29th June

Some more pics of our walk; these were taken by Chris and are obviously in a different league from mine….

28th June: Bembridge Beach

It's a lovely day, of blue skies, so we decide to go for a walk along the beach to the Lifeboat Station. We start off on the footpath running parallel with the main road to Bembridge where the local flora is fascinating and the marshes irridescent in the sunshine. It ends up being quite a hike. Having got almost as far as Whitecliff Bay, we stop off at the Bembridge coast hotel for some refreshment. Chris suggests a game of table tennis, believing that with only a third of a liver I can easily be beaten. Unable to resist the challenge I agree to a game. Though out of practice and not as agile as I usually am, I still manage to win.

The Groynes stand to attention like obedient soldiers with their seaweed hairstyles. A poodle tries to camouflage itself among the seaweed. We see some interesting natural tree sculptures. The round Island Yacht race allows a couple of photo opportunities and we meet a couple of pirates on the way home.

































T

27th June: It's arrived!

Today I manage to sort out the car problems. Checking through the handbook it is obvious from the indicator light that the battery (now eight years old) has reached the end of its useful life and is no longer taking any charge. I ring the dealer, who has a new battery in stock and arrange for the breakdown company to give me a jump start so I can drive over to Newport to get the battery fitted.
On our return our neighbour comes over with some packages. Fifty/50 in paperback. It is a thrill to hold the book in my hand, to turn the pages and to know that this is the result of several years of effort. I am proud and excited. The hardback copy will be available from next week.

June 26th

We had a lovely day yesterday with Gwen and her daughter who came to visit us from Southampton. Swapping our hospital tales was a hoot and the weather was nice enough for us to sit outside the beach hut for a couple of hours in the afternoon.

Today was the scan. For some odd reason the car refused to start (again) so the plan to get to Cowes failed miserably. Instead we took our bikes to Ryde and went on the train to St Denys, from where the ride to the hospital is more rural and very pleasant. Unfortunately the insertion of the canula didn’t go so well, and after 3 failed needles into my arm, they used my hand. The dye then leaked into my tissues, causing excrutiating pain, and now my hand is twice the size it should be. I hate all these treatments. I really have had enough……

Whilst we waited 50 minutes for the train back to Portsmouth, we had to endure endless repetitive recorded messages: Please stand back from Platform three. The train is not scheduled to stop here. The 18.04 train to Southampton Central has been cancelled. A fault has developed in the train and it cannot be rectified.
Strangely the same fate befell the Winchester train. Next the list of engineering works between Portsmouth and Bognor. Passengers for Bournemouth change trains at…do not leave any unattended luggage. It is likely to be removed without warning.

All lies really. There wasn’t a railway worker present in St Denys to remove anything, and it is clear that Southwest trains can’t employ enough people to repair their increasingly failing stock. Maybe passengers for Bournemouth should just top themselves. Bounrnemouth is probably still full of young drunks having hen and stag parties and not worth the trip anyway. Cynical? Qui moi?

June 24th

Today I feel OK again. Though my abdomen is still swollen it is nowhere near as painful and I am so relieved. I decide to have a short spin on the bike, to take advantage of the warm sunshine and the upturn in my health. Strange how much I enjoy the ride. I take the track that runs parallel with the main road to Bembridge. I ride along the marshes enjoying the heady scent of June flowers and grasses and the satisfying crunch of tyres on the gravel. At Bembridge point I take the coastal off road path and make my way to the lifeboat station down by the sea. The enjoyment of such a simple pleasure is immense and I give thanks that for today at least, I am free of pain.

I receive a letter from County Hall with the official retirement day of July 11th. It’s strange. July 11th has had so much significance in my life to date. It is the day I married Paul in 1974, the day my father died in 2002 and now this. Life is strange sometimes.

