Thursday April 27th
I rang Ward 10 first thing in the morning and was told that Val had had a disturbed night due to feeling and being sick.
This caused concern in the family as Val, due to her underlying health conditions, does not have a normal appetite at the best of times and cannot tolerate fruit or fibre. We were concerned that the ward staff might not be aware of the fragile ecosystem that they had on the ward and if Val wasn’t eating or drinking then she would inevitably go downhill with serious consequences.
I contacted the Macmillan nurse at the hospital and explained my concerns and she went straight up to the ward to see Val and chat to her, and subsequently the ward staff. I think maintaining this link will be helpful to Val and to the ward staff.
When I arrived on Ward 10 at 3.00 I was taken to Val who was in a side room on her own. I was slightly alarmed by this and asked the reasons behind this and was told that at the time the ward had predominately male patients and this putting Val in a side room meant she was not having to share with the men. Val later said it was to do with the fact that she had an infection.
Val has got an infection which was originally identified as fungal but this has now been narrowed down to the yeast infection Candida. Shortly before I arrived they had x-rayed Val’s chest to look for signs of the infection but all was clear as were her eyes. During my visit they started her on an antibiotic specifically for the Candida.
Her nausea seemed to be under control and she was restricted to a fluid intake. I talked to Val about this to encourage her to drink as much as she could to help her kidneys and to flush out her system. Due to her disturbed night on Wednesday, Val was tired and kept drifting off to sleep. I was happy to sit there holding her hand and reading my Kindle.
Val is still unable to focus her eyes and there seem to be a number of possible explanations for this. The doctors are saying that this is a side effect of the antibiotics that she was on – well she is off those now so we will see if her eyes improve. She has been seen by an eye specialist who cannot see anything intrinsically wrong but will refer her to an eye unit because her cataracts have developed. The other possibility is that it was caused by the anaesthetic, specifically the lubricant that the put on the pads that cover the eyes during the operation. I will take this last point up with the ward staff.
I left Val at 6.30 by which time she was ready for a sleep and she rang me at 10.00 to say goodnight.
Friday April 28th.
Probably the worst day since Val’s operation.
Val rang me first thing and she had been sick in the night again and she was on a fluid only regime. By the time I went to visit her at 3.00 the surgeon had seen her and said that she was doing very well. She had been sitting out in her chair a couple of times but was in bed and asleep when I arrived.
At about 5.00 I decided to go to the café for a cup of tea and on the way happened to meet the surgeon. He reiterated that he thought she was doing really well – in truth better than he had expected – but he said that we were not out of the woods yet. In his words the proof of the pudding would come when the catheter was removed and we discovered whether the new bladder was working.
I hadn’t long returned to Val’s room when she vomited in an amount and colour that I have never seen before outside of an 18 rated film. It was truly horrible. We are starting to learn that nothing happens very quickly on Ward 10 but eventually the one and half bowls full of bile were taken away. Val’s nurse consulted a doctor and there was talk of inserting a nasal gastro tube.
In the meantime she was told to take sips of water. Val can be frustrating in that you can get involved in circular arguments or discussions with her and this was one of those times. My view was that she needed to sip her water while to her it tasted foul, made her sick and she wasn’t thirsty. My view was that she needed to fluids to help her recover, keep her kidneys operating, while she…… I was accused of nagging her. All I want is for her to demonstrate the strength I know she has and to live up to her “tough as old boots” mantra. Maybe I am not handling this as well as I might but I am only human and after nearly three months I am starting to feel distinctly battle weary. I certainly returned home traumatised by what I had seen.
Val rang me at about 10.00 and said that the doctor she had seen earlier had contacted the surgeon who said to sit it out as in his experience he would expect it to pass. In the meantime they were going to give her IV fluids and she should continue to sip water.
Saturday April 29th.
A better day. Helen, our eldest daughter, travelled up from Oxford to see us. James, Jane and Emilia came up from London to stay the night, and Jason also visited Val.
Val sounded bright when she phoned me this morning and indeed was bright when Helen and I went to visit her. Our surgeon had been to see her in the morning and was pleased with her progress. She seemed to think that there was some slight improvement in her eyesight although she was still suffering from nausea at times. Fluids were provided by IV and she was allowed to sip water.
Helen and I left the hospital at 4.15 for me to drive her back to the station. At 5.00 James was visiting Val and was joined for a short time by Jason.
On her return to Oxford, Helen did some research on the Candida infection that Val has and having read it I can say that it is no surprise that she has it – stomach surgery, antibiotics, central line, diabetic, in ITU – and it can cause nausea, eye problems, abdominal pain, tiredness etc. So crack the infection and Val will feel much better. When Val phoned me late evening she said she had made another breakthrough as her stoma had started working.
