BELVOIR PARK HOSPITAL – WEEK 2 AS AN INPATIENT

 

On Friday 25/04/03, Doctor S told Ruth that the MRI scan results showed that the bone in the middle of her spine was softening and that it was this problem that was causing all her pain.   He then told her that she would receive 5 days radiotherapy treatment, starting that day.   For some reason or another, Ruth did not seem to think that this bone problem was linked to her cancer.   However, I felt sure that the cancer must have spread to her spine and that this was the reason why they were going to use radiotherapy on her.  But as long as she was happy, I did not care.

             With regard to her mental state, she seemed very cheerful.   As for myself, I was extremely worried about the loss of function in her right hand and also whether this problem would spread to her left hand as well.   I thought that it would be terrible, for someone as independent as Ruth, to lose the use of both hands, especially as Doctor C (the senior doctor in charge of palliative care and pain control) had said that she could not guarantee that full functionality would return to her hand(s)!

 

[Note: I learned subsequently from Doctor S that the MRI scan revealed extensive bone disease all the way down the bones in her spine and that it was this cancer in her back that was causing Ruth all her pain]

 

On Saturday 26/04/03, Ruth seemed as if she was drunk, when I arrived.   Then when Mandy and David arrived shortly afterwards, it seemed to get worse with her talking gibberish, falling asleep, dropping things etc.   It was obvious that she was overdosed on diamorphine and diazepam. 

Mandy and David left after midday and Ruth went to sleep just after 2.00 pm.   She slept soundly until 7.00 pm, when her very close friend Maggie McCauley and I woke her up.   She seemed to be back to her usual self and remembered being confused etc.  Unfortunately there was still no power in her right hand and her left hand was affected too.   I really hoped that this problem would not get any worse.

With regard to all her other symptoms, her pain seemed to have lessened, she was a lot more mobile on her feet and was in a cheerful frame of mind, cracking jokes and talking to all and sundry.

 

Sunday 27/04/03.  When Mandy and I arrived at the hospital, we found her in a very dopey and confused state and it was obvious that she was completely drugged up.   When Mandy left after midday, Ruth went to sleep.   Ethel and Gillian arrived about 3.00 pm, but did not wake her up.   At around 5.00 pm, a nurse decided that it would be a good idea to wake her, because she wanted her to be able to sleep that night.   When Ruth’s tea arrived, she only picked and poked at it, eating virtually nothing.   She was still very dopey and remained like this until towards 10.00 pm, when she perked up a little and was brighter.

            I remained extremely concerned about her hands.   Her right hand was virtually useless and the left one was only about 50% effective.  I still hoped that she could recover the use of them both very soon.

            The poor wee soul was relatively cheerful and optimistic about things.   I remember wishing that I could feel the same.   But the decline in her had been so great and so rapid, that it was hard to see how she was going to survive beyond a few months.

 

            [Note: I learned subsequently from Doctor S, that when someone is on chemo that is not working, their decline tends to be gradual.    However, as soon as they come off chemo, their decline usually becomes a lot more rapid, which is what happened in Ruth’s case]

 

On Mon 28/04/03, Gillian gave me a lift to see Ruth and, when we got there, she was in very good form.   She had had a good night’s sleep and was very articulate, humorous and mobile.   Furthermore she did not appear to be in any pain.

Around about lunchtime, Colin Ellis came to visit Ruth and he had a wee present for her – lovely roast beef sandwiches that Ruth enjoyed so much later on.   These roast beef sandwiches began to appear on a weekly basis and were a real delicacy, which Ruth used to really look forward to.

            In the afternoon, Doctor C came to see Ruth and during the conversation, Ruth asked her if she could give any indication as to when she could go home.   The doctor replied that before they could release her, they would have to get her drugs right and make sure the radiotherapy was working.   She then went on to say that they would also have to make sure that our home would be a safe environment for her and that they would require sufficient time to arrange all the additional help etc that she would need.   She then asked Ruth if she would consider the ‘halfway house’ option, which would entail her going temporarily to the hospice, where they would prepare her for going home.   It was the wrong thing to say, because as soon as Ruth heard the word hospice, she went to pieces and cried.   She then asked the doctor if all this meant that she was going to die and the doctor replied that with diseases that are irreversible, there was little hope and that unfortunately the spread of her cancer had put her in this category. 

