Friday, 14 December 2012
It’s been four months to the day since my second MOAS and an update on progress is well overdue.
It’s clear that the recovery this time around has been quicker than the first operation. The operation was a lot shorter with nothing actually being removed this time around; the disease that was found was simply removed from the surface of the effected organs and followed up with HIPEC (Heated Intra Peritoneal Chemotherapy). That said it was still pretty invasive and still six hours long! The recovery was hampered slightly by a bout of Pneumonia but otherwise has been pretty quick. I returned to work three weeks earlier than expected and things have gone well. I have also started running again which was much earlier than expected. I remember talking to Jade the Physiotherapist on C2 ward whilst I was in hospital and suggesting that I wouldn't even consider running until the New Year! I’m only running 5-6km twice a week at the moment but it’s a good start and far better than I imagined. I do get some aches and pains the day after but that’s to be expected. The strange thing is that the area that seems most affected is the area where the Stoma used to be and not the new scar line. I fully expect that as my core recovers these aches and pains will subside. I am more than confident that my speedy recovery both times has largely been down to my positive approach and fitness levels.
I have also found that my eating regime has returned to normal and food is not an issue. I don’t seem to have any restrictions other than volume.
All in all things have gone very well indeed.
2012 has been another challenging year for us all. A second cancer diagnosis and a second MOAS. But I must be very thankful that the team at Basingstoke Hospital have again been able to work their magic and I have again come out the other side relatively unscathed. The family appear to have dealt with it very well also. I guess we are becoming old hands at it now. That in itself is worrying though. I don’t want the girls to get a false idea that because we have done this twice and been lucky enough to get a good results both times around that cancer can always be beaten and that if we are faced with it again that the same results are guaranteed. We must maintain a balanced viewpoint at all times.
I know that talking to Tracey recently she told me that she expected the stay at Basingstoke the second time around to be easier as she knew what to expect but it wasn't Although she knew the place well and the surroundings were familiar the whole ordeal was equally traumatic. The day of the second operation was just as hard as the first time around.
However some good has come out of a bad situation once again. We have made some great new friends throughout the year through contacts made due to PMP. We have stayed in contact with Robin and Karen who we shared our stay with at Basingstoke and I'm pleased to say that Robins recovery has also gone well.
The inclusion of my story in the Cancer Survivors Club book by Chris Geiger has also been a great experience where we have managed to meet with other survivors and also help raise awareness of Pseudomyxoma Peritonei. The book is proving to be a great success and very popular and more importantly raising money for cancer charities.
I have also manager to raise around £200 pounds through the sale of bird and bat boxes and will be sending the cheque to Basingstoke hospital in the next week or so. A big thanks to all who have supported us with this by purchasing a bird or bat box.
So with Christmas looming ever closer we are going to be celebrating as a family and giving thanks that we are all sat around the table together and in good health. We will look forward to 2013 and make sure that we make every day count.
I'm sure that any fellow bowel cancer sufferer will recognise the fact that wherever we go we always have to keep an eye as to what facilities are available should we get caught short. I have a great mental list of where all the better public toilets are in most of the shopping centres locally should I feel the need! However I found myself in a less than desirable establishment recently but something caught my eye that really made me chuckle. Whilst sat reading the usual scribblings on the walls suggesting who I might like to telephone for sexual gratification or declaring certain peoples sexual orientation I spotted a little ditty underneath a rather well drawn charicature of the great bard himself that went something like this...
Whoever it is that writes on these walls,
Must have their brains between their balls,
As even Shakespeare with all his wit,
Wouldn’t write where people s#!t.
It made me laugh! So I’ll leave you all with that thought and wish you a very Merry Christmas and a happy, healthy New Year!
Monday, 26 November 2012
From time to time I like to invite fellow PMP sufferers or people touched by this disease to write a guest post for me. Nancy is a regular follower of my blog and we keep in regular contact.Nancy was diagnosed with PMP at around the same time as myself and we have shared the journey.Nancy lives in Maine in the USA with her family and shares her thoughts at Thanksgiving in the post below.......
November 22, 2012: American Thanksgiving Day
Most days, I do not consider myself a cancer survivor -- a teacher, mother, wife, grammy, daughter, all-around crazily busy person -- but not a survivor. Most of the time, I do not even think of those months when cancer hovered like an ever-present ripple in my consciousness. I don’t run, walk, or canvas for cancer. I don’t “raise awareness.” I have not joined any of those social cancer support groups (virtual or otherwise); I seem loth to enter my name as an official “survivor.” Do I consider it a jinx, perhaps? Am I like an alcoholic, unable to bring herself to say, “Hello. My name is Nancy. I survived cancer”? I don’t know.
