Thursday July 6th.
This will be the last week of this blog and while on the one hand I am relieved, I am also disappointed that Val’s recovery is so slow.
Still, a new week and that must mean another visit to hospital.
I had been out at a meeting in the morning and when I got home at about 13.00 Val was complaining about her left leg being swollen and aching from her groin to her toes. This was making walking difficult for her. I suggested that she should contact our GP surgery and got an “oh Dave” for my troubles. Val said that she would tell the District Nurse when she came tomorrow. I responded by saying that it might be better not to leave this until Friday when it becomes more difficult to contact people but I said it was up to her – it was her leg!
Shortly afterwards Val rang the surgery for an appointment but was told that the duty doctor would call her and when they did they said to go to the surgery at 15.10. It turned out that we were seen a few minutes early and that became important as we had to get to the DVT Assessment Clinic at Hospital A by 16.00. The GP felt that Val ticked a number of the boxes that would indicate a DVT/blood clot and it needed to be checked out. We left the surgery car park at 15.25 and arrived on the hospital car park at 15.50 – I was impressed with that and happily smiled at the cameras that took our photo as we drove along – only joking!
We were seen quickly and Val had a blood test and then we had to wait in A&E for about an hour. The blood test showed that Val might have a blood clot but that needed to be confirmed by an ultrasound scan and the earliest that could be done was on Monday at 11.00. In the meantime Val was given an injection to thin her blood and given three syringes to bring home so that she could inject herself daily until the scan. The presence of a blood clot may help to explain her breathlessness.
Val spoke to Jason and James on the phone and both seem unhappy at her seeing a therapist. This I’m sure is something to do with the narrative that Val has been giving them that she is alright and of course when they see her she puts on a bit of an act. They don’t see the reality of her recovery because both seem to think that she is doing well. I think we may well have to agree to differ.
The issue with her leg is going to curtail her walking and exercises for a few days but she did at least exceed the 2,000 calories target again.
Friday July 7th.
I think there may be a connection between the possible DVT and Val’s breathlessness as that seems somewhat better today.
The main event of the day was Val’s visit to the therapist and from what she told me afterwards I think she found it helpful. The therapist said that she was suffering from reactive depression – apparently the easiest form of depression to cure – and had assured Val that she would get better but was not able to give any sort of timeline. A further appointment was made for two weeks’ time.
Reactive depression is a form of clinical depression caused by the individual’s reaction to a life event(s) and is normally a short term condition. A common symptom may be a change in the individual’s appetite as a coping mechanism may be the avoidance of food. We therefore now have a label for Val’s situation and in this I can see a danger as this could, and I am not saying it will, mean that the individual has something to blame “I’ve got reactive depression” - and therefore may be even less inclined to help themselves. Hopefully that is where the therapy will help.
This whole story started following lunch with four of our friends and we got together in the evening for a BBQ. It was a case of good company and good food and our friends, who were fully aware of Val’s situation, made it easy for her where the food was concerned. It was a really enjoyable evening which we all enjoyed.
The upshot was that we didn’t get to sleep until midnight and we both enjoyed getting back to normality.
Saturday July 8th.
The late night – alright by most standards it wasn’t late but it was if you were used to going to bed around 21.00 – and it took its toll as we were both tired. Consequently we agreed to have a day at home and I used the time to do a little gardening and caught up with the washing.
Val seemed, despite her tiredness, better in herself. Jason came round and I think he had an agenda as he took time to talk to us individually and together. He was very even handed but the sub text was “cut it out the two of you!” In essence he felt I needed to lower my expectations a little to 85% and Val need to make more effort - I gained the impression that he and James had had a chat and Jason had agreed to talk to us. Much to my surprise he didn’t rubbish Val going to a therapist and said that anything that helped was a good thing. He is going to take Val to her scan on Monday and agreed to have a chat with Val about the surgeon’s comments (see earlier discussion of this) that seem to have unsettled her. Like me he sees the comments as positive.
Just as Jason left, our friend Katherine came to visit and having sorted out coffees I retired to the dining room to read the paper while they talked.
As we were tired we went to bed at around 21.30
Sunday July 9th.
We woke up to a glorious day. As we hadn’t gone out yesterday, Val had been very keen to go out today but she was tired and therefore was tempted to delay our outing until the afternoon. This was a “make the effort” situation and I was reminded of something a friend, a runner, had told me some time ago that the hardest part of going for a run was actually going out of the front door. I didn’t say anything to Val but she decided that we should go and as a result we had a very enjoyable day – enjoying the recreation ground, the river, a charity regatta, coffee overlooking the river, an ice cream – which I am sure did us both good.
