Tag Archives: Hospital

Angels do exist

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I can’t believe just how different I feel from a couple of days ago, to today. There are two people that I really need to thank for it, and both of them are district nurses. I didn’t realise that when I agreed to haveing the enemas done that I would find two such angles amongst those administrating them. Yesterday, the nurse who I think is the boss of the whole group was here and she has not put my mind at rest totally. Even though I knew that I didn’t need a catheter right at this minute, the whole thing about calling for help if I had problems was still bugging me. Anyone who has been reading for a while will already know the palaver that leaving the house and going to and from a hospital is, and although I had been told that I could call NHS 24 who would probably call one of the district nurses out, there still was a huge issue niggling at me.

The district nurses who come to see me, work out of a local health center and although they have a range of different things to hand, it isn’t like a hospital where everything for every possibility is there just waiting. If they did get the call, it would depend on my luck if they could help me or not, simply due to what or what wasn’t, in the store cupboard that day. I might still land up finding myself sitting here waiting for them to find either an ambulance with a stairclimber or a four man crew, to get me down all the stairs to the street. Getting there is usually the easy part, hopefully, made easier due to it being an emergency, it’s getting home that is the nightmare. I could be waiting for hours just to get home again, the worst to date was 7 hours. I didn’t need to explain this to the nurse here yesterday, she was very aware of the horror stories, it was then that she suggested the most logical thing yet, that has been said in this whole thing. She asked if I would like her to order a kit for me, so that if I couldn’t go to the loo, all I had to do, was call them, and someone would come to my aid, knowing I had everything here waiting. As she said, “if it never gets used, it doesn’t matter, it’s there just in case.”

The weight that lifted off me was far greater than I realised when she said it. It was just two weeks ago that I found myself sitting in the kitchen chain smoking and in tears because my bladder hadn’t emitted even a drip for over 10hours. I wasn’t in pain, but I was dreading the outcome, that was becoming more likely by the minute, that call that might have just found me once again at the mercy of the ambulance service. Until we get my bowels working to an acceptable level, it is something that could happen again with ease. When I told Adam later that evening that they were putting together a kit for me, he admitted that he too had been worrying about just the same thing. He has suffered alongside me on many occasions, and he knows as well as I do, what the effect on me is. I hate to say this, but it is so rare to come across someone in the NHS who works on logic, not procedures. I really feel that I have found a group of angels, who are going to do whatever they can to make my life easier. Although I haven’t yet spoken to them about it yet, I know from the little they have told me about their work, that they are also the people who will be with me through to my end. They provide the palliative care that I was so lost about months ago.

Actually, the whole plan that I was putting together stalled, when I found out that Jefferys’ grave, was in my ex-husband’s name. That is now all sorted out and the grave deeds have been transferred into my name. I don’t know why I haven’t picked up from where I left off, but I didn’t. I guess there was so much going on when the corrected deeds returned from Aberdeen, that it all sort of landed up shelved. I know they say that when you don’t carry through a plan, it’s because you don’t want to, that’s not the truth by a long shot. All those who matter, now knows my wishes for what happens after I die, and that I have found the funeral directors who actually have the package that I want for my funeral or “none funeral” would be closer. I just need to make a phone call and get the whole thing set up and paid for.

We do now have the whole issue of carers sorted out and we have made our first contacts with the social work department, so we are moving forwards with other pieces of what will happen as the end get’s closer. It’s just things haven’t quite happened in the order that I had them planned in, but that’s life I suppose, best-laid plans and all that. I guess when I started this post by saying that I am in a very different place from just a few days ago, is the reason why I once more feel that I can even think about my plans. I have been in a constant state of flux for a long time really. I’ve moved forward one step and found myself going backward before I even noticed. I now feel that I have the right people around me, so if anything else tries to knock me over, they are there to help me get back to the surface again, and that’s something really special to have.

