Neil Jefferson
Neil's Cancer Challenge Update
Fundraising for Marie Curie
Story
Thank you for taking the time to visit my JustGiving page. Many of you will know me as the Land Director for Explore Living others as friends, family and former colleagues.
I considered myself to be reasonably fit for my age when I turned 50 back in October 2010; I was a regular gym user and spent a lot of my free time walking my dog and hill walking in the mountain ranges of Britain. I was a little over weight and probably drank a little too much alcohol but nothing too much to worry about. Shortly after my birthday I had a full company medical and got a clean bill of health. Little did I know that there was an insidious cancer growing in my bile duct. In fact little did I know that I even had a bile duct. (the Bile Duct takes bile produced in the Liver into the stomach where the bile helps break down fat in the stomach)
At the end of August 2010 I developed Jaundice caused by a blockage in my Bile Duct The blockage was initially thought likely to be caused by a Gallstone, I was admitted to the Rivers Hospital in Sawbridgeworth, a private hospital courtesy of the PMI Laing ORourke provides for its employees. I was put in to the care of Dr. Ed Stoner a Gastroenterologist who inserted a stent in to the bile duct and took some dustings of the blockage material. Although the procedure was a success, I unfortunately developed pancreatitis. The pancreas connects to the bile duct and became aggravated by the activity causing it to omit unpleasant chemicals making me very ill and resulting in a nine day stay in hospital connected to a drip, rather than the over night stay that had originally been planned. This however turned out to be an unpleasant distraction from the main bad news. Dr Stoner had the unpleasant job of informing me that the blockage was not Gallstones but a cancerous growth.
Cancer of the Bile Duct is a very rare and aggressive form of Cancer. The treatment recommended is major surgery to remove the bile duct, the gall bladder and part of the pancreas and then stitch everything together again. There was a danger that I may loose my entire pancreas which would leave me a diabetic. My surgeon informed me that if all went well I should make a full recovery and return to my normal activities (eventually). Surgery was initially booked for 13th October. I was told to expect to be in hospital (The Princess Grace Hospital in London) for up to two weeks, followed by a couple of months of home convalescence.
The jungle drums stated beating and I was overwhelmed with many lovely messages form friends and work associates wishing me well and asking to be kept up to date with my progress. I therefore decided that a blog of some form would be the best way of keeping everyone up to date and from there decided to try and make a positive out of a negative and raise some money for one of my favourite and as it happens relevant charities. Marie Curie Cancer Care.
I have set myself a challenge each year for the last few years to raise some money for charity. Many of you have kindly sponsored me.
2008 – 10K run for Cancer UK
2009 - Hope Challenge for Hope for Humanity
2010 – Three Peaks Challenge for the COINS Foundation
2010 – Party for Friends of Wallace Animal Rescue Kennels
I had planned to have a year off charity fundraising, however as I now faced my biggest ever challenge I decided to try for my biggest fundraising target so far £10,000. This fundraising page is the result.
My surgery in October was cancelled as a scan of my pancreas showed that it had not fully recovered from the pancreatitis. I had a drain inserted into my liver to remove bile that was still not flowering sufficiently and had to wait until November 24th for my surgery.
My surgeon informed me the following day that he had found that the cancer had spread to my liver and stomach lining. Surgically removing the cancer was no longer therefore viable and instead a bile duct bypass was carried out and my gall bladder removed. Chemotherapy was now the best option for extending my life expectancy.
I started Chemotherapy treatment on 16th December 2011, which will continue until May 2012. The treatments run in eight three-week cycles whereby I have treatment one day on weeks one and two and then have a break on week three. A nurse who comes to my house administers the chemotherapy drugs intravenously. Treatment commences with a mixture of saline to make sure my kidneys are well hydrated and a steroid anti sickness drug. I then have the first chemotherapy drug, which is about a litre of fluid; this is followed by a small bag of magnesium. The second chemo drug is then given and finally followed by more saline to flush through the vein. The time it takes depends on how well the vein flows but usually lasts between three and four hours. Although I am able to get up and move around during the treatment it means carrying the stand from which the fluid bags are hung. I therefore try and limit the need to get up by getting everything I will need within easy reach of my sofa. If I bought a commode I would not need to move at all. The following is my checklist.
Neil's Weekly Updates
Saturday 7th April
I suffered from stomach and back pain whilst out with friends in a pub the afternoon which was difficult to copse with until I got back. I felt quite good by the evening but then had a rotten night again.
Sunday 8th April
I had further back and stomach pain whilst out walking this afternoon, which I managed to sort out with a hot shower and a trip to the loo when I got back. At last I had a descent nights sleep.
Monday 9th April
Backache again was a constant pest during the afternoon. I also suffered badly with acid reflux, which tortured me for a while. I felt pretty lousy all evening and skipped dinner. I then had another torturous sleepless night.
Tuesday 10th April
I had a better day today pain wise but unfortunately another bad night. I am going to arrange to see the doctor to get some stronger pain relief, as paracetamol is no longer helping with my back.
Wednesday 11th April
A nurse came at 10am to take my pre chemo blood sample. She had problems taking blood again and had to stab me three times before she found a willing vein.
I received a call from Sarah to say that she would be coming to give me my chemotherapy tomorrow at about 9:30 am. She also told me that although my neutrophil count was ok (2.2) I was still anaemic and lower than last week. This has been reported to Dr. Bridgewater who wants me to have a blood transfusion.
I was feeling nauseous and had back and stomach pain when I went to bed. This included constant acid reflux and consequential belching, which I could only really relieve by either sitting up or getting up. As soon as I lay down I would start gurgling inside and feeling uncomfortable. In the end I gave up lying down and finally went to sleep sitting up in bed
Thursday 12th April
As with the blood test yesterday Sarah the chemo nurse had trouble finding a suitable vein. It was only at the third attempt was she successful. That is six needle holes in my arms over the last two days. It is just as well I’m a brave boy. Notwithstanding the initial problems the vein took the drugs well and we were finished by 2:30pm with little problems from my back.
Friday 13th April
I felt a little nauseous and didn’t really fancy any lunch. I made myself a bowl of soup, which I ate but had little stomach for the bread that I tried to eat with it.
The nausea continued in to the afternoon accompanied by back pain.
The backache returned again in the evening so I took one of the Tramadol tablets the doctor had prescribed. Having last had these following my operation last November, I knew how strong they are and was prepared to feel a little queasy the first time I took one. What I was I was not at all prepared for was for the back pain to continue once the painkiller kicked in. I waited for the expected pain relief and it just did not come. I therefore had another terrible night of constantly having to get out of bed to stretch
Saturday 14th April
The brutal night of pain and frustration left me feeling quite tired and jaded this morning. I wasn’t feeling that great myself when we got back. My stomach had been hurting a bit whilst we had been out and I now felt quite nauseous
I went on the Internet this afternoon and found some lower back stretching and strengthening exercises and carried out some of the ones I was capable of. Some that involve using the abdominal muscles are still a little difficult, as they have not fully recovered from last November’s surgery.
