Thursday June 15th.
Both of us had slept well again but the problems of the evening before had left her a bit drained.
My day started with a visit to a sports injury clinic to get some attention to my left upper arm. I had injured my arm on a bus last August and hadn’t rushed to get it attended to and then Val’s health issue took precedence. It was an interesting experience involving more pain than I have ever experienced before. It was so bad that I would have happily given him bank details and PIN numbers if he had asked!
Val’s mobility is noticeably improving and she seems to be managing her new bladder quite well. Also her pressure sore is starting to heal. At her first visit the District Nurse had taken a photograph of the bed sore and comparing that to the bottom in front of me I can see it is much better.
The major issue remains her food intake. Two weeks after her discharge she isn’t just thin but really quite emaciated. It remains my biggest worry frankly but I have no idea how to tackle it. I have tried the gentle approach, I’ve ranted but nothing seems to work. Next week we are getting a visit from a dietician and maybe that might shed some light on it.
Val had a pedicure and a manicure today which I am sure will help her move away from being a patient and we were then visited by our friend Sue.
So overall it was quite a good day.
Friday June 16th.
I won’t lie. Overall this was a horrible day.
The issue of Val and food roared to the fore again. We have had two weeks where she has been able to eat what she has wanted, when she has wanted, and in the quantity that she wants and yet she continues to lose weight which is then impacting on other aspects of her recovery.
Now, I don’t care whether it has taken five minutes or an hour to prepare a meal but it is still hugely frustrating to then sit opposite someone who clearly doesn’t want to eat it. There is always an excuse that something isn’t quite right and so meal times have become painful.
I had really looked forward to Val coming home because I enjoyed our mealtimes together but now frankly the experience is just painful. I had to endure her trying to eat a small bowl of tortellini – which she had asked for – which she said was difficult because her throat was uncomfortable. She then asked for a bowl of tinned rice pudding and she spooned out the quantity that she wanted and added her own treacle. Watching her eat that was just winding me up and so I preferred to get on with the washing up rather than have to watch this increasingly common mealtime performance.
Val was resistant to seeking medical help for whatever the issue is with her throat but initially said that she would talk to our GP during a scheduled telephone consultation on Friday. I was not prepared to see this drag on another week and so she has, reluctantly, agreed to ring the doctor’s on Monday morning. We also have the community dietician visiting on Tuesday.
The challenge I made to Val was that if she wants me to stop “nagging” about her weight and eating then she must start getting on the scales and if she is putting on weight then I will be quiet. We agreed that if the evening meal was an issue then she should just eat what she appears to be able to tolerate well which seems to be her breakfast cereal with cream and a banana.
Val seems down about things which, as I have said before I don’t understand given that the new bladder is working and she is daily gaining more control over it. At one point she starting crying and when asked why said that she was worried about her weight, the eating issue and that she didn’t want any more hospital treatment. I can understand that but if things continue as they are then ironically she will bring about the last of her fears.
I do think that there is a mental aspect to this. The vomiting in hospital was extremely unpleasant and did cause her throat to become an issue and those two issues have, again in my opinion, caused her to be fearful of them happening again. Why did they happen? The reason was that her stoma wasn’t working but we have faced that issue many times in the past and dealt with it. So, the real villain in her mind is food and therefore she is trying to avoid it by her approach to eating. She needs to switch from seeing food as “bad” to seeing it as “good” and the key to her recovery. Is this cod-psychology? Possibly but it makes sense to me.
Val also agreed that she would once again start using the throat sprays from her time in hospital. Having settled myself in bed and just about to reach the climax of the book I was enjoying, I asked whether she had used the sprays. (This by the way came after the less than straightforward re-inflating of her mattress and changing the dressing on her bed sore which the district nurse had only changed that afternoon.) The answer was “no – she had forgotten”! Not only that but she didn’t know where they were and so I had to get out of bed and find them. Why did I need to remind her? How could she have forgotten the conversation we had had over our evening meal?
If Val isn’t going to bother then why should I? Because the alternative is that she will pull us both down and I won’t let that happen, even at the risk of damaging our relationship, for one simple reason – I love her!
Saturday June 17th.
The morning started quite literally with a loud bang. The loud bang came at 01.57 (precisely because I glanced at the clock) when Val fell out of bed. The bang was I think the back of her head hitting her bedside cabinet. I am now able to report that there was no damage – the bedside cabinet is perfectly fine. Fortunately Val was also alright – no cuts or breaks thank goodness. (Am I wicked to have allowed the thought to zip across my mind that the bang on the head might be good for her? No wait, I did wait to allow this thought’s intrusion until I had checked that she was not injured!)
Val weighed herself this morning and I think we were both shocked that she weighed only 46kg Prior to her illness her lowest weight was generally 52kg so she is effectively one stone below her lowest target weight.
James, Jane and Emilia arrived mid-morning and we decided to go off on their camper van for a picnic by the river. While packing stuff into the van I gave James my honest appraisal of how things stood with his mum. James can generally be expected to be philosophical and find the nugget of goodness in the situation but he agreed with me. In fairness to James he did speak to Val and seemed to have reiterated the points that I have made.
Val eat two small sandwiches at lunch, followed later by a large ice cream and she then looked to me for applause and praise but I was too far gone in my frustration at the situation. I pointed out that we needed to know from the dietician what should be Val’s target calorific intake if she was going to put that weight back on. It seemed pointless to applaud an intake of 1500 calories if the target was 1900. I was accused in front of James and Jane with pulling the rug from under here and so the scratchiness between us that had previously been in private had spilled out into the open making for an uncomfortable end to the picnic.
