Post 107:28th February

I went out with the ‘Wheelers’ cyling club again today. I wasn’t convinced they would be at the meeting point since there was a substantial drizzle in the air and I wondered if that would put them off. Margaret runs the group. She was really impressed that any of us had turned up! The rain had discouraged just a few, but five of us set off on the roads and muddy tracks towards Ryde.
Interestingly I have mentioned my Chemotherapy to several people; each one has someone in their family or a friend who is suffering from Cancer. I spoke to Janet who had a sad story to tell. Her son had died of Lukemia when he was just three. It puts my problems into perspective.
Caroline and Jim are coming over to the Island to visit me again tomorrow. I look forward to seeing them. Caroline emailed me the link to a wonderful site that offers an amazing cure for cancer in the liver. It appears to involve a weird mixture of trampolining, parasite cleansing, the eating of copious amounts of cayenne pepper and avoiding foods that kill. They suggest lots of laughter too; not difficult - I laughed so much reading the bizarre advice that I couldn’t balance on the trampoline…

Post 106: February 26th

Looks as though I won’t be able to get a redundancy package from school after all; Dave, our union rep has advised me to pursue the early retirement on medical grounds at the end of this week. He wants a chance to speak to the Head once more, and she is away at the moment. The problem is that at this stage in the reorganisation the job can’t be considered as a redundant post.
Yesterday I went for a ride back to the duck pond to take some more photos. There was a particularly curious rooster who came incredibly close to watch me, and stood rigid, so I could photograph him. He had beautifully coloured feathers; I have attempted to capture him and some of the other wildlife in pastels.

Post 105: 24th February

It really has been a struggle with bureaucracy recently! To add to all my other irritations( TV licence and printer )I had a mysterious phone call last week. A company selling car parts in Northampton left a message on my answer phone asking me to ring them back. As they knew my name and phone number I was immediately suspicious and called them. The gentleman I spoke to told me that it was to do with an order placed online. Apparently someone had used my name and credit card details but had asked for the items to be despatched to Bristol. When they investigated and the addresses didn’t tally they wanted to check that I had placed the order. I was grateful they had picked up on this fraudulent deal. I cancelled the credit card immediately, and spent several hours transferring some regular credit card payments to a different card.
The Northampton company refunded my money and the fraud team said they would investigate further. When I received my bill there were two transactions on the old card I hadn’t made. One was from a cinema in Bristol; not difficult to connect that one with the fraud; the other was another online order I hadn’t made.
The credit card company will refund me all the money. They think the card was ‘cloned’ in some way. Scary stuff!
As some of you know I have been working on writing my memoirs and linking it to my ongoing diary of my battle with Cancer. Well it is finally completed now. As Rachel said, there is no ‘outcome’ to wait for, because none of us knows how long we really have. I was going to wait until I had the operation but decided it would be a better idea to finish the book at this point. Now is as good a time as any.
I have decided to ‘self publish’. To support the ‘print on demand’ scheme, Chris and I are compiling a list of subscribers. If you think you will want a copy (exact price will follow, but it will be a hardback and will probably cost around £7-£11) then please let me know by email and I will add your name to the list to be printed in the book. It isn’t compulsory!

Post 104:22nd February

My writing on bureaucracy has triggered a flood of amusing responses from friends/family. I am reminded of Paul’s tussles many years ago when his very old watch passed down from his grandfather fell apart and he lost the middle of it. He made a claim on the insurance, but a jumped-up clerk wrote to him stating categorically:
“We cannot entertain your claim” .
Paul replied with a masterfully scathing:
“ I do not make claims for your entertainment”
needless to say, he got the money!
We just have to fight on….

Yesterday I went riding with a small cycling club calling themselves 'The Wheelers.' It was a very short ride, only ten miles, and at a slow pace, which is great for me at the moment as it is gentle enough to be viable. It reminded me how much I love to be out on the bike with a group of like-minded people. They were all very friendly and if I can I will ride with them again. We stopped at a duck pond and saw these amazing black swans…



My GP has responded to my request for a medical report. That is good news. After the half term I will contact Dave, the union rep once more to see how to proceed.