When we got home Val went for a long nap and I pottered about and finished reading the paper. And then a wonderful thing happened. On Saturday evening we had been invited to a neighbour’s 50th birthday party at the town’s boat club. As we had been out on Friday evening I had given our apologies and then we had a knock on the door. It was our neighbour and he had brought a bottle of prosecco from the party to help cheer us up at what he seemed to understand was a difficult time. Wonderful!
The coming week is full of medical appointments:
Monday – Val’s blood test followed by an ultrasound scan on her leg at Hospital A. Fortunately from my perspective Jason will be taking his mum to the hospital and this will give me a welcome break and an opportunity to do the weekly shop.
Wednesday – Val’s outpatient appointment with her surgeon at Hospital B.
Thursday – We both have dental check-ups.
Friday – Val has an appointment with our GP.
And complicating matters slightly we are having the windows replaced in our house.
Monday July 10th.
The first business of the day was taking Val for a follow-up blood test at our GP surgery, and then Jason was to take her to Hospital A for the ultrasound scan at 11.15. This gave me a breathing space to go into town and do the weekly shop on the way back.
Jason and Val had an interesting time at the hospital as first of all they were not on that day’s list of appointments – yet another hospital administrative cock-up. The scan showed that Val had a significant blood clot in her left thigh which I think had been building up there for some time. They were then directed to the Ambulatory Care ward where they sat for ninety minutes watching those who had come in after them attended to. It was only when Jason went to the reception desk that he discovered that Val had not been logged onto the system and was therefore invisible to the staff. Val was seen soon afterwards and was put on an extended regime of daily injections to thin her blood.
They finally got home at about 16.00 and Val was very tired. When Jason left she went off to bed for a nap that lasted two hours. She was still very tired when she got up and I noticed that her breathing was once more noisy and fast and she seemed very thirsty. We were both tired and went up to bed at around 21.15 and Val then spent the next hour trying to reset up her insulin pump as she said her readings were high. This is something that she has done dozens of times but it was as if she had never done it before. I really couldn’t understand what I was watching - it was almost pitiful but I couldn’t work out whether the problem lay with the machine or Val who seemed confused and/or was having trouble reading the pump’s screen.
Val eventually got it fixed but then at almost hourly intervals, usually just as I was dropping off, I became aware that she was fiddling with her pump again, the bedroom light would be on, drawers would be opening and she would be getting in and out of bed. I lasted until 01.30 and particularly with the window fitters coming the next day, I went downstairs to try to get some sleep.
Hindsight shows that I missed a couple of important signs of the seriousness of what was going on – her thirstiness, her confusion, her eyesight and the high blood sugar levels. I will try to explain my thinking about these.
Val’s thirstiness – all through this process she had been encouraged to drink and as she had previously had to be encouraged/reminded to drink I was pleased to see her drinking plenty.
Val’s confusion – I had put this down to her general fatigue.
Val’s eyesight – this has been getting worse of late with her being referred for her cataracts that were developing more noticeably.
Val’s high blood sugar levels – I put this down to either the machine not been set up properly/ broken or problems with the new needle. Historically whenever she changed her needle there was quite often a problem.
Tuesday July 11th.
I can’t say that I slept deeply or comfortably downstairs but it was still a shock when I heard an ominous bang and clatter from our bedroom. I raced up the stairs to find Val on the floor with her perching stool on top of her. Fortunately she had not hurt herself. I got her back on the bed and this time I did take notice of the signs but was still unsure that they merited a 999 call. I was pretty sure that we would have to go to hospital to get the diabetic nurses to sort Val’s pump out.
I rang Jason who was on a night shift. I thought he was out on an ambulance car but in fact he was on an ambulance and thirty minutes later it pulled up outside. The decision was made to take Val in to Hospital A. Once he had finished his shift Jason would go back to the hospital and stay with Val while I waited for the window fitters.
Val was quickly seen by the A&E consultant and the Diabetic Consultant and all sorts of tests were soon underway. Her high blood sugar levels were a major concern. I believe the diabetic nurse listened with mounting concern as Jason recounted the “diet” that Val was on. As everyone was fixated on her weight and her need to up her calorie intake the impact and significance of the sugary drinks and cakes was overlooked. Blood tests confirmed that she still had an infection and so she was duly admitted to the diabetic ward later in the day.
I meanwhile spent the morning making and receiving numerous phone calls. Firstly I contacted our surgery and asked that Val’s GP rang me which she did around lunchtime. She had the results of the previous day’s blood test which confirmed the presence of an infection. I told her that the hospital were investigating this and she then asked whether they were going to scan Val’s brain and when I asked why she quickly changed the subject. We agreed that we would keep Val’s appointment on Friday and if Val was still in hospital then this would become a telephone consultation.
