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Within a few days her husband developed a rash, his kidneys started failing and he needed emergency surgery.
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He started to have a rash around his shoulders and there was a swelling on his left collar bone and just generally seemed to be quite poorly.
And I suggested that either we contacted the emergency doctor or we waited to see his GP first thing Monday morning. And we opted for the second option that we would see his GP first thing on Monday. So Monday morning came, and I got up, phoned the surgery and they said, “Come down at ten past nine”, which we duly did. The doctor took one look at him and said he was quite concerned as to what was going on. The red rash, a petechial type of rash started spreading. It was in his armpits and the swelling and puffiness around his neck and his left shoulder was really more pronounced.
He generally seemed to still be quite poorly and the situation was aggravated by the fact that [my husband] is penicillin sensitive. So the GP said, “Oh well I will give you some antibiotics” and I said, “Well don't forget that he is penicillin sensitive…” And he said, “Ah”. And sort of took another look at him, examined him and said 'I think we will send you to hospital.' And whilst we were in there the doctor was writing a letter with one hand and actually on the phone with he other. So the feeling of urgency was definitely here. And sent us down directly to the treatment centre with a letter and there we had to wait for a while, a couple of hours probably. So we didn't go via A & E, we actually went to the day surgery unit kind of thing and the doctor came round about 1 o'clock. And he went from the doctors surgery straight to the hospital and didnt come home in the meantime. The doctor who came about 1 o'clock wasn't too sure quite what the next step would be and called in her senior colleague and he was quite concerned and during the course of that day [my husband] was admitted. He deteriorated and was in a lot of pain and not very well at all.
They decided that they would operate to drain the pus because [my husband's] kidneys were starting to fail and the body was starting to go into shock. And they would operate to remove the pus, bump up the antibiotics and take it from there. He went down to surgery about 5. I went down with him and with the theatre porter and one of the nurses. And he said cheerio at the door. And [my husband] said to me something along the lines of, “If I don't make it, I just want a simple ceremony with ashes in the churchyard.” And he remembers saying that at a different time but that was when it happened. And when one of the registrars had said to him that his kidneys were starting to fail I remember him sitting there saying, “Oh great!” He doesn't actually remember that but it was very [husband's name]. Anyway he said cheerio at the theatre door and off he went. |
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She and her husband now have a better perspective on life and he has gone back to being the humorous man she'd married.
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I think I do tend to look at life differently. I tend to kind of go with the flow a bit more and try not to get too deeply involved with things or get too wound up about things that you have no control over. I tended to be a bit that way before anyway you know, with, if I had no influence over something there was no point in worrying about it. But now it is a case of if I want to do something, whereas as before I might have thought oh well I can't really afford it or it is a bit of a waste of time, I could be doing more important things and so on. I go for it now because you just do not know what is round the corner. Saturday morning [my husband] was fine and Tuesday night he was fighting for his life. You know things like perhaps a car crash or something they are easier to deal with because it is something that - it is an accident but when it is an illness and with the unpredictably of it all, there is just a lot to deal with.
I think we both probably look at things a bit differently. In fact [my husband], he asked me the other day had he changed since he had been ill and I said, “Well you have got your sense of humour back”. Before he finished work he was getting very stressed out with work and things and with the threat of redundancy hanging over him. And then he reached a milestone birthday which if he would have been made redundant before that he wouldn't have got very much, whereas afterwards it would mean he would be able to draw his company pension. So then he was sort of willing it to happen. And it wouldn't happen. And he was getting stressed out the other way. But now he is back to being to the man I married, which is nice and my good friend who was such a support during [my husband's] illness said, “I can see why you married him now. He has always been so quiet since I have known him. But he is quite fun isn't he?” [laughs] So for somebody else to notice, it must be a marked change.
So he has gone back to the man that you married. Has that changed your relationship?