By late afternoon I was feeling rotten, I sat down in the lounge and got my dog on my lap so that we could consul each other. I dozed for a while and then woke feeling quite sick and uninterested in food by the time Lesley served up dinner. I ploughed my way through half of it having to force it down in the way that I did when I was struggling to eat after I came out of hospital. I found this quite worrying, as I really don’t want to go back to that state again.
For the first time in a while, I had spent the evening without any back pain. I had taken some paracetamol late afternoon when I started to feel pain coming on and they seem to have done the trick. I couldn’t believe it was down to the back exercises but did relish the thought of perhaps getting off to sleep before the pain returned. I then remembered the advice that nurses had given me in hospital when I was suffering from pain. They told me that it was easier to prevent pain before it starts than to cure it once it has.
Whilst I find the concept of popping pills when I don’t feel in need of them a little alien, the memory of last night’s torture and the thought there might be the chance of a descent night’s sleep was worth giving it a go. I therefore took another of the Tramadol tablets prescribed by the doctor on Thursday.
I got off to sleep quite quickly then woke at about 2am I was still pain free, not just from my back but the stomach gurgling and gassing from previous nights was also absent.
We went out for lunch with my parents and I felt reasonably good. I managed a 3 course lunch although I did regret the pudding about twenty minutes later as my stomach started to ache. My back also started to ache. The backache and stomach pain continued for the next three hours so I popped a couple of paracetamol.
Wednesday 18 April.
Although I managed to sleep on and off, I woke frequently and have suffered again with my back. I did not take any Tramadol tonight, as I am not sure they are doing me much good and may be the reason I am feeling a little strange. I have just stuck to the paracetamol. Again I have had to sleep sitting up because of my back. I got up at 6am, as I couldn’t lie in bed anymore. Libby on the other hand had a good night’s sleep.
I had a call at 9:30am from the Rivers Hospital to arrange my blood transfusion. They want me to go in this morning for a blood match.
The nurse who took my blood struggled to get enough from my tired veins. Fortunately she only needed 8ml, as it might have been a problem. Not sure how it going to go tomorrow when they try and get to units in to me. Notwithstanding the problem I was probably only in the hospital fifteen minutes.
By the time Lesley got home at 3:30pm I had started to feel quite unwell, with both nausea and back pain, I am also feeling quite tired and lethargic and quite looking forward now to the haemoglobin boost tomorrow.
As I didn’t feel that great I decided to sit down in the lounge and watch a film. The nausea got worse until I realised that I was going to be sick. I made it to the toilet just in time and threw up several times. This is the second time I have vomited since my last chemotherapy session but the last time was on the day, which is now six days ago. I was warned that the chemo would build up in my body and that I might start suffering more as the sessions go on. I might have to re-think whether to continue once the current course is finished if it continues to get worse (I have another four treatments to go on the current course).
I felt a lot better once I had thrown up. I watched the rest of the film with Libby fast asleep on my lap. Not surprisingly I didn’t have much of an appetite at dinnertime but did manage a bit. I was in bed by 10am feeling quite tired. I read for a short time, then managed to sleep on and off until 3:30 when I woke with backache and didn’t feel I was going to get back to sleep so I sat up for a while on the internet.
Thursday 19 April
I got to the hospital at 8:45am for my blood transfusion and was shown to one of the bedrooms. One of the nurses took my blood pressure whilst another fitted a cannula. I warned her that my veins were proving difficult lately but she got it in first time with minimal fuss. Despite getting all this done fairly early it was nearly 10am before they came back and fitted up the first unit of blood. Procedure requires them to have two nurses match the patient with the blood batch number, which is I am sure the only reason I have not been offered to have the transfusion at home.
I couldn’t believe how frequently a nurse checked my blood pressure; it seemed like every 30 minutes. The blood dripped through the IV extremely slowly, particularly when compared to the flow rate of my chemotherapy drugs. The bag was quite small but didn’t seem to be going down at all. It took about two and a half hours to empty the first unit, then for some reason the nurse who added the second unit announced that she was going to set it for three hours.
Dr. Stoner popped in to see me for a while and we discussed my on going problems with digestion, acid reflux and nausea. He gave me some ideas to try but the message basically was that with the tumour, chemotherapy and other ancillary drugs on top of the operation I couldn’t ever expect to feel normal again. He didn’t seem to think that diet was going to help and apart from avoiding fizzy drinks he didn’t think cutting out anything else from my diet was going to make any difference to the acid reflux. His main advice on diet was to eat high calorie foods as I am not eating particularly well at the moment so basically his hobnob recommendation still stands. I have lost quite a bit of weight over the last few weeks (back down to nine and a half stone) so I may have to follow his advice.
My back started killing me for the last hour, I got out of my chair and lay on the bed but it didn’t make any difference. It was 3:30pm before I was finished and in the car back to my parents. I stayed with them for half an hour having a cup of tea with my back still hurting. I arrived home at 5pm the whole day taken up by the blood transfusion and not feeling any more energetic than when I had gone in.
I managed to get rid of the back pain in the evening but still felt tired and nauseous. I slept quite quickly but as normal woke up again before midnight and couldn’t get back to sleep. I ended up sitting up reading and doing things on my laptop until 3:30pm
Friday 20 April
I started feeling nauseous during the afternoon and back pain plagued me again. As it turned out I had the best night’s sleep I have had in weeks, pain free and with only two trips to the bathroom.
Saturday 21 April
I had quite a good day compared to some recently. I went to bed hoping for another good night, I should have known better. I suffered from backache and trapped wind for most of the night and got half as much sleep as the previous night
Sunday 22 April
By midday I was feeling extremely nauseous again and couldn’t manage much lunch. I am rapidly heading back to the stage where `I really don’t feel like any food and it is an effort to eat it. I start off reasonable well at Breakfast, struggle with Lunch and have areal problem with dinner. This is not good, as I have already lost about 7lbs in the last few weeks.
By late afternoon I was starting to feel really sick and then threw up at about 6pm. Whilst vomiting again relieved a lot of the discomfort it is getting quite worrying and I did still feel pretty ropey. I didn’t eat any dinner
I struggled to get to sleep feeling sick and with gas building up in my chest that would not shift. I went to the bathroom a few times and was eventually sick again which relieved the sickness, however by now my backache had got worse and I still couldn’t sleep.
Monday 23 April
My appetite wasn’t great but at least I felt like eating and managed a small cooked breakfast.
By lunch I was feeling quite nauseous again and unable to eat. Lesley had bought me some Complan and I drunk a mug of that. I tried to get some sleep in the afternoon but my back was hurting too much.
I went to sleep quickly when I went to bed in the evening but woke about forty minutes later with stomach and back pain. I had to have a couple of trips to the bathroom but still couldn’t get comfortable.
Tuesday 24 April
I had a complan drink and a little fruit for my breakfast, I couldn’t face anything else.
