Post 67: December 31st

Well I have finally come across modern terminology that Dan has never heard of. I receive an email from a French website I contacted addressing me as an ‘Internaut’. What a wonderful word; a cross between an internet user and an astronaut or cybernaut!
Lots of people are thinking about 2007 and looking to the future. This year has been one of the most difficult of my life to date. I know that I still have a very long way to go before I can return to any sort of ‘normality’. I am hospital and treatment dependent. It restricts how far and when I can travel, and how much I can accomplish in a day. That has been a monumental adjustment. I am not sure if I will ever feel comfortable with all this, and just manage from day to day. It has been terrific to have the love, support and friendship of so many of you to help me through. Without that I may well have stumbled at the first hurdle. Thanks for your prayers, positive thoughts and messages during 2007. If one good thing has come out of this, it is simply that I never realised just how many good friends I had. I shan’t make that mistake again. Some more pictures of our trip yesterday. Happy 2008 to you all.

Post 66: December 30th

A very frightening dream again last night. I have to make a long arduous trip several times to complete a really important task. Each journey involves traveling through a small enclosed and very dark tunnel. I don’t mind reaching the destination and am relieved, but I dread going through the tunnel. It makes me feel claustrophobic and frightened. It encloses me to the point where I can hardly breathe. We move through it on some kind of train, really slowly and I feel as if the walls are shutting me in. I have a strong urge to get away. I know that I can’t reach the destination without going through the tunnel. The meaning of the dream is immediately obvious to me when I wake up. The journey represents my Chemo treatments. Though I am reasonably confident of the end result the process is a nightmare.
Daniel drives us into Ryde and we take him out for his ‘birthday’ lunch albeit a few days late. We have a walk around the harbour first and then go on to an authentic Northern Italian restaurant, Michelangelo. The food is delicious..we share starters and desert, but manage a main course each. I try the Gnocchi Pomadoro, which is lovely, Chris goes for a chicken dish and Dan has a Giovanni Pizza.

Post 64: December 29th

My hands are not quite so painful today. Eight days on before I notice even a slight improvement.
Chris has been observing Dan’s technological wizardry, and has balked at the post.
I quote:
Chris:I think I’d like to return to papyrus and pencil.
Me: I don’t think they had pencils then.
Dan: No it was far too advanced a technology.
Dan fiddles around on my computer and manages to acquire a voice to read my emails for times when I am too tired to open my eyes. I can’t imagine I will ever need this facility but like it or not the disembodied Steven Hawking computer voice reads them out for me in a phoney American robotic accent. Very strange.
Son’s are a great species.
My multi talented superstar sitting on the new couch...

Post 63: December 28th

It is Dan’s birthday today and we have our traditional celebratory breakfast where he opens presents and cards. While he munches through lovingly prepared toast and marmalade he has to tolerate my rendering of the birthday song which could be in any key with considerable variations depending on how well my voice holds up.
Normally we go shopping together to Portsmouth or Southampton, but yesterday we went to Newport which was easier for me. It was a pleasant change to be driven. As usual we passed the time with Dan setting me mental challenges. How many songs could I think of where the singer has murdered someone in the words of the song? Well of course I couldn’t think of any without considerable prompts but had a good laugh trying as Dan set down his stringent rules that seemed to change by the minute. I managed to buy an internet radio, which means I can now tune into LBC at night, which I love. Dan was a superstar and set it all up for me. I like the end result but am always technophobic about the installation!
This morning we went to the Chemo suite together for the anti body drug and Dan kept me entertained by dragging me kicking and screaming into the technological world of mobile phones as I acquainted myself with my new one. I can now text successfully…it’s only taken three years.
The session went well, though they had to use my left hand; luckily Daniel served as a useful substitute for my all singing all dancing left arm that was indisposed for the duration. It was great to have his company and the time flew by.
I speak to Rachel on the phone and am entertained by today’s asides which consist of such gems as: “Batsheva’s going into the cupboard!” and “ No we don’t have chocolate for breakfast”.

Dan took some photos so you can see how bright and modern the Chemo suite is.

Post 62: 26th December

Today we try an even longer walk towards the Lifeboat station at Bembridge. We stop at the Warner’s Hotel for a drink before wending our way back home. It is a much nicer day with blue sky, sunshine and unseasonably mild air; that makes it easier for me and the hand-warmers are only needed for the first half an hour. We have a late lunch when we get back, after which we play charades and more Wii games. Dan and I are becoming a formidable pair in the boxing and tennis championships. I fare less well on the Wii fitness programme and am ashamed when my virtual fitness age turns out to be 70!

