'I and my family – my daughter donated a kidney to me four years ago – are happy, but I dread this operation'

Dear Virginia

Having had many oral cancers – I’m quite disfigured and eat and speak with difficulty – I’m now facing an operation that may leave me unable to speak or eat at all. Should I go ahead with it or bow out as gracefully as possible with a few months of possibly reasonable quality of life? I and my family – my daughter donated a kidney to me four years ago – are happy, but I dread this operation. Still, I so want to be there to see grandchildren and to help my husband in his old age. What do you think?

Yours sincerely,  Ghislaine

Virginia says:

I naturally feel very hesitant offering any kind of opinion on a problem like yours, Ghislaine. It sound so overwhelmingly horrible and frightening – and also appears, as far you are concerned, to be a matter of life or death – that I feel presumptuous even commenting on the situation. It is a very personal choice and needs not only your views but also your family’s taken into account. 

However, you’ve asked, so here goes. Personally, I would probably have wanted to draw the curtains – if you’ll excuse the euphemism – even before the last operation, the results of which you’re living with now. 

The prospect of talking and eating with difficulty fills with me with dread; life is grisly enough without being unable to be fluent or get pleasure from eating. 

And yet, here you are, clearly happy and fulfilled and coping remarkably well. So who’s to say you wouldn’t come to terms with the result of the next operation and somehow manage to pull through? Because of your personality – optimistic and, it seems a stranger to depression – perhaps you wouldn’t find the situation unbearable, and you’d still be able to make a huge contribution to your family’s lives. 

Also, have you thought that you’re anticipating a dismal future that may not actually come to fruition? Could it be that the doctors have outlined the worst case scenario? They often do this to cover themselves against their patients blaming them when things turn out much worse than expected. 

It could be that when the surgeons start operating they find there is much less cancer than they had thought (or, of course, there may be much more). And let’s say the results are as bad as they say, if not worse? You sound so game, I feel that you’d be up for anything.

But as you’re dealing with unknowns, my tentative advice to you would be to have the operation and then, after six months, see how the land lies. 

If life is bearable – and it may well be more than bearable – then you will just continue living as bravely and happily as you can. And if it’s intolerable, and life is a total misery, then you can start making other plans. 

It might help you to ask your surgeon to put you in touch with other people who have had the same operation, so that you can find out how they are coping. You could even ask them whether they feel they would have preferred to have died, or to live in the state they are now. You will only get subjective answers, but I’m sure you would discover some interesting insights. 

I think it’s extremely sensible of you to start anticipating the outcome of this operation now. And it’s important to include your whole family in all your thoughts and anxieties, because only then will they be able to come to terms with any future plans you might make. 

Readers say...

We made the wrong choice

My late wife was diagnosed with cancer before our sons had reached their teens. Thankfully, she underwent treatment and was “cured”. Then, about eight years later, the cancer recurred. 

When we saw the consultant, my wife’s first question was, “What if I do not have any treatment?” I was horrified and insisted that of course she must have treatment and be cured again.

We then underwent six awful months, during which my wife suffered dreadfully, losing her beautiful hair and suffering all of the other effects of chemotherapy.

With hindsight, we should have spent those last months in peaceful enjoyment. 

Should Ghislaine undergo further treatment? Only if there is a strong possibility of a cure.

Name and address supplied

You need a frank discussion

I am so sorry for your profound dilemma. First, read the book Being Mortal, by Atul Gawande, which is a sensitive and intelligent exploration of dilemmas including such as yours, and end-of-life decisions. In my opinion, it should be read by everyone, since it will be relevant to most of us in the end!

Then, ask for a completely frank and honest discussion with your doctors and with your relatives in the light of what you have learnt.

Then make the decision, which can only ever be yours. Love and luck to you.

S Jenkins, Northampton

Be realistic about the future

You face a rocky future whatever you decide, and your decision should be made after discussion of your post-surgery situation and longer-term prospects with your consultant. 

You should try to be realistic about your ability to deliver the support to your husband that you desire to offer, and you need to discuss your options, firstly with your husband and then with your daughter. Be as unemotional as you can. 

A decision arrived at in this way gives the best prospect of a good future, whether it’s long or short.

Michael Edwards, Blakeney, Gloucestershire

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