A difficult week

A difficult week.  I had my blood counts taken on Tuesday but was too ill to go in to see Dr Mead on Wednesday.  He told me that although the new chemo had reduced the swelling it had sent my blood counts through the floor – like they were when I went into intensive care. He says I should not visit him in hospital but the nurses have been coming in most days and monitoring my situation.  My greatest fear is not being able to breathe so I am using oxygen when I can.

Then on Thursday we had a message from the hospital that my mother was seriously ill.  Fortunately, by late morning the emergency team had left and she is making some progress.  Ray saw her yesterday and she will be staying in hospital for a few more days.

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My aunt and cousin went to see my mother yesterday and she was in good spirits and so happy to see them.  She seems to be on the mend.  I am possibly a little better but so very weak. I am not sleeping at all well or eating properly.

Let’s seem what the week lies ahead.

Mothering Sunday

By Saturday evening my mother was back in hospital with the same problems as before.  When I rang this morning the medical staff can’t seem to make any commitment about doing anything; they just wait until the worst of the pain has gone, then send her back to the rest home.  I had words with the sister this morning about this but there is perhaps a hidden age agenda in all this.  We are all finding the lack of action very stressful.

Anna has been staying with Dave and his parents in a village outside Marlborough while she has been attending a course.  As she was then returning to North Wales it made more sense for us to go to her.  We supplied the picnic basket which is always ready with everything we need, Anna supplied all the food and Dave’s parents supplied a table and chairs.  Even though it was warm I sat in the front of the car.  Anna had chosen lovely specialities which she knew all three of us would really like.

We found a lovely location in the Savernake Forest where, with the benefit of the Jeep, we were able to go off road.  Many of the trees are hundreds of years old and the sunlight on the new leaf and spring flowers was beautiful.  We had a really memorable day.

I feel sad that I wasn’t able to see my mother in person on Mothering Sunday and I missed Jonathan but, of course, we are receiving regular messages and also some photographs.

I have very little energy at the moment and had visits from two nurses.  At the moment most of it is talk; we shall have to see how effective the palliative care really can be now.

Steering clear of the shops

Yesterday I was very tired but the day was cheered up by a visit from Margaret.  She came to give me communion and we had a really good, long chat afterwards.

Raymond has been running an advanced portraiture course over two days, yesterday and today.  He doesn’t normally run two courses quite so close together so he is a little tired.  We have a few things to do before 9.30 when the session starts as I am not sure of the wisdom of mixing with people in shops when I have fluid on my lung which could perhaps turn to pneumonia.

I had hoped to see my mother today; I can’t visit her at St Elizabeth’s so she usually comes here these days.  I didn’t think I would be strong enough to help her in and out of the Jeep so I thought a taxi would be the answer.  Unfortunately, she is feeling a little sick which I assume is all part of the trouble that they are planning to alleviate by the procedure on Tuesday.

We had another update from Jonathan in which he explained that he and his team are scouting for locations suitable for filming in Chile.  It is great being able to hear from him with the immediacy of modern communications.

Ray’s course is just drawing to a close and it seems to have been successful.  I got out the picnic basket ready for tomorrow as we hope to go to Marlborough to see Anna.  As I can’t get to the shops she is buying all the food so it won’t just be pork pies as it might be if left to Raymond.  I am looking forward to seeing her but I shall miss my son on Mothering Sunday.

Practical palliative care

Dr M faxed a letter to my GP, Dr H, to tell her that I had been put on this new drug which we hope will work but also asking her to initiate palliative care support.  She immediately telephoned us and came round to our house that morning.  Dr H has already been to see us before but it is not until you really need a service that you can take it all in.  We talked about the sort of assistance we thought I would need and she is both helpful and sympathetic.

I was aware that I would probably have a lot of help in managing pain and sickness but I needed to explain my phobia about not being able to breathe.  When I was very young, another child put two cushions over my face and sat on them so that I nearly suffocated.  Difficulties with breathing were further compounded when I was a child as I had adenoids and lots of catarrh.  We were absolutely amazed though to receive a call from a medical oxygen supplier and by 3.00 p.m. a cabinet was installed on the upstairs landing with sufficient tubing so that I shall have access to oxygen wherever I am when I come to need it.

By late afternoon/early evening I began to feel really ill and had to lie down in bed which is unusual for me.  As I have no wish to return to hospital, unless it is something which is necessary for a doctor to treat, we have to deal with this situation ourselves.  Fortunately, I am much better today but it shows us the need to have met the palliative team and know how and when they can help.

This morning I have spoken on the telephone to one of the nurses on the palliative care team and she will be seeing us on Monday.  I really want Raymond to know that he has some support on which he can call together with advice, as otherwise it is a difficult situation to be in.