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I need help fast please - Carers UK Forum

I need help fast please

Share your ideas about the practical side of caring.
Hello,
My husband is terminally ill. He has just been given the diagnosis that his throat tumour is large and inoperable. He is given weeks to months to live.

I would like advice please about what I can do for him, dealing with the hospice and also what benefits we can get. Also do they have special fortified drinks they will supply us with as his appetite is virtually gone.

We have our son's wedding in 3 weeks time and we want him to be strong enough to make it.

Also can someone advise me what to do because I have begun getting severe panic attacks, I feel like I am dying of grief and fear. In between bouts of sobbing I can be ok for a number of hours before it all wells up. I did not know there was so much pain.

Please help me.
Look here: http://www.macmillan.org.uk for Macmillan Cancer Support - they support carers and family as well as the sufferer.

Also, our local hospice has loads of advice to offer, get in contact with yours a.s.a.p. - remember, hospices are about living as well as possible, for all affected. Our hospice has to be one of the most positive, upbeat places I know.

Coping with panic attacks on top of everything must be horrible, but I do not have the knowledge or experience to advise you how to deal with them. Macmillan and your hospice will have met people dealing with situations like yours, many times.
Please call them.

[Hugs] and remember we are supporting you in spirit, even if we cannot be there to hold your hand for real.
mandie wrote:Hello,
My husband is terminally ill. He has just been given the diagnosis that his throat tumour is large and inoperable. He is given weeks to months to live.

I would like advice please about what I can do for him, dealing with the hospice and also what benefits we can get. Also do they have special fortified drinks they will supply us with as his appetite is virtually gone.

We have our son's wedding in 3 weeks time and we want him to be strong enough to make it.

Also can someone advise me what to do because I have begun getting severe panic attacks, I feel like I am dying of grief and fear. In between bouts of sobbing I can be ok for a number of hours before it all wells up. I did not know there was so much pain.

Please help me.
Mandie, I'm so sorry to hear of your family situation. I'm afraid I don't anything concrete to offer you (I'm sure someone will be along who has been in a similar situation and who can give you some real advice). But I couldn't read your post without offering my condolences. I would suggest ringing the Carers UK advice line as a first port of call (0808 800 7777). They'll be able to help with some matters and point you in the right direction for others. Also post on here as much as you want/need to, just to get things off your chest and feel you have somewhere to pour out your emotions. And in the past I've called The Samaritans when things are really bad - they're there 24 hours a day and will listen for as long as you need them to. They've pulled me out of some dark places before. Their number is 08457 909090.
Lots of love xx
Mandie,
So sorry. Ask your GP tomorrow to make a "fast track Continuing Healthcare"application. Help and support under your circumstances should be provided by the NHS at no charge, so your husband can spend his remaining time where he chooses. I was widowed suddenly when my husband had a massive heart attack. Although we didn't know he was ill at the time, I knew exactly what his final wishes were. I'm so glad we had this discussion. It is really important that you know details of any bank accounts and insutance policies which are relevant. Hopefully, the nurses can ask questions which you can't, but it is absolutely vital information. Sorry, I wish I could say this personally, along with a big hug, I know it's the last thing you want to hear about.,t
Google "terminally ill benefits" for details of entitlements and fast track system for them. Sadly, there are a number of people here who have been in a similar position to you, we are here to help if we can.
Mandy, I am so sorry to hear your news. (((((((hugs))))))
I can't give any advice re benefits or dealing with cancer, but I do know about panic attacks. The best way of dealing with them (at least on the short term) is the old trick of breathing on and out of a paper bag. Don't try and breathe hard, just breathe normally only holding the opening of the paper bag over your mouth so that the air goes in and out of the bag. Do this for 2or 3mins until you feel better.
If the panic attacks continue long term then your GP can refer you for therapy and they can teach breathing techniques, but I expect that its just a crises response.
Don't worry if you fall apart every now and then. No-one is superman and you have to let it out every so often.
Dear Mandie, my heart goes out to you. I have been where you are now (terminal kidney cancer in my husband's case) so I know the overwhelming feeling of disbelief, panic, terror and heartbreak that sweeps over one at this nightmare time.