 

Please read my blog from 2 years ago today – 10/08/2014 – No friends

It’s one of those rare Sunday’s, I am typing in peace, no snoring from the settee as Adam has actually decided to sleep in our bed. I really shouldn’t mock it has been several years since he chose to start sleeping on the settee just so I could get the undisturbed sleep that is essential. At first, he would sleep here until I appeared and then head off to the bedroom, but slowly that stopped, he…..

Could there be more?

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I sat last night on the edge of the bed and tried to talk to Adam about what the doctor had said to us when we were at the hospital on Tuesday. I was hoping that he would be able to see it from another angle, to give me something to work on, or believe. I tried putting my understanding of what was said in several different ways, but all of came to the same point. “That we had been told there was nothing they would do, as they weren’t prepared to operate on me, for anything other than a total emergency, and therefore, I was on my own. It wouldn’t matter how bad things got, how much pain I was in, or anything else. They quite simply wanted me to take more and more Morphine, to try and cover the pain, until I died.” He annoyingly just kept saying the same thing, “I can see why someone might have taken what he said that way”, then went silent. Even when I pushed by saying things like, “Well, is there any other way of seeing it?” He just sat there silent, offering me nothing at all. I could come to no other conclusion than, he had also taken it that way, but was desperately trying not to say it, because if he did, he would then have to admit, what was happening.

This is where Adam and I are so different. I don’t have a problem with saying that basically, I am being left to die. My guts are being expanded every day because the nerves won’t push the stools through, it just compacts them until everything is pulled tight. It has become increasingly painful over the last 4 years since it started and like all skin, there will be a limit to how far it will stretch. If any part of it fails, well the issues of a perforated bowel, are something no one wants. It is a fact that more and more nerves ending die daily throughout me, the time will come when those in my gut, are diminished to a point that they won’t trigger enough muscles, to do anything worthwhile. But long before either of those things happen, I am going to find it increasingly hard to breathe. I already have problems thanks to the pressure from below, pushing upwards on a weakened diaphragm and lungs, which have their own issues with dying nerves. It doesn’t matter what the doctors want to do or not, I am dying. On Tuesday, they just added another way that it might happen, that I hadn’t quite grasped. So Morphine, here I come.

I had thought that Wednesday was going to be just a day. The carer was due here to give me a shower, but having got through last week, I was feeling much better about the whole thing. I haven’t exactly been thinking about their visits, but slowly, whenever I found my thoughts in their direction, I was gradually feeling calmer as the days ticked on. Even when I started laying out my clean clothes and making sure all that was needed, was on hand for her arrival, there was calmness that was totally missing from last week. I guess that our brains work on these things without us even knowing. As the day ticked on, I have to admit there was a slight apprehension that grew, but it was just slight. I kept myself busy as always, but as 4 pm arrived, so did my first attack of nerves, nothing over the top, just enough to know it was there. It wasn’t until much later when Adam came home, that I found the perfect example of what had been happening to me between 4 pm and her arrival.

Adam is the sort of person, who if he is expecting someone to call, reacts to almost every sound from the road outside, by standing and staring out the window, to see if it is them. Clearly, I’m not going to keep going back and forward, I’d be exhausted, but I still do the same sort of thing internally. So here I was, sat here, winding myself up every few minutes and being ready to head to the intercom to let her in. I waited and waited. 4:30, 5 pm, 5:30 all came and went, and no sign of her, just me getting more and more stressed. Then the front door opened, 6pm and Adam was home from work. He took one look at me and knew exactly where I was, on the point of tears. He made a phone call, but only managed to get connected to an answerphone. Adam was furious in front of me, but when at 6:30 the doorbell rang, he became his usual amiable, jovial self. Two and half hours late and there was the carer as though nothing had happened. She said that she hadn’t been told about the need to be here at 4pm, but I found that hard to believe, as Jane, the carer who was here last week, knew all about it. By that point, I was so tired, so wound up and totally unable to even think about going in the shower, help or not.

