Thursday May 11th.
The “Moving on from Critical Care” leaflet has a section on mood changes which states:
“It is a normal reaction to illness to experience mood changes. Feeling “down” or depressed is also common; this will improve with time…”
And so that was what I faced when I visited Val at 3.00, a totally different woman to the one who had spoken to me on the phone that morning. Val was tired having had a restless night and then when she had fallen asleep after breakfast she was woken up so that the staples in her incision could be removed. She looked disengaged and when a dietician came to see her it was apparent that she was once again seeing food as the problem rather than the solution.
Patients can be seen in hospital by physios, dieticians, stoma nurses, diabetic nurses and other nurse specialists. Not all patients will need to see these specialists but some do but if “feeling down or depressed” is so common then I think it would make sense to have therapists or counsellors who could come to a patient’s bedside for a chat. The leaflet in the section on mood changes goes on to state: “… but please do not hesitate to discuss your concerns with the Nurses, Doctors or Outreach Team” however a patient may not have the self-awareness to realise that they need that help or intervention. It would surely be better for the doctors or nurses to make that referral as in reality they would not have the time to engage in a counselling session with a patient. Yes it would mean an additional resource but it may well prove cost effective if it helps patients recover more quickly. Just a thought as although it may be the abdomen that has been operated on, it is undoubtedly the case that the head will play an important part in the recovery. Such an intervention could help a patient locate the switch that will mean their world changes from a glass half empty state into one where the glass is half full.
I am not a trained therapist or counsellor and so I was less than sympathetic and opted for tough love – again. I reminded Val that the operation had been a success and had given her the chance of a real future that had only looked bleak three weeks ago and therefore she had much to look forward to. If she was feeling miserable and down then she needed to be aware that her mood could have an effect on my mood as well. It might well have been a horrible few months for her but what about me? What about our family?
To try to lighten the mood, I had brought a wheelchair up to the ward to take Val down to the cafeteria and to take her outside for a breath of air. Tell me, how is in 2017 that hospitals can have wheelchairs that go in a straight line and do not need to be wrestled around corners? I had brought this particular wheelchair up to the first floor via the lift and it had struggled to join me like a person avoiding being kidnapped. I was suitably chastened when a passing nurse told me that it was the type of wheelchair that needed to be pulled backwards. That made straight line travel easier but turning was an experience.
Val enjoyed feeling the sun and a slight breeze on her face once we had moved away from the smokers, many of them patients, clustered near the entrance. These morons either could not read or simply didn’t care as they lit up standing or sitting in their wheelchair by a sign that clearly said no smoking in the hospital grounds.
Afterwards we went to the cafeteria and Val enjoyed a coffee and a sausage roll. Now I am not a physio either but when Val was back on the ward I suggested that she stood up every fifteen minutes My idea was that she stood the first time for twenty seconds and then increased it my five seconds on each subsequent occasion. I hoped this would help her in terms of exercise but would also give her something to do and think about.
The Estimated Discharge Date is still recorded as May 13th so we will see.
Friday May 12th.
Another roller coaster of a day!
Val rang first thing and although she had slept reasonably well she had been sick. Anyway later when I was picking up some shopping in Morrisons, Val rang to say that she had been seen by the surgeon and they were going to prepare her for discharge either that day or Saturday.
I had barely got home and begun to put the shopping away when Val rang again to say that the doctors wanted her to have a scan or x-ray on her stomach to determine how much fluid was there before they took the drain out so it was unlikely that she would be out before Monday.
When I saw Val at 3.00 I thought how upsetting it was to say her. She has lost so much weight and is just skin and bones and mentally she is in a bad place staring vacantly into the middle distance and not engaging. I again took her out in a wheelchair – a better forward facing model, the difference between a horse and cart, and a F1 racing car – and she had a coffee, but no food, from the cafeteria.
The sense of regression was confirmed when a nurse told us that Val was once again going to have IV fluids. It’s just like Groundhog Day!
There are only so many ways that I feel that I can try to kick start Val mentally and yet of all of us, she should be the one best equipped to deal with this having had major surgery back in 1990 that left her with a stoma, and the numerous occasions when she has had to deal with her stomach playing up and yet that seems not to be the case.
Visiting is becoming a trial and I am not sure my being there for three hours a day is doing either of us any good. I find that when I am there at the moment I can feel my levels of frustration, and yes anger, mounting and when I leave I am as depressed and down as Val is. Maybe the answer is to visit every day but to spend less time there. All I know is that something has got to change.
Later that evening I went to supper with some friends that helped to restore my sanity through doing something normal for a few hours.
Saturday May 13th.
Not a good day as it started with Val telling me that she had been very sick in the night and again when she woke up. She had raised with the doctors when they came round the matter of them contacting her gastro-neurologist in London and from the response it was clear that they hadn’t and said that in any event it was now Saturday and they wouldn’t be able to contact him until Monday. Val then pointed out to them that he does respond to emails fairly quickly.
