Tuesday, 24 November 2009

The Waiting Game....

So that was that, we now had to wait until October for the next CT and blood tests to put a marker in the sand and see how things were progressing....

The meeting had been far more up-beat and encouraging than anything we had done before. We had been given a leaflet by Sue that detailed what would happen with the operation from the point of admission right up until the point of discharge. This was very informative and allowed us to mentally prepare for what was to come and internalise things.
From the leaflet and the discussions at our meeting we found out that the operation is always performed on a Tuesday and you are wheeled into Theatre about 7 am. You are admitted on the Sunday beforehand for assessments to be made,inoculations to be administered and general preparation for the operation to begin. A visit to the Intensive Care Unit is also included to allow you and your family to prepare yourself for what you will see immediately after the op.
The operation lasts on average some 10 1/2hrs and you are kept sedated throughout the Tuesday evening and providing all is well gradually brought around throughout the Wednesday.
You can expect to stay in the ITU for up to a week and then get transferred back to the PMP ward for recovery. The average stay in hospital is around three weeks and I should expect to be off work for three months.

It sounded pretty full on.

We now had time to prepare. We needed to make lots of plans to ensure that our stay at Basingstoke was as smooth as possible and not have to worry about other things such as finances and the like.
We booked meetings with our financial advisor and reviewed insurance policies. We Met with the Macmillan/ Citizens advice beuro team who work together to support Cancer sufferers to find out if we were entitled to anything. Its worth stating at this point that Cancer sufferers are exempt from paying prescriptions and all you need to do is fill out a FP91A Exemption from prescriptions form and get your GP to sign it and away you go.
We also made plans regarding the children's care whilst we were away. My aunt has volunteered to come stay with them for the duration of my stay at Basingstoke and the rest of the family would chip in and help.
It is important for me to know that all these points were covered so that when I finally get admitted for the operation I can simply worry about myself and getting better rather than if bills are getting paid and whether the kids are being looked after properly.

At the same time it gave us the opportunity to think, to prepare for what is to come. This suited me as I take time to internalise things and build myself up mentally.
All kinds of things run through your mind. Will I survive the op? Will I suffer any complications afterwards? What will my quality of life be like? How will I manage with a stoma if I needed it?
Its funny, all your life you just carry on happily doing the day to day things comfortable in the knowledge that you are well and making plans for the future. Holidays,family days out,birthdays and Christmas. Subconsciously looking into the future with a picture of what you want to do and places you want to go.
I don't have that, I used to. I don't anymore. Just a black,blank space where the future used to be. I cant get it back until the operation is done and I know I have pulled through and hopefully PMP free.

You don't realise until you are in this position just on how many levels Cancer takes things from you. Physically, Mentally, Financially. I love my job and enjoy what I do for example. My employer has been fantastic throughout and I cannot fault them in anyway. But I have a pretty high profile role within the business that needs to be covered whilst I'm away. So at present we are looking for a person to cover me whist I'm off. Its tough though, I know my job is there for me when I come back but it still doesn't make giving away your job any easier. What if I don't come back? What if I cant do it afterwards? What if the person who covers me does it better? What if.....What if.... And the trouble is no one can truly answer that question.
So all I have is hope.

And we have allot of that! I'm fit, I always have been and I eat well. I don't drink (well just a little!) and I don't smoke. That must count for something even if it simply means I will recover faster.

We also decided now that we had time to come to terms with things it was time to break our rule and start researching this thing on the Internet. We needed to be prepared so that we could ask informed questions where required. We needed to make contact with support groups and other sufferers to ask them questions and talk to them about their experiences. It was time to take this PMP bull by the horns and !kick its ass!" as became our saying!

Saturday, 21 November 2009

The First Meeting at Basingstoke.

We had been given the bad news and were now waiting for our first consultation at Basingstoke.
Lesly had told me it could be 3-4 weeks before I was seen which seemed ages to wait after such bad news. We just wanted to know what was going on and how quickly I would be operated on.

We decided that we would carry on as normal. I was not affected with any side effects so no reason to change anything. It would keep some normality for the children and keep our minds busy with work and so on helping to keep us in a positive frame of mind.
We did vow not to go onto the Internet and research the condition as we were frightened as to what we might read.