Perhaps my reticence is because I have stumbled upon so many “survivor” blogs that have ended abruptly. They all begin so similarly: the explanation that the blog has been created to keep family and friends informed; a recitation of the botched and/or elusive misdiagnoses; a tone of innocent, fearful optimism when the disease is finally named; the stark reality of the MOAS, with talk of NG tubes and various and sundry complications; and, finally, the staggering steps to recovery. At first, the blog posts are frequent, and then, as health and strength return, they morph into normal chatter of trips and children. The topic of cancer returns only every six months, a pesky fly that buzzes just out of hearing until the notice of the requisite CT scan arrives, only to be batted away when the doctor announces the “all clear.” However, some blogs do not follow this trajectory. Sometimes a blog drifts off with no resolution. On others, posts return, chronicling a suspicious scan, repeat operations, increased pain meds and more desperate measures, often ending with a short death announcement written by a family member. I personally call them ghost blogs, and they haunt me. Still, every day, rather religiously, I click on a few internet links, just to make sure that those particular blog writers are still amongst the living. For those few minutes, I remember.
I did not research my cancer until after the surgery, after enough days had passed to convince me that life would return to some semblance of normal. The fact that my doctors did not mention the word cancer to me during the months of fumbling about for a diagnosis helped my ignorance, and then, when the magic disease was finally named, its ridiculous spelling kept my googling at bay. When I eventually stumbled upon the Wikipedia entry, I read only enough to get thoroughly chilled and then shut off the computer. Much later, when I gained the confidence to surf for answers, I became voracious, lurking on sites but never announcing myself. I invisibly followed the final months of several “survivors.” I almost, but not quite, joined the various PMP support forums. I only “outed” myself on a few blogs -- a fellow teacher, a fellow Mainer, and this one -- whose writer had surgery just about the same time as I.
Thursday, 15 November 2012
It was an early start for me as I had been asked by Chris Geiger (author of the Cancer Survivors Club) to join him for a radio interview on BBC Radio Bristol’s morning show with Steve Le Fevre.
I met Chris as agreed at the studio on Whiteladies road and Chris who knew the site well led the way. As a regular listener to the show whilst commuting to and from work it was interesting to see how it was all done. We waited outside the main studio in a large office filled with banks of computers used by the reporting staff. Directly outside the studio sat Jemma Cooper who presents the weather updates on both the radio and local BBC news so we passed the time of day with her. Chris and Jemma knew each other and they talked about the various things they had going on.
We were soon ushered into the studio. There was a main room with a large desk in the middle I guess where the producing staff sat and immediately to the left was a sound proofed room from which the show was being broadcast. We were briefed by the producer as to what would happen and that we needed to enter and leave the room as quietly as possible. Very quickly we were ushered in and waited quietly whilst the guest in front of us did the “Thought for the Day” slot.
Then it was our turn. Steve sat at a large table with loads of radio equipment on and a microphone on an arm in the middle. We sat on the end of the table on two office chairs with desk mounted microphones. The interview was fairly brief but I believe we got our point across well discussing both my story with Psuedomyxoma and also the Cancer Survivors book.
You can hear the clip by clicking the link below and forwarding the slide bar to the 2hrs 20min position.
It was soon all over and job done. I briefly chatted with Chris and Jemma again before saying goodbye and agreeing to see each other later that night for the book launch at Foyles book shop.
The rest of the day was busy as we did the usual running around. I collected the girls from school and they quickly got changed before we all jumped into the car and headed into Bristol. The plan was to get the girls a dress each ready for the upcoming Christmas parties and then get some dinner before heading to the book launch.
We met mum and Dad quite by chance on our way to the bookshop and were joined by a close family friend Kevin. We headed upstairs and at the rear of the room was an area lined with seats and already quite busy. I said hello to both Chris and Catherine who were greeting people on their way in and introduced them to the family. Catherine remarked that it was great to finally meet them as she had read so much about them!
Everyone was soon seated and Chris took to the stage to talk about the book. In total there were nine of the twenty three people featured in the book at the launch as they all lived in the Bristol area. It was clear from Chris’s speech that he was very passionate about the book and his cause; trying to help people and give them hope by gathering and producing the inspirational stories inside. His speech was touching, reducing some listeners to tears, inspirational and funny and he really got his message across well. Its Chris’s dream that he can help others by sharing inspirational stories and that this is just the start of something bigger and that the “ambassadors” featured in the book as he calls us can help him create a butterfly effect that start as a small beating of our wings to create a big positive effect elsewhere in the world.