It is more fun again now. We have always had a good strong relationship and we have always been able to talk about things with each other. And although I can be very serious and professional and things at work, I am actually quite daft outside work and do silly things and silly voices and pull faces and things. It's just a bit of fun and he actually joins in now and things. Which he used to but he had got sort of quite withdrawn and down about life in general I think. And sort of having been made redundant that started to come back. And then he was ill. And since he has been reasonably fit again following his illness, he is quite fun and we just do things spontaneously now, whereas one time it would be, I ought to be doing this, and I ought to be doing that. But now it is, it will wait. Mostly things will wait. So it is good. |
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When an osteopath massaged her husband the monitors showed improvements, and he continued to make progress from then on.
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The osteopath came to the hospital, spoke to the doctors and they were happy for him to do anything he could to help really. And it came out much later that they had said to him, and as it was put to me, “Do what you like, he [the patient] ain't gonna make it.” But I didn't know that until a much later date. Anyway he came in and assessed [my husband] and did some cranial sacral work and did some lymphatic massage on him, avoiding his shoulder where the lump was. And actually got me to hold [my husband's] feet. Rest my hands on [my husband's] feet to see if I could feel any changes in his system. And there's this thing called cranial sacral rhythm, just to do it with fluid flow around the body and I actually felt it start to pick up and felt the, almost like - it didn't move that much - but like a kick in his right foot and it gradually got stronger and stronger. And I could feel the whole sort of movement and it was going all the way up my arms. And it was amazing, absolutely amazing, it was as if he had come back to life.
And [the osteopath] also did some massage around his diaphragm to help his lungs. And one of the tests that nurses were doing was something to do with blood gases which had been at levels of about 7 or 8%, and post this treatment by the osteopath then it had risen to 29% on the blood gas machine on the ward and one of the registrars came round just checking, doing his round in the ward, and I was there and the nurse showed him and he said back to the nurse, “Well I don't believe that for a minute. Send it down to the lab.” And the sample was taken and went down to the lab and came at 24% and bearing in mind there was also time delays and all that. And that was really good. That really seemed to be the turning point in everything.
All this time while [my husband] had been on the kidney machine there has been lots of problems with the filter on the machine clotting up because of all the sepsis in his blood and one thing and another. And come the Thursday, that seemed to have settled down as well. Which was the turning point. That was the day after the osteopath had done the first treatment and then they put a new filter on. |
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As her husband began to improve she read out cards and messages of support and, when he had a valve put into his tracheotomy tube, he was able to begin to speak.
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On the following Monday, so that was two weeks from when he went to see the GP, [my husband] was moved from an Intensive Care bed to a high dependency bed within the same ward. Which is a sign that thing were sort of improving. He was on the mend and didn't need quite the same level of support that he had had initially. So that was the Monday. I think his - yes his heart drugs must have been stopped by then as well because he had gone into a high dependency bed. I brought in the cards that everybody had sent. He had loads of messages of support and goodwill and things from friends which was really nice. I took those in to show him. I took some of the photos in that I had taken and kept things ticking over. Things were fairly stable at this stage. He was still being fed by a nasal gastric tube, still on the ventilator and that was going to be the thing that was going to carry on for a while. But gradually the pressures that they had to use to keep his lungs open, that did come down and by the Thursday [my husband] had had something called a Passe Muir valve fitted to his tracheostomy tube, which is a one way valve enabling him to speak. |
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She had a phone call in the middle of the night saying her husband's condition was deteriorating and that she should come in immediately.
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I had a shower and went to bed, fast asleep, and the phone rang about half past two and it was the nurse saying, “You have got to come now, [your husband] is deteriorating.” And so drove myself down to the hospital.
Did you drive?
Yes. I drove myself that time. I think if anything had got in my way, there would have been a… I don't quite know quite what would have happened. But I shot down there. Luckily it is a very quick, simple route from here. So that wasn't bad. And I went in and I went down to see [my husband] and see him and say hello and things. You could see obviously things were very busy around him, and lots of things were going on, doctors in attendance, nurses.
