Thursday June 1st.
The day started with an excited phone call from Val telling me that she would be coming home tomorrow! So began preparations for a long anticipated home coming.
Having learnt the hard way over the last few months that it doesn’t pay to assume I rang the District Nurses at our GP practice and told them that Val was coming home on Friday although I was not able to specify a time. The District Nurse wanted me to ask the ward to carry out a continence assessment and send a report to her but having been down this road two or three weeks ago I said that I thought it would be better if she did it. A few minutes later she rang me back and said that according to the ward, Val would be coming home on Saturday and asked me to ring the ward to sort out the confusion. It appeared that the ward sister had been off for three days and must have had a senior moment as she though today was Friday! The ward clerk said that she would ring the District Nurse back.
Fortunately today was the day that the cleaners came and while they were here, I went and cut the back lawn so that house and garden would look good for Val’s return.
Val had two visitors at 15.00 and they were still there when I arrived at 16.00. When they eventually left I sorted out Val’s belongings and brought home four carrier bags of assorted items and a perching stool. While we were putting together a shopping list, the surgeon came to say good bye and to tell us the arrangements that Consultant B would be making. I thanked him, as did Val, and he said that he would see us in four weeks’ time.
As for that cannula that Val was waiting for at 15.00 yesterday afternoon, it was finally inserted at 03.00 this morning by a doctor who had been on call all day and it had taken to the early hours of the morning before he could get to deal with Val. Do you find that acceptable? Because I certainly don’t!
Friday June 2nd.
At home I was busy food shopping, cutting the lawns and generally preparing the house for Val’s return while Val was doing well, not very much really.
Why is the process of hospital discharge so drawn out? In Val’s case, she was waiting for the last pouches of IV antibiotics to come up from the pharmacy – and they duly arrived around 13.30. To cut a long story short, we eventually left the ward at 16.15!
Val’s surgeon came to see her in the morning and told her that there would not be any follow up treatment. This sounds to be, on the face of it, welcome news but as always the devil is in the detail. Although the surgeon had taken away the entire tumour and some suspect lymph nodes, he could not guarantee given the nature of the tumour that the cancer would not come back. He had spoken to the oncologist who had said that if the cancer returned chemotherapy would not be an option.
Val and I discussed this and decided that more than ever we would enjoy life whilst also acknowledging that none of us knows what is around the corner in a week when our sister-in-law’s father had suffered a heart attack, a friend had suffered a heart attack, another friend has found that she has thickening of her womb with polyps, and another has told us that she is dealing with an unexpected yet major health issue of her own.
The ward staff made a fuss of Val when we left and on the whole we could find little to criticise where their support and care was concerned.
I described the drive home as like half time in a football match and our arrival home would be the start of the second half.
Val admitted to feeling disorientated when she got home and it is easy to dismiss the idea of someone becoming institutionalised but she had been hospitalised for a little over six weeks and the boundaries of her world had been the four walls of her small side room.
Supper that night was whatever she wanted and that turned out to be carbonara which we both enjoyed. We were both tired but held out until 22.00 and then made our way to bed and the beginnings of working out a new bedtime routine – it was great to have Val back!
Saturday June 3rd.
We had both slept well and Val had managed to take herself to the bathroom, we have an en-suite, without mishap and without waking me.
The business of having a shower and washing her hair whilst positive and enjoyable tired Val out and she lay on the bed once she had dressed and I brought her breakfast up to her. I have never really thought about being a carer but I know that the next few weeks and months are going to test me and I hope I am up to it. I think if I get testy or impatient, as I am sure I will, that I am going to hum to myself Rag and Bone Man’s “Human” as the line “I’m only human after all” says it all.
Val left hospital with a pair of crutches and she used these to come down the stairs with me just in front of her in case of mishap. Watching her, I had a mental image of Anthony Sher as Richard III, although he did move considerably quicker across the ground than Val is currently capable of! I had not expected Val to need crutches when she came home and I was surprised at how swollen her feet and legs are once more. Val’s legs had been swollen for a while after the operation but had returned to normal reasonably quickly so I hope that will be the case this time.
Once downstairs Val sat on the lounge sofa and later that morning we had the first visit from the District Nurse who carried out a continence assessment and also dressed the sore on Val’s bottom. All Val’s observations were fine and the District Nurse, having left us some pads, said she would return tomorrow with some more.
After she had left Val wanted to go out into the garden and this was the furthest she had walked since she went into hospital. It seemed only reasonable for her to have a nap afterwards which was uninterrupted as I had already promised not to take her blood pressure, temperature or stick a needle into her!
Val ate well throughout the day and was very tired by the time that we decided to go to bed – thank goodness the Champions League Final hadn’t needed extra time and penalties. As she was tired climbing the stairs using her crutches proved to be exhausting for her. I stayed just behind her which was as well as she nearly had a moment at the top of the stairs. Val and I were therefore pleased when she was safely in bed. Last job of the day was to rub barrier cream on her really horrible looking bed sore – love is eh?
Sunday June 4th.
Another good night’s sleep for both of us and a good day all round really.
Val has enjoyed her food and has managed three walks around the ground floor of the house and had an afternoon nap.
The District Nurse dropped off some more pads and took away an unopened box of catheter related items that Val won’t need.
The use of Tena Pants has helped Val enormously by giving her confidence that she won’t leak over carpets, sofas, chairs and our bed. I am sure that Val is not alone in wanting to preserve some dignity while she learns to manage her new bladder and these pants seem to enable her to do that. However she does put a pad inside the pants and she switched to a different make in the afternoon and this led to two occasions when she did leak. It wasn’t disastrous by enemy means but I know it would have been distressing for Val.