This continued and I was unable to face any food so skipped lunch, I dosed on and off for a while during the afternoon. I didn’t eat any dinner either, save for a complan drink.
I went t bed at 11pm. It was another night of horrendous backache either keeping me awake or waking me up when I did get to sleep. It was gone 3am before I got off to sleep for more than forty minutes at a time.
Wednesday 25 April
At 6am I was awake and in pain again. I took some painkillers and went downstairs to fill up my hot water bottle for my back. I went back to bed and managed to sleep until just before 9am when I was woken by a text message coming in from the HCH nurse who was coming to take my blood to say that she was running late due to heavy traffic.
The nausea wasn’t too bad this morning and I managed some breakfast. Two nurses arrived at 10am and again struggled to get enough blood for the samples (three attempts before success) we discussed my sickness, backache and stomach problems at length. On their advice I took one anti –nausea pill when they left.
My back was hurting again in the afternoon so I had a hot bath, which relieved it (for a while). By the evening I was feeling sick again and couldn’t eat dinner. I had another bad night’s sleep, this time it was my stomach playing me up and I needed several trips to the toilet throughout the night.
Thursday 26 April
Two nurses arrived from HCH to administer my chemotherapy treatment. One was Sue who had been yesterday to take my blood the other Jo. Sue has just come back from 20 years in Australia and is an experienced chemo nurse but has to learn the procedures followed over here by HCH so was shadowing Jo today.
The first vein Sue tried blew as soon as she got the needle in but the second was a success. They had brought with them a different anti-sickness drug for me to try in view of the nausea and sickness I have been suffering this week, they also discussed alternative options for pain relief for my back.
My back was quite bad throughout the chemo treatment and the nurses regularly heated up a wheat bag for me, which relieved the pain a bit. We were finished by about 4:30pm. I tried to eat something at dinnertime but couldn’t. By the time I went to bed my back pain had gone and my nausea had eased. I ended up having quite a good night’s sleep albeit siting up in bed rather than lying down.
Friday 27 April
I got up at 6:45am feeling quite good and managed to eat a bowl of cereal and half a banana for my breakfast. Although I felt quite good in the morning, I started to go down hill after lunch with nausea and backache which turned in to the worst back pain I have had so far. Nothing seemed to touch it. I managed to eat a bowl of porridge in the evening but continued to feel sick and suffer with my back. I was eventually sick about 9:30pm.
I didn’t get much sleep due to my backache and got up and watched a film during the middle of the night just to distract myself. What sleep I did get was all sitting upright.
Friday 27 April
Although I felt quite good in the morning, I started to go down hill after lunch with nausea and backache which turned in to the worst back pain I have had so far. Nothing seemed to touch it. I managed to eat a bowl of porridge in the evening but continued to feel sick and suffer with my back. I was eventually sick about 9:30pm.
I didn’t get much sleep due to my backache and got up and watched a film during the middle of the night just to distract myself. What sleep I did get was all sitting upright.
Saturday 28 April
Lesley phoned her sister Sarah in Australia this morning. Sarah has been a nurse all her life and she had a lengthy conversation with first Lesley and then me on pain and nausea medication, which I found quite useful. If only my doctor had been as helpful I might not be in the state I am in at the moment. She helped me understand which drugs do what and what sort of dosage I could take.
Trying to catch up with my lack of sleep, I dosed for a while in the lounge. I managed a small bowl of soup for lunch but couldn’t eat any thing else. I spent the afternoon with a hot water bottle strapped to my back and felt nauseous the whole time but have not had any further vomiting.
I had a bowl of porridge and some raisons for diner. I can’t remember the last time I ate a proper meal but at least I have had three small meals of some sort today. I need to get my appetite back quickly as my weight is rapidly going back down towards the nine stone mark.
I was told that the new anti-sickness drug I have been given (Cyclizine) could make me drowsy and I have certainly been very sleepy all day.
Although I still felt nauseous all evening, I did feel that I was getting on top of the back pain with a combination of painkillers and heat. I am pleased to say that I slept pretty well without any back pain. The only caveat is that every time I tried to lay down, I felt my back staring to hurt so again spent the night sleeping upright, fortunately I don’t seem to have much problem sleeping this way.
Sunday 29 April
I woke at 6:30 am feeling well rested and nausea free. I am hoping that I have got the medication balance right and I can keep on top of it. My next worry is the level of medication I am now on in particular the amount of painkillers I am taking.
Dr Bridgewater has agreed to see me at The Rivers Hospital on Monday evening for a further consultation, which I have gratefully accepted.
My appetite was up a bit this morning. I had a small bowl of porridge and some fruit. However I started to feel really sick by late morning and couldn’t eat anything for the rest of the day. This is very frustrating as I had felt quite good in the morning and thought that I might have got the balance right with the anti-sickness drugs. Ironically I started to feel sick just after taking the midday dose.
I continued to feel unwell all afternoon and evening although was not actually sick. Once again I have not consumed nearly enough food to sustain my weight let alone put some weight on. I also spent half of the afternoon dozing in the chair.
I tried to eat something before I went to bed as I felt a little hungry but didn’t manage more than a few mouthfuls of yoghurt; my back wasn’t feeling too bad so I was optimistic of some sleep. I had a pretty good night’s sleep with the back pain under control although it start nagging me every time I tried to lay down so it was another night of sleeping sitting upright. It felt worse at about 4am so I went downstairs for a top up for my hot water bottle.
Monday 30 April
As over the past few days I did have a bit of an appetite this morning and ate an egg on toast. My stomach started hurting soon after I had consumed it, but it was bowel pain rather than sickness.
I felt sick all afternoon and didn’t eat anything before going off to see Dr. Bridgewater at the Rivers Hospital. I felt like throwing up when I got there so went straight to the toilets but nothing happened.
When I went in to see Dr. Bridgewater I started feeling sick almost immediately and threw up whilst talking to him. He doesn’t think the sickness is a build up of the chemotherapy drugs, he believes it is a blockage in the small bowel caused by the cancer. He immediately arranged for me to have a CT scan tomorrow and will try and arrange for Dr Stoner to put a stent in later this week. He offered me the opportunity to be admitted to the hospital and go on a drip. I turned this down, as it is Lesley’s birthday tomorrow.
Tuesday 1 May (Lesley’s birthday)
I felt lousy whilst sitting in the CT scan waiting room drinking the foul liquid you have to drink for an hour and a half before the scan.
When I got home Lesley made me some soup and I then spent the afternoon dosing in a chair or watching TV.
I spent the evening watching TV without much interest in what I was watching. I was sick again at about 9pm even though I have had nothing all day except liquid.
Wednesday 2 May
I slept reasonably well but was up by 5:30am
I sent Dr Bridgewater an email to say that I felt that I needed to go in to hospital and get on a drip, as I am not keeping fluids down.
Everything is now an extreme effort, just getting out of the chair and walking up the stairs is exhausting.