In practical terms, you say your husband has been told his cancer is inoperable. But is it untreatable, and if so, why is that? What is his general state of health (sounds a daft question, given his diagnosis, but I mean how healthy is he 'apart from' the cancer? Has he got a bad heart, weak immune system, other health issues, either separate from the cancer or caused by it, ie a 'co-morbidity'?). If he is in a very weak state of health, he may not be up to coping with any anti-cancer treatment alas.

Is his oncologist talking about any treatment at all, or only palliative care? This is the distinction between treatment that attacks the cancer and seeks to reduce it by any means (usually surgery, radiation or drug therapy) in order to extend life (not talking about 'cure' but about keeping alive longer), and simply treating the symptoms to make him 'comfortable'.

The very, very last thing I want to do is offer the false comfort of false hope, but it is essential not to let him be 'written off' before exploring ALL the options - if necesasry with another oncologist at another treatment centre (you have the right to demand a referral elsewhere).

It could be, for example, that his oncologist is not recommending chemo because your husband's health generally is too poor to withstand this gruelling treatment, or it could be because in the opinion of the oncologist it's a 'waste of time' - but that is your husband's decision, not the oncologist's!

It can sometimes be possible, too, to use chemo (or other drug treatment - see below) in a form called 'neo-adjuvent' which means that the drug/chemo is used initially to reduce the size of the tumour (especially if it's grown into tricky to reach by surgery places) and thereby make it possible to remove (or at least, reduce - "debulk" they call it, when they can't take it all out, but can take some of it out).

What kind of throat cancer is it, as this can, of course, critically affect how treatable it is, and how advanced is it (ie, has it metastasised - spread to other organs like the lungs via the bloodstream, rather than the initial tumour simply growing very large where it is). Metastatic cancer of all kinds is usually treated by drug therapy, at least first, unless there are only a few 'mets' (secondary tumours) which the surgeon can get at easily.

What kind of oncologist is your husband seeing? A surgical oncologist, or a medical oncologist - that may make a difference in attitude. Again, the very last thing I want to do is offer false hope, but one mantra (especially in the USA!) is that 'when a surgeon tells you your cancer is inoperable he means that HE can't do it - doesn't mean another one couldn't.....'(though yes, sometimes no surgeon could do it....)

I mentioned chemo, but these days there are several new drugs that are 'beyond chemo' that are coming into mainstream use in many cancer types. These are 'targetted therapy' drugs (Herceptin for breast cancer is the most famous, but there are an increasing number out, and still more coming out). One that I've read about (just by googling it now) for throat cancer is Cetuximab (also called Erbitux), and there may possibly be others as well.

However, and this may be a big 'however', the targetted drugs that are available in other countries may not yet be available in the UK - or, if they are, are only available privately and not approved for the NHS (drug approval in cancer is a huge, huge controversial topic, as you probably know - NICE doesn't like to authorise these new expensive drugs.....).

Now, again, without knowing any of the specifics of your husband, it could just possibly be that one of these new types of drugs IS suitable for him (they don't cure, but they can extend life, and 'keep him going' for a while longer), but if it hasn't been approved for the NHS (ie, no funding for it) then it could be that your husband's oncologist hasn't mentioned it to you as it would get your hopes up. cruelly......BUT, for all that, it COULD be that you might be able to afford to self-fund, at least for a while????? So, I would say it is definitely worth asking whether there are any new targetted therapies that might possibly be of benefit to him.

In that vein, it could also be worth asking if there are any trials going on that he might be eligible for - though he may be excluded for other health reasons, alas, or the trial is full up already, etc.