The Cancer Survivors Club Book.
Chris Geiger and nine of the Cancer Survivors Club Ambassadors.
Chris presenting me with my copy of The Cancer Survivors Club book.
He presented each of the nine ambassadors with a signed copy of the book marked with an inscription and numbered with our membership number to the Cancer Survivors Club. I’m number 17, hopefully many more will join us in the years that follow.
The proceeds from the book are donated to cancer charities across the country to help them help people like me. The book is truly inspirational with amazing stories which are sometimes sad but also with their comedy moments and is a great read. They would make the perfect Christmas gift for someone, so go on, buy one, be inspired and help raise funds for cancer charities.
Friday, 26 October 2012
I thought it may be of interest to summarise the differences that I observed between having the first MOAS in Feb 2010 to the second MOAS in August 2012.
Obviously there were some fundamental differences between the two operations that mean that you can’t really directly compare them. For example there was far more done in the first operation in terms of the number of procedures that took place within the operation itself with a greater number of organs being removed and a total of twelve hours in surgery. The second operation was far shorter; only six hours with no organs being removed and PMP being removed from the Pylorus and Duodenum. However the second operation still required a laperotomy (incision down the front of the tummy) and followed the line of the original scar. There was a large amount of time spent unpicking scar tissue from the first operation to mobilise up the bowl in order to gain access to the affected areas. Finally toward the end of both procedures HIPEC (Heated Intraperitoneal Chemotherapy) was applied where Mytomycin C heated to 42 degrees was poured into the abdominal cavity and the whole area washed with the treatment. So the second operation was still pretty invasive!
From the start though I did observe changes in the procedures on C2 ward from the first time around. The first day was pretty similar in that it’s about getting settled in and is fairly relaxed. Day two is a bit more full on with visits from the medical team and the Picolax starting to take effect. The discussion with the specialist nurses regarding the drugs used for pain relief was invaluable. As you will be aware if you have read all of my story I suffered badly with hallucinations the first time around and this was largely down to the drugs used and how they affected me personally. The fact that I suffered so badly allowed for the drugs to be changed slightly which definitely helped me the second time around. I suffered only with minor effects. There also seemed a more pro active approach toward the whole area of the hallucinations and its effects on the mind from the team this time around. We talked about what could be done to focus the mind on the here and now rather than letting it wander where hallucinations seem to then be able to creep in. The use of a black spot drawn on the back of the hand allows the patient something to focus their attention on if they think they may be experiencing a hallucination. Similarly, objects in the room can be focussed upon. I personally found music played quietly through the speaker of my phone or laptop again focussed the brain on the real world.
On the day of the operation things were different too. Rather than the pre op that I had first time around where I was already rather sleepy by the time the theatre staff came to take me down for surgery this time around there was no pre op. I was fully awake and walked down to theatre with the theatre staff. I’m not sure if this is the usual procedure nowadays or just because I am a seasoned patient. Personally it didn’t bother me as I knew exactly what to expect and it was one less drug being added to my system. However I can see that perhaps some more nervous patients may prefer to be under the effects of a sedative when faced with such a large surgery ahead of them.
After the operation there were some changes here too. I seemed to be moved through the intensive care unit far more quickly and into the new high dependency ward. Throughout the couple of days that I was in ITU and HDU I was very out of it and only remember small amounts. My first real memories post op really start from the point that I was moved onto C2.
From this point onwards I noticed fairly quickly that I felt stronger the second time around. Granted the operation was only half the time of the first and far less was done but I still came out with the same attachments minus the stoma. I think the fact that I knew what to expect and also what was expected of me made a big difference. I felt more confident.
One of the things that I didn’t really appreciate was that although I was very pleased not to have a temporary stoma this actually presented its own challenges to a bed bound patient attached to several machines and pipes once the bowel began to work again! I’ll leave the rest to your imagination!
The final change that I noticed was a dedicated physio on the ward. Jade, had put together a number of leaflets that could be used to help the patient. Initially this was a list of breathing exercises, this proved very helpful to me especially having picked up pneumonia. We followed this programme religiously on the hour every waking hour for a number of days and these made a huge difference to me. I often had to push myself to do them but the effort was worth it. The second set of exercises I was given came with a resistance band and could be done in the chair or on the bed. The other change was that a physiotherapy room/gym was available for use. This is in the process of being developed fully but already has a number of machines that can be used by patients to help with their recovery.