I had a call from Charles Imber’s PA at about 1pm to say that she had been asked to book me in to the Princes Grace Hospital tonight and that Charles would be operating on me tomorrow. This was a bit of a shock as I was expecting to go in to the Rivers for a stent to be inserted by Dr Stoner. I wondered if there might be a mistake so said I would call her back. I got in contact with Dr. Bridgewater by email who responded that Dr. Stoner couldn’t carry out the procedure, as it had been decided that a surgical bypass was required rather than a stent. We quickly had to rethink our plans.
I got to the Princess Grace Hospital at 5:30pm. A nurse tried to put a cannula in my arm but couldn't find a suitable vein and the duty doctor had to do it. Charles Imber ( my surgeon) came in to see me. He explained that the scan had revealed a blockage in the duodenum, part of the upper bowel just above below the stomach. He will cut part of the bowel and reconnect it to the stomach providing a bypass to the blocked area. This will take place sometime tomorrow afternoon. I will be in hospital for about a week depending on how well my body copes with the by-pass.
There is a lot of fluid on my stomach and a drain is going to be put into my stomach through the nose later on this evening to drain it off. A nurse turned up shortly after to do this. She got me to lay on the bed and explained that the tube going down would feel a bid uncomfortable and it was important that when I felt the tube in my throat that I swallowed to help it go down.
The tube went into my right nostril and into my throat quite easily but although I tried desperately to swallow, I couldn’t help gagging and vomited continually covering myself and the bed with warm fluid. I don’t know why the nurse didn’t suggest that I got into a hospital gown first because now all of the clothes I have here are covered in vomit.
Even after the tube was in place I kept gagging with the unpleasant sensation of the tube in my throat. It took sometime to stop. It left me with a very sore throat. Once cleaned up with new bed sheets, I was connected up to a saline drip.
My nurse drew some more fluid of my stomach before I settled down for the night and also gave me some intravenous paracetamol and a heat pad for my back.
I slept until about 1pm and then was awake for about two hours; my saline was changed during this period and my stomach fluids drained again. I got back to sleep at about 3am and slept until 6am
Thursday 3 May
I had a visit from Dr. Bridgewater fairly early this morning. He explained to me that the CT scan had confirmed that there was a blockage in my Duodenum, which is just above the bowel at the bottom of the stomach. This is being caused by the primary tumour, which has now grown. This is quite disappointing, as the last scan at the end of February had shown that it had shrunk substantially. At sometime since then the cancer has obviously become resistant to the chemo drugs (which we knew it would at some point) He has told me that there is no point in continuing with the chemotherapy and that there are some alternative options that he will discuss with me once they have got my current problem sorted out.
He also told me that secondary cancer has spread to my spine, which is what is causing my back pain. He is going to recommend a course of radiation treatment for this.
I then had another visit from Charles Imber ), who went over the surgery with a bit more detail this time. He explained that the success of the operation was dependent upon there being enough bowel and stomach to play with. When I asked what would happen if there wasn’t he just said, “we are not left with many other options” I don’t quite know what that meant and decided I didn’t want to. He wasn’t sure what time the operation was likely to be saying that it depended on the anaesthetist. He got me to sign a consent form and then left
Not long after the anaesthetist arrived and asked me a lot of questions, a number of them were about the operation I was having. I couldn’t help thinking shouldn’t you know this, but I guess I have been shoe horned in to an already busy schedule. He didn’t think it likely that I would be going in to theatre before 4pm
It was 5pm before I went down in the end. By 7:30pm I was in the recovery room and ensconced in the High Dependency unit by 9pm. I was feeling fine, totally pain free thanks to an epidural.
Although I was comfortable and pain free I hardly slept all night as it was bright and noisy in the unit. I asked for some eye covers and earplugs but they didn’t have such things. I thought sleep was the best way to let the body heal but hear and I am sure in all other hospital they seem more intent on monitoring you.
Friday 4 May
By 6am I was being washed and my bed being changed which is a major operation with the amount of wires I am attached to.
Charles Imber came in to see me at 7:30pm. He told me that the operation had been successful. The next stage is for my body to learn to use the new route and that I had to take it very slowly in building up consumption. Fog today I was only allowed small sips of water. No more than 30mls be hour (which is only two table spoons full so I am not going to die of drowning)
I was also checked over by the Duty doctor for the unit shortly after. He told me that he would want me to stay on the unit for about 48 hours. I told him that I hadn’t had any sleep and didn’t really want to spend another night there.
He explained that they could keep the epidural going on the ward and that if I wanted to go back to the ward today I would have to be switched on to morphine that might not be quite as effective at killing pain. I told him I was prepared to take the chance. He therefore agreed to start reducing the epidural later in the day and switching me on to the morphine.
I managed to get off to sleep despite the hive of activity some time in the late morning only to be woken by a physiotherapist who was dead set on going through some checks and exercises. She then insisted that she wanted to get me out of bed and sitting in a chair for a while. There are very good reason for this bit I really just wanted some kip. She promised me that I only needed to sit up for 30 minutes so I did as I was told. Compared with the surgery last November, I didn’t have any trouble getting out of bed and standing and walking on my own. Presumably this is because the incision is so much smaller than last time.
I did nod off a couple of times in the chair but awoke again immediately. I asked my nurse if I could get back in to bed but he told me that I would have to wait until there were two nurses available to help me. The physio had of course long since buggered off. When I was still sitting in the chair an hour later I told my nurse that I was quite capable of getting back in to bed with only his help, to which thankfully he agreed.
It took him about 15 minutes to sort out all the wires for the machines that are monitoring me before we started moving me, which went fine of course.
They connected me up to a self-administering morphine machine (actually it is a synthetic morphine called ventalin or something like that) they then started reducing the epidural. This all went fine and I remained pain free until the epidural was completely removed. After that I did get a bit of pain from the wound area but nothing of any significance, just a bit like a stomach strain to be quite honest, I have had more pain after a gym session.
I was finally taken back to my room by 4:30pm. I have gone from having wires going everywhere monitoring everything from my heart to my eyelashes to having a nurse pop in every couple of hours and saying “how yer feeling” the answer to which is always “fine thank you”.
Saturday 5th May
I felt really drowsy at 6am, not so much sleepy but a bit drugged up. I have been taking my morphine substitute (Fentanyl, according to my sister-in-law in Australia who knows about these things) but not in any higher dose than I had previously so I assumed it must be down to the IV drugs I have been given.
It was 8am before I felt normal and got up. Charles Imber (surgeon) came in to see me during the morning. I told him I felt pretty good and relatively pain free. He told me that I needed to stay on water only all day but that I could now drink as much as I wanted.
I have felt better today than I have for weeks but of course anxious about what will happen when I start taking food.
I slept on and off until 3am when I woke with a bad backache. I used my fentanyl but it didn╒t really help. I eventually got off to sleep but then woke again at 5am with my back really hurting again.