Overall, I DO HOPE I haven't raised 'false hopes' which would be cruel and dreadful, but I would though recommend that if you have NOT yet been given any information about what latest drugs MIGHT be suitable for him, irrespective of cost, then you should enquire about them. The Cancer Drugs Fund is still, I believe, in existence, and was created to provide a line of funding for these new drugs outside what NICE does or does not approve of. Getting a potentially suitable drug for your husband via the CDF might just be possible.

I hope none of this is 'unhelpful' but you may know all of it already and none of it may be applicable to your husband.

In which case, then all I will say is that, weird though this may sound, cancer is a very, very 'individual' disease, and some patients do much, much better than their prognosis. Another 'mantra' from the US sites is that 'NO doctor carries a death certificate with a precise date on it in their pockets'......

I wish you all the very, very best that is medically possible yet, if at all, and I can provide you with some links to US information and forum sites that I used when my husband was diagnosed (eg, http://www.cancer.gov/cancertopics/wyntk/larynx/page8#e). Also, the British ones, eg, Macmillan forum (, can also be extremely useful, as can specialist organisations, etc
http://www.everydayhealth.com/head-and- ... ancer.aspx
http://www.sharecare.com/health/throat- ... oat-cancer
http://www.throatcancerfoundation.org/? ... uFzj_w_wcB

Please PM me if there is any other source of information (eg, list of possible throat cancer trials) that I may be able to find for you.

With kindest thoughts at this darkest time for you and your family, Jenny
Hi Mandie,

Lots of good advice has already been offered, which hopefully will be useful to you when considering the right path to take in this sad situation. I have no first hand experience of dealing with cancer, so cannot offer you any practical advice, except to say that Jenny's post seems full of useful information and as she has walked this path before you then chances are she knows what she's talking about.

One other thought - you say you only just had the diagnosis, so it's hardly surprising you are feeling panicky and upset. You're probably in a state of shock, which is probably very normal in a situation like this. I think that this will subside a little as time goes on and you are able to choose the best treatment option for your husband.
Again, so sorry to hear your news. This is terribly terribly sad for you. Take as much help as you can get - for yourself too, counselling etc.
Stuff I know about that may help -
There are fortified drinks he can take, and the hospice should be able to provide these. They are called Ensure, but I am sure there are others. They come in milky versions or fruity versions and they have all the nutrients and calories he needs. They will still be able to make sure he is nourished.
Panic attacks - it is no wonder with all this heartache, but they are horrible. No one ever died of a panic attack - you feel like you are, but you are not and will not die from this, or anywhere near. It is the natural (though very unpleasant) flight response of your body. If you want to learn about it google flight or fight, spend the night learning, then turn it off, don't go over and over the material, just do it once, or you'll go mad. The biggest help is breathing. if you feel panic starting, you need to focus on your breath and breath slowly and evenly, try in through your nose and out through your mouth. Try breathing out for slightly longer than breathing in. Try this for 5-10 minutes. Practice throughout the day when you are not panicking - this in itself may help the attacks subside.
Buy yourself some Bachs rescue remedy and sprays 5 drops on your tongue when you feel shaky. IT WORKS. If you feel so bad and breathing does not help, and you can do this - run away, or walk quickly. You don't have to run far, but you fool your body into believing you are obeying the flight response and it may settle. Just remove yourself briefly then come back. On your way back, just gather your thoughts and start walking more slowly and focus on your breath again.

Very best of luck for this difficult time.
Mandie,

I just noticed this thread and was wondering how your son's wedding day went? I hope your husband was able to attend.

By the way, my parents went through phases where they lost weight and the doctors prescribed Fortisip milkshake drinks. Dad loved the strawberry ones, Mum loved the banana ones, but neither of them cared much for the other flavours, so I guess it's very much down to personal taste. Fortisip drinks are horribly expensive so the NHS has quite strict criteria about prescribing them. We used to buy them online, which was much cheaper than buying them at the local chemist (the GP stopped prescribing them as Mum's weight had gone back up to normal).