When you fall in love with someone you never give a thought to what those words “in sickness and in health” might mean. Life is going to be fun, about doing things, making a life etc etc. But life is not necessarily going to be like that and we certainly don’t think about serious illness, endless hospital visits and caring for a loved one.
Val has a tendency to apologise for her health issues and I always assure her that she has nothing to apologise for, after all she has not acquired them deliberately, and anyway it could just as easily be me laid low.
I think when you are thrust into the caring role you know that you are going to find out a lot about yourself – good and bad. You also have to accept that you are going to see your loved one at their lowest ebb, and in situations that they normally would deal with behind closed doors. But, these things have to be faced and dealt with because there isn’t anybody else there. It’s you or chaos.
The role of carer is all consuming – or at least it is for me at the moment. I think as the carer you are very much the support act to the main event. While, quite understandably, the focus is on the one who is ill or is recovering, I think friends and family need to think about the question “who supports the carer?” This is a point that I am sure I will return to as, for example, I need to go to my opticians to collect a new pair of office glasses as I have struggled over the last week or so to use the computer and read my tablet and books, and so I really would like to get them at the earliest opportunity.
Throughout the day, I find myself constantly carrying out quick risk assessments to minimise the chance of mishaps where Val is concerned. I am not sure where the line between caring and smothering might be because there comes a point when you do have to stand back if your loved one is going to gain confidence and not rely on everything being done for them because whatever else we might say about hospital, everything is done for the patient. So the individual newly home from hospital has to understand that it can’t be “all me, me, me” or somewhere along the line resentment will rear its head. Therefore now that Val has finally left hospital the transition from patient to normal life is what the recovery period is all about and both of us need to navigate around the situations that will arise.
We went to bed a little earlier as we were both tired and I wanted Val to be able to go up the stairs without yesterday’s troubles. I think I can see some improvement in her already and long may it continue.
Monday June 5th.
Another good day followed another good sleep.
It was a day of a big first as we decided that it would be fine for me to leave Val for a couple of hours while I went to fetch my glasses and pick up some bits from the supermarket. Inevitably, this could not be done without some prior thought and planning – spare door keys under the mat in the porch, making sure that Val had been to the toilet before I left, telephone close to hand, television on and a drink left. This was needed because there was nobody we could think of who could come and babysit. Thankfully I did not return to any particular problems.
In the afternoon some friends called in which helped to break up the day. Martin had had a stent put in an artery last Thursday following a mild heart attack and it was great to see him looking so bright and chirpy.
Val seems to be getting stronger and walked a little further. When Val came downstairs in the morning I am pretty sure she beat her personal best. Going upstairs still presents a challenge though.
We were both tired by around 21.00 and so decided to go to bed. This is an interesting exercise making sure that everything that Val will need for the night is in place before I shadow her up the stairs. By the time I got into bed, having kept a watchful eye on Val as she prepared for the night, at 21.45 – shattered!
Tuesday June 6th.
Val slept well but I sadly didn’t.
Over breakfast, Val raised the issue of some comments that I had made when she was in hospital over her attitude to food which I really didn’t want to engage with. This could have been one of those scratchy moments, particularly as I felt really tired.
Anyway after breakfast there was another first as Val, using her perching stall, was able to do the drying up having previously squeezed some oranges. These are normal, everyday activities but, in the context of what Val has been through, they represent more evidence of a steady improvement. The district nurse had made an interesting comment saying that where your recovery is concerned you should judge yourself against how you were week ago and I can already see that Val is better than she was last Friday when she came home from the hospital.
After breakfast Val wanted to sort out some boxes of medical supplies which proved to be a good job well done. It left me with a lot of debris to remove and I had to bite my tongue as Val asked me to do something while she should have clearly seen that I was already doing something else that she had wanted me to do! However, before I could say anything the situation was saved by the arrival of the district nurse followed shortly afterwards by our GP.
The day was saved by us both having a well needed nap in the afternoon and I for one felt much better as a result. In the evening a family friend, Adam, came to the house and cut Val’s hair. This represented another step in Val’s transition from a patient to her old self.
Val was tired and went up to bed before me. Having seen her safely into bed, I sat downstairs and read with a Carly Simon album playing – she has an amazingly distinctive voice.
Wednesday June 7th.
It was quite a good day, apart from the weather. Before Val went into hospital for her operation we purchased two new sun loungers for the garden having this utopian vision of spending time relaxing in our beautiful garden. It is safe to say that the garden is beautiful – well we think so anyway – but there is no way which we can use our sun loungers which remain in their boxes.
Val seems to be moving a little better and I think the heaviness in her legs, ankles and feet seems to be subsiding. She is still very tired and enjoyed quite a long afternoon nap.
It was a quiet day that was only disturbed by a phone call from Jane, the district nurse, to tell us that the hospital had not made a continence referral as had been both expected and requested. The issue of the continence referral has featured a few times already in this narrative, so it was quite frustrating to find that nothing had been done. Jane had therefore made the referral herself and Val will be sent out some samples of continence aids and will get an appointment to attend a specialist clinic. The main issue here is that it will delay Val getting the supplies that she will inevitably need. I cannot for the life of me understand why this simple and necessary referral did not feature on a discharge checklist as it would not have been the first time that a regional urology centre would have sent home someone needing that service.
Still, deep breaths and we carry on.