Sunday 6th May
I woke at 5am and asked my nurse to get me a heat pack for my back that was giving me quite a lot of pain. It helped for a while and I got back to sleep for about 30 minutes. I got up at 6am when my back was hurting too much to stay in bed. I received some paracetamol in addition to my fentanyl.
Sitting up in my chair I suddenly noticed at about 7:30 am that my pyjama top was soaked. I lifted it up to find that the dressing over my scar was saturated and dripping blood, or at least I thought it was blood at first but it seemed a bit too pale in colour, perhaps it was a mix of blood and other bodily fluids, either way I guessed it wasn╒t good. I called the nurse who told me it was nothing to worry about and she changed the dressing. Half an hour later the same thing happened again.
When it happened for a third time within an hour the nurses added a lot more gauze to soak up the fluids but it was clear to me that they were just sticking a finger in the dike. They told me they had reported it to Charles Imber who would be in later. I now had most of my clothes saturated and had to revert to a hospital gown and pants that even Bridget Jones would draw the line at.
Charles Imber came in at about 11:30am. He told me that the cancer produces these fluids, which the body would normally be absorbing and excreting in the usual way but because it had found a way through the wound scar it could leak for a while. He told the nurses that just changing the dressing and stuffing full of gauze was no good as it would just be permanently damp. He put on a drain bag over the leaking area but was unable to get a decent seal, so although the bag helped they still had to put sandbags up around the edges. Consequently there have been several floods and changes of dressing and clothes all day. I am not sure what is going to happen over night.
Charles said that he was now happy for the stomach drain that was inserted down my nostril to be removed, as it obviously wasn╒t draining any fluid even when the nurses tried to draw fluid up. He also said that I could now start taking other fluids and soft foods in small doses. I asked for a cup of tea, which took about 30 minutes and three requests to turn up. Every time I have had a visitor I have ordered tea or coffee for them and it has turned up within a few minutes with a huge pile of biscuits, but some poor patient who hasn╒t had anything but water for five days is kept waiting and not a
When I had another leakage at 1:30pm and was left drenched and needing a new dressing for quite a while. It was eventually sorted out allowing me to have my lunch of a small bowl of vegetable consume, some stewed apples and a fruit yoghurt.
My drainage bag is filling up rapidly and I have now learned how to empty it myself so I don╒t have to wait for a nurse but there doesn╒t seem to be anything I can do to stop the fluids leaking out at some point.
I have been put back on oxygen this evening as the oxygen in my blood has dropped. My dressing was still leaking but we couldn╒t keep changing it so I slept with some absorbent pads around me. I woke at 2am with back pain and was given a heat pack, which helped a lot.
Monday 7th May
I had to get up at 5:45am as my back was aching again. My nurse changed my dressing, cleaned up around the scar area and then spend an age redressing the wound to try and seal it down. Once she had finished I went to the bathroom and the damn thing leaked everywhere again leaving us back at square one. The nurse was very patient and went through the whole process again.
I returned to bed once she had finished, as it seems less likely to leak there. Later in the morning my nurse came in to say that Mr Imber had been on the phone and that he was going to arrange for a drain to be put in later today by a radiographer.
My nurse took me off of the drip and fentanyl as the veins aren╒t holding up well and we have decided that I am now taking enough fluid orally and can also take my pain relief orally. A junior doctor came in to take my daily blood test and struggled to get any blood out. She spoke in permanent whispers and although she was English I had more trouble understanding her than all the other medical staff who have treated me whose first language is not English. A male nurse came to collect me for the drain insertion at 12:30pm
The radiologist carried out an ultrasound scan to locate where the fluid was, then gave me a local anaesthetic and inserted the drain. The whole thing only took 20 minutes and was relatively pain free, just the strange sensation of a wire being poked around inside and the feeling afterwards that there is an alien body inside your stomach. I am probably just imagining the later as it seems to pop up all over the place. The drain worked well and the bag was soon full.
I had lunch of soup and a bread roll when I got back to my room. The nurse then redressed my scar and cleaned me up again, hopefully for the last time for quite a while. I was feeling very sleepy so lay on the bed and went to sleep. When I woke I had a really sharp stabbing pain in my abdomen. I went back to sleep but the pain was still there when I woke a second time. I needed to go to the bathroom but when I tried to get up I found that I was in excruciating pain and only just managed to get myself up and in to the bathroom. Passing water relieved the pain very slightly. I reported the pain to my nurse who brought me some painkillers and told me that Charles Imber would be in shortly.
When Charles came in I told him that the pain wasn╒t that near the insertion area for the drain. Nevertheless he thought it could well be just a reaction to the disturbance caused in the stomach by the drain. He also felt it might be constipation and will prescribe some laxatives. He explained that the scar will not heal if it is permanently wet where the gauze is trying to stem the flow and it was therefore essential to put the drain in. I wasn╒t leaking anywhere now so I told him I was quite happy.
My dinner of soup rolls and fruit turned up at 6pm but I could only eat a few mouthfuls. I had a little walk down the corridor at 7pm. I wouldn╒t have been able to do that a couple of hours ago, but I couldn╒t go as far as I had two days after my operation and very slowly at that.
An air mattress turned up for me at 7:30pm. Because I have to sleep sitting up I am getting bedsores in places and this is supposed to help. I am only on oral painkillers now but have been given quite a few so hopefully the pain will stay away.
At 10pm I was given a mountain of tablets to take along with some medicine two of the drugs were for pain relief another two for my bowels and one for coughing apparently although I have not had any coughing problems. I then had a blood thinning injection in my stomach for good measure.
I am looking forward to having a night free from scar leakage as it has remained dry since the drain went in, but I am not changing out of the hospital gown until tomorrow just in case. The drain will have to stay in for a few days and I might even have to come home with it, but it╒s worth it.
Tuesday 8th May
I had a mixed night╒s sleep suffering from backache in the early hours and getting up at 5:30am. I felt quite uncomfortable in my stomach and couldn╒t get down more than a few mouthfuls of porridge for my breakfast.
I went back to bed at 8:30 suddenly feeling really drowsy and slept for a couple of hours. When I got up again I had a shower and started feeling a bit better. I managed to eat a bowel of soup and half a bread roll at midday. After lunch I felt extremely drowsy again and returned to bed where I slept on and off most of the afternoon.
I started getting severe pains in my abdomen at about 5pm which I put down to constipation, as I have not yet had a bowel movement. This went on for a couple of hours. Charles Imber came in and wrote me up a prescription for an annenima. However before it was administered things took their natural course giving me some relief for a while.
I went to bed a 10pm still feeling pretty tired. I slept reasonably well on and off until about 2am then woke with both back and stomach pain. I was given another painkiller that was supposed to be quite strong but it had no impact on the pain that was starting to become unbearable. Apart from occasional cat napping this went on for the rest of the night. I didn╒t know whether to lie down, sit up or walk around. Nothing I did made it any better.
