Hospital Stays

Its been over a week since I last posted to this blog. I haven’t been feeling too good this week but have luckily managed to avoid a trip back to hospital. This is quite probably going to be a post that I just come back to in the future rather than creating new posts for each visit but we’ll see.

Before I go on I think its important to point out that any comments that might come across as negative are not aimed direct at the doctors and nurses, who I have the utmost respect for. They perform a difficult task under terrible conditions controlled by a government that is hell bent on using them as some kind of political football. Although we have a Tory government back in power I’m pretty certain that their lot would not be made any easier by whichever party had been elected.

My first stay in hospital was during the run up to the UK general election and as you would expect it was a topic of conversation for a lot of the patients and the NHS staff. One of the nurses told me that they didn’t need the extra money (didn’t the Tories say they could find £8bn – apparently from thin air?) being called for by the head of the NHS, they just needed what they had to be managed properly and for the correct services to be in place for the correct patients, i.e. social care should be available for the elderly patients who were simply being kept in hospital because there was no one available to care for them in the community. I was a bit surprised because lack of staffing has been something I’ve witnessed on all my visits to hospital. I don’t think I’ve ever seen anywhere under so much pressure. I also wasn’t surprised by the number of nurses I spoke too who where thinking about alternative careers. Anyway these are just observations during my stays.

First Stay

My first stay in hospital following my diagnosis was from 27th March 15. I woke at about 5am feeling ill. I was shaking uncontrollably and had cold sweats. I’d had a bad night because of pains in my back and pelvis. Nicola and one of my daughters helped me out of bed, no mean feat as I could barley move and was in agony every time I moved a muscle. I got too the bathroom and vomited. Although we had been told to to call the hospital if my body temperature went above 38 degrees or anything wasn’t quite right we still hesitated. I didn’t feel right calling them because I wasn’t feeling too good. In the end Nicola called the cancer ward at the hospital and they told me to come into hospital, straight to the admissions ward rather than via A&E. We turned down the offer of an ambulance and said we’d take the car and just go direct. This was my first mistake. It must have taken a good 45 minutes just to get downstairs and then into the car. I was in agony. When we got to the hospital we faced the challenge of getting me out of the car again.

The first day was taken up with blood tests and regular observations. The hospital suspected an infection but needed to run tests. The following day I felt a whole lot better and got myself up out of bed to go take a shower. Whilst in the shower my back went into a spasm and I collapsed. It didn’t last long and I managed to make my way back to bed. I didn’t bother telling the nurses. A few hours later I got out of bed went to the bathroom. The spasm came again and again I ended up on the floor. It didn’t last long and I managed to get back to my bed. A couple of hours later I got up again and was just walking away from the end of the bed and it happened again. This time the nurses saw it happen. That was it I was going to be kept in, I wouldn’t be heading straight home – as I’d hoped I would be.

A doctor came to see me and we were just started discussing what had gone on when two more doctors arrived. One of them explained that they were from haematology, had seen my details on the board and that “I was one of theirs”. They pretty much brushed aside the doctor I’d been talking too and although he didn’t look too pleased he was professional enough not to say anything. This new doctor got me to explain everything again. I explained that I was already on a MST (morphine) medication but that it was doing little to ease the pain. She said she would sort it and at the earliest opportunity she would have me moved to B28 (the cancer ward). A short time later I asked one of the nurses for some pain relief and after a short wait she returned and gave me a couple of tablets. I didn’t give it a second thought and just took them. It wasn’t until afterwards that I asked what they had been. The nurse said that all my other meds had been stopped and I’d been prescribed Tramadol by the doctor I’d seen earlier. I was livid. I explained to the nurse that Tramadol was not a good drug for me but there was little she could do as that was the doctors instruction. She said she would speak to another doctor and have the prescription changed. I believe that the problems that followed stemmed from the doctors failure to take the time to talk to me coupled with my failure to check and what was being planned for me.

In the evening I could hear an argument break out between one of the ward sisters and someone on the other end of the telephone about a ward that had been closed for infectious control. The sister was providing an argument for re opening the closed ward as it was leading to a back up of patients in A&E waiting to be admitted into hospital. A couple of hours later and the arguments were still going on and at about 2130hrs I heard someone say they were opening the closed ward. Ten minutes later a group of healthcare assistants came into the ward and told us we were being moved. Sure enough ten minutes later I was being wheeled through the corridor to the next ward. As we came up to the new ward there where still signs on the door saying the ward was under infection control and was closed. This was pretty alarming as from being diagnosed I’d been told that I would need to try and avoid infections such as colds etc as the slightest thing could lead into sceptic episodes. I had no idea what infection was on this ward but I was pretty unimpressed.