They took me back to the office after a few minutes and explained that they were doing absolutely everything that they could and if he deteriorated any further, would I want them to try and revive him? To which funnily enough it is the sort of conversation we have had over the years, you know, if I get seriously ill this is what to do. So actually I could answer that quite openly, “Yes, of course I do in the first instance, but I do know that if there is a risk of oxygen starvation to his brain and there is risk of brain damage, he will not want to be revived.” So I explained that. And I also said, “If he doesn't make it, then if there are any organs or anything that are usable, then we would want them to do that.” And I said I understood that he was very septic, and the likelihood of that actually anything being that was usable was very slim. But they were doing everything they could, he was having heart drugs etc. and he had been stabilised a little bit. In the meantime I had to get hold of his Mum and his brother and get them to the hospital. |
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From the time her husband was admitted to ICU to the time he came back home, she'd run the whole gamut of emotions.
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Initially I was concerned for him as to whether he was going to survive or not and where that would leave me. I knew that we had no major bills or anything and the house was paid for except that if [my husband] hadn't lived, there were no real concerns over that. And the old joke about 'oh he left her well provided for', you know. And somebody said that to me afterwards very light heartedly. So I was very concerned for him. And I was actually, physically I was fine, I got very tired but physically I was fine. Emotionally I did feel quite drained to start with. I mean I went into coping mode and just got on with everything.
But generally my feelings were a whole gamut of emotions. You know, fear, joy, trepidation, anxiety and pleased that something had happened or a bit worried and all different things. But gradually it went from being really fearful and upset, and as each day went on, and we got into another new day, each day it was gradual progress and sort of spirits lifted and he came home. And although I had had the cat put to sleep that morning, after [my husband] had come home, I walked to the little local shop to get some bread for bread and jam and found myself smiling to myself as I walking back because I had got him home. That was all good. |
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She found her brother-in-law difficult to get on with and sometimes felt put upon when he and his mother were staying with her while her husband was ill.
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During this time [my husband's] mother and his brother were staying. And talking about feelings and support I actually found his brother really quite difficult. And he kept saying, “Have you got this at home, have you got that at home. Have you got any…”. The one that sticks in my mind which is silly, “Have you got any bacon?” [laughs]. So I said, “Well there is probably some in the freezer”. Whereas normally at home we don't use sugar in drinks, take sugar, but there is some and it was in the cupboard, in a clear glass jar, and the second time he came back he said, “I still can't find the sugar.”
So when I got home from the hospital, having had about four hours sleep in the last 48 hours, I then had to label everything in the kitchen, get all the things out. I spent about two hours sorting stuff out and I was so angry and so tired. And it's probably coming out in the way I am delivering this in the fact that I still a bit resentful about it. And [my husband's] brother came back with his Mum to the hospital to relieve me, he said, “Oh and I've cleaned the top of your cooker for you.” And I thought 'that's kind'. And then he went on to say, “But it was rather filthy”. Considering I had spent the last I don't know how many hours actually at the hospital and not at home, worried about my husband who was fighting for his life, I thought the state of the top of the cooker was really rather irrelevant. And he could have just left it as, 'I did a bit of cleaning for you' and I would have thought that was really nice. But no.
I know it is [my husband's] Mum's son and his brother's brother obviously, but [my husband's] brother has still got his wife and his son. His Mum has still got his brother, but I didn't have anybody. So my family is not around. Although I have got very good friends and my friends were really wonderfully supportive and really good. But I did feel that his family were taking advantage and particularly with his brother and that was a problem. That was really all the way through his time in the Intensive Care bed. And certainly into the high dependency bed, when I said in the previous tape that I felt that his brother was very selfish. |
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She is a pharmacist and was pleased doctors explained her husband's illness in lots of detail because it helped her make sense of what was happening to him and why.
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They explained that he was going to be kept in a medical coma, to give his body a chance to recover. And they took us off to the office and sort of explained things. Spoke to one of the anaethetists and a couple of the nurses were there, the vicar was there, our friend was there. And then the anaesthetist went through the clinical side more, and explained what his physical state was like. And it was quite good in the fact that somehow he had, I guess from the ward staff up in the treatment centre, he found out I'm a pharmacist and that he explained in a reasonably technical manner, he just pitched it just right actually. Because I understood exactly what he was saying. And one of the nurses said to me afterwards, “I was a little concerned because he seemed to be talking in quite technical terms and I was worried that you wouldn't understand”. They explained what they do and she says “Well that all makes sense now.” And that particular nurse was actually a student nurse, she was part-way through a degree course, so like a student nurse, and then there was a senior staff nurse looking after [my husband], who explained everything that was going on. |
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Keeping a diary had been helpful for both her and her husband and she gave it to him when he was strong enough physically and emotionally to take it all in.