So as normal as possible we kept things. I returned to work. I felt well in myself and continued to run 4-5miles twice a week in my lunch hour and longer at the weekend. The summer was here so I dug out the fishing gear and spent a few Sunday afternoons at my favourite little lake just up the road. i also made a return to caving after leaving it some time after my appendix was removed. Only an easy tourist trip into Swildons Hole on the Mendips taking a few friends down to sump one and back.

I made contact with the team at Basingstoke. I wanted to introduce myself and had a lengthy conversation with Susan Alves about what would happen next. Again she indicated that it would be some time before we were seen as my notes had to be transferred and the CT images analysed by the team at Basingstoke.

Finally the letter arrived, I was to meet with Mr Cecil on Wednesday 19th August at 10am.

We decided that both my Mum and Dad should come too so they heard everything that was said for themselves "straight from the horses mouth" so to speak. My Aunt who has been a good send throughout would come and sit with the girls.

We left early on the day of the appointment as we had a 1 3/4hr drive in front of us and didn't really know how to get there. Luckily the Navman did!
We arrived at the hospital and made our way to the outpatients clinic. We were soon shown in by Sue and met Mr Cecil.
Mr Cecil asked me to talk him through the sequence of events leading up to my appendix perforating. He examined me and then we discussed in detail the various aspects of PMP whilst looking at my CT images.
He explained that PMP was very slow growing. I had evidence of it around my Liver,Stomach,Spleen and in my pelvis. The right side of my abdomen was pretty clear as this had probably been cleared out during the appendectomy. He advised that the small amount of fluid seen had probably been in my abdomen for between 5 and 10 years!
He told me about the operation. He explained that I would probably need-
- A midline laparotamy with excision of the umbilicous.
- Stripping of both diaphragms.
- A diathermy liver capsulectomy.
- A Cholecystectomy.
- A greater and lesser omentectomy.
- And either a diathermy capsulectomy of the spleen or spleenectomy.
- A right hemicolectomy or possible excision of the appendic stump.
- And possibly a anterior resection.

If all the disease is then removed then an hour of intra-operative chemotherapy and possibly some post operative chemotherapy.

it was decided that a second CT scan should be done in October as there is often a lot of fluid left in the abdomen after the initial appendectomy and there was a slim chance that the body could re absorb this fluid.
If the fluid stayed the same or grew however, we would do the op.

And that was it.

The meeting was far more upbeat. The team seemed confident that there was something that could be done and whilst there are no guarantees there was a good chance things might work out OK. The statistics were that for two out of three people operated on they would remain disease free at three years post op. The odds didn't seem totally stacked against us. We all felt better and probably more positive that we had been for a long time.

I headed to the bloods clinic where blood was taken to check tumor markers.
We stopped in the cafe and ate some lunch and then headed home.
May be the PMP rollacoaster had just turned a corner slightly?

Saturday, 14 November 2009

Another blow of the Hammer

We were feeling down.
The shock and mental stress of the Appendectomy were only just out of the way and suddenly I'm told I have Cancer. It knocks the wind out of you and you feel sick in the pit of your stomach.
So much runs through your mind....can I get over this? Why me? Am I going to die? I have known people who have suffered from this terrible disease and fought hard and lost. Will that happen to me?

The CT scan date arrived and I again left work early to go get the scan done. Work had been fantastic and incredibly supportive, giving me time off to deal with all the appointments I needed to take and offering help wherever possible.
I arrived again at Southmead hospital and found the waiting room. I had not eaten for four hours beforehand and had drunk a liquid dye the hospital had sent me prior to the scan. The waiting room was small and again it was a warm day. I went in and sat down. To my left were two older ladies with no obvious ailments. Directly in front of me however was a lady who was clearly undergoing treatment for cancer. She wore a headscarf and was pale and her skin was grey. I couldn't help but wonder if that was I was going to look like at some point in the near future?
My name was called and I was shown to a cubicle. I had to put on a hospital gown and a cannula was inserted into my left arm. I waited quietly in the cubicle until my name was called.
I was soon led into the scanner room. In front of me was a big machine. Not the long tunnel you see on the television used for MRI scanners but a smaller version we have nicknamed "the donut". I led on the bed and was made comfortable. The bed was raised and then moved through the donut. On the other side I was asked to raise my arms above my head and the cannula was connected to the machine. The staff left the room and the machine was started. Its not too noisy and there are verbal instructions given to the patient throughout....."breathe in.....breathe out....breathe in and hold..." at this point some sort of liquid is given via the cannula that must react with the liquid you have drunk to dilate the blood vessels throughout the body. Its a strange feeling your whole body feels hot and it feels like you have wet your pants!
Within a few minutes its all over. Back to the changing room and the cannula was removed and I was off home. Now the wait for the results...