Next I rang the dentists and cancelled our appointments. We can make fresh ones when Val is up to attending.
I then rang Hospital B and explained the situation and asked if a new appointment to see the surgeon could be arranged. Once the outpatient staff member was satisfied that we had genuine reasons it was agreed that a fresh appointment would be sent out.
That left the issue of our trip on Monday to Yorkshire for three nights away with our friends. We were both looking forward to it and although she acknowledged the challenge involved, Val wanted to go. I thought it would do her and both of us good to have a break but I did harbour concerns about whether or not it was really sensible. I had though been encouraged by how Val had been over the previous few days but the events of the night before had brought home to me the risk involved – what if it had happened while we were away? It was therefore with some disappointment but also relief that I rang our friends to cancel. They understood and Rod agreed to inform the guest house.
Jason and I went to visit Val in the evening and she didn’t seem too bad all things considered. Her blood sugar levels were rapidly coming down and eat some of her hospital supper. After visiting the day ended with Jason and I going to a nearby pub for a meal and a long chat about many things. I went to bed confident that I would sleep well – and I did.
Wednesday July 12th.
Sleep for Val had been pretty impossible as the nurses pricked her finger every hour to check her blood sugar levels. These have continued to decline and in fact as the day progressed went the other way and she became hypo.
Jason took the early visiting slot and was able to show the diabetic nurse Val’s food diary which set out clearly the types of food and drink that had produced the current situation.
I had lunch with a friend and on the way home began to wonder whether the ward was aware that Val had a bed sore, albeit one that was almost healed, that I didn’t want to flare up again. I therefore rang the ward and passed on this information and during the course of our conversation the comment was made that they were having trouble getting Val to eat and drink. It was suggested, and I agreed, that I should speak to Val’s nurse about this when I came to the ward later in the day.
I also had a chat with our middle daughter, Vicki, who has a range of nursing experience and she made some interesting observations. She said that quite often patients who have had, or continue to have, major medical interventions can view food as the one aspect that they have control over and strangely, perhaps much like a young does, they become difficult over their nutrition. Her advice was to be matter of fact about things and to try not to be wound up by it as the patient is looking for a reaction. Interesting!
Later when I arrived on the ward, I did have a chat with Val’s nurse although as she didn’t make notes I am not sure quite how useful it will prove to be. While I was with Val her supper arrived and the usual performance ensued:
I responded, in a low key way, that she would always find something to complain about which then became her excuse for not eating whatever it might be. The roll, which was quite substantial, was getting stuck in her mouth due to her lack of saliva so I suggested that she had a mouthful of tea or water before taking a small mouthful which then in turn could be easily washed down. Val tried this and it seemed successful. As for the mandarin oranges, I pointed out that the menu sheet showed that they were suitable for diabetics.
We had a low key discussion, with me in my lowering my expectations mode and being matter of fact, during which Val again said that she did not like hospital food as there was little on the menu that she would ordinarily choose to eat. I replied that as soon as she was well again then we would go out to the restaurants we enjoyed and she could choose whatever she wanted from the menu but in the meantime she would have to earn it by eating what was put in front of her. I reminded her of how much she is loved by the family and how much we all need her – especially me.
I am in all honesty too battle weary to argue with her any more over this. She is an intelligent woman with so much to live for and if she cannot work out the importance of nutrition to her recovery and join up the dots for herself, then I am no longer going to argue the point with her and so whatever happens will have to happen. I am there for her if she needs me but I am not going to let her take me down with her. That might seem selfish or indeed melodramatic – well tough! - but self-preservation is becoming increasingly important.
Just before I left the nurse came to put up some more IV antibiotics and Val asked her how long she would remain in hospital. The nurse said that she was on a seven day course of IV antibiotics so that definitely meant that she would be in over the weekend and they wanted to see her eating and drinking a little better.
It was disappointing that we were unable to have the follow-up appointment with the surgeon. There is a lot going on in Val’s mind and seeing the surgeon would have been an important bridge crossed. Val is very frightened that the cancer will return – indeed the surgeon told her that she was a high risk – and so every medical intervention presents a chance that an x-ray, scan or blood test will bring someone to her bedside with dreadful news. If that happened it would mean that everything she has gone through was, to her mind, a waste of time. I am sure that the surgeon would not have conveyed bad news and would have concentrated on his surgery and the workings of the new bladder meaning that her involvement with Hospital B would be at an end. I am certain this will be the case when we get a new appointment.