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Had you kept that diary all the way through then?
From about the third of fourth day when it was suggested that it would be an idea. [My husband] has actually got this little Snoopy dog, that he is very fond of. He has always liked Snoopy. So I actually took Snoopy in for him and tucked him in bed even when he was unconscious and I actually wrote this little story as the diary of what the dog saw. Obviously the dog didn't see anything because it's a toy but you know [laughs]. And eventually I did give it to him to read, but not immediately, but afterwards. And he thought it was really good. So I kept a diary. I had also been taking photos at home, because it was springtime and lots of changes in the garden, we both like the garden so, there were lots of changes going on. So I had taken pictures of daffodils and tree blossom coming out and things like that so that he had a pictorial record of the things he would have missed as well and he seemed to enjoy that afterwards as well.
It [diary] was something that I wrote while he was unconscious and I wrote it as a story about what was going on. And I didn't let him read it immediately he came home, I thought it would still be a bit too emotional for him. But as he got physically and emotionally stronger he read it and he actually found it quite enjoyable to read and useful. Because some of it had got some of my feelings at the time transposed into it. So he could see that there were times that were tough and times that were good and when who was around to support and who wasn't and things. So he found it useful.
And did you find it helpful to write it at the time. Or you didn't really think about it because you had other things…?
No it was helpful to write it. There was one particular bit that I found it quite cathartic actually writing it down on paper and getting it off my chest. And it was good that I managed to write it in such a way that it wasn't going to be too disturbing for [my husband] but it was good to get it off my chest. |
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She still couldn't decide whether she believed in God but appreciated the support she and her husband received from the vicar and chapel staff.
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And people from [my husband's] church were great. The vicar was wonderful. The first week, on the Friday night, she said, “I haven't got anything to do on the Saturday, she said, “I can sleep on Saturday. I can come and relieve you and Friday night you can go home and have a proper night's sleep.' And that was such a gift and so wonderfully generous of her. And so everybody was really helpful and supportive. I found that was really good for me.
Did you also have a faith that you could rely on?
I don't particularly. I found my lack of faith questioned during that time. Is there a God or isn't there? And I still haven't decided one way or the other. And one part of me says well there must be because you know, your prayers were answered and then the other part of me says, well if there is, then why did he make us go through this in the first place. So very much sort of questioning that. [My husband] says I ought to talk to [the vicar] about it. But I think as time has gone on I am sort of quite happy to let things blow in the wind as far as that is concerned.
Did you find it a comfort praying at that time even though you weren't sure one way or the other whether you believed?
Yes. I think so. I went to a couple of the chaplaincy services in the first couple of weeks and I did find that helpful. One of the chaplaincy staff was lovely. She really kept an eye on me and made sure I was all right. So that was support from an outside source that I hadn't necessarily directly sought but it was there for me, which was really great. Yes, this particular lady was lovely. |
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She and her husband had talked about end of life decisions and her husband had said he wouldn't want to live if he would be left brain damaged.
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You mentioned you had already discussed that at some other point before he was ill?
Yes.
Had you made decisions like that or it was just a topic of conversation? Or had you had a serious discussion about it?
We had in the past had sort of fairly serious discussions about what our wishes would be in various situations. And if there was brain damage, if it was just physical. If one died. If the other, or if one was disabled. Different sorts of things. And I think at one particular point I think it was actually triggered by a family bereavement, you know, I think sometimes these things bring issues to a head don't they? But yes we have had a serious discussion over intended wishes.
Had you written anything down?
No. Although we do have wills and have had for a long time. Ever since we had a mortgage [laughs]. |
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Her husband was anxious about having surgery but they were both relieved and happy when doctors showed them his x-rays and told them he no longer needed it.
