Oesophageal Patients Association

Do we really care?

Of course we do! Especially if our loved one is going through all this traumatic chemotherapy, radiotherapy, surgery or all the effects of treatment.

All the attention goes, of course, on to the patient, whilst the carer has all the waiting around, journeys to and from hospital, all the extra jobs to learn how to cope with at home, the enquiries from family and friends - and the anxiety. It is easy to feel ignored!

It is very exhausting, physically and emotionally, and not made any easier by the fact that the outcome of treatment is ultimately uncertain. The nurses and doctors may be wonderful and become good friends - but they cannot give any kind of guarantee about treatment. And when you are at home it is not uncommon to feel unsupported.

You leave the hospital at the end of visiting time, but then do not feel right until you actually see them face to face again in the ward.

It is a situation that patient and carer have to face together, but patients can tend to shield their feelings from their carer; and vice versa. It is quite logical that the overall situation and all-consuming preoccupation with the health and progress of the patient can have an effect on relationships. You fear that the patient may not survive, and cannot help contemplating what life might be like without them.

Sometimes you feel as if you cannot really discuss your fears with the one person to whom you are really closest. But you feel you have to keep going and carry on making the effort. You have to keep strong for both of you. Strain does not help our tempers!

Sometimes we arrange our patient support group meetings so that carers and patients sit and talk in their own groups separately from each other. It is surprising the relief that carers feel to know that others go through the same emotions!

Patients do, of course, have to concentrate on getting better, or keeping as well as they can, but it helps if there is a bit of energy left to recognise the strain that the carer feels as well.

It is easier said than done, but finding the time and opportunity to share problems and fears with each other is what you have probably been doing at other times in your lives - and it is best to try not to make this difficult time an exception!

Loss of health brings a form of grief - and grief is the price of love.

1 Reply

Yes , yes and yes - as someone who is caring - with all the love in the world - for my partner recently diagnosed with OC - I so identify with all the above comments. We are in the very early stages - treatment plan not yet identified as still going through the various tests and my devestation is such that I fear sometimes for my own sanity - sleep and I have become strangers - merely passing at odd stages in the night, weight ? - well the most succesful diet I have known with a stone dropped in four weeks. He is the last person I would burden with my grief and dont really feel anyone else can truly contemplate what I am going through - unless they are in that place theselves. But carry on we must - what is the alternative ?


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