Husband - secondary brain cancer

Hi ManthaP welcome to  the forum and i have one piece of advice for you "cut yourself some slack" you are not the nurse in this situation but the wife and that makes it very very different for you. This is not something that you deal with at your work then leave that behind, this is your life right now and that's why its different. You have nothing to feel guilty about and you are allowed to have all those feelings as most of us would.

Hindsight as you know can be a wonderful thing but none of us know whats in front of us unfortunately. 

I dont know a lot about the whole brain radiotherapy but f you wanted to give the Macmillan Line a  call on 08088080000 they may be able to tell you more about that.

Keep that Nurse hat off and the wife hat on and don't feel the need to explain to people what it all means because even you don't know that and that's ok.

Sending some hugs your way for  now. xxx   

Hi I know what you mean but it's so hard to do. I am having some support from our counselling service at work so I'm hopeful that this will help me with my feelings. Today has been a good day. Thanks for the support xoxo 

Hi ManthaP,

I just wanted to say hello as I am a nurse too and my partner was found to have secondary brain tumour at the end of 2020.

The whole being a nurse thing is a nightmare really. I also feel guilt - I’m a nurse I should have stopped this happening, spotted it sooner etc...In reality my partner wants me to be his partner not his nurse (won’t even let me check his blood sugars!). Also, I have knowledge that he doesn’t and my knowledge about what to expect with his diagnosis is out of date. This is really difficult. 

I hope the counselling is helpful and you are doing ok 

x

Hi. I know exactly what you mean about being a partner and not a nurse. But sometimes he also wants me to be an advocate for him and use my nursing skills to make sure he is ok. At the moment it's his steroids that are causing us difficulties. I want him to increase them as I think the symptoms of increased pressure are back but he won't. He said that they consultant said he needed to come off them but what I heard was "try" and wean of them. Well we have tried abs it didn't work.

I'm scared that I won't be able to do this because a bit of knowledge is a dangerous thing and I know what to expect. His mum died in the mac unit in december and we visited every day for the last week so he has said he doesn't want to be like her getting weaker and weaker. It is one of the hardest things to go through and I'm not sure I can do it.

Xoxo

Hi, that does sound difficult. I think we have had more problems with steroids than anything else. My partner came out of hospital on NYE on reducing steroid dose. He seemed fine but steroids were keeping him awake and he was really restless so asked if he could come right off them.  2 weeks later he had brain tumour symptoms that terrified us both. So back on steroids which he is still on but due to finish in next couple of days as he has had stereotactic radio surgery and will be starting immunotherapy. We are e we orried about stopping steroids now - but he has had all the steroid symptoms- weight gain, ferocious appetite, muscle loss & weakness - and he is looking forward to getting rid of his steroid belly! Do you have a specialist Macmillan nurse or someone coordinating your husbands care following radiotherapy? The consultant s seems to wave vague advice around and you need someone who can take responsibility for following up how he is doing. fi They should be making decisions about steroids and that would take some pressure off you. It is too difficult to be the nurse as well as partner - someone needs to be looking after you a bit too

I understand what you mean about a little knowledge being dangerous. I was ready to set up hospital bed in lounge etc when he came home- but specialist lung cancer nurses said there are really new treatments that extend some people’s life expectancy beyond the terrible prognosis that I knew about. So I think someone has already said -  whilst I am aware things could deteriorate rapidly, they also might not and I try to take a day at a time.

 I hope you can get some more support for you. Local to us we have Maggies centre, community Macmillan nurses, and specialist hospital based Macmillan team. I know we are lucky - but maybe the Macmillan helpline can identify some helpful local support for you. When we were struggling- I phoned Macmillan team daily. It is scary but you will be stronger than you think xxxx

Hi I know what you mean about the side effects he has put on weight that is now affecting his hiatus hernia and his breathing. It's just so difficult to figure out what is causing what. Our argument yesterday was because he wants to get on the shed roof to fix the leak!!! I have talked, pleaded, shouted, cried but none of it works. So all I can do is watch him and hope nothing happens.

He speaks to his consultant in 2 weeks but he is already saying he is having no more treatment. He has been on immunotherapy for he last year and he feels because it didn't stop the spread to his brain there's no point.

I know it's important to focus on him but it's all so stressful on me. Everyone looks to me as a nurse to have all on the answers and I don't.

Sending you positive thoughts. Xoxo