Adam eventually spoke to someone at their office on Thursday, and they too said that the stress on timing, hadn’t been passed on to them. They have also reassured him that this will not happen again and that I will be seen as near to 4pm as possible. All we can do is wait and see what happens, but right now, I’m not exactly filled with optimism.For weeks now, I have been searching for the point where life will just feel normal, not stressed, not tied up in things to do and I can just have what feels like a restful day. Somehow, I don’t see that happening anytime soon.

 

Please read my blog from 2 years ago today – 18/06/2014 – Home to Mother

Teressa called last night to let me know that she and John will be here at the beginning of August for a week. I guess we will be able to spend quite a bit of time together as unlike Christmas the rest of the family and friends in Scotland will be working. She always sounds so happy these days, not like when I would hear from her when she was married to her first husband, then she always sounded…..

Beyond black and white

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I was at the hospital yesterday, the last of a list of appointments that I knew were ahead of me, back in January. Yes, it has taken that long to get an appointment, and it was the longest appointment I have ever had. Nothing to do with getting there or back, it honestly was the appointment. Both Adam and I were so sure that it was going to be the perfect trip. The appointment was nice and early, and that usually meant we were seen and home within a couple of hours, so we left here light-hearted, even though we were without a doubt late for the allocated slot.

We arrived in the waiting room at 9:40, twenty minutes late, but we were whisked straight into a consultant room. The door shut and we expected it to be opened in minutes by Dr. Hair. It was, but just long enough for him to put his head around it and tell us that he wanted one of his colleges to see us, to see if he might be able to come up with something he hadn’t thought of when he saw us 18 months ago. It was Dr, Hair, who put me on to psyllium, and a range of other things that we tried without much luck, and told me to throw away all the different laxatives, that my GP had me on. Since we saw him, I have had psyllium in my daily diet and he was totally right, it does help. The actual production and getting rid of stools is much smoother, but it hasn’t fixed the problem that I have with pain throughout my intestine. Since that visit, my gallstones have also flared up many times, and the combination of pains has made me far more than just miserable at times. Not even taking my booster dose of 10mg of Morphine always deals with the pain, it just keeps coming.

We sat there waiting, with the odd head appearing every now and then, but none of them coming into the room. One of them, eventually told us, that the doctor we were waiting for, was coming across from the Sothern General, to the Victoria, to see us. It is a good half hour drive between the two, so we eventually understood why we were waiting. It was in fact, a full hour and fifteen minutes we were sat there before he arrived. I’m sorry, but his name escapes me now. He for once, though, had read my notes and had a good idea what he was faced with. I filled in what had been happening since and why I was once more sat there. For once, my intestine hadn’t done what it often does, emptied just prior the appointment, I had a full gut and the perfect condition for him to palpitate and examine. Then it was down to what he had to say. He totally agreed with what I believed, that the nerves to my guts are dead or dying. They can not and will not supply the messages to push things through me and it’s a case of it all packing in tightly until it lets go of a length from inside me, then slowly packing in again. The pain is from my intestine being overstretched. The occasions when I throw up is because they are quite simply, unable to move things in any other direction. So what to do about it.

We firstly discussed the option that I dread, a stoma. Both of us are in agreement, that as long as we can make them move at all, it is an option that I don’t really want. For me, it’s the physiologic issues of having a bag of poo, stuck to my side forever. For him, it is the medical complications that go along with such an operation, complications that he thinks for me would be vast. What I really want, is to get rid of some of the pain that I am plagued with, after all, that is why I was there. He explained that even if they did do that operation, it didn’t mean the pain would end, with there being so much damage done to my nerves, it might continue, gut’s or not. Then we went to my gallstones. I thought, one quick operation and it would be done, surely they could do that for me. He told us all the horrors that such an operation could bring with it. According to him, it isn’t the quick operation that I had in mind. Once he went through all the nightmares he could think of, he added in, “and then, it is if the anesthetist is willing to put me under an anesthetic, something I’m not sure they would, with your current medical state.” I was sat there feeling totally deflated and feeling as though I was as always, stuck alone dealing with it all.