Sunday April 30th.
The day started with a phone call from Val who, after eight hours sleep, had woken up feeling good and not just thinking about but actually wanting to eat and drink. The secret of this turnaround seemed to be that after being dormant for a few days her stoma had started to working.
After an enjoyable morning at a farm park, James and Jane went to visit Val, while Emilia and I enjoyed doing some worksheets on numbers and a bit of colouring. Afterwards I introduced Emilia to the delights of Wallace and Gromit which she really enjoyed.
Later when I went to see Val she was sitting out in her chair and soon afterwards ate a yoghurt and then some ice cream having already eaten two crème caramels! She was bright and engaged and happily talked about things outside her small side room. It was as if someone had flicked a switch.
The dressings on her stomach, around her drains etc continue to leak and had to be changed while I was there along with her nightdress.
So all in all a good day!
Monday May 1st.
Val had had another reasonable night.
During the day, at Val’s behest, I organised some visits to her from family and friends for the coming days - trying to balance visits with rest periods and meal times.
Val seemed bright and cheerful when I saw her. The nurse attending to her, during the second half of my visit, told me that next time I visit I must put on an apron to protect myself due to Val’s infection and these were available just outside her room. She seemed surprised when I told her that nobody had previously told me that I needed to. I struggle to understand how putting a plastic apron will protect me. Surely if Val is infectious then I should have the full kit on - face mask, gloves etc. The nurse also said that Val was in a room on her own due to the infection so I pointed out that her colleagues had only told me that she was in that room because all the other bays in the ward were occupied by men. Confusing?
Val is now starting to be interested in food and we asked the ward sister if she could arrange for one of Val’s packets of chicken soup to be made up or tell me where I could go to do it. When it arrived Val enjoyed half a mug followed by a crème caramel, some ice cream and jelly.
From a visitor perspective the Bank Holiday meant that at 4.00 there was nowhere to buy a drink or get anything to eat!
Tuesday May 2nd.
The day started well with Val being seen by the doctors and her surgeon and all were very pleased with her progress.
It was as if the hospital had woken up from a deep sleep as with the May Day weekend over normal service was resumed. Val was visited by the physios who had her walking around her bed. They would like her to walk up and down the ward outside her room but there seems to be concern over her being infectious. There is no doubt that Val has an infection, Candida, and she is receiving very specific antibiotics to deal with it. The issue is that until yesterday nobody had discussed the issue of infection with me and there is still the point that she is the only woman patient on the ward and therefore is in a room of her own. It is not clear which of these was the driver for her being in a separate room.
I arrived at visiting fully prepared for putting on an apron but guess what? There were none outside her room! It is also true to say that very few of the staff who entered her room during visiting wore an apron.
Anyway, Val was taken for an x-ray of her new neo bladder and a doctor who was with her confirmed that her new bladder, constructed in her rectum, was healing well with no sign of leaks.
A big problem was the fact that once again her stoma was not working. This means that she has discomfort – akin to constipation – and doesn’t feel inclined to eat or drink. This is not a new situation for Val and is one that she has faced frequently since 1990 but is of concern in the present circumstances as she needs to eat and drink for her recovery. It also leads her to feel sick and indeed to vomit. I told the nurse about this as I left at the end of visiting so we shall see. Val is taking a cocktail of drugs and it seems that in doing so she is living up to the mantra that the solution to one problem becomes another problem.
Wednesday May 3rd.
Val’s stoma is still not working so she does not feel too much like eating and drinking. It is ironic that the one part of her abdomen, her bowels that the surgeon did not touch, is the one part that is being difficult. Consequently Val still has bouts of nausea.
Meanwhile on the infection front, Val now has a large sign outside her room announcing to those interested in reading it, that she is infectious. However she is not so infectious that the physios couldn’t get her walking, with the aid of a stick, up and down the ward. I did ask her whether someone had been walking in front of her ringing a bell.
My morning started by ringing the Macmillan nurse at the hospital and as a result she went up to the ward to see Val. Her take on Val’s infection is that the staff has over-reacted. Val’s infection is in her blood making it a tough one for her to spread and so she thinks that the ward staff have seen the word “infection” and a set protocol has kicked in. The link to Macmillan is and will be useful going forward where Val is concerned. Val received advice on aids which she found helpful.
During the morning Val was also visited by the diabetic nurse specialist and the specialist urology nurse, so she was tired when I visited with Lorna our youngest daughter. Lorna left at about 4.30 and Jason called in on his way to work at about 5.00, while I left at about 6.30.
And so ends Val’s second week in her march to recovery.