I found that second time around my stay on the ward was easier. I believe this to be down to a number of factors; the changes listed above, the fact that second time around I was in familiar surroundings and knew what to expect and obviously the fact that it was a slightly smaller procedure. The fact that having done this once before I knew I could do it again and was more confident. I also struck up a great relationship with a fellow patient-Robin and we spent much time talking and comparing progress which undoubtedly helped us both along. We bounced off each other and made light of situations wherever possible, keeping the nurses on their toes and generally created havoc; laughter is a great healer. Luckily Tracey also hit it off very well with Robin’s wife Karen who also stayed on site and I know this helped her too.
This week saw my return to work. Initially just half days and then gradually increasing it until I'm back to full time. It's just like I have never been away!
Tuesday, 9 October 2012
So it’s now 8 weeks to the day since my second MOAS (Mother of all Surgeries) and a great deal has happened on the last few weeks.
My recovery from the operation continues to go very well and I feel pretty good! My strength and stamina is returning and I find myself being able to do more and more. Every week that passes you seem to notice an improvement or that an ache or pain that you had is no longer there anymore. The area that seems to be taking the longest to heal (not surprisingly) is along the line of the scar. The abdominal muscles below soon start to complain if I overdo things and are a reminder that it’s only been eight weeks since my surgery.
I am doing well with my eating and the volume I can eat is returning to pre MOAS II levels. That’s to say that I can eat a main meal but starters and dessert are out of the question. In total I lost about a stone in weight after the operation and I’m sure it won’t take me long to put it back on again, especially as physical exercise is still a bit difficult and will be for some time.
With my recovery going so well, we decided last weekend to take a trip to Clevedon for a family day out. The girls took their roller blades and skated along the sea front for a while and then we made the most of the late September sunshine and sat outside a small cafe and ate lunch. With full bellies I persuaded the family it was time to walk it off so we headed along the cliff path towards Sand bay. We walked for around an hour and a half and took in the views of the Severn estuary, both Severn bridge crossings and the hills of Wales in the distance. We laughed and joked as we walked and I took the opportunity to take some photos with the new camera and hone my photographic skills! Once back in Clevedon we found a quiet spot and ate ice cream!
With things going so well I have recently met with my employer and decided that I’ll return to work on the 22nd October. I’ll do a phased return over a two week period to make sure that I’m fit and able to cope with a busy days work. Luckily I have a desk based job and will be sat down all day but it is very busy and can be very tiring mentally!
Before my return to work I have a final X-ray booked for next Wednesday to check that my Pneumonia has gone. Previous X-rays clearly showed the fluid on the lung but I’m hopeful that this has now gone as I feel much better and can once again max out the Spirometer.
I am also pleased to say that the official launch of The Cancer Survivors Club book by Chris Geiger has been announced in Bristol as the 14th November. The Launch will be held at 18:30 at Foyles in Cabot Circus. As you are probably aware My Story features as one of twenty four inspirational stories from cancer survivors of various types. Tickets are still available but there is limited space so if you’d like to come then please book a ticket at-
Finally I have some sad news. I recently found out that unfortunately Dr. John Sime or “Biocat” as most people knew him lost his battle with Pseudomyxoma Peritonei on 14th July. John or Biocat was a valued member of the Christie’s Pseudomyxoma forum. John died at home with his wife Julia. John and Julia supported me during our Snowdon Horseshoe fundraiser with a donation for which we are very grateful. Our condolences go out to Julia and the family and we will all miss John’s input on the forum.
Monday, 1 October 2012
I’m very pleased to announce that “My Story” has been included as one of twenty three inspirational survivor stories in a book that has just been released by Chris Geiger; The Cancer Survivors Club. The book includes stories from sufferers of many different types of cancer and will help raise awareness of the rare cancer that I suffer with –Pseudomyxoma Peritonei. I am very pleased that it has been included within the book as often the rare cancers just don’t make it into publications.
The book aims to provide both cancer sufferers and their carer’s with hope from the inspirational stories of survival against the odds.
Official Press Release
Book Launch - The Cancer Survivors Club – By Chris Geiger
The Cancer Survivors Club written by Chris Geiger has been released and is available now for distribution on all major online and independent bookstores. The Cancer Survivors Club will leave everyone touched by cancer beaming with a renewed determination to survive.
