Hello OnlyoneWinnie,

You are right, carers do so much and do such an incredible job - often juggling work, children, and so many other things - that often they find no time to look after themselves or to take a moment to focus on their own needs. And as you say, sometimes you just feel that the support that you need isn't really there, that everything is remote, has a clinical feel to it and operates only during working hours which I can imagine must be incredibly frustrating for you. Having to rely on a phone helpline in your situation can also be rather stressful if you have profound hear loss. You have described life as a carer very well and I am sure there are many on our forum who will recognize themselves in your story. I hope this forum will allow you to connect with other carers who are in the same boat.

I thought I would also share a link to our website on Caring for the Carer (I love this title!) and I hope that some of the suggestions on this page will be helpful to you. Have you heard of the website CarersUK? You can find out more about it here and it may be of interest to you. They have support groups for carers all over the country and you can find out for example where to get help in your area.

Last but not least, our forum is there for you at any time of day or night and you will get to meet others here who have cared or are currently caring for a loved one with cancer and I am sure they will pop by soon to say hello and share their own story with you. They may also be aware of additional resources available to carers that they have used and that they may want to share with you.

Best wishes,

Lucie, Cancer Chat Moderator

thank you for troubling to write that post Lucie and for the practical information too. I just feel if more of us shout a bit louder someone may listen at some point. I am a relative novice to all this and I take my hat off to those who have navigated this trecherous and painful road for years. There are some who think they understand how it is simply because they comprehend how a process may work because it has been explained to them.... but as they have not had to live through it and do it day after day and night after night, they are very misguided. I went to see a doctor recently judging me on my ability to return to work... after explaining my own health concerns he asked about my home situation. On telling him my husband of over 40 yrs was terminal, he looked at me blankly with fingers together & said "and how does that affect you?" Upset with incredulity I said... he is DYING how do you think it affects me? (uncomfortable blank stare) So I recounted the previous night... the round of accidents, stripping, showering and bed unmaking and remaking while dealing with raging shoulder pain of my own.  Conclusion.... he didn't think I could concentrate on work while all that was going on... I reminded him this and more had continued for 3 yrs and I not only had not been sacked, I had actually gone up one category in my performance...silence... still not fit for work.  Reminded him I didn't need the worry of losing my job or worse going on zero pay... no impact cos 'this is the system we have to work with'. Dearie me....  It just made me so annoyed I was once one of those who thought you could not work and be a carer too.... When you love someone enough you learn to multitask very quickly, to munch through your own pain both mental and physical and you can watch the nice charity ads, talk to the nodding 'counsellor', but Ive already found NOTHING will change your situation & trying to access the very limited stuff out there that just might help a bit, often expends energy, money and precious time you just aint got.  And pardon me if I am wrong or inadvertently cause any offence... everyones journey is their own and can only speak for me so far. Good luck one and all. x

Oh wow ... I've just read your post ... I wish teresa may could read it too ... It's a mine field out there .. just tick tests now ... No human common sense ... No that's nothing now ... Can you raise one hand to touch your top pocket ... Yes I'm not dead just yet ... Apparently it's costing more to administer then they are saving ... I always thought cancer and caring for someone going through cancer counted for something ... You can't put on cancer like a you can saying you've got a bad back ... Yes people did take advantage ..but when there proof of cancer / Parkinson's / cystic fibrosis / M S ... There's no "putting on"  these effects ...  

I hope you push for them or go to next level if you don't get it ... McMillan have people there to help see what your entitled too ... They helped me ... So you fight for your rights ... rant over .... Feel a bit better now ... take care Chrissie   ; ((.  X

Thank you Chrissie for your kind reply. Its not even really about money. It took us four whole years to get the benefits for him he deserves... but these are for HIM to make his life, whats left of it, tolerable. This lad worked from 14 yr of age for  42 yrs. It was more about what is (or more importantly what isn't) out there for carers who work and the attitude to us. John was diagnosed in 2015 but only got higher rate PIP late last yr when he was told he had 6 months. I am exhausted and was thinking of all the poor souls out there like me or in worse positions who get no practical or emotional support of substance. No make overs or massages, no time out, and if counselling aint for you, you are well stuffed. Lots of well meaning people out there with nice words.... but translating it into action that works for employed carers generally is a fat NO. The assessments for benefits, even tho all medical evidence is there on a plate are mostly cruel and pointless. Its heartening tho that there are people out there just like you who take interest and listen. Listening and doing are the only things that will lead to change. xx