Post 61: 25th December

Now Dan tells me that on Facebook I can throw sheep at people or give them zombie bites. I really don’t feel I belong in this strange world…
We have had lots of fun today playing silly games. On the way back from our walk we made up limericks, one line each. We played charades, Humbug (which is a humming game to guess the tune), followed by virtual Tennis, Baseball and various other sports games on Dan’s ‘Wii’.

The walk across the Duver was very wet but the temperatures were mild enough. The only signs of a ‘white Christmas’ were the foaming waves.
It was all hands to the deck when it came to lunch; mainly because I can’t touch anything from the fridge. It’s been a good day, marred only by my painful hands and the fact that Dan has been feeling poorly with a sore throat and a mild temperature. I am hoping not to catch the bugs.

Post 60: 24th December

My incapacity benefit telephone statement has arrived. I checked it over and added the dates of each of the five hospital admissions. The claim will be back dated if it is late, which is useful to know. (Thanks Carol!).
This is the worst reaction to treatment I have had so far. My arm is so painful and tender I can hardly move it. The pins and needles in my hands and feet make it difficult for me to do even the simplest activities, and I have been unable to venture out for two days.
Dan arrived yesterday, which was lovely and I intend to make the best of the time we have despite the limitations imposed on me by Oxaliplatin. The way I feel at the moment I don’t think I could tolerate another dose, either emotionally or physically so it is a good thing there is a break from it now.
This time, as well as his technological expertise, Dan has brought bags full of chocolate; gifts from his pupils and the staff at the school. He couldn’t possibly manage to eat it by himself, and wondered if Chris would help. Chris was unpacking box after box with a beatific smile on his face. A chocaholic’s heaven. Whilst he did that Dan showed me how to join ‘Facebook’. Paul’s comment-
“Every time Dan comes to visit you, you seem to take an exponential step up the greasy ladder of technology.” Very apt..and yes, when Dan returns to Leeds, I’m afraid I might slip right down the rungs again.

Post 59: 21st December

It is Rachel’s birthday and for the first time ever I didn’t have a chance even to speak to her; I have been stuck at the hospital all day. I hope she has a wonderful time.
This is the last Chemo before the op and the veins in my right arm were not co-operating. The first needle burst the vein wall and fluid leaked into the surrounding tissue. Maria couldn’t then use a larger needle so the drip was painful for two hours. Now my arm feels like a dead weight and is extremely painful. I can’t use it at all. Both Minna and Maria tell me my arm would not tolerate another dose of Oxaliplatin. The effects are cumulative. Good news is my CEA marker is now down to 42.2. For the next few days I will have to grin and bear the side effects.
Shaun, a colleague fom school pops in for a brief visit en route to our neighbours Nigel and Ella. He brings me a Harrod’s Christmas hamper; a gift from the staff. Apparently I was mentioned at the end of term farewell gathering and everyone clapped. I should be able to pop in and visit them in January one the infection risk from the Chemo diminishes.
Dan arrives on Sunday . I really look forward to his visit.

Post 58: 20th December

When I see Dr B today he is once again pleased with my progress. Chemo can go ahead as planned for tomorrow. He tells me that my liver enzymes are raised, showing that there is irritation in the liver, but he would expect that given the tumours. The enzymes are slightly less elevated than they were at the start.
He tells me I will have to decide whether I can cope with four more Chemo sessions after the operation. I don’t have to decide yet, but he knows that sometimes it is too difficult to tolerate. We will have to see how well I recover. Apparently a few years ago they would not have operated at all and there would have been no possibility of a cure. The surgery is more advanced nowadays and they are learning new techniques all the time.
He expects the scans to be in the second week of January and the operation to be early February. Then there will be a month’s recovery before continuing Chemo. Dr B reassures me that the tumours will still be responding to the first bout so there should not be any risk of them growing back in that short space of time. He thinks I am continuing to respond well to treatment. Minna makes a provisional appointment for me to see Dr B again on January 17th, but if the operation and scans are all set I may not need to attend. The surgeons in Southampton may want to see me in advance of the operation.
I wish I could be given more concrete dates; I hate the way everything hangs in the air, but there is nothing more I can do now.

