Sunday, 28 March 2010

Eight Week anniversary

It'll be my eight week anniversary on Tuesday 30th March since having the MOAS. I have to say that the time has passed quickly and all those pipes,tubes,drugs and nightmares seem a long time ago now,thankfully. I'm pretty positive at the moment and concentrating on getting fit again and building up my strength. Food is becoming easier, my portion size is growing and I am eating more. My weight however hasn't moved, I havent dropped any and I haven't put any on either. I am finding the supplementary Fortisips shakes not so nice now and haven't had any for days.
I have stopped taking the cyclizine and Omeprizol (stomach settling drugs) as I wasn't suffering any sickness or acidity.
At the last set of blood tests taken around a week or so ago my platelet count had dropped to 744. Once it falls below 700 I can then stop the Aspirin. The nurse will be back in around two weeks for the next test and hopefully I'll be below the 700 mark then and able to stop the Aspirin.
I still have a numb area at the base of my back. From what I gather this seems to be fairly common and is down to nerve damage done during the operation. In many cases sensation returns with time.
I went to the stoma clinic this week and they are very pleased with my progress. Usually they aim to see patients again in another two months or so but that should fall around the time of my reversal so they deemed it not necessary. Its been left that I call them if I need them.Good news I think.
I have been doing some research on insurance in recent weeks. Travel insurance looks possible through specialised insurers (see link in useful links section) but in terms of life insurance post op no-one will touch a PMP patient. A few years down the line and this may change providing one stays PMP free.
I have been walking regularly and gradually going further and further. I can do an hour of constant walking quite easily now and spent a lovely afternoon with Chloe last weekend out walking (see photo) just Chloe and Dad time. I'm lucky enough to live very close to the Bristol and Bath cycle path and am making use of it. The path is flat and easy to walk with plenty to look at and semi rural. I'm hoping to walk to Bitton station this week. It'll be twice the distance I have walked previously but I feel if I take my time then I'll do it. There are also a number of places along the way where I can stop and take a breather if required. I'm looking forward to it as it's almost like I'm starting to get back to normal..and I'm setting myself challenges again and starting to think about future challenges once I'm back to full fitness.
I have to take it steady though and not overdo things. The nurse keeps reminding me that whilst I feel well my insides are still healing and I should take it carefully but they do recognise that I'm making remarkable progress and at the same time don't want to hold me back. Its just a case of listening to my body and reacting accordingly. If I'm tired, I sleep. I fell asleep on the sofa yesterday afternoon something I haven't done in a long time and could have been a result of my long walk the day before.I just have to be sensible.
Mentally both Tracey and I are doing well. Things are starting to get back to normal and that helps. I think once the reversal operation has been done and I have returned to work we will truly start to return to normal and be able to plan our future. Holidays,days out,family get togethers, all the things we took for granted before. Finally it seems that the black hole that was my future pre op is starting to look not so black and there are hazy glimpses of future plans and dreams.
However PMP is now our Albatross. It will always be there in the background even on the very best of days and will become all too apparent around the yearly scan dates. Tracey is struggling with this more than I and often asks "will it return?", "if so, how long will it be before it happens". No-one can answer that question, not even the consultants and we cant live worrying about that. If it happens we will deal with it when it happens, who knows I could be knocked over by a bus next week. No-one knows what the future holds.
So for now, I'll keep enjoying those walks, plan my future challenges..Pen-Y-Ffan(again!), Snowdon, fishing,caving and most of all time with my family. I'll get the reversal done and we'll get back to normal and enjoy the second chance that the staff at Basingstoke have given me.