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The surgical registrar come round and explained the situation and what they were going to do as far as the operation was concerned, including putting a little arrow on him showing where they were going to do the operation and he said, “What is that, the 'cut here' mark?” “If you like,” she said. He got really worried, he is a bit squeamish at the best of times, and he had got really a bit upset and a bit faint at the thought of all this going on. So they moved him into the main ward to keep an eye on him so he didn't pass out. And we sat there chatting once I got there. And he got a bit upset, at one point he was really scared because the operation was going to be near his heart and there were risks about how the survival rate was and this sort of thing. And he had a little weep. And I tried to comfort him. And told him he was in one of the best hospitals in the country for this sort of thing, a centre of excellence and all this which I was persuading myself about as well.
When they first said he was being transferred to [the second hospital], I thought, “Why? What is going on, what has happened?” But then as you become more rational and you start to think about the real reasons why and I was fine after that. And - as I say [my husband] was rather upset, had a little cry and I just tried to reassure him. And about half past six the surgical registrar came back and introduced herself to me, and said, “Would you like some good news?” And he said, “Yes, [laughs] that would be nice”. And she held the xray film up to the window and said, “This is your xray. I would be happy with that sort of xray after you had had the procedure, let alone beforehand. So we don't need to do the operation and you can go home”. Which was wonderful.
The time lag between coming out of critical care and going down to [the second hospital] had allowed his body to mend. So lots of fluid had been reabsorbed. And the problem had resolved itself. So this waiting for a bed had actually been very advantageous really. [My husband] couldn't come home with me that night. He had to stay in overnight while they sorted out his discharge papers, sorted out his meds, got the physio to check that he could actually come up and down the stairs and this sort of thing, which he could. And I got back down to [the second hospital] about 3 o'clock and he had been hanging around all morning. They had changed his bed and got him out of the bed. Didn't let him get back into bed but put a clean sheet over the top so he could lie on that so the bed was ready for the next patient. I arrived as his meds came up from pharmacy and the nurses were finishing the letters, so they changed his dressing on a wound site which he'd had a second minor op on just to drain [a collection of pus] and within half an hour we were on our way home. Which was lovely. |
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She saw a counsellor a month after her husband came back from hospital when feelings from the time he was ill came up again and upset her.
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The thing that sort of - the straw that broke the camel's back kind of, I had been on the phone to his Mum and she has this annoying habit of questioning everything you say, which is one thing, and I kind of thought well if she would shut up and listen she wouldn't need to keep asking. Which was… it just triggered a chain of emotions and things and I just went into free fall really. I just burst into tears and I was angry and I was upset and I was finding it difficult to talk to [my husband] about that because it is his Mum. And his Dad died a few years ago and he is very fond of his Mum. That sort of thing.
So he sort of tried to do his best to help. I actually asked him to go and get a friend of mine to come round and I sort of sat and chatted with her for a bit. She sat on the kitchen floor which is where I had ended up by then because my legs went. I was so overcome and we talked for about an hour I suppose, just sitting on the kitchen floor, and sort of everything spilled out. And I knew sooner or later that this was going to happen. But it was good to get off my chest in some ways. And I had used the company counselling service before when I had some emotional problem and I knew they were there and I thought this would be a good time to talk to somebody out of the loop.
And you found the counselling helpful. Did you just have one session or you went back for more?
I just had one session and it was just to sort of thrash everything out and sort of go over what had happened and just to be reassured that my reactions were normal really and they were able to do that for me so… I did feel better after that.
About a month after [my husband] came home, I had a, it really hit me one day. We had tears and I just really got upset and my really good friend and neighbour came in and helped me and talked me through it and things at the time. And the company I work for also has a Welfare Scheme that has a company counsellor and I spoke to them. Really because I needed to speak to somebody outside the loop. And they were very reassuring in fact that what I was going through, I seemed perfectly normal, and the counsellor found that [my husband's] brother's attitude was somewhat out of order as well. In fact he said, “I am embarrassed for him” [laughs]. So I didn't feel so bad then. Still haven't seen [my husband's] brother since then, although [my husband] has. We all went up to his Mum's and we are due to go up there this following weekend because [my husband's] Mum's birthday and [my husband's] birthday are within a week of each other and I have to say I have still got a great feeling of being unsure about how I am going to handle the situation. I still find it difficult but not as bad and I think it is a case really just of time being a healer and letting things go. |