There was only one question I had to all he was telling me, “Is there nothing you can do without surgery?” It was then that he told me that there is a drug they sometimes use to dissolve gallstones, it’s not always wildly successful, and they have to be sure that the stones aren’t calcified, but yes, we could try that. As for my bowels, well the only thing he came up with, is trying to stimulate my bowels to let go without storing as they do. To do that, I will require the district Nurse to visit every couple of days and give me an enema. Yes, that was tried four years ago, but only for a couple of weeks, not long enough to see if it will actually work. One x-ray of my gallstones later, and a couple of cigarettes and to our total shock, we were on our way home again.

So here I am, with the facts all in my head and the final confirmation from a doctor that my body is failing step by step. There isn’t a single part of me that this damn illness hasn’t worked on destroying. Follow that Vagal nerve and it’s branching and you have the full picture of what it’s playing with, and what it’s destroying. People see MS as a condition that affects limbs and minds, no one really talks about how it also destroys everything inside you as well. I believe, that all I have left that it hasn’t had a go at yet, is my liver and kidneys, but it might have, I just don’t know. There is nothing they are willing to do for me right now, which actually means, there is nothing they are willing to do, full stop. As my health is only ever going to get worse, well this is it. They will tinker at the edges, play about with those odd possibilities, but as for the major stuff goes, forget it. The biggest answer that I had from them, was to take more Morphine to deal with the pain. I guess that is the story of my future, just take more Morphine until something fails totally and it’s over. I guess that I sort of knew that before I went there, but having it said to you so clearly, well, it puts a new edge on it. I still have much to think about, not least that I will have to have someone else coming into my home, to “care”for me, because I can’t. I knew a few months ago that life was changing, I just didn’t realise by how much.

 

Please read my blog from 2 years ago today – 16/06/2014 – Setting Summer out

Summer is beginning to appear, yesterday for the first time I was aware of a true change in the temperature. Clearly it has been rising for a while, otherwise, I would still have the central heating on, but yesterday the house felt just that bit too warm and I actually put my embarrassment to one side and ditched my dressing gown, I haven’t even bothered to put it on today. Now I know most people……

We have to give it some love

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I have discovered that chalk and cheese really do exist, and not just in the flippant words of someone desperate to visualise to the world. Yesterday, for me was without a doubt, the cheese, well, to me, cheese is always the good side of that phrase, as I have never had a great use for chalk. The trip to and from the breast screening clinic went without the slightest hitch. In fact, we were actually home again, before the time I had been given for my appointment. I know that doesn’t sound right, but trust me it was. The ambulance arrived incredibly early, it wasn’t long after 9:15 am when it pulled up outside the house, my appointment wasn’t until 11:58. Luckily, the system in all NHS units in Glasgow is the same, as soon as possible, if you have arrived by Hospital transport, you are seen. I know that may not sound fair on those arriving on time for their appointments, but it is the only way that it can really work. It would be pointless having ambulances arriving to take people home if they are held up in the waiting room. So we are always in and out, even though we often have to wait hours to get home again. Today though it worked the way it always should, dropped off and picked up again an hour later. And yes, the stairclimber worked perfectly both ways, down and up again without a hitch. Well, just one, my top is one of those that actually comes down to your knees, but when I sat down, I forgot to pick up the free material, and it caught in the wheels. Just as they had just gone down the first step, when everything came to a halt. My top now has a tiny hole in it, but at least it didn’t cause the stairclimber to breakdown as it is so keen on doing. I did though have that horrid sinking feeling, as it flashed through my mind that we might be stuck, just as we were last week.