Tuesday, 9 March 2010

9th March 2010 My five week anniversary.....MOAS + 5 weeks

Its now five weeks to the day that I had the operation. How things have changed! In the last week I have finally started to put on a couple of pounds and this has coincided with a huge improvement in my strength. The picture above was taken at the weekend when I went walking with my family on the Bristol to Bath cycle path. We are lucky that is so close and the semi rural surroundings make it a joy to walk. I'm now managing walks of around 3/4 hr regularly and am thinking about increasing it a bit more next weekend. I am treating my walks just like my running training. I have a long flat route to build endurance, a shorter hilly route to build strength and a short flat route for when I'm just too tired for the others (which I haven't done for a while now).
Mentally I also feel stronger and far more lucid. As time has passed dealing with what I have been through has become easier and the hallucinations are fading into the past although still make me uncomfortable when I think of them. I have finally also started planning my future a bit. Something I hadn't done pre op. We have tentatively talked about a family holiday later in the year after my second operation has been done and I have a few months work under my belt again. Never the less something to look forward to.
The caving and climbing will have to wait a bit I think until I am really fit. In the mean time I plan to do some fishing through the summer months and continue with my walking. Who knows I may get back up Pen-Y-Fan before the year is out. I also want to take the kids camping and do some of the things we have been putting off.

Food is becoming easier and slowly the volumes are increasing. I still cant manage a full meal at the moment though so am still supplementing meals with the Fortisip shakes.
I have no pain so have cut out all the painkillers totally although I am still taking medication to help settle the stomach and of course the Penicillin which I will have to take for at least the next year now that I am without a spleen. My Platelets are still high (1700) so I am also still on the Aspirin to thin the blood.

In all things are really starting to look up and I'm feeling pretty good. Just need to keep working on my food intake and getting back to full strength although I think that could be a slow and frustrating process.

Adjusting to life at home and coming to terms with what we had been through....

Once we were home and settled things seemed a little strange. I was still weak and tired from my ordeal and needed to sleep on an afternoon to get through the day. Food was still extremely difficult to get down and I was only eating small amounts. I weighed myself and had now dropped down to 10 stones 13lbs. I'd lost nearly two stones since the operation.
The day after we came home the district nurse came by to check on me and to remove my staples. I wasn't looking forward to that bit as I thought it may hurt. In the end it wasn't too bad, led on our bed the nurse removed the 47 staples that had held me together for so long. The wound was healing nicely. She also re-dressed one of the chest drain dressings.
We ordered more medication to be delivered to the house to ensure we had plenty, she also organised my sick note for work and in light of the fact that I was loosing weight also sorted me out some Fortisip shakes. These are high calorie milkshakes designed to boost your calorie intake. Bloods were also taken to measure my platelets count (previously over 2000).
A few days after that the local stoma nurse came to visit to check on how I was doing and to check the measurement of the stoma to ensure I was cutting the bags to the right size. Whilst I dislike every minute of having to have a stoma its a necessary evil and for me luckily a temporary thing.
Tracey and I were sleeping in separate beds for the first week or so. Tracey was so conscious of not bumping into me and hurting me or woke every time I moved worrying that something was wrong it resulted in her not sleeping at all the first night and it was important that she was well rested and strong so she could care for me during the day. This only lasted about a week and once she was a bit more relaxed things got back to normal.
In the immediate weeks after returning home both of us were shell shocked I think. We looked back at what we had just been through and realised what a complete nightmare it had been. Whilst you are in hospital you become so focused on what you are doing that you block everything out. Its only when you get home and start to relax that it really hits you. We struggled to discuss the events of the last few weeks and were both quite emotional for a while. The hallucinations still haunted me. There were three in total that really upset me, the one in intensive care when I thought it was the end and then I had two instances (one in intensive care and one on the ward) where I awoke from sleep not knowing who I was,where I was or why I was there? Each time it took several minutes for me to rationalise things and be talked down by the nurse. They scared me.
I started doing the short walks that the physio wanted me to do. Initially just to the end of the close and back (about 50yrds!). This soon turned into circuits of the close and then further.
I was still tired and found conversation difficult. I was happy just sat quietly and to be honest couldn't concentrate enough to hold a lengthy discussion. This resulted in Tracey and I often sat in silence. It wasn't an uncomfortable silence but it was silence never the less and was starting to bother me. I also felt that I wasn't interacting enough with the children and that upset me too. As my strength started to grow things did start to change and I became more "chirpy". Some days were better than others but I was making progress. There was a lot of adjustment to be done and some rationalization needed in my head in order to get back to something resembling normality.

