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.

The sun is a bonus

My mother is back in hospital again with the same problem she had just over a week ago.  She’s not settled on any particular ward yet but fortunately, the tests she has already had mean that we don’t have to worry about it being anything too serious but she has been in some pain so I would like them to carry out the appropriate investigations rather than keeping her hanging around. 

I know she wasn’t in any pain last Thursday which is the reason given to me for why the endoscopy was not carried out but obviously if she had been in pain there was the potential for that to return.  St Elizabeth’s told me that they had thought the procedure was (here I am guessing because I’m getting this third hand so I don’t know the word used) possibly “risky” for someone of 97.  As we were all given different stories about each aspect of her stay in hospital before, I’m not sure who will be given the truth about why the endoscopy was not carried out.  I only know I was rather sceptical as I didn’t think that the reason for her illness had disappeared or been discovered.  So we are back to square one again and must wait until she is transferred to a ward where treatment can be carried out.

I was complaining yesterday that my camera could not pick up the vibrant yellow of the celandines but today I forgot to take it with me and the hotel garden was really beautiful.  It had changed dramatically since I was there last two weeks ago.  The garden is tiered into levels sloping up from the restaurant although mainly the actual stonework of the levels seems to disappear with all the new leaf and blossom, so you just see the plants growing at different heights.

Ray’s course has been going well.  Today when they have been working largely outside, the sun was a real bonus and the temperatures have been warm which is helpful for the models.  It has meant there has been plenty of light for the photographs; sometimes in winter the light has effectively gone by 3.30 p.m.

So far so good

Today is another lovely sunny day although we have been forecast a colder weekend so I hope we can make the most of it.  We had two friends visiting us last evening and although I became tired it was relaxing and enjoyable.  I awoke in the night for about an hour so I made up for it by having a short sleep this morning.

Ray is running the course this weekend and so far it seems to be going well.  I just have to look out some dresses for tomorrow as I hope to be out to lunch before the afternoon session starts.  I just hope the models anticipate possible problems by wearing light coloured underwear and high heels.  Otherwise everything should run itself.

I have been taking some photographs of the garden but although my camera is good for snaps it has totally lost the vibrant colour of the celandines which is a pity.  Jonathan gave me a card reader as the Mac doesn’t have a slot for a memory card and I can’t be bothered to link up the camera to the computer.  It means I can upload my shots much quicker which is great.  I’d just like to log the changes in the garden which occur at this time of year.

Starsky has been enjoying some hours in the garden in the sun and skips around the run so it is obviously a pleasure to him.  By now my mother should be home so hopefully we shall get to see her this weekend.  Anna is already travelling down from Wrexham although the journey will take some hours and Jonathan will come down this evening.  Now I must survey the scene to determine what I can give them to eat.  I have resolved to do very little cooking so as not to tire myself out and the Waitrose delivery will aid me in that respect.  So far so good.

The world of medicine

Raymond came back from the chemist’s with Vick’s First Defence which my cousin had recommended for colds.  I took a dose straightaway and then stayed awake long enough to be able to take a second dose.  I had a strange cold sweat throughout the night but Raymond suggested that this might have been the body’s reactions in trying to combat the infection.  I certainly feel a lot better this morning and started on the first dose of my tablet chemotherapy.

I feel I need a degree in chemistry to balance all these tablets.  Some have to be taken an hour before food, some with food, some after, some not in conjunction with milk, you name it there’s a caveat somewhere.  However, like all cancer sufferers, we learn to juggle the pill-taking and find a way of remembering what to take and when. 

Raymond has been preparing for the course which starts tomorrow.  We have a good variety of models this weekend and the weather is promising.  It will give Raymond a chance to be with new people and he enjoys teaching the students and seeing them make progress.

We have had very warm and sunny weather for the past few days and Raymond was actually out watering the plants in the front garden which is almost unheard of normally at this time of year.  The back garden is now looking less like a neglected wilderness and three trees which were dead have been taken down.  More trees grow which means the garden is constantly changing but also shrubs have been cut back and some of the holly removed to give those trees and shrubs we do want, a chance to flourish.  I am finding it a lot less stressful than when I had to look at the garden becoming seriously overgrown and knowing I could do nothing to improve things.

I shall ring up the hospital in a minute to find out how my mother is, what they have done and what they plan to do.  No doubt it will be a different story from yesterday but we may be able to see a pattern emerging.  Fortunately, she is not a nervous patient but it must be difficult for her as she is so deaf and not everyone takes the trouble to communicate with her properly.

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I have just had a phone call from the hospital.  They have decided not to do the endoscopy after all as my mother is not experiencing any pain.  They think it might be riskier to remove the stent at this time.  This decision has been arrived at after she has spent nearly a week in hospital!

Treatment day

Today we arrived at the General Hospital at 9.45 ready for my treatment at 10.00.  I was not sure whether I was having a transfusion of platelets or whether there had been a change of mind so that I would be having intravenous chemotherapy rather than in tablet form as we had agreed.  The room reserved was not available so I went into the day ward to have a special injection to boost my white cells.  My treatment, i.e. pentamidine, was booked for 2.30 p.m. and my appointment with Dr M was 1.20 p.m. so we had about three and a half hours to kill.

They were obviously all in a complete state of chaos but fortunately, we had written off today as being one which would be entirely spent at the hospital so it was not worth grieving about.  We took some sandwiches over to the Macmillan Centre which was unusually quiet.  The staff are very welcoming, made us coffee, provided us with biscuits and plates for our sandwiches.  It is a very comfortable place to spend time and I fell asleep in a chair which I later found was a recliner when one of the staff put it into position for me.

After seeing Dr M I went to the pentamidine room to breath in a substance which helps my immune system.  As I can’t wander around the hospital, Raymond went up to see my mother to get the latest news.  She is having an endoscopy tomorrow to check whether a stent near her gall bladder is blocked or needs replacing.  She will either return home tomorrow as Raymond was told, or Friday as I was told on the telephone.  At all events she is in good spirits and was up and dressed in day clothes which is a sure sign that in herself she is feeling well.

I have a cold and I am far from happy.  Of course, there are cold germs around us all the time but all our friends and family have been so considerate about visiting if they are a touch unwell – not so the lady at the weekend with the “bit of a cold”.  I am hoping that the treatments I have had today will help me to shake it off but Raymond has gone to the chemist to fetch a few things I may need.  Of course, everything has to be checked for its compatibility with my other tablets so zinc is out.

We are always tired after a day at the hospital so we plan to relax and watch a DVD.  Stress will not help my cold I know.