Bristol, UK, November, 2012 ---- Cancer survivor Chris Geiger announces the release of The Cancer Survivors Club; a collection of truly inspirational, uplifting and assuring survival stories. These stories were submitted from readers of his regular newspaper columns and in response to the worldwide publication of his ‘Guinness World Record’ newspaper article; together with his radio tour.
When first diagnosed with cancer, Chris spent hours scouring bookshops, desperately hunting for books written by people who had fought and survived cancer. “Most of the books I found had been ghost written for film stars. The majority dedicated considerable time to mentioning their celebrity friends or the location of their next film, yet spent little or no time describing their treatment and more importantly how they survived” Chris Geiger said.
Bel Mooney the Daily Mail Columnist said “I have no doubt this book will be very useful indeed. When a diagnosis is made many people are afflicted by fear and negativity - which is why stories that give hope are helpful to patient and family alike. Chris Geiger will prove an inspiration.”
The main focus of The Cancer Survivors Club is to help, encourage and inspire people touched by cancer. In addition it provides current sufferers with a distraction from the worries of daily treatment, by encouraging them think about life once they’ve become a survivor and kicked the disease. One of the ways is for patients to start writing their story while still receiving treatment, detailing their experiences. Ultimately Chris Geiger wants patients to make it their goal to become a member of The Cancer Survivors Club and have their story published.
Bob Champion MBE the Grand National Winner & Cancer Survivor said “I feel this is a very inspirational book to read and shows that with courage, determination and a positive attitude cancer can be beaten.”
Unfortunately cancer affects everyone; worldwide there are around 12.7 million new cases diagnosed each year. Every two minutes someone in the UK is diagnosed with cancer.
Chris Geiger had to endure two years of cancer treatment, which included a number of operations, radiotherapy, chemotherapy and a bone marrow transplant before he was finally in remission.
The Cancer Survivors Club is an invaluable read for cancer sufferers, their families and friends. These poignant personal accounts from normal people, demonstrate an extraordinary determination to survive against the odds. It proves with survival rates doubling, anything is possible.
Chris Geiger wants to encourage cancer survivors to become ambassadors, by using their experience to support and inspire other people who are currently receiving treatment; until they too become survivors.
The Cancer Survivors Club has an excellent mix of stories, from the most common cancer, to the rarest. Some of the cancer types mentioned are; Brain, Bowel, Breast, Pancreatic, Testicular, Leukaemia, Nasal, and Non-Hodgkin’s Lymphoma. Also included in the book are a number of Chris Geiger’s cheerful columns, which include a humorous account of a prostate examination and the dangers of getting sunburnt on a crowded beach.
“Anyone reading this book can’t fail to gain strength and encouragement from the stories within this book.” Chris said. Also included in the book is his Guinness World Record feature.
During the increasing years Chris Geiger has been in remission, he has met and spoken with many newly diagnosed cancer sufferers. “I soon discovered how invigorated and inspired patients became by simply talking with a cancer survivor who understands first-hand how they are feeling.” Chris said.
“I’m hoping ‘The Cancer Survivors Club’ will leave everyone touched by cancer beaming with a renewed determination to survive. “Sadly I didn’t have room for all my newspaper columns, perhaps that’s another book or two someday” Chris said.
About The Author:
Chris Geiger splits his time between Bristol in the UK and Boca Raton, USA. In 2011, he won the ‘Columnist of the Year’ award, sponsored by EDF Energy, for the numerous light-hearted newspaper columns, publicising the disease and cancer charities. Other projects to raise awareness include writing a newspaper feature on World Cancer Day, in which he received a Guinness World Record for ‘Most Published Newspaper Article’. He also writes regular columns, voluntarily for both local and national newspapers.
Also available in Tesco's,Waterstones & WHSmith (UK)
Amazon and Barnes & Noble (USA)
Tuesday, 25 September 2012
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
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
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
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
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
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 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.....
Thursday, 30 August 2012
I have been calling the operation the MOAS II but it’s probably not quite true technically speaking. Whilst just as invasive and with fundamentally the same proceedure’s (Midline laparotomy to redo complete cytoreduction for Pseudomyxoma) obviously there are certain elements of the operation that were done first time around that can’t be re-done the second time around such as the spleenectomy, removal of the gall bladder and so on. The notes call this operation a de-bulking procedure.