1st June
Following Neil's last update he finally came out of hospital on Tuesday 15th May, although he had started to eat & drink OK unfortunately he was still in pain and struggling to control it with the drugs he had been prescribed. A Macmillan nurse appointed to us by the local Hospice came to see us on Wed 23rd May & together we came up with a plan to try & manage Neil's pain, basically to change one oral drug & write down absolutely everything he took with a view to increase his patch dosage (which was Neil's main pain relief) from 50mg to a much higher dose by the following Monday.
At this time Neil was finding it very difficult to eat & drink again & was increasingly being more sick, unfortunately Neil's drug regime never got sorted and on Saturday 26th May he was admitted to Springfield Hospital as he was very very unwell. I stayed with him throughout his time in Hospital & his Mum, Dad, all our children & his oldest friends visited him daily. Thankfully he was aware for enough time for us all to say the things we wanted. It was not plain sailing & unfortunately there was lots of pain but also a lot of love. We enjoyed being part of his care team in his final days & I think the experience will probably help us all.
He passed away peacefully in his sleep 4 am on the 31st May with Myself & Mum close at hand.
A great husband (God knows how he put up with me at times!) loving Father, Brother & Son. He will always be remembered and he will always be missed.
Lesley x
23rd July 2012
I had a letter from the Funeral Directors today confirming that donations of 395.00 were collected at the service and forwarded directly to marie Curie Cancer Care, thank you so much for your kind support.
Lesley x
Friday 27 April
Although I felt quite good in the morning, I started to go down hill after lunch with nausea and backache which turned in to the worst back pain I have had so far. Nothing seemed to touch it. I managed to eat a bowl of porridge in the evening but continued to feel sick and suffer with my back. I was eventually sick about 9:30pm.
I didn’t get much sleep due to my backache and got up and watched a film during the middle of the night just to distract myself. What sleep I did get was all sitting upright.
Saturday 28 April
Lesley phoned her sister Sarah in Australia this morning. Sarah has been a nurse all her life and she had a lengthy conversation with first Lesley and then me on pain and nausea medication, which I found quite useful. If only my doctor had been as helpful I might not be in the state I am in at the moment. She helped me understand which drugs do what and what sort of dosage I could take.
Trying to catch up with my lack of sleep, I dosed for a while in the lounge. I managed a small bowl of soup for lunch but couldn’t eat any thing else. I spent the afternoon with a hot water bottle strapped to my back and felt nauseous the whole time but have not had any further vomiting.
I had a bowl of porridge and some raisons for diner. I can’t remember the last time I ate a proper meal but at least I have had three small meals of some sort today. I need to get my appetite back quickly as my weight is rapidly going back down towards the nine stone mark.
I was told that the new anti-sickness drug I have been given (Cyclizine) could make me drowsy and I have certainly been very sleepy all day.
Although I still felt nauseous all evening, I did feel that I was getting on top of the back pain with a combination of painkillers and heat. I am pleased to say that I slept pretty well without any back pain. The only caveat is that every time I tried to lay down, I felt my back staring to hurt so again spent the night sleeping upright, fortunately I don’t seem to have much problem sleeping this way.
Sunday 29 April
I woke at 6:30 am feeling well rested and nausea free. I am hoping that I have got the medication balance right and I can keep on top of it. My next worry is the level of medication I am now on in particular the amount of painkillers I am taking.
Dr Bridgewater has agreed to see me at The Rivers Hospital on Monday evening for a further consultation, which I have gratefully accepted.
My appetite was up a bit this morning. I had a small bowl of porridge and some fruit. However I started to feel really sick by late morning and couldn’t eat anything for the rest of the day. This is very frustrating as I had felt quite good in the morning and thought that I might have got the balance right with the anti-sickness drugs. Ironically I started to feel sick just after taking the midday dose.
I continued to feel unwell all afternoon and evening although was not actually sick. Once again I have not consumed nearly enough food to sustain my weight let alone put some weight on. I also spent half of the afternoon dozing in the chair.
I tried to eat something before I went to bed as I felt a little hungry but didn’t manage more than a few mouthfuls of yoghurt; my back wasn’t feeling too bad so I was optimistic of some sleep. I had a pretty good night’s sleep with the back pain under control although it start nagging me every time I tried to lay down so it was another night of sleeping sitting upright. It felt worse at about 4am so I went downstairs for a top up for my hot water bottle.
Monday 30 April
As over the past few days I did have a bit of an appetite this morning and ate an egg on toast. My stomach started hurting soon after I had consumed it, but it was bowel pain rather than sickness.
I felt sick all afternoon and didn’t eat anything before going off to see Dr. Bridgewater at the Rivers Hospital. I felt like throwing up when I got there so went straight to the toilets but nothing happened.
When I went in to see Dr. Bridgewater I started feeling sick almost immediately and threw up whilst talking to him. He doesn’t think the sickness is a build up of the chemotherapy drugs, he believes it is a blockage in the small bowel caused by the cancer. He immediately arranged for me to have a CT scan tomorrow and will try and arrange for Dr Stoner to put a stent in later this week. He offered me the opportunity to be admitted to the hospital and go on a drip. I turned this down, as it is Lesley’s birthday tomorrow.
Tuesday 1 May (Lesley’s birthday)
I felt lousy whilst sitting in the CT scan waiting room drinking the foul liquid you have to drink for an hour and a half before the scan.
When I got home Lesley made me some soup and I then spent the afternoon dosing in a chair or watching TV.
I spent the evening watching TV without much interest in what I was watching. I was sick again at about 9pm even though I have had nothing all day except liquid.
Wednesday 2 May
I slept reasonably well but was up by 5:30am
I sent Dr Bridgewater an email to say that I felt that I needed to go in to hospital and get on a drip, as I am not keeping fluids down.
Everything is now an extreme effort, just getting out of the chair and walking up the stairs is exhausting.
I had a call from Charles Imber’s PA at about 1pm to say that she had been asked to book me in to the Princes Grace Hospital tonight and that Charles would be operating on me tomorrow. This was a bit of a shock as I was expecting to go in to the Rivers for a stent to be inserted by Dr Stoner. I wondered if there might be a mistake so said I would call her back. I got in contact with Dr. Bridgewater by email who responded that Dr. Stoner couldn’t carry out the procedure, as it had been decided that a surgical bypass was required rather than a stent. We quickly had to rethink our plans.
I got to the Princess Grace Hospital at 5:30pm. A nurse tried to put a cannula in my arm but couldn't find a suitable vein and the duty doctor had to do it. Charles Imber ( my surgeon) came in to see me. He explained that the scan had revealed a blockage in the duodenum, part of the upper bowel just above below the stomach. He will cut part of the bowel and reconnect it to the stomach providing a bypass to the blocked area. This will take place sometime tomorrow afternoon. I will be in hospital for about a week depending on how well my body copes with the by-pass.
There is a lot of fluid on my stomach and a drain is going to be put into my stomach through the nose later on this evening to drain it off. A nurse turned up shortly after to do this. She got me to lay on the bed and explained that the tube going down would feel a bid uncomfortable and it was important that when I felt the tube in my throat that I swallowed to help it go down.