One thing I'd like everyone to understand is ....  " who cares for the carers " I've been on both sides ... and it's far harder being a carer, then being cared for ... ( in my opinion) 

My sister is in late stage dementure and at the moment we all are mentally  and physically exorsted... while trying to keep everything normal for her ... her daughter like you have a job too ... she balances job , her mum, grandkids ... not to mention her own housework etc .. I don't see how she gets the time to sleep ... and all she says is she wants to do more too ...

So if you need an ear ... I'm here ... so wish we could do more on here ... but take care ... Chrissie x

Thats very kind Chriss. I really am impressed with people like your dear sister who seem to be able to spin plates in the air and still have energy for more. I am not that strong.And your kind kind offer of a listening ear is overwhelming.  I cannot even cope with losing my soul mate never mind the caring and other responsibilities. I don't just love him, I am still 'in love' with him more now than when i was 15. I suppose he has been in fact my total obssession for over forty years.  I am consumed with that and only my duties to him, work and the wider family have kept me afloat this far because I have to.  Sadly, one thing I have found is that no amount of discussion, talking or counselling etc will stop me from losing him. It won't help me to cope or deal with that either. Im just a wuss who does not take easy to losing those I love beyond words. In 1993 my mum died on my shoulder and all these years later I have never recovered. But I did learn that however devastating losing my  beloved parents was, it is incomparable to my life partner. Hopefully he will be with me a little longer. He started Raltitrexed yesterday. x

Oh , how lovely you put into words just how you feel ... and your right to have all those feelings as that's the price we have to pay for having amazing people in our lives, and 40 years and still feel so much love, he must be very proud of you as you are him  ... I so hope riltitrexed helps and gives you more time ... take every day with both hands and there's still a few memories to grab yet .... and your deffinatly NOT a wuss, bless ya ... your a very special lady ... who's doing the best she can ... and I for one salute you ..

Well you both hold tight on this cancer rollercoaster we all find our selfs on ... it's a really bumpy, scary ride ... but wer all on it right behind you ...  big hug to you both ... Chrissie

Cant thank all the kind people on here including the moderators etc enough. Knowing someone who has first hand experience of this means so much to me, to us both. Emergency admission to hospital resulted in John being bullied into having a procedure he did not want and which he had been telling the oncologist so for weeks. It was done in the midst of a massive infection so a volly of consequences followed. He had been hallucinating thru fever moments before the doctor came in to do his harassing but in a brief period of lucidity said "Id better have it done then, I got no choice\". two mins later he was talking about leeches on his table. After the procedure and temperature had reduced a bit, he told his oncologist he had barely understood anything the so called specialist had said. He has been in hozi almost two weeks now. His legs n feet so swollen he can't fit his slippers on. He may have cellulitis round his abdomen & has been put on insulin without any discussion with him or with me as his carer. He is finding it just as hard to cope with the nephrostomy as we anticipated is not eating hardly and even if all of this settles he is still terminal. I am being forced back to work to pay the rent even tho i am ill myself after a shoulder op failed to heal (3 weeks became almost 6 months) and I will still have to find a way to care for my soulmate. John has been treated like summat to be processed and i barely exist & at times have been treated with contempt. Tried to call hospice for advice n secretary was like gestapo n if its not an appointment for john, bluntly told to do one. Already had one horrendous experience with them so were on second chance, after this, them trying to mirror statutory services and split us up, we are wary. I feel so burned out but my body still finds the energy to gripe on here (sorry chaps) and to skriek for England, using an old northern lass term. Luckily empty house next door so if i stay in bed my howling won't disturb anyone for now. I am boiling angry to be mistreated by the very ones there allegely to help. All the while my lad lies really ill in hozi and sounds like he is giving up. In two days it will be the longest we have ever been apart in almost 46 years......

Oh hunny ... Hope it's helped writting it all down .. this is the place to vent .... Cancer sucks big time ...  Ive always had faith that hospices where our santuary ... It brakes my heart how even that hospice havnt offer you help ... now I can't take it away, or make it better ... But I do hear you ... So sending you a big hug .. chrissie xx