I like this little comment from Zsa Zsa Gabor that we found in Chris’ diary:
I am a marvellous housekeeper. Every time I leave a man I keep his house.

Post 103: 21st February

Amy will remember the above; she stayed in the 'Floatel' in Bembridge this summer... It's a B&B. Chris took the photo.





Bine, my German friend, rings me this week. She has breast cancer, and has now finished her chemo and radiotherapy and is feeling much stronger following some convalescence at a rehab centre. I have to translate some of my blog to her as the English is a little too complex. Challenging though it is I am just about able to explain the purpose and procedure of a liver embolisation in German. I reminisce on some of the fun times we spent together in Germany. We once went to a jacuzzi. As we sat in the bubbling water my swimming costume suddenly filled up with air, causing a dramatic increase to my vital statistics from my usual thirty two inches to at least size forty. Bine and I were hysterical watching my enormous protrusions bobbing around. Then we looked across and saw a man staring at me. He was stark naked (Germans don’t have quite the modesty of the Brits) and his eyes were on stalks. We got out of there pretty sharpish!!

Today I get a letter from Southampton Hospital. The scan is scheduled for the 4th of March..more contrast fluid to drink, and another injection of dye. Oh yeuk.

Post 102: 19th February

When I speak to Prof P’s secretary, as I suspected, she said the scan had not been booked after all. It was likely to be in the first week of March, but then would have to be discussed before the operation, so it looks like I will be going backwards and forwards to Southampton yet again… and I still don’t know when this will all be over. I feel as though my life is ‘on hold’ while I wait. The Oncologist is unable to write a medical report without official ‘instruction’ to do so; I am hoping a copy of the Teacher’s Pension Ill Health form will be sufficient.

I receive a reply to my email re TV licence. I was perhaps a little scathing but I had to let off steam somehow!
Subject: General Enquiry
Message:
I have lived in my current home for the past seven years and have been paying my licence fee by direct debit all that time. Today I receive a letter telling me my address isn't registered. How can it take seven years to track this down?
I was unable to update the info online for some obscure reason. I rang in, but have no idea if the details have been updated.

I rang your centre when I moved and informed them of the changeof address seven years ago. I am not impressed, especially when I can't even speak to a human being on the phone.


Dear Mrs Sheffrin

Thank you for contacting us.

I confirm that your licence was transferred to your new address, as a result of your instruction. Your licence will automatically be renewed, under your Direct Debit agreement, shortly before it expires at the end of September 2008.

I hope this information is helpful.

oh the deep joy of bureaucracy

Two days of bright and sunny weather though the temperatures are much cooler than last week. Yesterday I took a spin on the bike down to Seaview. En route I saw a horse and carriage. A man stands on the back sporting a hi vis jacket with CAUTION HORSE AND RIDER in huge print. What else would trundle along the street on four legs swishing it’s tail with someone perched on its back? Bizarre!
Today we stroll along the beach taking random photos.
Jo has left me a message. The scan appointment is not on the system after all. More waiting. I am weary with waiting.
Rachel is worried I might go to prison for non payment of the TV licence. I laugh it off, but then there is a knock on the door...licence dectector van? No, not a chance...it is a detective though....apparently there was a massive fire on Friday night at the Youth Centre just down the road. The fire brigade was there all day Saturday and the policeman is doing door to door investigations as they suspect arson. Who said nothing ever happens in St Helens?

The difference between perseverance and obstinacy is: that one often comes from a strong will and the other from a strong won’t
Henry Ward Beecher