Saturday, 6 March 2010

Monday 15th Feb- MOAS + 13 GOING HOME DAY!

Today was the day....I was going home. I was well ahead of schedule and had surprised allot of people. We had been advised prior to the operation to expect to be in hospital for three to four weeks. I had done it in two. I can only put that down to the fact that I had been so fit and well beforehand and had looked after myself beforehand. For me I didn't just get fit for the operation I had been keeping fit and eating well for years, it was a way of life for me.
The morning passed by quite quickly. One of the doctors popped by to say that my platelette count was very high (over 2000) and that I would need to take Aspirin to thin the blood until the platelette count fell below 700.
I was also weighed I was down to 11 stones 7lbs from 12 stones 13lbs prior to the op.
After lunch the nursing staff asked me to vacate my room as they needed my bed for another patient. I got dressed into my civvies for the first time. It felt strange I was becoming human again but was apprehensive about venturing outside of my bubble.
Sue came by around 14:00hrs and de briefed us. She ran through all my meds and had produced a spreadsheet telling me when to take what and when. A real help. She also went through the operation in detail explaining what had been done thoroughly. I was glad that we had left it so late to do this as I was finally lucid enough to take it all in.
Then we were just waiting for my meds to be issued by the pharmacy. This took ages and we didn't leave until 15:30. Venturing outside was great, finally getting a lung full of fresh air. But it was a little daunting. Now for the 2hr journey home.
By the end of the journey I was tired and had enough. It was good to be home and the girls had made me welcome home banners!
Joyce had also cooked a lovely roast dinner. Tracey was glad to finally have some proper food, I struggled with it a bit.
It was great to be home at last!

Sunday 14th Feb-MOAS + 12

I had a quiet day today. It was Valentines day and Tracey and I exchanged cards. We had been out for a meal prior to me being admitted as we knew that I wouldnt be up to it afterwards.
It was a quiet day. All my pipes and drains had been removed and the nurses were only administering pills as and when I needed them.
The highlight of the day was that the family were coming to see me. The girls, Joyce,Stephen and Lisa and of course Tracey, Mum and Dad. It was great to see my girls for the first time and it was a tearful re-union. I managed about an hour and ahalf and then grew tired and had to leave them. They spent another few hours at the flat with Tracey whist I rested.
The stoma nurse came by and again I went through changing the bag. This went without a hitch and she issued me with my stoma kit and ordered supplies to be delivered to our house mid week so I had all I needed. She was happy and signed me off.
The last hurdle had been overcome.

Sat 13th Feb- MOAS + 11

More good news today. The Potassium levels from the bloods I had taken yesterday again came back fine.
Managed breakfast fine and today managed to eat Rice crispies and a piece of toast. woo hoo!
Jon came to see me today as he was going to London for the weekend to visit family. It was great to see him and catch up on all that was happening at work etc.. It really brightened up my day and we sat an chatted for around an hour or so. He brought a bundle of get well cards and messages from all my friends at work. It was great and I was surprised at just how many people had bothered to send me messages. It meant a lot to me and I was touched by it.
I came back and ate some lunch but again it was a struggle.
I felt tired today so decided it was wise just to take things easy. The doctors came around and advised that all being well I should be going home on Monday.Cant wait!

Friday 12th Feb- MOAS +10

Today I had my central line removed. This was done on the ward and was ok. The nurse simply Unpicked the stitches and removed the line. I had to lie still for 15mins afterwards to let things settle. All was fine.
The stoma nurse came by as expected and I managed to change the stoma bag without any problems. I still hate it though. She gave me a bundle of leaflets to read on the stoma care and dietary requirements. She would come back over the weekend for the final sign off.
The physio nurse also came by today. I had been walking short distances around the ward quite a bit and felt reasonably strong. So she suggested that we walk down through the next ward and do "the stairs". I had heared so much from other patients about "the stairs" and how difficult they were in our weakened state. As we left the room Ron offered to come too as the nurse was a pretty young blonde and I think he was quite jealous! I headed down the ward without problem and came to "the stairs". I was quietly confident and didn't think it would be a problem. I was right, I climbed them steadily and made my way back down without a problem. I had done well and we took a casual walk back to the ward chatting along the way.
"well as you have done so well I dont need to see you again" the physio said.
"I'm signing you off"
Another hurdle overcome and another step closer to coming home.
That afternoon I took a walk with Tracey down the the WH Smiths shop in the foyer. It was probably the furthest I had ventured so far and we used a wheelchair to come back as I was quite tired.
Tracey also gave me my first shower, it was bliss. A proper wash. I was finally feeling clean.
My bloods again showed the potassium was high and a second test was done. Again it came back fine.