Rachel emails me with a little anecdote. It makes me smile. She writes about the children being on holiday from school:

I took your advice at one point. I had asked them to clean up the toys before supper. Levana did a great job and Ziva just sat in her doll-stroller with a blanket over her (she was playing being in a wheelchair so perhaps that was part of the problem) and refused to help. So, instead of nagging her or getting cross I went and sat down with her and just started telling her a story about two best friends who played together all the time except one girl always did all the clean up and the other never did, and eventually the girl who never cleans up ends up with no one wanting to play with her because they don't think it's fair that they never get help. Anyway, Ziva was totally riveted by the story and listened intently, but when it was done she just said "Another story!" and continued sitting motionless in her wheelchair. Oh well. Maybe it will plant a seed for another time!

Children are not always predictable in their reactions. I remember going to a day course on solution focused therapy. Ben Furman who gave the lecture, related a story involving his daughter. He was trying hard to get her to sleep with the light switched off at night, so he lined up lots of simple rewards. The final goal of sleeping in the dark was eventually reached. The reward she picked following her success? A bedside lamp!

You can’t win them all but you do have to keep trying.

June 23rd:

It has been a bad weekend for me. I have more problems with a swollen abdomen and am still in a lot of pain. I saw my GP today and he has spoken to the Southampton team. They will call back. I may have to go before the Thursday scan.

In the interim, the first lot of books of my memoir Fifty/50 is on order and the subscriber's copies should be available within the next seven days. Silverwood books have given me a link to their site so that anyone wanting a copy can order it direct from

www.silverwoodbooks.co.uk

[ISBN paperback 978-1-906236-05-2 and hardback 978-1-906236-06-9]


They are arranging a discount code for subscribers. The code will need to be entered at the checkout stage in order to qualify for the discount. Silverwood will ensure that code is available in due course.

20th June:

I took out some Additional Voluntary pension contributions and have found out from the TPS that I am entitled to claim these when I retire (hopefully on July 10th). I have to send as much medical evidence as possible with the forms, and look through the paperwork to see what there is. When I look at all the interventions and the complications I find it so difficult to believe they are writing about me! It sounds horrendous.

Patient admitted 11.3.08 for extended right hemihepatectomy, cholecystectomy and portal vein resection and anastomosos on 12.3.08. Colorectal liver metastasis in R liver and segment IVa and IVb involving the portal vein. Taken to intensive care following surgery and then to surgical HDU 13.03.08. Had right Wallace and T tube inserted following operation. Fluid from T tube grown group D strep and clostridium perfringens and coag negative Staph on tazocin.
Patient developed acute confusion in HDU, diagnosis of hepatic encephalopathy.

I wonder how I am still alive after all that! I also wonder from time to time how long I have. I guess no one really knows but I don’t think I have ever confronted death at such close quarters before.

19th June: Decisions...

We are still considering whether or not to adopt a rescue Greyhound. We went to the RSPCA shelter, but they had only one, called Isaac. He was a stray with little history. He was excellent on the lead, but not very responsive. We were given the address of another animal shelter in Fareham and may pay them a visit when I go over for the scan, which is late in the day. It is a difficult decision to make, since we may find ourselves too tied down; on the other hand this is a lovely area for any animal to enjoy and we have a quiet home. I think we need time to make the right decision for us.
Gwen and Christine, (mother and daughter), that we met at the General are coming over to the Island to visit early next week. We both look forward to seeing them. They are lovely people.
I am currently trying to sort out all my cupboards and wardrobes; a long time overdue, but am working through them slowly. Everything seems to take so long nowadays.

