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New and not sure if I'm supposed to be here! - Carers UK Forum

New and not sure if I'm supposed to be here!

Tell us a bit about yourself here.
Hello, I've been looking for a support group to help me with my partners illness and supporting me but I'm not sure if this is the right one. All the groups I've found so far specialise in a certain area, mainly caring for someone who has cancer, dementia or mental health conditions and I don't know where I fit, but none of those but do need people who understand.

Im 37. My partner is 48. 7 years ago he had a carotid body tumour which had become so large that its position and size almost killed him. They removed it but during the process he suffered a stroke. However he recovered pretty well with surgery to rebuild vocal cords on one side and some slight facial and tongue paralysis, some hearing loss but otherwise fit and healthy. Late last year following a severe decline in his swallowing and repeated choking on food and liquids, tiredness, dizziness and further loss of hearing we found out he has a 4.5cm glomus jugular tumour. We went for scans and tests and were referred to queens square and then last week we were told that they noticed a mass on the opposite side so more scans. We have had one so far and they have picked up 2 new masses which are potentially carotid body tumours. We are now waiting on further scans.

In the meantime I feel terrible. He is either not taking it seriously or not processing it but is not appearing to have it affect him at all. I coped with news of the second tumour but these new 2 masses have sent me haywire. I'm a bundle of tears one minute and immense rage the next. I cannot talk to my partner as I don't want him to worry. I'm keeping it all in. But I'm also in limbo. It's not cancer so therefore people think it's nothing to worry about but I see him suffer each day and become more and more unwell.

I'm trying to maintain normality but each day is getting harder and I feel that I'm becoming snappier because I'm frustrated with not being able to Express emotions and talk and don't even get me started with anger towards hospitals!

So I don't know if here is the right place. I feel that I've been robbed of my future. We had planned a baby, he has 2 children already but I have none, and now I feel that will not happen and I feel evil for thinking of such things when ultimately if I lost him I don't know how I'd cope.

I work as an activities coordinator in a dementia and challenging behaviour Nursing home so in essence I have to be a cheerful ray of sunshine for 8 hours a day then come home and do the same!

Thank you for listening

N
Welcome to the forum.
Yes most definitely a carer!
Unfortunately I had never heard of your husbands condition until this evening, so would suggest that you contact the support group for sufferers for specific information concerning it.
However, I've been a carer for 42 years and understand only too well all the emotions you are feeling.
Everyone has their own way of dealing with things. If he won't talk to you, ask your GP to arrange or recommend a good counsellor to offload. I found this invaluable. Could you reduce your working hours slightly for the time being? Have you told your employer what is happening at home?
I have and they are incredibly supportive. They are very flexible and I'm able to move my hours around to suit his appointments and if hes feeling poorly.

It's a strange condition and the tumours are very rare so I'm feeling very isolated. Its something like 1 in every 100,000 on average for one of them but we have difficult times ahead as the options suggested so far have been radiotherapy followed by surgery followed by radiotherapy.

I just feel so helpless as I watch him struggle and deteriorate and he is on total denial. I spoke to him one day and he said dealing with it as it happens and not thinking of anything negative is the only way he can cope. I'm more practical and feel that we should be making plans for if he gets worse etc. He instead went and got a promotion which puts more pressure in him to drive around the country and be in different places for important meetings for the home office!!!

Thank you for making me feel welcome though.
Hello Nikki and welcome

I think in a way you are grieving for the life you thought you were going to have. I think most of us on here feel the same ….. illness, disability, accidents, birth defects were just not in our life plan.

My poor Mum died last Christmas aged 96 from dementia and I had cared for her for 14 years, the last 4 of which she had dementia. In addition I have an adult daughter with learning difficulties and autism and she has been a lot of hard work since she was a child so it feels like I have been a carer for ever!

My husband and I would love to travel or even move to Spain but that is never going to happen as my daughter still needs massive support despite leaving home to move in with her boyfriend (also special needs) a few months ago.

I actually envy friends who have no worries, who go away when they want to and do what they want when they want. My life is always planned around daughter and boyfriend.

It is great that your employer is supportive ….. I was in a similar role when I worked and I know what it’s like to plaster a smile on!

I don’t know anything about your husbands illness but he does seem to be handling it in his own way which I guess is what we all have to do. Take care and stay on here because we do all understand. X
Hi Nikki

I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you'd like to and there's no pressure to share anything you don't want to. I'm sure you'll find others in a similar position to yourself.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: https://www.carersuk.org/help-and-advic ... ne-meetups - the next online meet up is today (Monday 23 August), 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: https://www.carersuk.org/help-and-advic ... e-sessions - these sessions range from creative writing activities to beginners Latin dance sessions.

There is also Carers UK's helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Carers UK also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers' assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.
Nikki_2108 wrote:
Sun Aug 22, 2021 8:55 pm
Hello, I've been looking for a support group to help me with my partners illness and supporting me but I'm not sure if this is the right one. All the groups I've found so far specialise in a certain area, mainly caring for someone who has cancer, dementia or mental health conditions and I don't know where I fit, but none of those but do need people who understand.

Im 37. My partner is 48. 7 years ago he had a carotid body tumour which had become so large that its position and size almost killed him. They removed it but during the process he suffered a stroke. However he recovered pretty well with surgery to rebuild vocal cords on one side and some slight facial and tongue paralysis, some hearing loss but otherwise fit and healthy. Late last year following a severe decline in his swallowing and repeated choking on food and liquids, tiredness, dizziness and further loss of hearing we found out he has a 4.5cm glomus jugular tumour. We went for scans and tests and were referred to queens square and then last week we were told that they noticed a mass on the opposite side so more scans. We have had one so far and they have picked up 2 new masses which are potentially carotid body tumours. We are now waiting on further scans.

In the meantime I feel terrible. He is either not taking it seriously or not processing it but is not appearing to have it affect him at all. I coped with news of the second tumour but these new 2 masses have sent me haywire. I'm a bundle of tears one minute and immense rage the next. I cannot talk to my partner as I don't want him to worry. I'm keeping it all in. But I'm also in limbo. It's not cancer so therefore people think it's nothing to worry about but I see him suffer each day and become more and more unwell.

I'm trying to maintain normality but each day is getting harder and I feel that I'm becoming snappier because I'm frustrated with not being able to Express emotions and talk and don't even get me started with anger towards hospitals!

So I don't know if here is the right place. I feel that I've been robbed of my future. We had planned a baby, he has 2 children already but I have none, and now I feel that will not happen and I feel evil for thinking of such things when ultimately if I lost him I don't know how I'd cope.

I work as an activities coordinator in a dementia and challenging behaviour Nursing home so in essence I have to be a cheerful ray of sunshine for 8 hours a day then come home and do the same!

Thank you for listening

N