In the early evening, we all eat in the garden and while the rest of us eat pizza, Val had half a can of soup. She did have some of the dessert of apple pie and custard. Unfortunately she was a little sick when we came to bed but I felt that some normality had returned by the end of the day but I feel that I have to take back my life before I get dragged down too into Val’s pit of despair. It seems only too obvious to me that Val has now reached a point in the road where she can move forward and embrace the life that is available to her or she can turn around and head back to hospital. For me it is as stark as that and I cannot do it for her – she has to want to do it for herself - and soon I hope.
Sunday June 18th.
A better day.
We took the opportunity of our visitors going off to meet their friends for lunch to have a chat. I am more and more convinced that there is a mental issue here with Val. It appears that we have “glass half empty” versus “glass half full” situation. For example Val had interpreted the surgeon’s comments about there being no further treatment, in terms of chemotherapy or radiology, that was possible in her case so “enjoy the rest of your life” (or words to that effect.) At no time had the surgeon suggested that she actually needed further treatment only that she was high risk of an occurrence due to the nature of the cancer. Therefore I saw his comments as positive – no further treatment required and so let’s get on with our lives.
Val did seem to agree that she needed some third party help to help her recovery as apart from what I have been doing there is nothing more I can do and so this coming Friday’s telephone consultation with her GP has now been converted into a face to face session. Also this week Val will have a visit from a physio and a dietician which will hopefully prove to be helpful.
Val asked me to go with her while she walked to the end of our close and she enjoyed seeing and briefly talking to some of our neighbours. She will need to do more of this.
When James and Jane returned, Emilia entertained us by her antics in the paddling pool that they had brought with them. I found both James and Jane tremendously supportive and understanding of my situation and they encouraged me to get out and do things for myself particularly as Val doesn’t really need babysitting any more. By the time they left and we had eaten, Val was very tired and went to bed and fell asleep quickly despite the heat.
Monday June 19th.
After a very hot night I was up early and had cut the back lawn before breakfast.
The morning was taken up with me doing the shopping and then we had a visit from a physio. He was excellent and gave Val five exercises to do and suggested that she should be doing them three times a day to help rebuild the muscle tone in her legs. It will be interesting to see if Val perseveres with this exercise regime but at least in the short term there will be some motivation as he will be coming back in a week’s time.
We then took a trip out to Costa Coffee and combined it with me buying a new lemon squeezer to replace the one that went missing. Val has made a serious attempt to increase her calorie intake which was encouraging – and necessary.
Val had a long nap in the afternoon, and I think I had one too, and we then sorted out our own evening meal and Val opted for tomato soup with some extra cheese. I had some fantastic cod fish cakes with roasted vegetables. Although I don’t want, at the moment, to sit with Val when she is eating, I think it is a good idea if she sits with me when I eat. Firstly because we can chat with no pressure and secondly if she sees me eating good plates of food then it might encourage her to try a bit of whatever I’ve got and then who knows?
We did have another chat about things in the afternoon and Val is starting to recognise the difference between knowing and action. She knows that food is the key to her recovery but she needs to act on that knowledge and persevere – that word again – and we both hope that tomorrow’s visit from the dietician will be useful.
Tuesday June 20th.
It had been another incredibly warm and uncomfortable night so we up reasonably early.
Someone told me that their grandmother used to say that nothing stayed the same – it either got better or it got worse. Val therefore has a decision to make. I’ve told her that my dream is that when we go to see the surgeon I want her to walk into his room unaided, looking her best and in full control of her bladder rather than walking in leaning on me or a crutch, looking like a patient and making a puddle on his office floor. Thankfully such is the control that she has over her bladder that the last of those three things won’t happen.
For me the watchword for Val has to be perseverance. The physio said that she needed to do the exercises three times a day and the day started well with a round of exercises carried out around breakfast time – but that was it and no further repetitions followed.
The district nurse called in and changed Val’s dressing and then the community dietician came in the afternoon and I personally found her input helpful. Basically to maintain her weight Val needs to consume 1500 calories a day and to put on one pound a week will require her to consume 2000 calories per day and again perseverance will be the key. Val has been keeping a food diary since last Saturday and up until yesterday she had been consuming calories at a “maintenance” level and today was on course to get close to the “gaining weight” level.
I mentioned to the dietician that we had discussed Val having a small glass of Guinness as a way of getting more calories and she agreed that it was a good idea. She went on to say that in fact a small glass of any alcohol taken half an hour before eating will help to stimulate the appetite. So, half an hour before she had her evening meal Val had a small glass of sherry – and I enjoyed one too !!
Three friends then visited and the husband of one of them had had bladder cancer, resulting in his bladder being removed, and Lyn was able to talk to Val about her experiences.
Consequently Val had not been able to have much of an afternoon nap and come early evening she was exhausted and went to bed. This is going to be a long haul – a marathon and not a sprint!
Wednesday June 21st.
It had been another uncomfortable night with almost unbearable heat and humidity.
Val pushed herself more today and for the second day running her calorie intake exceeded 2,000. She also did two exercise sessions and using her perching stool was able to do the ironing.
Earlier in the morning we took the opportunity to sit in the garden before the temperature became unbearable. Both of us slept during the day as we felt the effects of the heat and two consecutive disrupted nights.
Late in the afternoon, two neighbours called in and we enjoyed chatting to them and catching up on news.
The evening meal was preceded by a small glass of stout and later Val enjoyed a small glass of Baileys. So, happy days really but Val will need to persevere. If this week has proved anything it is that it needed input from third parties, physio and dietician, to get things moving. They didn’t say anything that I hadn’t already said to Val but whereas she had heard me, she had listened to them. The moral of the story for those in this situation is not to leave it too late to get help from others.