So, already feeling anxious and frustrated I was now starting to feel angry and the suspicion was forming that professional pride may be stopping the contact with the gastro-neurologist I decided therefore that I needed to rattle a few chains and so I rang the ward and asked that a doctor either rang me before 2.30 or came and saw me on the ward from 3.00 onwards. I eventually spoke to a sister who had been away for three weeks and had only met Val that morning and I felt that this was someone who I could build a rapport with and get on our side. She listened, seemed to be on the ball grasping the complex nature of Val’s underlying health conditions and the question of contacting the gastro-neurologist. She said that she would follow my points up with the doctors and ensure that one came to see me later that afternoon. It seemed to me that a cycle of IV fluids, food, vomiting, blocked stoma, more IV fluids needed to be broken. It was like Einstein’s definition of madness, doing the same thing every time and expecting of hoping for a different outcome. Clearly something different was need and although the gastro-neurologist may not have an answer there was a good chance that he would and therefore I think he needs to be brought into the game.
When I arrived on the ward I went to see the sister who said that she could understand why I was so concerned. She had weighed Val and at 52kg (8.1 stones) it meant that she had lost some 6kg (0.9 stone). One of the things that the sister had done after my phone call was to get the catering manager to come and see Val and for lunch she had eaten half a bowl of pasta in tomato sauce followed by a bowl of custard. The sister said that she would keep bleeping the doctors to ensure that one came to see me.
Val was asleep when I entered the ward and she was once again hooked up to a drip that was providing her with fluids. Eventually she sat out in her chair and enjoyed a game of rummy with the cards that I had taken in.
When the doctor came, the sister said that we could use her office and although he said at the outset that he was only the duty doctor with no specific knowledge of Val’s case, he listened and it made me feel better to voice my concerns. At his suggestion, I asked the sister to arrange an appointment for me with the surgeon.
Visiting has become something of a trial and I had resisted going on a pre-arranged visit to London with friends out of a natural sense of wanting to see Val to support her. However, being the sole visitor for three hours at a time has started to wear me down and I am starting to become as depressed as Val so we are not necessarily helping each other at the moment. Luckily James has said that if Val is still in hospital then he will come up on Friday to visit Val and give me a break which I have agreed to but even writing or saying the words “give me a break” does not sit easily with me. The truth though is that I know that without a break I too will go downhill. I am also going to get friends to start visiting Val as well.
After I had left Val, I stopped at the Macmillan centre and picked up a couple of booklets that I thought might be useful for Val and decided that rather than take them in tomorrow I would pop back and give them to her. I got to her bedside just as she was being very sick which was equally distressing for both of us. I think she had known that she was likely to be sick and had been holding on and therefore had not tried to get me to stay when I said I was leaving. Thinking I was safely out of the way she was then sick and I think my unexpected reappearance added to her distress and she was upset that the efforts to eat during the day had gone to waste. I tried to reassure her that she would have absorbed some nutrients from the food.
Sunday May 14th.
Val had again been sick overnight but in the end this was not such a bad day.
I had hoped that Val’s inherent desire to look good at all times would mean that as friends were to visit her she would make an effort, and so it proved. She had showered, with help from the nurses, and had brushed her hair and was tucked up in bed having a nap when I arrived with our friends Rod and Liz.
It was noticeable that Val’s voice sounded weaker and wavered a little but whether this was genuinely caused by her frailty or the ongoing soreness of her throat and oesophagus I don’t know but I will speak to the surgeon about this when I see him.
Val enjoyed seeing our friends and when we left another friend arrived to see her.
I felt better having begun to share the visiting load and it was very enjoyable to have lunch with Rod and Liz and the enjoyment was increased as Crystal Palace beat Hull City to secure Premiership status for another season!
Monday May 15th.
Val rang and said that once again the doctors were talking about her coming home saying that they thought she would be better off out of hospital. Encouragingly she had not been sick overnight.
I had a phone call in the morning from a district nurse wanting an update on Val. Apparently she had rung Hospital A and was surprised when told they didn’t have her there. I told her that Val was in Hospital B and gave her a brief summary of what was going on. She said that I needed to ask the ward to make a continence – yes I checked and she did say “continence” and not “incontinence” – referral as this would speed up the process of getting any aids she may need.
When I visited her it was to find that her stomach drain had been removed. This does of course signify some progress but had been done despite the doctors saying last Friday that they wanted a scan/X-ray of her stomach to determine the amount of fluid there before removing the drain.
I spoke to her nurse about the continence referral and got a blank look. I suggested that it might be sensible if she or a colleague rang the district nurse to discuss what was exactly required. I saw the nurse later who said that a trainee nurse had been despatched to another ward who were more familiar with this matter and when she returned the advice was that they should ring the district nurse!
Val seemed a little shaky and said she was cold and her regular observations showed that she had a temperature. We talked at some length about what she would need when she came home and how we would manage and I told her not to worry as we would sort it all out.
Tuesday May 16th.
The worst day!