16th June: Festival Fever

I am not looking forward to today’s hospital visit. It is the 16th June and we get caught in the exodus of young people leaving the Isle of Wight Music Festival and heading for the Fastcat. As a result the boat fills quickly and we are still in the queue.
Luckily a slower ferry from Cowes laid on especially, picks up the residue, and we manage to cross the Solent in reasonable time. I look at the crowds around me. A few are in Wellington boots, as though they have been tramping in the sludge at Glastonbury rather than sunning themselves in Seaclose Park! Others are dressed as would-be hippies. Some are wearing almost nothing and sporting goosebumps as they sit on the upper deck. Was I young once? I suppose so.
At the clinic I am relieved to be seen by Marcelo the Italian doctor who knows me well as he saw me throughout the eight weeks in E8. I tell him of the swollen abdomen and the drain problems. Marcelo is patient. He explains that I have had very major surgery with complications and that I can’t expect to feel ‘normal’ for at least another six months. He examines my abdomen. He thinks the swelling is due to all the haematomas from the Clexane injections. He thinks the bad days of shivering, hypothermia and fever are caused by sepsis because of the ‘foreign’ body in my rib. He will discuss with the radiologist the possibility of bringing forward the Stent procedure to happen as soon as they have the result of next week’s scan. I come away reassured and hope he is true to his word. I can’t wait to get rid of this drain.

15th June: a draining time...

Felt very down today. I have had a lot of pain from the drain site in my rib and am feeling ‘abandoned’ by the hospital. They send me off for eight weeks without even a number to call when things go wrong. The nurses and the GP tell me that the drain is so specialised they don’t know what to do. I am expected to go to Southampton for a clinic appointment, and then the following week for a scan. No one thinks of coordinating it into one visit. The whole set up makes me angry.
When I was first told of the diagnosis of cancer I prepared myself for chemo, but I had no concept of how this liver operation would put me out of action for so many long and tedious weeks. It is so difficult to stay strong through it all.

13th June: Sun Sand Sea

Yesterday I had a call from the Finance Manager at work. They have received notification of my ill health retirement. My pay ceases on the 10th of July. We have to agree a date for the retirement to begin, and clearly the 10th of July is the obvious one. I verify this verbally and still need to wait for confirmation in writing. My abdomen is swollen with fluid, but no worse than it was yesterday so I shall hang on until Monday.
We walk along the beach towards Seaview, though the tide and my restricted movements makes it impossible to scrabble over the rocks. We turn back at this slippery barrier but no matter. It is always a pleasure to be near sun sand and sea.







I have been doing some more pastels. This one turned out creepier than I expected!

12th June: Sleepy time

Yesterday was a write off. I felt nauseous and sleepy and spent most of the morning in bed and most of the afternoon sleeping on the couch. I was unaccountably thirsty and Chris was convinced I was dehydrated and began plying me with Diarolyte salts. Yeuk. All I could eat was a slice of toast and jam about midday. I managed to sleep all night too, which is most unlike me.

This morning, though my abdomen is swollen I feel much better. I see my GP who advises me to keep and eye on things and if it gets worse over the weekend to go up to St Mary’s. I decide to meet the cycling group at the Roman Villa in Brading for coffee, and now that I have I’m glad I did. I lost a day yesterday. Days are precious to me and if I have a good one I want to take advantage of it.

10th June: Sea and sunshine

Yesterday I had my appointment with the Warfarin nurse at the surgery. I still have to continue with the Clexane injections until my blood tests show a higher level. We are running out of places on my abdomen that aren’t yet bruised. Christine, the nurse thinks I am doing well.

Today we are go into Ventnor. It is my continued attempt to lead a ‘normal’ life, though the drain tap and tube in my side is a constant reminder that my movements are restricted.

Yesterday was such a hot day and the sea was smooth as glass warm and inviting. I had to force myself to keep out of the deep water and had to content myself with nothing more exciting than a paddle up to my knees. The crab that scuttled over my toes had more of a swim than I could.