The day started early for me. I was awoken just before 06:00hrs to get ready for the op. I was handed a gown and went into the bathroom for a quick cool shower (not too hot or this can cause problems with bleeding during the op). I freshened myself up and then sat patiently in my room awaiting the staff. Tracey and Mum arrived to see me off. We sat quietly and chatted. I also donned the flight socks that I had been given to help stop deep vein thrombosis (DVT). I passed my jewellery over to Tracey; taking off the wedding ring is always a difficult moment. We tidied my stuff away and packed my case ready to go into secure storage until I needed it.
At around 07:30 the medical staff arrived in their scrubs ready to take me down the theatre. Another change this time around is that there was no pre-med and that I was to walk down to theatre. As I left my room I waved a goodbye to Robin. I had met him on the ward, he was scheduled to have the full MOAS at the same time as I was having my operation and he too was all prepped ready to go. We wished each other luck and bid our farewells. Tracey and Mum joined me so far but Tracey had already decided that she didn’t want to see me go off to sleep as it was just too hard for her. So we had agreed that we would say our goodbye’s part way down to theatre. She and mum put on a brave face as we all hugged and kissed and said goodbye. It was really hard, I struggled to hold back the tears and Tracey was upset. We didn’t hang it out and soon parted company. I walked the final short walk to the theatre with the nurse. We turned into the pre op rooms and once through the door I was in familiar surroundings again. A smallish room with wall cabinets on either side, works tops below with cupboards underneath and double doors at the end leading directly into the theatre. These doors were open again initially but were soon closed as my gaze fixed on goings on in that room. There were three or four staff in the room and a gurney in the middle. It was quite narrow and was high off the ground. On top was an inflatable cover. I was told to remove my gown and to hop on the gurney the inflatable cover was placed over me and I found that this was full of warm air and I would not get cold. I led down and handed the staff my glasses. As before they worked very quickly and all seemed to be scurrying around and busying themselves. The anaesthetist talked to me throughout and then finally announced that an injection was coming that would send me off to sleep. I had no cannula in so he tapped my left wrist and found a vein then came the “sharp scratch” announcement and that was the last that I can remember.....
Tracey and mum headed back to the flat and composed themselves and began the long waiting game. They received a call at around 13:00hrs to say that the operation had gone well and that they had removed two tumours and an area from my stomach. They were at this point about to give me the HIPEC (Heated Intra Peritoneal Chemotherapy) bath. This is where the abdominal cavity is soaked and washed in a chemotherapy solution. Area’s that were affected by the PMP were given a particular scrubbing and extra attention. Mum and Tracey were told that they could come and see me at 17:00hrs in ICU once I was settled.
Tracey and Mum arrived in ICU at 17:00hrs on the dot! On the way in the bumped into Vasili the male nurse who had looked after me so well last time around. He greeted them and let them in. I had managed to come through the operation and did not have any chest drains in or a ileostomy (stoma). I was however intubated (breathing tube) and had a centralline just below the collar bone used for feeding and administering drugs, five stomach drains in the left hand side of my stomach and a drain on my right side for administering the post op Chemo (I think!). I was also catheterized and had a nasal gastric tube in. I was still fast asleep at this point but Mum and Tracey were told if they came back at 18:30hrs then they would start to wake me up.
Tracey was given a chair and sat down beside me for a while. Suddenly the head end of the bed started to raise with me on it fast asleep. The nurse came running over “what’s happening?” she said as the bed continued to rise with me now sat almost upright! Tracey thought the nurse had been doing it when in fact her knee was pressing on the button!
Tracey and Mum returned again at 18:30. Apparently the nurse was having trouble waking me up. Whatever they tried I just didn’t seem to respond, even Vasili had tried.
“I’ll wake him up” Tracey proclaimed, plonked herself next to me and squawked “Dave” quite loudly. That did the trick! Apparently my eyes opened wide immediately at the sound of her voice and I was awake. Tracey then spoke to me reassuring me that all had gone well, all the cancer had been removed and that I had not got a stoma. I responded with hand gestures such as thumbs up and the OK sign used by divers as I was unable to speak because of the breathing tube.
The only memory that I have of ICU is one where I made the nurse who was looking after me laugh. I was aware that she was close by me and said something about head and shoulders.....so yours truly started miming the actions to the head, shoulders, knee’s and toe’s children’s song! The nurse picked up on this and was laughing at me! I then drifted back off into my chemically induced sleep.....