For those who haven’t been for breast screening, it is the simplest and most painless process I have been through for years. I had been for a screening once before, about 20 years ago now. Back then, you entered a room to be faced with this huge piece of machinery that was daunting, to say the least. It has now been changed for a far more streamlined version that doesn’t clunk and whir but is totally silent. It isn’t the most comfortable thing in the world, to be stood there with one breast clamped to the machine by a see-through plastic vice, but it is nothing more than a sensation of being squashed, and each image takes second for them to take. 20 years ago, you were clamped by what felt like an iron vice as your breast was squashed by a metal plate that contained the x-ray film. Somehow, being able to still see your breast, even though it is in a way and shape you’ve never seen it before, is slightly more comforting. But, for me, it was the second time that morning that I had that sinking feeling, a flash of doom being stood beside me. As I said, I had to stand for them to be able to take the x-rays, and as you know, my legs aren’t exactly trustworthy. I just had this horrid image in my mind of them suddenly giving away, and the question of what would happen if they did. Well, you can’t blame me for wondering for just a second, how tight that vice really was, and which was stronger, my skin, or its hold. Trust me, I did my best to get rid of the image.

I now have 6 to 8 weeks to wait, before I will hear the results. Because of Adam’s mother having not long ago gone through the exact same test, I know that if they find anything wrong, you hear a lot sooner than that. So in a way, the longer you wait, the better the odds that its good news. By the way, his Mum is doing really well and seems to have made a full recovery from her mastectomy. She has had the results back as well from the pathologist and no more treatment is required. They say that there were no signs of cancer spreading outside the actual lump, so she won’t even have to have chemo, which is brilliant news.

As the clinic is actually in the city center and not at our local hospital, we had the chance to chat to the attendants. It is actually quite good getting to talk to different ones in a short period of time, as you start to build a fuller picture of the truth of what is happening in their work. There is no secret that they NHS is doing it’s best to deter people from using the ambulances service unless they are really needed. In the last week, I have heard of people who have insisted that they need someone with them, just for their carer to go and do their shopping, while their so-called charge, is actually in the hospital. Not quite what they are there for. Adam comes with me, as I am inclined to get very unsettled and at times distressed by the whole process. The hospital transport system is there for those who can’t get to their appointment any other way. Even being in a wheelchair, isn’t really a good enough reason, as every black taxi in the city can take wheelchairs. If you are hard up, well all you have to do is hand in the receipt, and the NHS will pay for it, it’s far cheaper than the cost of an ambulance. The unfortunate truth, of many people’s view of the NHS, is that they have either paid for it in their taxes, or that it’s free, and there to be used. Is it any wonder that the entire system is under stain.

According to the crews we have spoken to in the past few days, they are about to outsource the hospital transport side, to the red cross. I personally find that a little daunting, not that I expect them to be unable to get me out of the house or to the hospital on time, but I am concerned, just as the crews are if they will be up to the demands of the role. The NHS have years and years of experience, and even their systems are just creaking at the edges, but all the way through. We have lost count of the number of trips that have been canceled, or there haven’t even been any ambulances available, for the date of my appointment. So OK the red cross is huge, but is it big enough in Glasgow, to do the job? I know only time will tell, but it is so wrong that it is happening at all. The people of the UK have to start understanding what the NHS is there for, and how to use it, or we are going to loose all of it.

 

Please read my blog from 2 years ago today – 02/06/2014 – A factual conclusion

I went to bed last night feeling truly awful, it was one of those times that if I had laid down and died, I actually wouldn’t have been too surprised. I know to some that will sound like a shocking thing to have even thought and many will say why didn’t you call for help, well that is easy to answer, it happens frequently and thanks to a previous post, I know I am not alone. Last night thought I had more than just a feeling to go on, or the fact that I was feeling ill, all day I had put up with……

Mind the gaps

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I seem to be spending so much of my time confused these days, lost as to what is happening and when. I knew, and I have even mentioned them several times, that I have both hospital appointments and on top of that someone from Social Services coming to see me, but as to when any of these things were, well, next week was all that was in my head. It appears next week is far sooner than I thought. When Adam phoned me at lunchtime yesterday, he told me that he had managed to change the appointment with Gastro to an earlier slot on the same day. I had been worrying that going there so late in the morning, would lead to another horror story. I was so pleased that that one was sorted out, as I was quite honestly stressing about it already, and it’s not until the 16th of June, then Adam said something that made the colour drain from my face.