Thursday 11th Feb -MOAS +9

Tracey could come and see me today as she was now clear of the virus. Typically she couldnt get to see me until 10:30 as I had my second chest drain removed. They also started to reduce the TPN (high calorie liquid food) that was fed through my central line as I had started to eat proper food. The plan was to stop it late that evening and then I could have the central line removed. I'd done well for breakfast and managed 1 1/2 pieces of toast. I also managed a walk again today.
Again I had to get another X-ray done as I'd had the second chest drain removed. I had a second blood test today as my potassium was high. The doctor explained that this could be simply because they took too long getting the bloods to the lab and the blood hemotised causing the potassium to spike. The second test came back fine.
For lunch I managed some mashed potatoe and a few green beans. To be honest I was just going through the motions as I really was not interested in food. I didnt fancy anything as I wasnt hungry, food was a real chore.
That afternoon the stoma nurse came by to show me how to change the stoma bag. I'd been emptying the bag myself for a while. This was the one thing that I was struggling a bit to come to terms with. I reasoned with myself that it was only temporary and that 3 months would fly by and then the reversal would be done. It was there to ensure that everything healed ok and to give the bowel a rest.I just had to deal with it for a bit. Tomorrow the nurse would come back and I would have to change the bag myself. Do it well and she would sign me off.
Tracey and Mum left me around 19:00hrs to watch a DVD. Now that I was loosing all the pipes and tubes mobility was getting far easier and sleeping was much better as I was not restricted by anything.

Wednesday 10th Feb -MOAS +8

Mum visited me again today as Tracey still couldnt. I had managed to have a shave and a proper wash and was sat in the chair.
I had my right chest drain removed as the central line had come out. This was followed by an X-ray to check that the lung was fully inflated and all was ok. At the same time I also had ultra sounds on my legs to check for blood clots. This took about 1/2 an hour and reminded me of the last time we were at the hospital for ultra sounds for when the children were being born. The results were good and there were no problems.
I was allowed some lunch today and had soup and jelly and icecream for lunch. I also started using the the spirograph today in ernest to try to improve my lung capacity.
I again had jelly and icecream for tea and was told that if I kept it down I could have toast for breakfast tommorow! Oh joy!
I also spoke to the girls today on my mobile. It was the first time since the op and they were very excited. It was great to hear their voices and I was quite choked afterwards.

Friday, 5 March 2010

Tuesday 9th Feb MOAS +7

It was now exactly one week since the MOAS and I was doing ok. Unfortunately Tracey was not and had been up all night with D & V. The ward told her that she was not able to come visit until 48hrs after her last bout of sickness. She was gutted.
Both Mum and Dad came to visit me instead though. I had slept well and was feeling OK. Mum finally got my shaving kit ready for me as I was sporting a great beard by now!
That afternoon 5 of the six stomach drains were removed as I no longer needed the chemotherapy. It was a strange feeling as the drains went in quite a way and you could feel them being pulled out. No anesthetic was needed but I did use the PCA to give me a extra hit of morphine just in case!
I managed to sit in the chair and was a little tired. Unfortunately the fun did not stop there. A short while later I was wheeled down to Theatre again to have the central line in my neck changed from the right side to the left. This is done weekly to prevent infection. Its also done only under local anesthetic.
I led on my bed with my feet slightly raised whilst the surgeon basically cut a slit in my neck to find the major artery and then made an opening in it and inserted a piece of wire that was then stitched into place! Nice. I was then taken to recovery where they did an Xray to ensure that my lung hadn't been punctured in the process!
I was then brought back to the ward. Just as I was settling down after all the excitement the physio arrived and it was time to go walk about. I managed to walk out of my room, to the nurses station and then back again. All of about 25ft but it was a start and I actually felt that I had achieved something.
When I got back the nurse was waiting for me yet again, this time to remove all the dressings from the main wound to allow it to breathe. She was pleased with the way it looked and said things were healing nicely.
I again made it into the chair and had a bowl of water to wash my face properly for the first time in ages. It was hard work but worth it. I cleaned my teeth properly too.
I was also allowed to start drinking tea and squash so was quick to open a bottle of blackcurrant that I had waiting. I really struggled to get the lid off where I was so weak.