June 8th: Hospital Tale

When I was on Ward E8 following my stay in the ICU and the HDU respectively, I observed Sue very closely. She was about my age, From her looks and accent I think she was of Indian descent but had lived in this country for at least thirty years.
Daily she came onto the ward wheeling her heavy cleaning equipment. Conscientiously she dipped and squeezed her mop, wiping and polishing until the floor sparkled. She also distributed jugs of water and teas and coffees.
I noticed from the start that she wore a permanent scowl and always appeared to be in a foul mood. I decided then and there that if I did nothing else of any import whilst in Southampton General I would break through her taut barriers and wheedle a laugh out of her before it was time for me to leave. Daily I would smile in the face of her abrupt TEA/COFFEE barked at each of us in turn as though we were inmates of borstal and did not deserve such luxuries as the lukewarm treacle that passed as a beverage. I carefully ignored the angry frown that accompanied each cup and I never failed to respond with a friendly expression.
I made a point of thanking Sue at every opportunity and by the end of week one I engaged her in a conversation. It was only a few words about her cystitis and her upcoming hospital visit, but it was a start. At least I could see why she seemed unhappy. She was in pain and discomfort without the TLC all the patients on the ward were receiving.
Gradually the icy expression etched into her face began to melt, and sometime during week two she began laughing and joking with me. I had succeeded. She sounded concerned that I had been on the ward longer than all the other patients, and shocked to hear that it was cancer. That seemed to break down the final barrier. As we stood in the washroom, me with toothbrush in hand and drain bags by my side, her with mop and bucket, she started telling me about her past. I hadn’t specifically invited her to, yet once started she could not stop herself.
She had been treated badly by her first husband, but now had a new partner. Her children were making life difficult for her in their blatant disapproval of the new man on the scene. They still expected her to wait on them hand and foot.
“But you see I’ve learn my lesson now. I have told them, it is my life not theirs and to stop interfering. For the first time I feel in control of things.” She was beaming with pride. She wasn’t the only one.

7th June: an English summer

The drain is now sorted and a clean dressing applied. The nurse has taped over the tube to stop the problem recurring and I feel reasonably confident it won't.

It has been a lovely sunny day so we have spent the afternoon at the beach hut where we sat reading, watching and listening to the waves sloshing carelessly against the groynes. I even paddled up to my knees, envying those who were swimming. The longing to plunge into the water is ever present but I have to be patient.


This evening we were invited to a party thrown by the Bembridge Wheelers. It was warm enough for us all to sit in the garden; a beautiful English summer's evening. As we walked back from Bembridge the sun was setting casting a golden glow over the watery landscape. Magic.








I have finally done a pastel for Paul as promised, of the dog 'Princess' that he looked after last winter. Hopefully there is a vague resemblance despite my lack of practice recently.

6th June: Drain Pain

First thing this morning I have an appointment with the Warfarin nurse, then I have my dressing changed on the drain.
Chris and I cycle to the local superstore to stock up with some food for Saturday evening as the Bembridge Wheelers are hosting a party and we are each to bring a contribution. Something goes badly wrong. As we walk around Tescos I become desperately thirsty. I drink a whole bottle of water and still feel the need for more. I can feel a wetness on my left side, and to my horror when I look down it is obvious that the drain is leaking badly.

I go to the ladies room to have a closer look and the tube comes away in my hand. There is yellow bile on all my clothes. Lucky I am not wearing white. I am wet, uncomfortable and feel a rising panic inside me. I shove the tube back into the plastic bung, but have no idea if that will stop the leaking. Chris is waiting for me at the exit, and suggests that we get home as soon as possible. I have horrid visions of needing to return to Southampton because the drain is broken; all my freedoms will be curtailed. Now I am simultaneously pedalling, and sobbing uncontrollably. Chris is pragmatic and suggests I save my energy for the journey home. I can’t help myself. I spent all that time in with the nurse having the dressing changed and now it will all have to be done again. The nurses at the surgery finish at 11.30 and by now it is nearly 1 o’clock. I decide the only answer is to ring the district nurse when I get home and hope that she can sort it out. I make it home, with wet eyes and face and wet clothes.
I leave a message on the District Nurse’s answer phone. Fortunately Chris is able to twist the tubing to re-connect it to the drain. He can see how the problem arose. The drain tube was misaligned causing it to unscrew and become detatched.. We manage to tape it into place. I change, put all my clothes in the wash and wait for the nurse. Not a great day.