An appointment came through for me to go back to see Ms Burt and Lesley Atkin. Lesley also rang to suggest that Tracey comes to the appointment too as I had come away from the first appointment not quite fully understanding all the points discussed.
We arrived at Southmead and sat in the waiting room at the Colorectal ward. Finally we were called in. We walked through the consultants office and into a lounge like,very comfy room. My heart sank. This didn't bode well.
We sat down the mood was sombre.
Ms Burt did most of the talking. Basically the CT scan had shown a mucinous like jelly coating the organs in the abdominal cavity. It was a very rare type of Cancer known as Pseudomyxoma Peritonei. It was a very rare type of cancer that effects one in every million people. Because of the nature of this cancer it cant be treated by conventional chemotherapy. Instead the usual treatment is a huge operation known as the sugarbaker technique. Because of the seriousness of the operation and the specialised nature it was not an operation carried out by normal hospitals and I was being referred to a specialist center in Basingstoke.
Tracey burst into tears and I was close to it.
This was bad.
"So what are my chances"
"You are a prime candidate for the operation,fit and well. But people do die from this condition."
"the other thing we must stress is that this is a very slow growing cancer"
The rest was a bit of a blur (again). We were handed a information sheet about the condition and the details of the specialist nurse in Basingstoke who would now be handling my case. An appointment would be made there soon for me to meet the team.
We composed ourselves and left. This was by far the lowest point we had been.
We got out side and Tracey again broke down, I held her and we cried together. Our world was shattered.
We drive home in silence, both of us numb.
We got hame and once through the front door Tracey again broke down, this time her legs going from under her and in hysterics. We sat together and cried some more.
I rang my parents and asked them to come up.
They arrived only ten minutes or so afterwards along with my brother. We broke the news. More tears. At this point Tracey read the leaflet that we were handed. I had avoided it up until now but had to read it. It was bleak reading.
" I don't stand a chance" I said and broke down again.
My parents left for a bit. Mum was unable to cope with the news.

When the girls came home from school we decided to tell them the news. There was now too much at stake and too much going on to keep it from them any longer. we were careful what we said but told the truth throughout and vowed that we would tell them everything (within reason) from this point on.

Mentally I felt like a nail being driven into a piece of wood. Blow after blow of bad news and I simply wasn't sure how much more I could take. This is the best analogy I could use to describe how I felt.

I visited work the following morning to inform them of what was happening. I took a few days of to come to terms with what I had been told.

Friday, 13 November 2009

The First Bombshell

I left work early on the day of my appointment at Southmead Hospital. I was meeting the consultant Miss Burt and the specialist nurse Lesley Atkin. It was a hot day in June and the waiting room was not air conditioned and stuffy. As usual they were running a good hour behind....
I was feeling well and had recovered from the Appendectomy. As far as I was concerned this was a post operative check up to ensure that all was going well. My name was eventually called and I made my way into to an office where Miss Burt was sat behind a desk and Lesley to her right hand side. The desk was in the middle of the room and behind was a bed with the usual curtain rail around for physical examinations.
The introductions were done and the mood of the meeting was sombre from the start. Both Miss Burt and Lesley were very quiet and got straight to the point.
Basically when the appendix was sent to the lab for a biopsy after the operation they had found a problem.The lab found that I had a "muanous cystadenoma with associated low grade muanous adenocarcinoma" whet the hell did that mean?
Cancer, I heard.
At this point it all became a bit of a blur. There was some talk of one of the things they had found as being benign or benign like. I was told that I would need to come back and get a CT scan done. I told them that I had already got an appointment for this.
They also said I would have to come back for a colonoscopy and very likely to have to come back for another operation- a right Hemicolectomy. Oh no.
The CT would give them more of an idea of the problem along with the colonoscopy and enable them to put a care plan together. I was briefly examined and they were happy with the way I was recovering from the Appendectomy. I was handed The Patient Information Card for patients who had undergone a colorectal investigation and that was it.

