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feeling alone

ronnie62
Posted by

My husband was diagnosed with tongue and neck cancer on 16th August 18. Which was devistating to hear. We had all the emotions.

He had his surgery on Monday 8th Oct, he was in theatre for 8hrs or more. That morning was horrible, because he’s a retired nurse, he was very frightened because he knew what he would be happing to him. And I felt so helpless and alone when I had to leave him to go into theatre. And what even worse is that his operation couldn’t be done in our local hospital, so we have had to travel to another hospital for all his appointments and surgery. I am travelling every day on public transport and it takes nearly 2 hours from my front door to the hospital. And I can only see him for about 1 and half hours before I have to leave to get home, and it’s breaking my heart every time. After he came out of his operation he went intensive care, so it was over 24hrs before I got to see him after surgery. He was very looked after in the intensive care unit. But he was moved to the Head & Neck ward on Wednesday evening. And yesterday when I visited him, I ask if felt he was getting looked after and he didn’t because they had said they were short staffed. And obviously he can’t talk because he has tracheotomy in, so he has write most things down. He was upset yesterday because he has been told that he has to go back into surgery again on Monday for another 3hrs because the skin they grafted from his leg onto his tongue has died, so they need to do it again from his wrist. This so traumatic for him and I feel so helpless and I love and miss him so much and just want him home. 

And i don’t feel there is any support from the staff on the wards and I thought when you were diagnosed with cancer, you automatically got  support. We both feel very alone. And I really don’t know what to do or say. I just feel very sad and I want to be with my husband every hour of the day. Not just for an 1hr and half.  I work in the NHS myself and so has my husband, but I now know what it feels like from the other side and it isn’t good

KTatHome
Posted by

Hi , I’m sorry to hear about your husband’s diagnosis and how you are feeling at the moment. I wanted to welcome you (for lack of a better word) to the online community as you sound like you need a bit of support at the moment. I can’t make the 2hour journey any easier or rewind the clock so he doesn’t need this next operation, but I’m hoping with the support of others who know how your feeling will make the disappointment easier to bear and quicker to move on from, as I know it does for me.

I’m going to suggest that you join and post or read the entries in the carers only group head and neck group, I’m putting the links in below for you to click on and find them easier.

https://community.macmillan.org.uk/cancer_experiences/carers_only/discussions

https://community.macmillan.org.uk/cancer_types/head-neck-cancer/discussions

You might find it useful to complete your profile as well how to do that is in the help section. I feel it’s always a bit more difficult when you have that extra bit of knowledge and perhaps higher expectations than what’s happening around you. Hoping that perhaps the effort you and your husband have put in to your work in the past is reciprocated and I’m sure it is but your experience is not feeling it. I bet you still love the NHS though and see volunteers also helping around the hospital who must love it to and want to give back as much as they can. So for now I’m wishing you and your husband strength and hope that this phase will soon be in the past. I hope you can make the journey as enjoyable as possible, and bring some light to your husband’s experience.

Best wishes

dizzie-wh
Posted by

Hi  

I am SO sad to read how lost you are feeling at the minute with your dear Husband so far away and the problems you are experiencing with getting to see him.

May I suggest - perhaps on Monday (after the weekend) - that you search out the PALS unit in the hospital where he is. They may well be able to offer you more support and perhaps even advise regarding some sort of transport to get you there easier??? Also they will be able to kickstart some support from the Cancer team for your dear Husband. 

I realise I am hoping for the moon BUT they have the contacts within that hospital for extra support. Additionally they may be able to help you with travel costs etc.

Many years ago we had Matrons on the ward that co-ordinated all this sort of thing BUT alas no more! Also we had Social Workers who organised this??! 

Unfortunately, he has probably had to go this far away from home for specialised treatment - let's hope they can get him right and back to a local hospital for care as soon as humanly possible. 

Being the weekend I doubt if he'll see any of the same doctor twice BUT do try and collar someone to find out for yourself what the plans are for Monday. Approach the Sister on the ward and ask for the Dr in charge to meet with you when you're visiting. Be persistant my lovely - you need to know what they plan and the ins and outs of the treatment. 

Do SO hope your travel is not too disrupted by the weekend (why do they always decide to do road/rail works at weekends)???

Love and Sympathetic ((((hugs))))

Diz xx

"You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have "

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jaymacabc123
Posted by

Hi Ronnie - sorry to hear what you’re going thru.  My husband was in a hosp far from home for many months during his leukaemia treatment.  

as you work in nhs maybe ask for extended sick leave and get your dr to book you off for stress even...I used to work in nhs and if it’s still the same you’d get full pay even while off ill for quite a while.  

That way you don’t havt to think about work and can spend longer visiting.

its worth it to try find some accom local even Airbnb renting one single room in a house close to hosp.  Yes you will pay for it but when you tot up the cost of petrol or train fair it may not be too much different. 

Of course none of this may be relevant to you but i just thought I’d mention it.  

 *Learning God is in control and every day holds the chance of another miracle.*
ronnie62
Posted by

Thank you for that advice, because at the moment I am using my leave, and I do feel very tearful some days, then others I feel very strong. 

This is the third man in my life that has had cancer to battle my father had prostate cancer and only live 11 months after the operation. My brother has had bowel cancer and had most of his bowel taken away, but it 12 years on since and he still going strong. Now I have my husband. Also my sister who is 77 years old has kidney cancer and her operation is on the 22nd October. So life is a bit horrible at the moment.

 Ronnie62

ronnie62
Posted by

A big thank you for this, I have just arrived at hospital and I am hoping to get in earlier than visiting time. I just can’t wait to see him.

i rang this morning to the ward but they aren’t very forthcoming with or he is. 

Thank you for the hugs

ronnie62

dizzie-wh
Posted by

Dear ronnie62 

WOW - you certainly have had more than your fair share of the Cancer Rollercoaster !!! I do SO hope you get to see your dear man today and that perhaps you may get some answers to put your mind at rest.

Thinking of you and please do let us know.

Love and more (((hugs)))

Diz xx

"You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have "

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