After all the fuss I was tired so hopped back into bed. I started to chat with the other chap in the room- Ron Thorn. He was 80 years old and a colourful charactor.
"what was your line of work Ron?" I asked.
"You don't want to ask me that whilst your in here" he replied.
"why is that?...go on..."
"I'm an undertaker" he replied!
HE was great to talk to and really helped the time pass with some fantastic stories about his job. He was a real craftsman too as he also did all the stone masonry and made the caskets as well as providing the cars etc. The business had been handed down by his grandfather ti his father and then to him. His sons and grandsons have also taken on the business which is in a small village called Alton not far from the hospital.
Outside it was cold and snow showers blew though although not amounting to much.

Thursday, 4 March 2010

Monday 8th Feb-MOAS +6

When Tracey and Mum came to see me this morning I apparently gave them my first smile since the op. I know this meant a lot to them as it showed that I was feeling better. I had slept through the night and was feeling pretty good. Mr Cecil came to see me and told me that I was doing really well and that they hoped to move me later today and that they were just waiting for a bed on the ward to become available.
My temperature had returned to normal and as I was doing so well my epidural and NG tubes were both removed. At last some real progress. The NG tube had become quite uncomfortable.
Dad came to see me today too which was nice as I hadn't seen him in a few days. Tracey came back in the afternoon but I was pretty sleepy so she didn't stay long. That afternoon the cannula's were also removed from my wrists. Slowly I was becoming free from all the attachments!
Then things happened really quickly. Suddenly there was a hum drum of staff and porters and I was being moved back to the specialist ward C2. I was swapped from one bed to another and then all the wires and attachments untangled and the machines they were attached to moved to the new bed. Then we were off....back to the ward.
By 16:05 I was in my new room and settled. I was in the high dependency twin room sharing with another chap.
All this excitement had tired me out and I spent much of the evening dozing. Tracey and mum left me to it around 18:45 as I was so tired.

Tuesday, 2 March 2010

Sunday 7th Feb MOAS +5

Mum and Tracey came to see me around 09:00hrs. I hadn't slept well an after effect of the hallucinations. My blood results came back fine. The nurses made me comfortable and I spent much of the day sleeping catching up from the night before.
Mr Cecil came around about 13:50hrs and again said that he was pleased with my progress and that they were thinking of moving me to the ward in the next day or two. At 15:30hrs my chemo was drained some Mum and Tracey left at that point. I was also given a bed bath and the linen was changed by the nurses. I then slept for a bit. I dreamed that I was on a beach with the girls and a very strong wind picked me up and blew me across the water so fast that I was water skiing on the surface, I was getting out of control and steered into some trees at the waters edge before I lost control. Another weired dream.
In the evening Dr Morgan came around (another one of the 5 consultants that was looking after me). During that day I had weed over 12 pints through the catheter! She said that this was a good sign that my system was recovering.
My temperature started to climb today, it went from77.7 to 80 and then 84. The doctor advised that if it didn't start to fall then they would start some antibiotics and then do a scan. I was concerned about sleeping and they talked about giving me something to help me through.
That night I had another bad one. This time I had managed to drop off to sleep but when I awoke I didn't know who I was,where I was or why I was there? This was really scary and really shook me. I must have made a bit of a drama about it again as the nurse came over and had to explain to me where I was and why. It shook me up and I took several hours to calm down from it.