I walked back to the car in a state of shock. I had cancer. But the shock meant that I hadn't taken in the conversation properly and didn't fully understand what was happening or my condition. I drove home, typically the traffic was congested,it was hot, I was fighting back the tears and in a state of shock. How was I going to tell Tracey?

I arrived home and found Tracey sat in the garden sunning herself and the girls out playing.
"come inside we need to talk" I said
"Come inside"
We sat in the front room and I burst into tears and told her what had happened. She questioned me and I couldn't provide the answers as I hadn't heard what was said to me properly and could only really clarify what was happening in the next couple of weeks and handed her the Information Card.
Tracey was upset. The girls came in and we told them to go back out and play. We rung my parents and my brother and asked them to come around.

Later that night we broke the news to them. My mum was devastated....

That was just the first blow.....

Friday, 6 November 2009

Recovery from the Appendectomy.....

I was on a mixed ward at Frenchay Hospital. In our room there were six other chaps all of whow were recovering from various operations. Gall bladder removals seemed popular and one lad had been flown in from Gloucester after a nasty bike smash and had a cage around his leg where the surgeons had attempted to re build it.
I found the ward very noisy. At night the lights were only dimmed and of course the nursing staff carried on their busy duties. One old fella at the end of the ward was obviously suffering from some sort of dimentia and would spend the entire night shouting and wandering the ward.The nurses struggled to cope with him.
My first night I was still awake at 3 am when a nurse told me I should be sleeping....the chance would be a fine thing!
The following day I resolved to ensure I asked for something to help me sleep when the meds were handed out at bedtime.
The days went by ok. Tracey would be in to visit as much as she could and it was hard on her having to juggle the kids and come visit me,especially as she didnt drive.
I had books and magazines to read and my MP3 to listen too but felt too tired to concentrate on any of these.
I still had a drip in and was on high dose antibiotics as well as taking pain killers orally.On the Wednesday/Thursday I had some kind of reaction to the medicine they were giving me. I felt like my whole body was trembling in time with my heart beat and could feel the blood pumping round my veins. It was a weird sensation I could feel it in my throat and tongue and asked Tracey if I was visably shaking? I wasnt.
It was very subtle at first but that afternoon a drip I was on was turned up and was going too fast. I could feel every drip and felt like my eardrums were going to pop! The nurse came and turned it down. I went down hill from there though suffering halluscinations and feeling very hot and feverish,the trembling intensified.
By the time Tracey and Mum came in to visit me I had gone down hill fast and they left early,Tracey I could tell was upset.
I asked the nurse to give me something to help me sleep as I could not settle with the visions I was seeing when my eyes were shut. She gave me something and it worked, I was out for the count. It was the best night I had slept since I'd been there and only stirred when one of the nurses was washing my cannula in the early hours.
The next morning I felt much better! The lad in the bed opposite said how well I was looking and how bad I looked the night before.
I was now eating food again although only a little at a time. I can stomach most things but the hospital food was grim and I survived on Jaffa Cakes!
That day my stomach drain was removed wich wasnt particularly pleasant but I was glad to be rid of it.
The following day (Friday) I was allowed home and was soon washed and dressed and ready to go. Tracey arrived with my sister-in-law Lisa and my brother Stephen to pick me up. The nurses gave me my meds to take home with me and I was free!
It was great to be home. I stepped in through the front door an burst into tears. I think the mental as well as the physical trauma had taken its toll and they were tears of relief.
Its was great to see the kid again as they came in from school and again there were more tears.
The next few days I made huge gains,just being in the home environment and eating good meals made a massive difference to my strength.
Tracey was an absolute star and looked after me fantastically, helping me with bathing and anything else that needed doing. I'm so lucky to have her.
The next few weeks my stregnth grew further and I felt much better. I returned to work three weeks after the appendix rupturing and got on with things.
I recieved a letter through the post for an appointment at Southmead hospital's Colorectal unit out patients clinic and then was telephoned a day or so later with an appointment to have a CT scan.
"It must be a checkup" I thought, the outpatients clinic for the physical examination and the CT for an internal check on how things were healing.
Little did I know how far from the truth I was and of the bombshell I was about to be hit with...........