday to “map”?and plan? 

So he will attend the cancer centre and see the radiotherapist there. They did say on the phone that it will be daily sessions for five days. He’s been warned about the side effects

 finally tired now. I hope sleep will come to me now