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.

Making life difficult

My mother is out of hospital and for the second time she has been sent out without any discharge papers.  This makes it very difficult for St Elizabeth’s.  Fortunately, Barbara who runs the home is not only a former nurse but very much the champion of her elderly residents.  My mother is supposed to have a procedure on Tuesday to remove the gall stones and Barbara will be looking out for the appropriate appointment .

Yesterday we saw Dr M who broke his holiday to see one other patient and myself.  Mark had told him that my breathing was difficult so I had a chest x-ray before seeing him.  I have some fluid on one of my lungs which is the cause of my shortage of breath.  Dr M has managed to persuade BUPA to let him prescribe the otherwise unlicensed drug which is good of them as it is very expensive.

The oncology pharmacy made things very difficult.  They made us wait an hour and  then they decided that Dr M should have supplied them with a form (which I had already signed) about any difficulties with the drug.  We had talked it through thoroughly and although there are no guarantees, it seemed like a good drug to try.  So Ray ran upstairs to get the form but quite naturally Dr M had gone by then.  Meanwhile I was told that they didn’t have the drug in stock whereas Dr M had told us he had already checked.  They told us it would take two days but Ray said we didn’t have two days; we had to act immediately.

Then we were told that Dr M should have filled in a form for the drug manufacturers so Ray went upstairs to get this filled in by another doctor.  The doctor was not pleased with the pharmacy’s intransigence.  By this time I was quite tearful and all the other women in the pharmacy waiting room were comforting me or having a go at the pharmacists.  We all have a form of cancer or relatives with cancer so I am afraid it is natural.

Eventually, very late in the day, the drug was “discovered” on the shelf and we could make our way home.  We were both very tired as we had expended a lot of unnecessary emotion.

However, the good news is that Jonathan has landed in Chile.  He is safe and well and has seen something of Santiago.

A day of uncertainty

Today is a day of uncertainty.  I am very short of breath and Mark thinks I am anaemic as all the signs point to this.  However, I have not heard from Dr M and am not due to visit the hospital until 2.45 tomorrow afternoon.  Normally if I require a transfusion, I am telephoned in advance and I go in early.

I know that Dr M has been in contact with BUPA about a drug which is being used in America but in this country is not yet used for lymphoma.  It may not even be licensed yet; I am not sure.  He sent a report to them and asked me to add my request to the insurers who are considering whether to give approval.  Certainly my neck is very swollen on both sides and nothing is working.

We need to go to the hospital before my appointment in order to find out about my mother.  I understand that the endoscopy which is proposed goes deeper than the normal one which many of us have had and this may be the reason why they decided against the treatment the first time around.  Unfortunately, they didn’t talk to us; they just left her hanging around waiting.  We are in a similar situation again in that she has returned to hospital with the same problems as before and is waiting to be fitted in for the procedure.  However, we need to talk to the medical staff to find out exactly what they plan to do, the risks of treatment and the risks of doing nothing.  Very importantly, we need to know whether all this has been discussed fully with my mother.

As I can’t visit the ward, hopefully Raymond can see her tomorrow before or after I see the oncologist and he will be armed with questions for the staff as well as for my mother to see.  She cannot keep being discharged only for the same problems to recur which have not been investigated.

We so much enjoyed having Jonathan and Anna with us at the weekend and are both really missing them.

A happy time in the end

I’m not sure whether this tablet chemo is going to work.  My neck is as large as ever on the left side and is now enlarging on the other side as well.  Dr M has been in touch with BUPA to ask about a new drug but they have probably refused on grounds of cost so Ray and I have to ring the up too.  The problem is that at this stage even quite good drugs are not very effective.

It has been lovely having Anna here as we’ve not seen her for little while but I had hoped Jonathan would be here for the whole weekend too.  However, he has been working with people who have all had colds or infections of some kind and he was just beginning to feel the early signs.  So he didn’t come here on Friday and instead dosed himself up with Vick’s First Defence.  I was so sorry he couldn’t come with us to Beaulieu but appreciate his thoughtfulness.

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On Sunday Jonathan came down from London and was feeling perfectly well.  It was a shame he hadn’t been able to come earlier and he and Anna really enjoyed meeting up again as it had been some time since they had seen each other.  I had suggested that as he only had a few hours, we would go to a local hotel and have lunch there with coffee afterwards so that there was no time spent cooking and washing up.  As Sunday is often a day when families go out for lunch it had to be one where it wouldn’t be too crowded.  Although it is an expensive hotel, the roast beef we all ordered was dreadful and the meals were very dry.

Normally this would really have annoyed me, but as Jonathan and Anna said, they are used to good food and we were all so happy that it just became a source of amusement.  Afterwards we went to Jessop’s so Jonathan could choose a camera to take to Chile as we all want to see the pictures.

Unfortunately, Raymond was still running the course, so although he could wish Jonathan a safe trip, he couldn’t spend any time with him.  It could so easily have been a sad time, as Jonathan is away for a few weeks, but it wasn’t.  He is off on an exciting trip and it is a wonderful opportunity.  All our love goes with him.