After such a lovely, cheerful, happy start to the day, it was tragic to see poor wee Ruth suddenly so upset.   Furthermore, she remained very depressed until Ida and Bill arrived, when she perked up.   Ida and Bill were truly magnificent, coming up from Lisbellaw so regularly and being so good and kind to Ruth.   I remember with some pleasure the sight and sound of Ruth and Ida laughing and joking together.  Then Mandy and David turned up and this made Ruth feel even better, because she loved her children dearly and always enjoyed their company so much.   It was really good to see Ruth more cheerful again.

            On the way back home that night, Mandy told me that when Colin had visited Ruth at lunchtime, she had told him that she had been informed, that she only had two months to live and Mandy asked me if this was true.   I had no option but to tell her and David the whole truth about Doctor S’s 4-9 months life expectancy estimate, which Ruth had hidden from them, because she had not wanted to spoil a wedding they had been going to, only a couple of days after Doctor S had dropped his bombshell.

            I remember hoping that poor wee Ruth would not be too depressed the next day by what Doctor C had said.   Although it had obviously been unintentional, the doctor had really upset Ruth by mentioning the word hospice, which, as far as Ruth was concerned, unfortunately had a kind of awful stigma attached to it. 

 

Hospices are undoubtedly really good places, where the terminally ill receive the best possible care and attention.   Furthermore, even if someone is terminally ill but wants to go home, the staff in the hospice will do all they can to help that person achieve their goal.   So, as a result, the word hospice is therefore a very reassuring sort of word to the relatives of those dying and also to those brave souls, who have come to terms with the fact that they are going to die, probably in the hospice.   But sadly, for those poor terminally ill souls, who are coping with their condition through denial, being offered the option of a place in a hospice is not what they want to hear and only brings home to them the reality of the fact that, barring a miracle, they are going to die, probably in the hospice. 

Ruth never really felt that she was going to die and always had this hope that she would, somehow or another, survive her cancer.   It was of course a form of denial, but it helped her cope with the situation.   It meant of course that Ruth could never readily accept palliative care or the option of a hospice bed.   To accept palliative care or go into a hospice meant accepting that she was going to die and, as far as she was concerned, she was not going to die.   I wonder how many poor souls like Ruth have given up their only real chance for the best possible care and attention, simply because of their fear of the meaning of that word hospice.  It is such a pity that the people who run hospices seem to ignore the ‘coping by denial’ approach and cannot use some other term that would not cause so much distress to people like Ruth. 

 

The simple fact of the matter is that Belvoir Park Hospital was not really the ideal place for Ruth to be in.   This is because it is basically a treatment hospital, where ‘low dependency’ patients come to receive chemotherapy and radiotherapy.   It struck me that it operated on a kind of a conveyer belt system, that was totally geared for accepting people for treatment on Monday and discharging them by Thursday or Friday.   It therefore did not seem to me, that it had the systems in place for dealing satisfactorily with terminally ill people like Ruth.   With regard to the nurses, I had been very impressed by their performance when Ruth had first arrived in the hospital and I thought that the most of them were very friendly, competent, helpful and nice throughout Ruth’s time in Belvoir Park Hospital. 

Ruth was an extremely independent person, who did not want to be a burden on anyone and tried her best to remain as self sufficient and as unobtrusive as possible.   But despite all that, there did seem to be a lack of real nursing care for terminally ill people such as Ruth, who had no power in her right hand and a limited amount in her left and whose ability to get in and out of bed and also move around was severely limited.   Although Ruth could not cut her food, she was never helped in this respect except by the domestic staff, who were extremely kind.   Furthermore, in the four weeks she was in Belvoir Park Hospital, Ruth was only helped once by a nurse to wash herself and certainly never had a bath (which she used to love so much).   As for pill taking, there was no supervision at all.   Also there was this rule that nurses could not lift anyone who had fallen without using a hoist.  This apparent lack of care was not the nurses' fault, it was just that the whole place was geared up to handle ‘low dependency’ patients and, as a result, certain procedures seemed to be lacking.

It was also quite difficult ever to find out what exactly was going on, but a lot of this is down to the fact that doctors can only speak to relatives about a patient, if they have that patient’s permission.

 

[Note: I subsequently learned that a “palliative care pathway” is being introduced, which will involve a lot of additional training for nurses in dealing with terminally ill patients such as Ruth]

 

On Tuesday 29/04/03, Billy and Ethel gave me a lift in and, when I arrived on the ward, Ruth was extremely dopey, because they’d had to sedate her to enable her to undergo the radiotherapy treatment.   They had also given her a drip infusion to disperse the build up of calcium in her system caused by the cancer attacking her bones.   However, after a while, Ruth perked up a great deal and was in good form.   She sounded a wee bit slurred, but she put this down to a fungal infection in her mouth, that was giving her little ulcers on her tongue.   But thankfully, she did not seem to have much pain and, furthermore, there seemed to be some movement back in her right hand fingers. 