The tube went into my right nostril and into my throat quite easily but although I tried desperately to swallow, I couldn’t help gagging and vomited continually covering myself and the bed with warm fluid. I don’t know why the nurse didn’t suggest that I got into a hospital gown first because now all of the clothes I have here are covered in vomit.
Even after the tube was in place I kept gagging with the unpleasant sensation of the tube in my throat. It took sometime to stop. It left me with a very sore throat. Once cleaned up with new bed sheets, I was connected up to a saline drip.
My nurse drew some more fluid of my stomach before I settled down for the night and also gave me some intravenous paracetamol and a heat pad for my back.
I slept until about 1pm and then was awake for about two hours; my saline was changed during this period and my stomach fluids drained again. I got back to sleep at about 3am and slept until 6am
Thursday 3 May
I had a visit from Dr. Bridgewater fairly early this morning. He explained to me that the CT scan had confirmed that there was a blockage in my Duodenum, which is just above the bowel at the bottom of the stomach. This is being caused by the primary tumour, which has now grown. This is quite disappointing, as the last scan at the end of February had shown that it had shrunk substantially. At sometime since then the cancer has obviously become resistant to the chemo drugs (which we knew it would at some point) He has told me that there is no point in continuing with the chemotherapy and that there are some alternative options that he will discuss with me once they have got my current problem sorted out.
He also told me that secondary cancer has spread to my spine, which is what is causing my back pain. He is going to recommend a course of radiation treatment for this.
I then had another visit from Charles Imber ), who went over the surgery with a bit more detail this time. He explained that the success of the operation was dependent upon there being enough bowel and stomach to play with. When I asked what would happen if there wasn’t he just said, “we are not left with many other options” I don’t quite know what that meant and decided I didn’t want to. He wasn’t sure what time the operation was likely to be saying that it depended on the anaesthetist. He got me to sign a consent form and then left
Not long after the anaesthetist arrived and asked me a lot of questions, a number of them were about the operation I was having. I couldn’t help thinking shouldn’t you know this, but I guess I have been shoe horned in to an already busy schedule. He didn’t think it likely that I would be going in to theatre before 4pm
It was 5pm before I went down in the end. By 7:30pm I was in the recovery room and ensconced in the High Dependency unit by 9pm. I was feeling fine, totally pain free thanks to an epidural.
Although I was comfortable and pain free I hardly slept all night as it was bright and noisy in the unit. I asked for some eye covers and earplugs but they didn’t have such things. I thought sleep was the best way to let the body heal but hear and I am sure in all other hospital they seem more intent on monitoring you.
Friday 4 May
By 6am I was being washed and my bed being changed which is a major operation with the amount of wires I am attached to.
Charles Imber came in to see me at 7:30pm. He told me that the operation had been successful. The next stage is for my body to learn to use the new route and that I had to take it very slowly in building up consumption. Fog today I was only allowed small sips of water. No more than 30mls be hour (which is only two table spoons full so I am not going to die of drowning)
I was also checked over by the Duty doctor for the unit shortly after. He told me that he would want me to stay on the unit for about 48 hours. I told him that I hadn’t had any sleep and didn’t really want to spend another night there.
He explained that they could keep the epidural going on the ward and that if I wanted to go back to the ward today I would have to be switched on to morphine that might not be quite as effective at killing pain. I told him I was prepared to take the chance. He therefore agreed to start reducing the epidural later in the day and switching me on to the morphine.
I managed to get off to sleep despite the hive of activity some time in the late morning only to be woken by a physiotherapist who was dead set on going through some checks and exercises. She then insisted that she wanted to get me out of bed and sitting in a chair for a while. There are very good reason for this bit I really just wanted some kip. She promised me that I only needed to sit up for 30 minutes so I did as I was told. Compared with the surgery last November, I didn’t have any trouble getting out of bed and standing and walking on my own. Presumably this is because the incision is so much smaller than last time.
I did nod off a couple of times in the chair but awoke again immediately. I asked my nurse if I could get back in to bed but he told me that I would have to wait until there were two nurses available to help me. The physio had of course long since buggered off. When I was still sitting in the chair an hour later I told my nurse that I was quite capable of getting back in to bed with only his help, to which thankfully he agreed.
It took him about 15 minutes to sort out all the wires for the machines that are monitoring me before we started moving me, which went fine of course.
They connected me up to a self-administering morphine machine (actually it is a synthetic morphine called ventalin or something like that) they then started reducing the epidural. This all went fine and I remained pain free until the epidural was completely removed. After that I did get a bit of pain from the wound area but nothing of any significance, just a bit like a stomach strain to be quite honest, I have had more pain after a gym session.
I was finally taken back to my room by 4:30pm. I have gone from having wires going everywhere monitoring everything from my heart to my eyelashes to having a nurse pop in every couple of hours and saying “how yer feeling” the answer to which is always “fine thank you”.
Saturday 5th May
I felt really drowsy at 6am, not so much sleepy but a bit drugged up. I have been taking my morphine substitute (Fentanyl, according to my sister-in-law in Australia who knows about these things) but not in any higher dose than I had previously so I assumed it must be down to the IV drugs I have been given.
It was 8am before I felt normal and got up. Charles Imber (surgeon) came in to see me during the morning. I told him I felt pretty good and relatively pain free. He told me that I needed to stay on water only all day but that I could now drink as much as I wanted.
I have felt better today than I have for weeks but of course anxious about what will happen when I start taking food.
I slept on and off until 3am when I woke with a bad backache. I used my fentanyl but it didn╒t really help. I eventually got off to sleep but then woke again at 5am with my back really hurting again.
Sunday 6th May
I woke at 5am and asked my nurse to get me a heat pack for my back that was giving me quite a lot of pain. It helped for a while and I got back to sleep for about 30 minutes. I got up at 6am when my back was hurting too much to stay in bed. I received some paracetamol in addition to my fentanyl.
Sitting up in my chair I suddenly noticed at about 7:30 am that my pyjama top was soaked. I lifted it up to find that the dressing over my scar was saturated and dripping blood, or at least I thought it was blood at first but it seemed a bit too pale in colour, perhaps it was a mix of blood and other bodily fluids, either way I guessed it wasn╒t good. I called the nurse who told me it was nothing to worry about and she changed the dressing. Half an hour later the same thing happened again.
When it happened for a third time within an hour the nurses added a lot more gauze to soak up the fluids but it was clear to me that they were just sticking a finger in the dike. They told me they had reported it to Charles Imber who would be in later. I now had most of my clothes saturated and had to revert to a hospital gown and pants that even Bridget Jones would draw the line at.
Charles Imber came in at about 11:30am. He told me that the cancer produces these fluids, which the body would normally be absorbing and excreting in the usual way but because it had found a way through the wound scar it could leak for a while. He told the nurses that just changing the dressing and stuffing full of gauze was no good as it would just be permanently damp. He put on a drain bag over the leaking area but was unable to get a decent seal, so although the bag helped they still had to put sandbags up around the edges. Consequently there have been several floods and changes of dressing and clothes all day. I am not sure what is going to happen over night.