I was meeting two friends for lunch and one, Martin, was going to visit Val with me later that afternoon when she phoned to tell me she was not feeling too good and it had been suggested that I delayed visiting to allow her to sleep. It also transpired that she had felt faint going for a shower and had had to be taken back to her bed in a wheelchair.
Earlier she had told me that the doctors were at last going to email the gastro-neurologist in London.
I decided that I really needed to see one of the team looking after Val and told Martin that I didn’t think Val was up to seeing anyone. I arrived at the ward at 2.50 and asked to see the ward manager and outlined my concerns:
The ward manager said that she would look into matters and arrange for one of the team to see me and I said I was prepared to wait as long as necessary.
Shortly afterwards Val was hideously sick with the liquid vomit coming from both her mouth and nose. The upshot of this was that it was decided to insert a nasal tube to drain the “nasties” away and stop the vomiting. In addition a junior doctor told us that they were going to scan/x-ray her stomach to see if there was a blockage and if there was then she would be passed over to the general surgeons and the worrying prospect of further surgery.
Val was due to be visited by friends on the following day and she asked me to put them off which I did.
Eventually, at about 7.00, I saw the registrar who was confident about the surgery and said that the issue was getting her stomach to work. Apparently she had lost some 3 litres from her stoma that morning and they had given her something to slow things down which inevitably meant that by the afternoon it had stopped working. So they had stopped the morning drug and given her something else. I raised the issue of a potential blockage but he felt that there was nothing to worry about in that respect because they had not operated on her bowel which could for example have caused a narrowing.
He had sent an email to the London gastro-neurologist that morning based on the situation at the time but would update him by events of the afternoon. I asked whether they could feed Val in the short term via a nasal tube or TPN and he agreed that it would be a good idea and would raise it with the surgeon.
I eventually left the hospital at 7.30 shattered, anxious and not a little fearful of the outcome.
Wednesday May 17th.
It was another difficult day.
I couldn’t get an answer from Val’s mobile so I rang the ward. The doctors were doing there round and so they would get Val to ring me after she had been seen. When she finally rang I could barely hear or understand her due to a combination of the nasal tube and a sore throat. Worryingly she was also complaining of breathlessness and being cold. Concerned, I rang the ward again and spoke to her nurse who said she would go and do Val’s obs and find out what the doctors had said and would I ring back in half an hour.
When I rang back it was to discover that Val had not mentioned this latest issue but her chest was clear both from an earlier x-ray and having been listened to. The doctors had prescribed an anaesthetic spray for her throat.
During the morning I was encouraged by Jason to send an email myself to the gastro-neurologist in London which I did and he replied within 11 minutes and also gave me the name of the doctor in charge of the Nutrition team down there. Given that I was to see the dietician later that afternoon this was useful information to take to that meeting and pass on.
I was worried when I visited but pleased that I had taken her bed jacket as I could see her shivering from the door to the bay. I fetched the nurse who confirmed that Val did have a temperature by which time I had heard her phlegmy cough which it appeared none of the staff had heard. Straight away she was given IV paracetamol which was good because as I said to the nurse the next thing I am going to be told is that she has pneumonia!
I once again said that I wanted to see one of Val’s doctors and it was noticeable that there did seem to be a lot of activity around her case which I took as a positive.
The meeting with the dietician started by me asking the obvious question – when and how were they going to get some nutrition into Val? My view was that this needed to start without delay as there had been too many cycles of wait and see and she could not stand to lose more weight. After some discussion it was agreed that this should start but that they would need to do a scan first to determine whether Val’s gut was working as this would determine whether the nutrition would be delivered by a nasal tube or straight into a vein.
In the end they decided to deliver the nutrition into a vein and this was arranged and started very quickly. We were both pleased about this because it took the pressure off Val in terms of being presented with a plate of hospital food that she really didn’t want to eat, would reduce the chance of vomiting and give her throat and gullet a break.
I eventually saw a registrar, not the one that I had seen the previous day, who did though have some knowledge of Val’s case and I flagged up my concern that the surgical team may have reached the limits of their expertise, given Val’s underlying health issues and he didn’t seem to disagree but he felt it would be useful if I spoke to the surgeon himself – and hopefully this would be arranged for tomorrow.
As I was explaining all this to Val, another one of the medical team came to see us to say that the blood tests and her temperature showed that Val had an infection. The concern was that the infection was being caused by pools of fluid in her stomach that with no lymph nodes now they were not draining away. I was concerned to hear this and pointed out that we had been told before the previous weekend that Val’s stomach drain would not be removed before her stomach had been scanned to determine the amount of fluid in it and yet on Monday it had been removed without a scan being done. I received no comment to that. The scan was also to see if there was a blockage in Val’s bowel.
James had been anxious all day to speak to his mum and had rung numerous times when either I was talking to medics or ward staff or they were doing things to Val. Eventually he was able to speak to Val and the reason for his persistence became clear when he told her that she was going to be a grandmother again. Hopefully this will raise her spirits and help her recovery.
As I was leaving they were getting ready to take Val for her scan.