Monday, 27 August 2012
It was a fitful night’s sleep last night. I watched a DVD and wrote up my blog entry, showered and got ready for bed. I finally turned out the light and was just dosing off when in came a male nurse with my first Heparin jab, stabbed me in the leg and bid me good night! So fully awake again I then turned back over and tried to doze off.
The second half of the night was better and I slept more. It was an early start though. I awoke just before 7am and shortly after the nurse arrived to do my observations. Not long after the anaesthetist arrived and ran through a list of questions. The doctors and consultants then seemed to be inspired by the recent London Olympic relay teams and just as one left the other seemed to arrive, sometimes in pairs, sometimes on their own.
Then came a trip down to the X-ray department for a chest X-ray. I wandered down with the chap from the room next door-Rob who is having his first MOAS at the same time that my operation is being done. This is quite often the practice at Basingstoke to have two being done at the same time in adjacent theatres. I guess it allows the easy transfer of skills with such a large team.
We returned back to our rooms to be given our second dose of Picolax. This didn’t take long to work and within twenty minutes had the desired effect. I haven’t now eaten any solid food since Sunday lunchtime. Meals have consisted of clear soup and jelly. I think the consistency of the jelly fools the body into thinking that you have had food as I haven’t felt particularly hungry, that said its now 21:45 and I wouldn’t say no to a large Big Mac meal!
Next came the second Heparin jab, shortly followed by an ECG. The fact that I had shaved my upper body really helped as the sticky pads stuck well and it didn’t hurt too much when they were peeled off. The steady stream of visitors was frequent along with the trips to the toilet. Bloods were taken, my chest listened to on three occasions and my abdomen examined (which prompted another dash to the toilet!). I also met Pat the stoma nurse again. Whilst it’s less likely that I’ll have a stoma this time around I’m still marked up for one just in case. Pat examined me and chose the best spot for the stoma and marked me on both sides of my tummy just in case.
I also met the Pseudo physiotherapist; Jade. She is a new addition to the C2 team as at my last stay whilst there were physio’s they were not dedicated to the Pseudo ward. In addition a dedicated physio room/gym has been created on the ward and is in the process of being equipped. There are stairs to climb, weighted balls, resistance bands and an exercise bike plus various other bits of equipment. They also plan to make use of a Nintendo Wii and X-box at some time in the near future. All of which will help patients with their recovery and give them some ideas as to what they can do when they get home.
This afternoon I managed to escape the ward for a while and went down to the flat where mum and Tracey are staying. We spent an hour or so there, the change of scenery was good and we took the opportunity to call the girls. It was great to hear their voices and to talk to them. What I would give for a hug right now....
I returned to yet another cup of Picolax waiting for me and the promise of another mad dash to the toilet. I think that maybe I should try out for the men’s relay team for the next Olympics with how quickly I’m having to move!
A final visit from yet another doctor and I was all done. I spent the evening with Tracey and Mum and we sat and chatted. All of us were tired and we face a big, long and stressful day tomorrow. It’s going to be far worse for them than it is for me. I’ll be out of it whilst they wait for the phone to ring with an update as to how things are progressing. So we agreed to bid each other good night at around 8pm. I wanted to shower and shave before bed and they needed to relax as best they could.
It will be an early start in the morning. I’ll be awoken at six am and will have a shower and get changed into my hospital gown. I’ll also have to wear flight socks to help prevent blood clots forming in the legs. Pre op medication is now not administered. Last time I did have this and was pretty sleepy when the porters came to collect me and wheel me down to theatre. This time I can walk down. Tracey has opted to say our goodbye’s at my room rather than accompany me down to theatre. I think that she would just find this too hard and it would upset her too much. I’m more than happy with this; I can say our goodbyes and then focus on the job in hand. This will be the last time I will see Tracey and Mum until Wednesday morning. Obviously throughout the operation on Tuesday I will be asleep and whilst I may return to ICU mid afternoon they will continue to keep me sedated until Wednesday morning. When I first come around I will be intubated however if my last op was anything to go by this is fairly quickly removed.
At the moment I still feel pretty good, as relaxed as you could expect and not too anxious. I just need to get the next day out of the way and wake up in ICU with my family around me. And I need to hear the words that the surgical team have managed to get all of the PMP out of me once again.......
It’s now 22:30hrs. I’ve just been stabbed in the leg again! I have also requested some chemical help for sleep tonight to make sure that I get a good night in. I won’t now be able to write up this next section of the blog until I am well enough. Tracey will write a diary from here on in and I’ll type it up at a later stage.
Good night, see you on the dark side of the moon!
