Just need to talk

Hi JenBob 

Wecome to our community, I hope you find it both informative and supportive.

Often people thing of being a carer as more like a nurse, I wonder if looking at Am I a carer might be helpful. A useful part of the label is that it comes with certain rights in the workplace and indeed where I used to work there is a staff network especially set up to help support carers. 

Things do sound quite difficult at home, is there something your husband enjoys that perhaps you could do together? 

Something I found very helpful was when I walked in to our local Maggies though other support options are available and we have a tool here in your area that can help find support options near you given your postcode. 

Please post on here whenever but remember the helpline is open from 8am to 8pm 7 days a week and I know I have cried at them in the past - 0808 808 0000.

<<hugs>>

Steve

Hi Jenny

I am in the same position so totally understand how you feel. My husband was diagnosed last year and his throat cancer just will not go. He’s had a tonsillectomy, chemo, radio, neck dissection and now on palliative immunotherapy. He can whisper and eat small amounts of food but mainly drinks smoothies. He did have a Peg for about 6 months too which was a lifesaver.  He’s been left with arm weakness and a constant cough. He generally gets up around lunch time and sits and watches the telly or sleeps. Some days he is able to come on a little walk.

I too end up sitting alone to eat and we don’t go out anymore apart from hospital appointments. It’s so hard on him as he used to love eating, drinking, socialising….It gets very frustrating for him when people don’t understand what he is saying and it’s actually exhausting for him to whisper for a length of time.

Hopefully the immunotherapy will keep the cancer at bay for both of them and maybe even stop it in its tracks.

When I’m feeling sad, I’m able to call a friend for a chat. They know they can’t change the outcome but are able to comfort me through the tears. I’ve also joined a carers group at my local macmillan centre. Everyone is so kind and supportive. Do you have access to one?

Cancer has taken a lot from our husbands but somebody told me that the love we have for each other will get us through this. Keep this in your mind hun. You are in my thoughts xxxx

Hi

I'm sorry to hear about your husbands cancer ,I understand the frustration he goes through when not being able to talk properly and people don't understand him, my husband had his voice boxes removed 8 years ago and had a speech valve fitted which was great as he could talk as normal albeit a different sounding voice , unfortunately the tumour that as returned is pressing on his speech valve and as stopped him speaking properly,I'm very good at lip reading,

It's the silly things I miss like his proper voice and his laugh, 

He used to like taking our dog a walk but tired very easy so that's now down to me full time to take our dog out, he used to love steak and chips but can't eat anything anymore and he used to love a pint but even that's had to stop, he loved his sunny holidays in Spain and we have a caravan on a Spanish camp site but holidays have stopped anc we have to sell up our happy place

I have family and friends I can talk to but in all honesty they don't really know what we are going through

It saddens me what our life as become 

I will look into carers group see if there is anywhere near where I live 

Jenny

Hi Steve 

I don't think there is a Maggie's in my area but will check up on it

Things aren't difficult at home yet but I'm sure they will become so, I just feel sad sometimes and that feeling can be overwhelming at times as I remember the man he used to be and how he as become and I know things will become worse when treatment doesn't help anymore 

Thanks

Jenny