Post 100: February 15th

I have finally sorted out the printer. I went into PC world in Newport. They were very helpful and printed out a copy of the invoice for me. Unfortunately the fax didn’t reach the recipient and my attempt to scan and send it as an email attachment also failed because the print was too small. I was beginning to sense circumstances conspiring against me but was aware I was being irrational. Now I have posted a copy and snail mail will hopefully be more reliable. At least the printer works now, though I am left with two full magenta photo inks which I can’t use!
Today I receive a letter in the post telling me my address is recorded as having no TV licence. I have been paying for one by Direct Debit for years. Seven years after moving to this address the powers that be decide they are not aware of my change of address. I am unable to sort it out online, as they need 30 days notice of a change of address. I am many years too late. When I try phoning I speak to a recorded voice who has trouble understanding anything at all. I think I got through to ‘it’ in the end, but have no way to veryify that other than a pre-recorded assurance they have updated their records. I really need to chill out and not let these hindrances get to me. My attempts to make a home made pizza in the new oven are far more successful. There is probably a message for me in that somewhere.
At least I have stopped shedding quite so much skin and the splits in my fingers are at last showing signs of healing. The thought of having to go through it all again fills me with dread so I try hard not to think about it.Drawing and 'calrin' a dog is more enjoyable....

Post 99: February 13th

Not a great night’s sleep; I suspect the impending op is playing on my mind. I can understand why. Our neighbour Nigel pops in and I tell him about my experiences in Southampton, rating the hospital succinctly as follows:

Expertise with livers 10/10
Food 1/10

Chris and I go for a short cycle ride in the unseasonably warm weather. Standing by the water at the Bembridge Lifeboat Station I comment on ‘The Cruel Sea’. Chris is able to tell me instantly that the book was written by Nicholas Monsarrat in 1956 . With such terrific recall, why can’t he remember what day the dustbin men call? I either have to find away for his brain to store more useful day to day information or I have to survive the operation ! There's a challenge.

The technician calls round to look at the printer. I have pinpointed the exact date of purchase and PC world will duplicate the invoice for me and hopefully fax it to Cannon. That way I won’t be charged for the call out. The technician diagnoses the problem almost instantly; the cartridges are not identical. For some obscure reason, though the company where I purchased them sent all the other colours correctly, with Magenta they supplied photo ink, which the printer doesn’t recognise. Arggggghhhhh!

Hopefully it will all be resolved in the morning. You might not imagine that I would be stressed over such nonsense with an imminent operation to face and all its implications. You would be wrong.

Experience is a good teacher but she sends in terrific bills
Minna Antrim

Post 98: 11th February

I ring the surgery today to find out about a medical report to support my application for early retirement. The receptionist suggests I write in, which I have done in the hope my GP will respond.
My hands are improving daily which is marvellous; just depressing to realise I have to go through it all again after the operation. That is very tough for me.
I also call Jo D, the co-ordinator for the liver team. She rings back this evening. She isn’t completely sure when the scan is scheduled but she tells me that Professor P discussed my case today. She suggests he may want to scan and operate straight away. Possibly around the 12th of March. I will spend a few days in the High Dependency Unit and will then return to E8. I have mixed feelings. I am nervous and anxious, yet want it all to be over. I think for today Winston Churchill’s suggestion fits the bill:
If you are going through hell, keep going

Post 97: 10th February

Thanks to all of you who are praying for me! Something has got through because the procedure on Wednesday could have gone wrong and in fact it all went really smoothly.
I had a visit from my union rep. last night and he is going to support me with my claim for early retirement and possible redundancy package. In the interim I need to get a GP or Consultant report to back this up.
I had a rough day yesterday. I felt really shivery but when I took my temperature it wasn’t high as I imagined, but was about three degrees lower than normal. I just couldn’t warm up. I went for a walk in the hope the exercise would send a little blood pumping round, but my legs felt like lead. I feel better today. We walked across the Duver under vivid blue skies and almost warm sunshine. It was lovely as you can see.
Thought I would share some of the aphorisms we looked at on Thursday:

When written in Chinese the word CRISIS is composed of two characters. One represents danger, the other represents opportunity.
John F Kennedy


It has been said that a pretty face is a passport, but it’s not, it’s a visa and it runs out fast.
Julie Burchill