As we went on to the ward I tried to explain to someone who I took to be a nurse that my illness meant I was supposed to avoid infection and to ask when I would be moved to B28. She said I wasn’t being moved and If I wasn’t happy I should speak to a nurse or ward sister. I hadn’t worked out the uniform colours and was clearly speaking to the wrong person. Another nurse came in so I repeated my questions to him. At first he ignored me and then after a few minutes silence he said that I wouldn’t be moving again tonight and that I should just try to get some sleep. There wasn’t much more I could do. I was knackered, felt terrible and decided just to wide my neck in and go to sleep. The following day I was moved to B28.

On B28 I was put into a side room on my own. A very large and pleasant room with its own en suite and fridge. The room was set back and before entering you had to go through a smaller room where you could wash and apply anti bacterial soap. This was presumably because the hospital still thought I may have picked up an infection that had put me in hospital in the first place. By now infection was the least of my worries. In myself I felt ok but the spasms in my back where coming far more frequently and I was in agony. One of the nurses had checked the medication and been prescribed and questioned why I had been put on Tramadol (an opiate) when I’d already been on morphine and was also being given Oromorph (a liquid morphine) every four hours. She said it wasn’t wise to mix the two. I’d explained what had happened upstairs on the other ward so she went to see a doctor and got everything sorted out.

By The third day I couldn’t walk at all. The pain even through the morphine was horrendous. I’d also come to feel very depressed in my new room. You didn’t see anyone other than at visiting times or when the staff came to carry out observations. This left me with a lot of time to myself and I found myself for the first time reflecting on what had happened in the preceding weeks. It wasn’t a nice place to be in. Very morbid and very dark.

The doctors suspected that I may have blood clots on the lungs as they hadn’t found any infections so they ordered a VQ scan. That was interesting. I couldn’t move from my bed to the trolley without been lifted across by the health care assistants and nurses and then when I got to the scanner they had to lift me again.When I got back to the ward I had to moved again. Half an hour later another porter arrived and announced he was taking me for X-rays, I was gutted. I hadn’t known that X-rays were planned and I was going to have to go through the lifting experience again. This time when I got back to the ward they where transferring me from the trolley back to my bed when someone pulled away the slip board too quickly and they almost dropped me on the floor. The pain was hideous. The next days were spent with the doctors experimenting with various pain killer mixes to try and get my pain under control. I also received visits from Physiotherapists who eventually managed to get to my feet and walking with the aid of a stick. No more than a few paces but I was up and about. The doctors were very pleased with this and suggested I should go home. I quickly agreed. After my week of hell I couldn’t wait to get home. That was my second mistake. I was released from hospital. The last thing they said to me was take it easy and don’t use the stairs.

Second Stay

I’d only been at home for three days. I hadn’t been able to use the stairs even if I’d wanted to as I was in so much pain. I’d spent three days sleeping on a recliner and was in a bad way by the third day. On the third day Nicola had managed to help me upstairs and I’d managed to get onto the bed. By the afternoon I couldn’t get back off the bed and felt ill. My temperature was up over 38 degrees but for me it was the lack of mobility that was the biggest problem. The slightest movement had me in agony. This time we called the ward for advice without any hesitation. They again said I needed to go back to hospital but this time we called for an ambulance. That was probably one of the longest drives I’ve every taken. The ambulance crew where extremely sympathetic and had driven to the hospital at a snails pace but I could honestly feel every bump in the road. After a couple of hours in A&E, some blood tests and a good dose of morphine direct into the vein I was sent up to an admittance ward and then in the early hours of the next morning transferred down to ward B28. One of the health care assistants told me that no one was surprised I was back and that I’d been discharged far too quickly and without a proper support plan in place.

I was placed in one of the bigger wards, on B28 you still have far more space than the general wards as there are only 4 patients to a ward. The first two nights I couldn’t move out of bed/ They were very exhausting nights as two of the patients on the ward were extremely ill. Both were a lot older than me and were having a really bad time. One of them had Myeloma like me. He was what one of the nurses referred to as a “sundowner”. A sundowner is a patient who will be quiet/asleep all day and then in the evening as soon as it starts to get dark will come to life. This fella did exactly that and was up all night. He was confused and wasn’t fully aware of where he was or what was going on. He would try to get up during the night regularly and would often pull out the various lines attached to him. The floor was swimming in blood and the nurses would just have to clean it all up and get him settled knowing that within the hour they would probably have to do it all again. I don’t know how they do it. To remain so dedicated to a job that is so difficult.