5th June: Warfarin

As soon as we return from Leeds I have to keep an appointment with the Warfarin nurse. She is the practice nurse prescriber and is also able to write me a script for more saline flushes, which is useful. I stay on the Clexane injections until my Warfarin dose is decided which is a gradual process. I hope it is soon. The Clexane is given in the abdomen and causes bruising. I have few areas left that aren’t black and blue.

We have spent the last couple of sunny afternoons at the beach hut, and today made our first ‘brew’ of tea on the camping stove. I dream of the lucrative business we could run offering this facility to passers by in the Winter months when the café is closed. Might take too long though, given the paltry size of the kettle plus all the laws of the land that prevent us doing such things. I rapidly dismiss the idea and concentrate on the waves and the boats.

3rd June: Retirement

Today I hear from the Teachers' Pensions in Darlington. They are accepting my claim for ill health retirement and agree that I could not go back to work before my retirement age; this also precludes me from undertaking any paid work in the future. I am relieved that the claim has been accepted though it does feel strange to be plunged into retirement.

Greeting me on the doormat when I returned home yesterday were two letters from the hospital. I have a clinic appointment on the 16th and a scan on the 26th; can't say I look forward to either. I will be so happy to finally put hospitals scans and procedures behind me, but I can't see that happening for several months yet.

Book publication is going ahead now, and I should receive my maiden copy in a few weeks time; very exciting!

Here are a couple more pictures from our trip.

2nd June: Back from the North

We arrived back this afternoon after a busy few days with Daniel in Dewsbury and Leeds. Daniel drove us to the hotel last Thursday. It is about half an hour's walk (at my pace) from his flat, and a lovely cottage hotel in a pleasant setting. We had to book a Leed's hotel for the last two nights as Heath Cottage were hosting a wedding.
On Friday it was a pleasure to explore the hills above Dewsbury, and despite the drain in my side I managed nearly six miles, with a nice break for food and drink half way through. It is good to feel I am regaining some strength, but in another sense the tedium of knowing I have to go through this whole process again with the next procedure pulls me down. The walk was enhanced by the amazingly loud neighing of a horse in a nearby field which, as Daniel pointed out, sounded very much like a car engine struggling to ignite.

Saturday's plans fell by the wayside slightly. We had wanted to wander around the City Centre, but Chris and I soon realised that despite both of us double checking, we had miscalculated the number of saline flushes we needed for my drain, and we were going to run out well before the trip home. Boots Pharmacy would not dispense any saline without a prescription.

I had to phone the local health centre and answer a myriad of questions. They told me a GP would call me back, which he did around half an hour later. He asked me even more questions (what was wrong with my liver that needed an operation ?etc) after which he told me I was a marvellous person for trying to travel despite all this. He would have a script ready for picking up at the Medical Centre. We walked over a mile to get there and picked up the prescription. The GP told me that the local A & E would supply syringes so that was the second destination.

By now I was feeling somewhat peeved that I had spoilt the day with all these detours across the housing estates of Leeds. Daniel was very upbeat about it all and said it didn't matter a jot; what a star he is! Unfortunately the saline solution was dispensed in small glass vials, which Chris and I had no idea how to access. Another trip to Boots on Sunday morning saw us once again asking for assistance. This time the pharmacist told us how to break of the tips and use a needle to extract the saline and inject it into the syringe. So we spent a long time breaking open and emptying 2ml glass vials to make up 10ml of saline. I can think of better ways to spend a Sunday evening.

All in all it was a fun trip and I am very pleased I made the effort. We managed to meet up with Pippa (Daniel's aunt who lives nearby) in the coffee shop which was an unexpected bonus. I am sure these photos illustrate some of the activities and fun that we had despite adversity.



The horse seemed to be more interested in trying to eat my camera than in being stroked!