            In the afternoon, Ruth went to sleep during another anti-calcium drip infusion and slept for over 4 hours.   But because Bill and Ida had driven all the way up from Fermanagh to see her, I decided to wake her up about 7.00 pm.   Once again Ruth seemed to be in good form.   She really was a remarkable person, for in the short time that she had been in that hospital, she had become very popular with nearly everyone, staff, patients and visitors– she was certainly very much a people person.   For example, the domestic staff grew to love her and would bring her meals into the smoking room, cut and butter her toast, seek her out at meal times to ask her what she wanted and even prepare something special for her.  They were all so kind to her.  They were fantastic!

 

SAINT PAUL, THE DOMESTIC WHO WAS SO GOOD AND KIND TO RUTH

 

In the background is Wendy, a really lovely, kind and efficient nurse

 

            At one point, I talked to Edna Wilson, a McMillan nurse, about Ruth going to the hospice rehab unit and we agreed, that because of Ruth’s continuing aversion to the word ‘hospice’, nothing more should be said until Thursday, by which time we hoped she would be more open to suggestions about going to there.

            Pamela Martin arrived and because Bill, Ida and her were going to be there for some time, I decided to take a lift home with Billy and Ethel and left a wee bit earlier than usual.

 

On Wednesday 30/04/03, Ruth was quite dopey when Mandy and I arrived.   She had already had quite a busy morning, what with visits from Val English, Edna Wilson and the physiotherapist.   But she seemed quite bright, although she was still speaking with a rather slurred voice.   In the afternoon, she had a visit from Doctor H, who subsequently told me that they were in no rush to discharge Ruth and that they wanted to make sure her medication etc was okay before releasing her.   Ruth then had to go for her radiotherapy, which caused her a bit of pain. 

            With regard to the visit by Edna in the morning, they had apparently talked about Ruth going home and arrangements were being made for an occupational therapist to come and see Ruth the following morning to discuss this plan further.   I gathered from Edna that they would have to do a kind of survey on our house and then subsequently fit whatever would be necessary to make the house a safe environment for Ruth (e.g. handrails going up the stairs etc).   It was quite clear that this sort of survey/work etc would take a little bit of time to arrange and carry out etc and, as a result, I thought that it would definitely be better, if Ruth went to the Hospice Rehab Unit while it was all being done, which I hoped would help get rid of her fear of hospices (I felt that it would be better psychologically for her to go from the hospital to the hospice before reaching home, rather than going directly from the hospital to home, because I thought that if she came straight home and then had to go to the hospice, she would be absolutely terrified!)

            Corrine, Alan and Richard came in the evening and Ruth really enjoyed their company.   It was good day all round, especially as the physiotherapist had indicated that her right hand would recover quite soon.

 

Thursday 01/05/03.   When I arrived in today, I was very disappointed to find Ruth in a poor state, with her hair all sweaty, her eyes half shut and her voice slurred.   I was quite surprised at this, because she had been taken off sevredol and diazepam and had also had her diamorphine reduced in preparation for her going home and I had assumed that she would, therefore, have been a lot brighter etc.   I was also very disappointed to learn that she had a chest infection, which was worrying.

While I was there, Ruth was seen by Fiona Madden, a McMillan nurse, out in the garden and although Ruth spoke relatively articulately and sensibly, she seemed very dopey.   She was then seen by the occupational therapist and the physiotherapist and she was again articulate and sensible, but very slurred and dopey.   She also seemed very weak and fragile and totally exhausted by the whole day.   Furthermore, even though she was cheerful and chatty in the smoking room, she was not her usual self.

            When David, Mandy and Willie arrived, she was very dopey, slurred and almost stupid.   David subsequently said he thought she looked very bad and that she had, at most, only 2-3 months to live.   When we left her, she was in good form mentally but very, very tired.

            Although she had made it clear that she was determined to come home sometime the following week, I really did doubt if she would be up to it, going on the way she looked that day.   It all seemed to be an unrealistic pipedream.   But I decided that if she really wanted it to happen, then I would go along with it.

            I hoped she would be a lot better the next day.

 

To read about Ruth’s third week as an inpatient in Ward 8B, Belvoir Park Hospital, click on

WEEK 3 AS AN INPATIENT

 

To return to the start of this section, click on WEEK 2 AS AN INPATIENT

 

To return to the very start, click on RUTH ELLIS