I was speaking to the lads wife and she said that he’d be horrified if he was aware of what was happening having been very independent prior to being brought into hospital but he’d had some sort of issue with excess calcium in his blood and this was the root cause of the problems. I really felt for him. Its a perfect example of how two people diagnosed with exactly the same thing can present so differently. Up to this point my problems have all been around mobility.

After a couple of days one of the nurses came and offered me a side room that was becoming available and the opportunity to get some rest having had a couple of difficult nights. I think she was a bit taken back when I refused it but I explained that I hadn’t had the best experience in the previous side room. I’d spent the day talking to a lad who had been brought in and who was also from Washington. He thought I was mad for turning it down and He accepted the room when it was in turn offered to him. He spent a couple of hours talking me into taking the room if another one came up. Another room did come up and I was given the chance to change my mind. I did change my mind and took the room. This was the end of the mistakes as it gave me a chance to rest properly.

I spent the rest of the week working with physiotherapists and occupational health team to get up and move around. The physiotherapist had also been annoyed that I’d left the hospital in the previous week and said she thought I’d been released too early. They came in every day and got me walking with a walking frame and a couple of walking sticks. I’d also have to pass a stair test, that is be able to get up and down a flight of stairs before I would be signed fit for home.

The occupational health team have a flat in the hospital where they can try certain aides and work out what you need when you get home. They also evaluate how much support will be available too you in case you need access to a support team. All of this should have happened in my first stay but never mind it was happening now and I felt better for it.

The doctors continued to sort out my pain relief and eventually got me onto the levels I’m on now. By the end of the week I had passed the stair test and would be coming home with a load of equipment to help me at home including a wheelchair, walking frame, walking sticks, seat risers, perch stools, leg raisers, bed boards etc but at least I was going home and this time was in a much better place.

Third Stay

My third stay was about a week after I’d been released from hospital for the second time. I had attended A&E on the Wednesday night with severe back pain but they doped me up and allowed me to go home. I was meeting my cancer nurse at the Phoenix day unit the following day anyway. By the Thursday morning I was feeling a lot better and headed off to the hospital. They already knew about my visit to A&E the previous evening and were also concerned that my temperatures had been spiking. I went into hospital feeling great but they decided that I needed to be admitted.

It was one of the first days I hadn’t taken a hospital bag with me ( just in case) so when we got to the ward I asked Nicola to head home and grab the gear I’d need to stay in hospital. She’d been gone about 30 minutes and I was just sitting reading the paper when a hideous pain gripped my chest and breathing became extremely difficult. The nurses where quickly on hand to help. They hooked me up to a new ECG machine they had. Unfortunately the machine insists on a whole bunch of information being fed into it before it will run a heart trace and because I hadn’t been on the ward long they couldn’t get it to work as they didn’t have everything they needed. The nurses where pretty unimpressed and filed a complaint. Again nothing they could have done differently, just the wonders of modern technology.

They doped me up to relieve the pain and asked for a doctor to see me. The ECG didn’t show anything and the morphine settled the pain so they just monitored me. At about 1930hrs the same thing happened again. The pain was off the scale. Easily a ten or above. By the following day I was feeling good again – very odd. My consultant worried about blood clots on the lungs again so ordered a CT scan. He’d been trying to avoid a CT scan as they like to try and protect the kidneys, particularly for Myeloma patients who often end up suffering problems with kidney function as your kidneys are working overtime. From the beginning of diagnosis you are advised to take three litres of fluids a day as a minimum. A CT scan, also known as a CAT scan, is a specialised X-ray test. It can give quite clear pictures of the inside of your body. In particular, it can give good pictures of soft tissues of the body which do not show on ordinary X-ray pictures. The CT scan involves injecting a dye (in most cases) into your blood stream so that they can get a good picture of what is happening on the inside.

On this occasion the scan showed that I’d developed pleurisy (chest infection) and the movement of this was the main cause of the chest pains I’d been suffering. A good dose of anti-biotic was added to my daily drugs menu and a further x-ray booked for six weeks time to check it had cleared up properly. I was allowed to go home after about a week.

A few days after my hospital stay I was also asked to see the spinal consultant. He has confirmed that the myeloma has caused some softening of the bones in my spine and that some of the bones are starting to crumble and drop. There are procedures they can carry out to help but he recommended that we wait a few months to allow the chemotherapy to get out of the way, although he did agree to see me sooner if required. Its suits me fine as I’m not sure I can cope with surgery to my back at the minute. Still its all pretty positive, not only do I now have some real answers for some of the pain I’ve been going through and thus the mobility problems but I also have treatment options for the future once the Myeloma is under control.