This Wednesday morning I will be at the breast screening clinic. That particular appointment was originally supposed to have taken place back in January. Due to not even being able to book an ambulance for five different dates, it was finally shunted all the way to May. I don’t know why, but I didn’t think it was until next Monday, no, that wasn’t one of the possible dates, just one my brain managed to create all by itself, something it seems to be doing with ease recently. My confusion was all the greater as quite clearly, Monday would no longer be May, but my brain was quite happily just ignoring that fact.

Not surprisingly, the fact I had that one wrong, meant the visit from Social Services had also become muddled. When Adam told me the other day, clearly, I wasn’t really able at the time to take in all that he was saying. He asked me something about would the two being in the same week, be too much for me. What he didn’t realise was that I was confused, so when he asked, I thought they would be three days to recover between them, not just one, plus, I thought I had the whole of this week doing nothing, just relaxing as much as possible, so no problem. Now I am faced with a total nightmare. Today, the shopping arrives, Wednesday, out to the breast clinic, Thursday to rest and then the assessment on Friday. This is a hugely busy and stressful week for me and I wasn’t even aware of any of it.

Dates, times, and appointments, all things that seem to be becoming more and more muddled. It doesn’t matter how many times Adam tells me what is happening, or how many times I have written these things down, my brain is determined to make a total mess of them. It isn’t helped as Adam throws into the mix of chatter about other people, his family, what’s no TV and so on. What should be clear information, lands up in my mind as anything but. Then leave me alone with what he thinks is clear details, and slowly I turn it into anything but. We have come up with different ways of dealing with this in the past, but none of them work and none of them result in breaking my confusion. But that doesn’t mean that we have given up, I have come up with a new idea, one that is at least worth trying. Last night, I suggested to Adam, that every Sunday evening when we sit down together to watch TV, that the first thing we do, is to go over everything and anything that will be happening in the next 8 days. I want him to tell me about what he will be doing, if he has time off, or he’s doing something with his family. If we have hospital appointments or if anyone is going to be coming here. I am hoping that with it being clear defined information, that we discuss face to face, that I will be able to avoid the panic attacks, of being totally lost.

Unless you have lived with confusion, it is something that is difficult to explain. I used to be so good at dates and so on, I never in my life had the need of a calendar or even a diary. I remembered everything, birthdays, days out, you name it, I knew when it was due to happen, at home, outside of it or at work. Finding that you can’t do something as simple as remembering the date of a hospital appointment, is scary. It’s even scarier when you suddenly don’t even know how old you are and have to work it out from the year you were born. Yes, that has happened to me, and more than once. We don’t expect our minds to drop information that simple and that vital, so when you are searching wildly for the answers, the fear starts to grow and just makes it worse by the second. It feels as though someone has managed to get inside your head, and has plucked all that you need that second, out of its home and planted it somewhere else, it’s just you don’t where. You run from place to place, to place, getting more and more desperate by the second. Should it be a case of someone else, telling you, you have it wrong, the effect is even worse.

I had without any doubt in my mind, the next two weeks planned out, I knew where I was going to be, what I was going to be doing and I was safe. Suddenly, all that knowledge was ripped into tiny pieces and I was standing there desperately trying to catch each piece as it fluttered just out of reach. It was out of reach because I knew where it was meant to be, I had known for weeks, so how could this new information possibly fit into my life. Making it fit was like picking up a mallet and voluntarily hitting myself over the head with it and I had to do it, as I now trust Adams brain, far more than I do my own when it comes to this sort of information. Once you find your brain letting you down, even if it is within defined parameters, you start to mistrust it in others, but there is only so much double checking that you can do before you drive yourself insane.

Watching your brain fall apart isn’t that easy to live with. I tried for a long time to pretend it wasn’t happening, but it is, and I know I can’t pretend it’s not any longer. It’s a growing fact, and something I am becoming more and more aware of. Which in an odd way, I guess is good. If I wasn’t aware, well I would be in a far worse place than I am.

 

Please read my blog from 2 years ago today – 31/05/2014 – The small things in life

I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing……