Tuesday, 25 September 2012

MOAS II-Tuesday 22nd August to date......

In the days that followed I continued to make great progress. Day by day, small step by small I gradually made improvements. Firstly I started on a light diet; jelly and ice cream for starters and then things like omelettes. Initially the central line was kept in as my potassium was low and this was supplemented through my TPN. But as my food intake improved so the TPN was stopped and the central line removed. Interestingly I found out that the central line is not now changed routinely each week as per my first operation. It seems that the thoughts around this are that the ordeal of going to surgery for this to be done under local aesthetic and the risks involved are outweighed by the fact that problems with leaving the line in are few and far between. That said I’m sure there are times and situations when a change is deemed necessary. My central line was finally removed on Wednesday 23rd August after a day or so of eating food without problem and an improvement in my potassium levels.

 As my various drains, tubes and attachments were gradually removed then it allowed me to become more mobile. Regular walks were taken throughout the day initially around the ward and then further afield. Robin would often join Tracey and I and we strolled and chatted together.

 Another difference that I noted this time around was again regarding the physiotherapy side of my recovery. Having Jade around as the dedicated C2 physio had already shown some improvement as she had put together an exercise plan using resistance bands. This allows the patient (when they are able) to do light exercises either sat down or stood up using the bands. The team are also in the process of fitting out a small gym on the ward and have a flight of three steps with hand rails, a sitting exercise bike as well as other equipment for patients to use as part of their recovery.

 I also had a heart ultrasound scan. The technician doing the scan arrived on the ward with a mobile ultrasound machine. The scan was done in my room on my bed and took a while as various measurements were taken. It was all pretty interesting to watch but the all important results were not given to us then as they had to be seen by the doctor. I was a little worried about this as on my last operation as the scan had showed fluid around the heart.

My oxygen levels still proved to be a bit of a pain and took a while to sort themselves out. Gradually I was weaned off; initially the supplementary oxygen was turned down to 30%. Regularly I had spells without the oxygen to see how my system coped but in the early days this would drop away to 92%. 95% to 96% was the target level unsupported. I just needed to be patient.

  Again, as per the last operation I was also given an ultrasound scan on my legs to check for deep vein thrombosis. This took around about an hour to do both legs and was done in the x-ray department in newly equipped suits. Thankfully these came back clear.

 Gradually my medication was reduced; the drips, drains, central line and PCA were removed until I had no more attachments. I was able to shower daily (with help from Tracey) and started to feel human again.  Ward life was becoming easier and Robin and I spent quite a few hours together talking and generally keeping the nurses on their toes with our banter. At the same time we also spent some time on a few occasions having some deep and meaningful conversations about our predicament. On more than one occasion both of us were in tears. I think that some of this was down to the drugs coming out of our system, the relief that we had come through such a big operation and a general outpouring of emotions. I think this is healthy and part of the recovery process be it with a new found friend, family or loved one. To bottle up such emotions is not good and it’s important that you and your supporting team can let off steam once and a while.

 I found the nights on the ward quite difficult, even as I improved and was able to move around the bed more freely due to less attachments. The daily routine often started at six am with the night staff doing the rounds taking observations and then giving out medication before handing over to the day team and the arrival of breakfast. Then the doctor’s rounds often started at 8am. Throughout the day there were then various visits from the nurses taking observations, removing drains, changing dressings etc. The doctors again came around about 4pm and dinner was served around 6pm.  The evening was then quite a drawn out affair particularly for someone like me who is generally fairly early to bed. Often medication was being handed out at 10pm and observations then done by around 11pm. As you would expect it’s never truly dark on the ward and the green glow of the nightlight illuminates the room. I was lucky that I had my own room so that I was able to shut the door to cut down the background noise and reduce the light coming into the room. All this coupled with day time naps meant that my sleep pattern was completely messed up and most nights I slept for a couple of hours before waking again in the early hours and sitting up in bed wide awake for a period of time before trying to get back off to sleep. I began to dread the nights as they seemed to go on forever.

 Finally on Saturday 26th August I was able to come home. I was definitely stronger this time around than last and the journey home was much easier than last time around. I clutched the pillow covering my tummy for protection all the way home. It was great to finally be home and to see the girls again. It was an emotional reunion.
 In the following days Tracey and I went for daily walks. Initially to the end of the close, then laps around the close and then this progressed to short walks around the block and then I finally managed a 25 minute walk onto the local common. This was soon cut short however. The Pneumonia returned. Tracey called the doctor and the on call doctor visited and examined me and promptly advised me to go to Frenchay hospital. This was at 4:30pm and I was advised to get there as soon as possible and check into the Acute Admissions Assessment ward as I would need scans and X-rays before the scanner closed. We ended up staying on the ward until around 10:30pm. The doctors there did blood tests and examined me and finally confirmed that the Pneumonia was back. Intravenous antibiotics were administered there and then. There was some initial “umming and ahhing” about whether or not I should stay on the ward overnight as they were concerned that I may have a blood clot. In the end they decided to give me a heperine injection and agreed to let me go home as I felt I could rest better at home than on the ward but only on the proviso that I come back in the morning for more tests and an X-ray. I spent the night in a lot of pain and ended up sleeping on the sofa. We returned the following morning and after more tests and the X-ray they finally confirmed that I did not have any blood clots. A course of high dose oral antibiotics were given to me to take for the next ten days or so. I spent the next few nights in quite a bit of pain and slept on the sofa for the next three to four days. One night I slept sat bolt upright supported by pillows as if sat on the sofa as it was the only comfortable position. Gradually as the antibiotics got to work the pain eased and I felt better. However it had knocked back my exercise regime by at least a week and I had to start my walking around the close all over again.
 Luckily I’m now well on the way to recovery. I’m feeling really good now if still tender around the area of my scar. I am feeling stronger with each day and plan some longer walks in the coming days......

Friday, 21 September 2012

Monday 20th August- MOAS II +6 Days

 After a couple of days of good rest and a quiet room I felt much better. My mind was clearing and for the first time I felt lucid. I think it was a combination of the quality rest but also the effects of the drugs from the operation wearing off. The flashing lights and psychedelic hallucinations that I had been experiencing had stopped and I now felt I was getting back to normal. I was also using the PCA less and less and therefore not getting so much morphine into my system which I’m sure also helped.
 One of the things that I found that really helped me was playing music via the speaker on my phone or laptop. It helped me focus on something tangible and kept me in the real world. With nothing to occupy myself I found that the mind would wander and any effects from the drugs would manifest themselves as the mind was otherwise unoccupied.

On the morning rounds the doctor had said that I could have my stomach drains removed. True to form the nurse arrived shortly after to remove them, all six of them. Often these are removed in two goes on two consecutive days but not today! With a couple of presses on the PCA to help each drain was removed on the third deep breath. Whilst not particularly painful it certainly made my toes twitch a bit and I was glad when it was all done. A couple of the drains continued to leak a bit and rather than a dressing a stoma bag was placed over the wound to catch anything that came out until the wound closed over.

Tracey arrived shortly after and then Jade the physio arrived to take me on a short walk around the ward. She switched my oxygen from a mask to a small tube that fits into the nostrils. She also showed Tracey how to switch the oxygen over from the main feed on the wall above my bed to a portable bottle held on the ward so that we could go for walks when we wanted.

The previous day I had also been allowed to start on some clear soup and jelly and continued with this managing to drink tea and water and to eat clear soup, jelly and ice cream throughout the day with no adverse affects. The portions were small but I still could not finish a portion of any of them. A product of not eating anything for so long I guess and the stomach shrinking.

Later that day my epidural was also removed. The area where it was inserted was red and a little fluid had formed so swabs were taken just to be safe. As the epidural wore off and sensation returned the discomfort levels rose slightly for a short while and I used my PCA a little more.

 The doctors came around on their afternoon rounds and remarked on how well I was doing now. They also advised that my catheter could be removed. This was to be done at midnight! Midnight! Apparently there was a reason for this. The theory is that once the catheter is removed the patient can then go off to sleep and the bladder fills during the night and the patient wakes the following morning and empties the bladder starting a “normal routine”. It didn’t work for me and within an hour of having the catheter removed I was needing a pee. This continued throughout the night and I kept the nurses busy collecting the “live” pee bottles as they still needed to measure output and test my urine.

 The doctor had also said that I now needed to get moving around as much as possible. This in turn would help bring my oxygen levels back to normal and get my bowels working again. Once these two things happen then we could think about going home......

Thursday, 13 September 2012

Saturday 18th August MOAS II + 4 Days

 I awoke the next morning feeling much better. I had a reasonable night’s sleep and awoken a few times. Each time I did I did my breathing exercises. After we had been told that I had Pneumonia the day before I was a bit shocked. I remember lying in bed in a quiet moment afterwards thinking to myself “Pneumonia, this could be very serious if it goes the wrong way” and vowing to do everything I could to stop it getting worse.
 Tracey arrived just as I was being whisked off for another chest X-ray. My blood oxygen levels were at 95-96 but this was being supplemented by and oxygen mask that I had to wear 24 hours a day and was currently running at 60% support.

 The girls were also due to come up and visit Tracey along with Joyce and my brother and sister in law. Tracey left me to it for a while whilst she spent some well needed time with the girls and the family. I chose not to see them at this point as I still had quite a number of pipes and tubes and various bits of support and did not want to scare them.

Mr Moran came to visit me and advised that there was no change in my X-ray and that it showed some fluid at the bottom of the left lung. He also advised that my NG tube could be removed. “Great” I thought a forward step. The NG tube can be quite annoying and I was glad to get it out.

Tracey arrived back at 15:30hrs and had a great time seeing the girls. Jess had cooked one of her Victoria sandwich cakes and Chloe had made biscuits. Both were a hit with Robin’s wife; Karen who shared the flat with Tracey. I was again sat in the chair and doing my breathing exercises. Sally, the nurse who was looking after me (and was excellent as were all the staff) told us that my O2 blood levels were still OK at 96%. After yet more breathing exercises (we vowed to do them every hour on the hour and consisted of 10 x deep breathing, 10 x Huffs- like breathing on glass to clean it, 5 x Deep breaths, hold for three seconds and then sniff in a bit more air and hold it for a further three seconds and then finally a few goes on the Spirometer) Tracey decided that she would leave me for the night and let me get some rest as I was again pretty worn out.  

Monday, 10 September 2012

Friday 17th August MOAS II + 3 days- Pneumonia!

It had been another difficult night’s sleep but when Tracey came to see me in the morning I was looking a bit more alert and chatty. The initial x-ray was clear and I was now due for an ultrasound on my heart to check for fluid. Throughout the day I moved from being sat in the bed to the chair at the side of the bed. I always tried to push myself to get out of bed as it did me good and helps keep the chest clear. It’s also easy to get stuck in the rut of staying in the bed all day rather than trying to get out and up and around. I believe in trying to have a routine of getting out of bed and sitting in the chair throughout the day and then back into bed only at bed time or if a nap is required. It puts a bit of structure to the day.

After some time in the chair I was starting to get tired again and after the bed was changed I jumped back into bed for some well earned rest.  I was drifting in and out of sleep as the broken night’s sleep that I was getting started to catch up with me again. I remember saying to mum and Tracey “ I hope you don’t mind but I’m going to keep my eyes closed whilst we talk”. I was so tired it was getting really hard work and not doing me any good at all. The girls left me to try and get some sleep, on the way out they bumped into Tom Cecil who reassured them that I was doing fine but was pretty groggy.

 When Tracey came back later in the day again there was a hive of activity around my bed. The doctors were there doing more blood tests as my oxygen levels had fallen again. The test involves getting a sample of tissue from a needle in the wrist and is fairly uncomfortable. It took three attempts throughout the afternoon and evening for the correct sample to be taken and by this time I was exhausted and pretty fed up with the whole thing. It was at this point that we were told that I had pneumonia. It was a bit of a shock as up to this point we thought all was going well but it did explain the chest pain that I was experiencing.
Tracey was pretty upset by this and we had a long chat initially with one of the doctors who explained that I had pneumonia in the left lung and that this is what was causing me the pain. They had put me onto Tazacin (an intravenous antibiotic) for five days and the physiotherapy team had been booked for the weekend to come and work with me to try and clear the lungs of the fluid. They had also reserved a bed for me back on the high dependency ward should I deteriorate over the weekend in any way. A nurse from the high dependency ward came to visit me and familiarise herself with my situation just in case they decided to move me. We also had a long chat with Vicki the specialist nurse who put our minds at rest a bit as by this time Tracey was pretty upset. She also told us that they were going to move me to one of the single side rooms as I was pretty exhausted due to lack of sleep and needed rest.

Later that evening I was moved to the single room where I initially slept for three hours solid. I then spent the evening with Tracey and Mum before crashing out for the night. It was the best night’s sleep I’d had in a long time!

Monday, 3 September 2012

Thursday 16th August- C2 ward MOAS II +2 days.

Now settled into the twin High Dependency room in C2 ward Tracey came to visit me first thing in the morning. I said that I felt well but was very tired as I had not slept well. I was also coughing up mucus which is quite normal after the operation and you are encouraged to do so as part of the physiotherapy programme in order to help clear the chest. This can be uncomfortable and you are encouraged to hug a pillow in order to support your abdomen. As I was so tired Tracey only stayed for a short while and then left me to sleep.

She returned at 13:00hrs. There was a bit more activity around me and the doctors had advised that they were unhappy with the left side of my chest as my breath sounds were quieter. My blood oxygen levels were also low so they decided to put me on oxygen to supplement my blood levels. The decision had also been made to stop my post operation chemotherapy treatment. Apparently my liver function was being affected by the chemo and it was best to stop it. Was this worrying? Not sure really. The benefits of post op chemotherapy are not really known. Interestingly talking to a Christies patient they were not offered post operative chemo at all. I had also been booked in for a chest X-ray for later that day.

 All of this was stressing Tracey out a bit and we had a long and very helpful conversation with Vicky the specialist nurse that we both appreciated very much.
 At 18:30hrs I went down for my X-ray.

Tracey arrived again to visit at 19:30hrs. I was back from X-ray and feeling hot, it was one of the hottest days of the summer with temperatures reaching the late 20’s Celsius. Luckily there was a Dyson bladeless fan next to my bed which we turned on ( and actually stayed on 24hrs a day for the next week or so).
Tracey asked Sarah the nurse who was looking after me if the X-ray results were back? She told us that they were but the doctors had all left for the day. My blood oxygen levels had returned to normal with the oxygen mask that I was now wearing helping me along. I was also due to start on the Heperine again at 22:00hrs. I was not really using the PCA to administer any Morphine as I was not in any pain.

 It had been a busy and noisy day. Again I had struggled to sleep and was now very tired. Whilst I was not suffering with any hallucinations I was suffering the effects of all the drugs that I was on. When I closed my eyes even to blink I saw bright psychedelic colours flashing before me, images of faces and animals, vivid dreams and the mind seemed to be racing at one hundred miles per hour which made it difficult to drop off to sleep. Tracey left me at 21:30hrs to try and get some rest.   

Saturday, 1 September 2012

Wednesday 15th August- MOAS II +1day High Dependency Ward

I was moved to the High Dependency Ward (C1) at 4am on Wednesday morning. It’s a brand new ward and has only been open a matter of a couple of months. This phase of my recovery I have no memory of whatsoever other than odd snippets usually prompted by Tracey telling me about them.

 I also started on the first of the post operation Chemotherapy treatments where the abdominal cavity is filled with the solution for 23hrs and in the last hour the solution drained and then replaced.

Tracey and Mum came to visit me apparently I was still very sleepy but said I could remember conversations from the day before in ICU. I had a visit from Sue Alves (specialist nurse) and Tom Cecil (consultant) who said that I was doing very well and that they planned to move me back to C2 later that day. My bowel was already showing signs of recovery with bowel sounds clearly audible! This was a good sign and Sue advised that they would also start me on the intravenous food TPN.

 I later fell asleep again and after a while awoke with some pain in my left lung. Whilst I was asleep obviously I was not using the morphine pump (PCA). This is a manually operated pump that when pressed delivers a dose of morphine to help pain relief. There is a timer built into the pump to control how much morphine is administered and stops overdoses!

Tracey returned around 13:30hrs and shortly after Sue returned to tell us how the operation had gone. She advised that the entire macroscopic (visible) tumour had been removed. They had found two area’s of PMP two on the duodenum and pylorus and a nodule on the stomach. HIPEC had then been administered and the whole area washed with the heated chemotherapy bath.
 The official line is that " We opened the abdomen through a long midline incision and had to spend several hours untangling dense small bowel adhesions. We eventually mobilised the bowel completely including the stomach, duodenum, the small bowel and the colon. There were two area's of tumour recurance,one just below the pylorus and the second one just below the third part of the duodenum. We removed these two areas. There were a few serosal tears.
 Having completed the macroscopic tumour removal we perfused the abdomen with Mytomycin C heated to 42 degrees for one hour"

The physiotherapy team had also started on me early and had got me out of bed and into the chair. This was quite a job as there were a number of pipes tubes, drips and drains that had to be untangled just to get me into the chair. I spent an hour sat out of bed in all. I was also given a bed bath and cleaned my teeth.
I also started using the spirometer to try and exercise my lungs. When I tried it the day before the operation I again maxed it out at 4000ml. This time however I could only manage 1500ml but it was a start.

My progress at this point was still considered to be good and I was moved to C2 ward. I ended up in the same twin room that I was in last time around but in the bed opposite. In the other bed was an elderly man who had been involved in a car accident and had been hit on the head and was somewhat confused. Apparently I was still very sleepy and was repeating conversations quite a bit. Tracey and mum left me to sleep.....