Charles said that he was now happy for the stomach drain that was inserted down my nostril to be removed, as it obviously wasn╒t draining any fluid even when the nurses tried to draw fluid up. He also said that I could now start taking other fluids and soft foods in small doses. I asked for a cup of tea, which took about 30 minutes and three requests to turn up. Every time I have had a visitor I have ordered tea or coffee for them and it has turned up within a few minutes with a huge pile of biscuits, but some poor patient who hasn╒t had anything but water for five days is kept waiting and not a
When I had another leakage at 1:30pm and was left drenched and needing a new dressing for quite a while. It was eventually sorted out allowing me to have my lunch of a small bowl of vegetable consume, some stewed apples and a fruit yoghurt.
My drainage bag is filling up rapidly and I have now learned how to empty it myself so I don╒t have to wait for a nurse but there doesn╒t seem to be anything I can do to stop the fluids leaking out at some point.
I have been put back on oxygen this evening as the oxygen in my blood has dropped. My dressing was still leaking but we couldn╒t keep changing it so I slept with some absorbent pads around me. I woke at 2am with back pain and was given a heat pack, which helped a lot.
Monday 7th May
I had to get up at 5:45am as my back was aching again. My nurse changed my dressing, cleaned up around the scar area and then spend an age redressing the wound to try and seal it down. Once she had finished I went to the bathroom and the damn thing leaked everywhere again leaving us back at square one. The nurse was very patient and went through the whole process again.
I returned to bed once she had finished, as it seems less likely to leak there. Later in the morning my nurse came in to say that Mr Imber had been on the phone and that he was going to arrange for a drain to be put in later today by a radiographer.
My nurse took me off of the drip and fentanyl as the veins aren╒t holding up well and we have decided that I am now taking enough fluid orally and can also take my pain relief orally. A junior doctor came in to take my daily blood test and struggled to get any blood out. She spoke in permanent whispers and although she was English I had more trouble understanding her than all the other medical staff who have treated me whose first language is not English. A male nurse came to collect me for the drain insertion at 12:30pm
The radiologist carried out an ultrasound scan to locate where the fluid was, then gave me a local anaesthetic and inserted the drain. The whole thing only took 20 minutes and was relatively pain free, just the strange sensation of a wire being poked around inside and the feeling afterwards that there is an alien body inside your stomach. I am probably just imagining the later as it seems to pop up all over the place. The drain worked well and the bag was soon full.
I had lunch of soup and a bread roll when I got back to my room. The nurse then redressed my scar and cleaned me up again, hopefully for the last time for quite a while. I was feeling very sleepy so lay on the bed and went to sleep. When I woke I had a really sharp stabbing pain in my abdomen. I went back to sleep but the pain was still there when I woke a second time. I needed to go to the bathroom but when I tried to get up I found that I was in excruciating pain and only just managed to get myself up and in to the bathroom. Passing water relieved the pain very slightly. I reported the pain to my nurse who brought me some painkillers and told me that Charles Imber would be in shortly.
When Charles came in I told him that the pain wasn╒t that near the insertion area for the drain. Nevertheless he thought it could well be just a reaction to the disturbance caused in the stomach by the drain. He also felt it might be constipation and will prescribe some laxatives. He explained that the scar will not heal if it is permanently wet where the gauze is trying to stem the flow and it was therefore essential to put the drain in. I wasn╒t leaking anywhere now so I told him I was quite happy.
My dinner of soup rolls and fruit turned up at 6pm but I could only eat a few mouthfuls. I had a little walk down the corridor at 7pm. I wouldn╒t have been able to do that a couple of hours ago, but I couldn╒t go as far as I had two days after my operation and very slowly at that.
An air mattress turned up for me at 7:30pm. Because I have to sleep sitting up I am getting bedsores in places and this is supposed to help. I am only on oral painkillers now but have been given quite a few so hopefully the pain will stay away.
At 10pm I was given a mountain of tablets to take along with some medicine two of the drugs were for pain relief another two for my bowels and one for coughing apparently although I have not had any coughing problems. I then had a blood thinning injection in my stomach for good measure.
I am looking forward to having a night free from scar leakage as it has remained dry since the drain went in, but I am not changing out of the hospital gown until tomorrow just in case. The drain will have to stay in for a few days and I might even have to come home with it, but it╒s worth it.
Tuesday 8th May
I had a mixed night╒s sleep suffering from backache in the early hours and getting up at 5:30am. I felt quite uncomfortable in my stomach and couldn╒t get down more than a few mouthfuls of porridge for my breakfast.
I went back to bed at 8:30 suddenly feeling really drowsy and slept for a couple of hours. When I got up again I had a shower and started feeling a bit better. I managed to eat a bowel of soup and half a bread roll at midday. After lunch I felt extremely drowsy again and returned to bed where I slept on and off most of the afternoon.
I started getting severe pains in my abdomen at about 5pm which I put down to constipation, as I have not yet had a bowel movement. This went on for a couple of hours. Charles Imber came in and wrote me up a prescription for an annenima. However before it was administered things took their natural course giving me some relief for a while.
I went to bed a 10pm still feeling pretty tired. I slept reasonably well on and off until about 2am then woke with both back and stomach pain. I was given another painkiller that was supposed to be quite strong but it had no impact on the pain that was starting to become unbearable. Apart from occasional cat napping this went on for the rest of the night. I didn╒t know whether to lie down, sit up or walk around. Nothing I did made it any better.
1st June
Following Neil's last update he finally came out of hospital on Tuesday 15th May, although he had started to eat & drink OK unfortunately he was still in pain and struggling to control it with the drugs he had been prescribed. A Macmillan nurse appointed to us by the local Hospice came to see us on Wed 23rd May & together we came up with a plan to try & manage Neil's pain, basically to change one oral drug & write down absolutely everything he took with a view to increase his patch dosage (which was Neil's main pain relief) from 50mg to a much higher dose by the following Monday.
At this time Neil was finding it very difficult to eat & drink again & was increasingly being more sick, unfortunately Neil's drug regime never got sorted and on Saturday 26th May he was admitted to Springfield Hospital as he was very very unwell. I stayed with him throughout his time in Hospital & his Mum, Dad, all our children & his oldest friends visited him daily. Thankfully he was aware for enough time for us all to say the things we wanted. It was not plain sailing & unfortunately there was lots of pain but also a lot of love. We enjoyed being part of his care team in his final days & I think the experience will probably help us all.
He passed away peacefully in his sleep 4 am on the 31st May with Myself & Mum close at hand.
A great husband (God knows how he put up with me at times!) loving Father, Brother & Son. He will always be remembered and he will always be missed.
Lesley x
23rd July 2012
I had a letter from the Funeral Directors today confirming that donations of 395.00 were collected at the service and forwarded directly to marie Curie Cancer Care, thank you so much for your kind support.
Lesley x