Post 96: February 8th

It’s over. I am home. Each time I go into hospital I remember with a jolt why I hate to be there. I have to relinquish my independence so the pain is doubled!
We had a fun time in Southampton on Tuesday buying a new kettle and waste bin to match the kitchen and it was no problem to be at the hospital by 9am the following morning. I had been told in the letter to eat and drink nothing after 7am (including sweets and chewing gum). Hard to believe that anyone would munch through packets of sweets in the belief they weren’t eating anything, but there is no accounting for folk!
We started off at the admissions ward where they took bloods and asked the usual questions. We were then left in the waiting room for a couple of hours where Chris and I amused ourselves by reading the wonderful aphorisms on each page of his 2008 diary.
The nurse told us that the ‘doctors’ would be round to explain the procedure in more detail once they had finished the ward rounds. The only doctor I did see at 11.30am was of the junior species; she made five botched attempts to insert a canula into my arm, leaving me punctured, hurt and upset. She knew absolutely nothing about the embolisation and rang for a colleague to help pierce me further. I think he took one look at my reluctant veins and balked at the task ahead. Fortunately he prevaricated with his hand washing ceremony for so long that the nurse told him not to bother; they would insert the drip in radiology.
At midday I was given a hospital gown and sat waiting for the porter to collect me. Chris stayed by my side and was allowed to follow me to radiology where the Doctor who was to perform the embolisation sat and talked to us for well over half an hour.
He explained that it was nerve wracking for him since the procedure was by no means straightforward. There was a fine line between the healthy and unhealthy part of my liver and too far in the wrong direction could have dire consequences. Nice! He also went into all the complications that could arise afterwards. I could bleed heavily and might have to have a blood transfusion. I could be in extreme pain. I signed the consent form despite all the risks. It was obvious to both of us that the alternative was worse and certainly inevitable. Dr S told me not to bank on leaving hospital the following morning, but he would be happy for me to go if I felt well enough.
He stressed that they didn’t want ‘bravery’. They would give me a sedative as well as the local anaesthetic and if I felt pain at any point I should say so immediately. That was the reassuring bit. Thank goodness there was a reassuring bit since my heart was beginning to race and I was starting to dread the whole thing. The reason for the overnight stay was becoming clearer by the second.
Chris left at that point with a few tears in his eyes and I sat in the wheelchair for more clock watching. At 1.45 they brought my bed and I lay on that for another half an hour while they got everything ready. One of the team inserted a canula effortlessly into my hand. Then at 2.15 they finally escorted me into room 15 Radiology. By now my teeth were chattering, more with the chill as with nerves, exacerbated when they swabbed me with icy cold iodine. I caught a peek at the TV screen which displayed nothing more interesting than different views of my liver before they covered me up to my eyes with a sterile blanket.
The sedative calmed me down and I didn’t feel the catheter go in, though there were some unpleasant moments as they guided it through my innards. I did speak out each time it hurt and they gave me plenty of pain killers via the drip. I had to hold my breath several times during the procedure and it seemed to last ages. I didn’t sleep at all, though I felt quite drowsy throughout which made it all less frightening.
By late afternoon it was finally over and they transferred me back onto my bed. The nurse from E8 came down to radiology and escorted me to the ward. She was given strict instructions that I was to have six hours complete bed rest, which would be until 11pm. They also had to take 15 minute observations until then. Did they imagine I would be up and about at that time of night? Weird.
Chris came later in the evening though I was quite groggy and couldn’t talk much. They gave me a bowl of soup and a roll, which should have tasted like manna following twelve hours of starvation, but it was horrible. After Chris left it was a terrible night for me. I hardly slept as the lights were so bright and the noise levels would have summoned the environmental inspectors in any other context.
At 2am I gave up on the idea of sleep. The cacophony of snoring from the adjacent beds provoked murderous thoughts which I resisted despite the freedom now to get up. I asked for a painkiller but had to wait forty five minutes in extreme discomfort before the sister brought me one, apologising as she had been distracted and forgot. Thank heavens for my Nintendo. I became quite an expert at on screen darts and won ten times.
It was a relief when dawn came. There were no hot drinks and no sign of breakfast until 9am by which time my stomach was rumbling. It could have saved itself the trouble. The fare was not exactly exciting, or even palatable. One soggy Weetabix biscuit sloshing around aimlessly in a bowl of milk and a slice of stale bread with marmalade. How are sick people supposed to survive with that standard of nutrition? When I have my operation I will have to get Chris to bring me something I can eat!
The doctors came round half an hour later. A registrar, whom I had never seen before told me they would scan me in four weeks to see if the embolisation had worked. He said I could go home. Before they even left the ward I rang Chris and asked him to come up by taxi. I think he heard the desperation verging on tears in my voice and was there within the hour. Fortified by two paracetamol I climbed into a taxi just after 10 am and we were back in St Helens by 1.30. I am so relieved to be in my own bed this morning. I haven’t left it yet!