Saturday, 25 August 2012
So I guess the first thing is to say is that I have had the op and that I arrived home today safe and sound. So over the next week or so I will gradually translate the diary that we have written whilst in hospital at Basingstoke and North Hampshire hospital into blog posts and bring you all up to date. So plenty of posts coming your way!
So take a step back a couple of weeks to admission day.......
Sunday, August 12th
Admission to Basingstoke MOAS II -2 Days...
After a poor night’s sleep we awoke to the sound of thunder rumbling away in the distance. The storm crept slowly closer on a slow summer breeze the air was thick and clammy. We all gradually emerged from our beds and made our way to the kitchen for breakfast or to the bathroom to freshen up. Suddenly there was a blinding flash of lightning and almost immediately an explosion of thunder so close that you could almost feel the sonic blast of the air particles being super heated to thousands of degrees in a fraction of a second. The girls and Joyce all squealed in fright. That was as close as they get without getting struck. Car and house alarms wailed. The gods were angry today!
After a short burst of torrential rain the storm eased it way past, thunder rolling around the skies in the distance slowly growing quieter as it crept away. And then if by magic the clouds parted and we were again bathed in warm morning summer sunshine. It was as if Mother Nature was showing us that after every big scary storm the sun does eventually shine again....
We packed our final belongings and before we knew it Mum and Dad were here ready to take us to Basingstoke. Now for the bit I hated the most; saying goodbye to the girls. Today they seemed to be dealing with things well and I think the tears we had at bedtime the night before helped to get things off our chests and to make us all that little bit stronger. The girls were great; we all held each other tight in a family hug for a while and said our goodbyes. Tracey and I fought back the tears. We then said goodbye to Joyce before heading out to the car. We pulled away and waved; both Tracey and I crumbled at this point and cried quietly in the back of the car.
The journey to Basingstoke (now a well trodden path) was uneventful and even the weather behaved itself reasonably well. We arrived at the Hospital and went first to the reception desk to pick up the keys to both Tracey and Mum’s room. We took in their bags and got them settled before heading up to C2 ward to check in.
I was shown to my room for the next day or so prior to the op; room 5 a large airy room with a shared bathroom. I dropped off my bags and as with my last stay was advised that they didn’t need to see me until after two and that I was free to have a wander. Great, an opportunity to head to the canteen and get some lunch. We had roast pork, the last meal of the condemned man! And a top tip for anyone else staying at the hospital. Put the key to your flat on the tray in the canteen and they’ll charge you staff rates and not the full whack.
We headed back to the ward as agreed and soon met up with Brendan Moran who arrived to get the consent forms filled in. We talked about the operation and contrary to my understanding he advised that there were actually two small areas of PMP found on the CT scan. I asked if he felt that this was a reoccurrence or areas that were missed first time around. He felt that they were a reoccurrence. He also explained that they were in quite a tricky area to get to and that the op was not an easy one. They have to unpick the adhesions and scar tissue from the last operation. He suggested that I may get away without having to have a stoma this time around and that chest drains were also unlikely. He also added that I would probably only be given the HIPEC during the surgery and that this would not be repeated in the days following the op.
So I signed to consent forms. I have little option do I?
He bid us farewell and left us in the room. My mood had changed and Tracey picked up on this. I guess reality had hit home. Despite the MOAS the first time around and the HIPEC given in the four days after the op the PMP had returned. Will this happen again after this op? Also there were two areas of reoccurrence and not one. That was a bit of a shock. Plus it was in a difficult area to access. It appears that this operation may not be as straight forward as I first hoped. I now worry about what the future might hold. There are only so many times you can repeat these operations before you run out of bits of anatomy that can be removed.
Deep breath, raise the head and stick out the chest. I have to crack on, I have little option do I?
We again went wandering this afternoon with the promise to be back on the ward at six and not to eat anything. Kerry, the nurse looking after me met us back at the room and we went through various forms, attached my i.d. wristband and gave me my first cup of Picolax (the drink used to help clear out the bowel)
“Oooh my favourite” I joked. It tasted of pure lemon juice.
My first set of observations were taken and a water sample.
Tracey and Mum were tired so we agreed that they return to their rooms to get settled and ready for bed. I showered and then sat typing up this first blog entry at Basingstoke. I’m trying to hunt down a WIFI connection so I can post it prior to the op. If not then I guess you’ll have to catch up when I get home!
It’s now 9pm and I’m done. Until tomorrow my friends, it promises to be a busy day......