Post 95: 5th February

I won’t be blogging for a couple of days as we are leaving for Southampton soon. I am still anxious about the embolisation, but having the kitchen done this week was a brilliant (if expensive!) way to take my mind off it. Now, which room shall I refurbish before the next operation…..?
They finally finished the kitchen at 2.30pm yesterday afternoon and I worked until 7 trying to get a semblance of order. I still need to go through it all at a more leisurely pace when I am recovered, but in the interim it is just great. What a delight to just go to the drawer and take out a teaspoon or to simply turn on a tap to get water. It was only a week of disruption but it felt longer. When I went to bed last night every muscle ached but it has all been worth it! Here are a few photos to give you an idea of how it looks right now….

Post 94: 3rd February

Have just returned from a fun weekend. Teresa, Melissa and Elliott have been planning a surprise 60th birthday party for Gerald. Between them they organised a coach to take a party of friends and family from their house in Essex to a seafood restaurant in Brighton. Teresa asked me if I could go, but I clearly couldn’t promise, since I wasn’t sure about the impending hospital admission. I said we might be able to meet them at the restaurant but it would be a last minute arrangement.
As it happens things worked out well and we were able to book a ferry with a view to the day in Brighton and an overnight stay with Chris’s brother Andrew and his wife Nancy .
Gerald rang me on Friday, with no clue about the surprise. We chatted for ages and I smiled when he told me that Elliott and Melissa were taking him to a breakfast to celebrate his birthday…I said I hoped he would enjoy it!
Yesterday we got to Brighton in good time for the 1pm rendezvous and went to look round the shops and lanes before walking down to Regency Square. Gerald was so delighted to see me! He told us that he had drunk gallons of coffee that morning as Elliott and Melissa were trying to keep him from being at home until 10am to give guests the chance to arrive. Once on the coach he still didn’t know where they were heading…Lakeside? (why?) Southend?
We had a great time together until their coach departed at 5pm. Then Chris and I drove on to Eastbourne and the party collapsed into the coach for the journey back. Unbeknown to Gerald there was more partying in the evening!
I am so glad that I was able to share the occasion with friends and family..it was touch and go as to whether I would be ‘free’ to travel.
Home now and I am grateful to Teresa and Melissa for all their hard work and to Andrew and Nancy for their great hospitality. Altogether a lovely weekend, though I have to confess to feeling more than a little exhausted this evening!

Post 93: February 1st

Today I receive a letter from the hospital confirming next week’s date for the embolisation and asking me to ring the direct dial number at the top of the letter to confirm acceptance. Why am I not surprised there is no telephone number of any description to be seen on the letter? I have to ring directory enquiries and take the scenic route…Grrrrrrrrr.
Frustrations are increasing. The Canon printer which is normally excellent, does not accept the new ink cartridge. The light remains obstinately unlit despite it being a genuine Canon cartridge and inserted correctly. When I telephone Cannon they tell me that once they see confirmation of purchase they will send me a new printer head. I search high and low for the receipt and even find the receipt for our previous printer stored in the file as it should be; but the one I want has vanished. Now I have to order the new print head (if that really is the fault) and ask for a refund once I can resurrect the receipt. Normally I put these things in one place, but we bought the printer soon after I came out of hospital and I think I must have had failing brain syndrome. I have rung PC World who will duplicate the receipt for me if they can trace it….. I shouldn’t let these things get me down. In the light of all else it is a relatively minor irritation (the print head isn’t all that expensive) and I try desperately not to dwell on it. Not easy!
The electrician is off sick today so the kitchen will not be properly ready until Monday. At least we can now use the sink and the washing machine.