Post 56: 18th December

This morning I get a letter regarding my claim for incapacity benefit.
I am returning the enclosed SSP1 as this on its own cannot be accepted as a claim to Incapacity Benefit.
I am really irritated since I had been told to simply send it in. I telephone the Job Centre Plus and ask for an explanation. A very pleasant man tells me that now all claims are handled on the telephone and he is mystified as to why I was given the wrong information. I spend nearly half an hour on the phone answering a myriad of questions about my job, my illness and any previous claims I might have made. Now I have to wait until he sends me the statement we have completed so that I can sign and return it with the original SSP1. The bouncing back and forth of the identical claim form seems an inordinate waste of time and money. The resultant delay may mean that the claim will not go through before my pay is reduced by half. .
So much for bureaucracy. I am not a happy bunny and could do without the additional stress.
Later I get a call from one of the Macmillan nurses who will come round to see me in early January. I value the extra support.

Post 55: 17th December

Sunday is the cycling club’s Christmas dinner at Appley Manor and I arrange to meet Chris, a colleague from school, for a short brisk cycle ride to hopefully help stimulate an appetite.
It is bitterly cold but I dress warmly with lots of layers. We meet at 11.15 and head towards Ryde, avoiding the sea front where the wind chill is just too unpleasant to tolerate. The ride does me good and though I am a little breathless from the cold, I cope well with the hills. We arrive on time back at the Manor where Chris’ husband Rob has saved us seats.
There is a party atmosphere with elongated balloons like mini sidewinder missiles that we send across from table to table. On one table they gather several balloons together and launch them in a single screeching volley in our direction. Of course we have no option but to retaliate in kind.
Two of the male organisers perform their annual party piece for us . This year they do a novel rendering of “There’s a Hole in my Bucket”. The costumes are interesting. Dreadlocks, faces smeared with blackening and a set of authentic looking cardboard breasts. Trouble is Henry keeps thinking he’s Liza and despite the simplicity of the ‘script’ the two of them mess it up completely. The results are hilarious.
It is great to feel a sense of normality once more and to forget about illness and treatments for a few brief hours. The meal is tasty and I am pleased that I am able to enjoy it. It’s the first social occasion I have been to since July!

Post 54: 16th December

To cheer me up I am having my kitchen redesigned making good use of existing cupboards. We have lived without a dishwasher for the past seven years, but I think the time has come to treat myself. I certainly don’t want to spend what time I have at the kitchen sink! So an exciting prospect for the New Year. They are coming today to discuss finer details. When the man came to measure up a few weeks ago, he had been here twenty minutes and I had shaken his hand before he told us his daughter had an awful throat bug and had been ill for three weeks. He was coming down with it. I fled into another room . After the designer left I gave Chris the anti –bacterial spray and he went round every kitchen surface and even sprayed the glossy brochure! I washed my hands thoroughly and hoped for the best. I am pleased to report I contracted nothing more than a bit of a fright, but luckily no bugs! In my weakened condition it could have set me back weeks.

Post 53: 15th December

A bad night thanks to the steroid. I was awake for hours thinking about the future. Yesterday I met a colleague in the suite. She has had two successive treatments for breast cancer but the tumour has grown back so she has to endure a third cycle with a new drug. Her hair had recovered, but she has now lost it all again. I look at her and I wonder if I could cope with the idea of even more Chemo..I just pray that won’t happen to me, but I can’t help but feel it is all out of my hands and I have to surrender to whatever will be. I can stay positive and believe in a good outcome, but deep down I know nothing is certain. It is a frightening thought.

Post 52: 14th December

Today I took in a tin of biscuits and Christmas Cards for the nurses. They appreciated the fact that I wrote individual messages to each of them.
Cerys tried three times to put a needle in and failed; then Kate had a go. It took over half an hour and my hand is black and blue!
Minna takes a look at my rash and flaky skin and calls the doctor in. They think it is a side effect of the anti-body (Cetuximab) and they write a prescription for more anti biotic lotion plus anti histamine tablets. Minna tells me that my reaction to the drug is a really good sign. It means that more likely than not it is working!
They are planning to schedule the scan for early January (when the treatment has completed full cycle) This means that they will more than likely operate in early February. The next bout of Chemo may well begin in March. I can’t help needing to know what will happen. Control freaks are like that! Clearly the dates are an estimation and subject to some change; we will see. Minna is referring me to the Macmillan cancer nurses for extra support through all this treatment.

Post 51: 13th December

It is difficult for me to do tasks requiring fine motor skills as my fingertips are all splitting at the tips. I have to keep dipping them in aqueous cream and wearing cotton gloves. It is painful, frustrating and uncomfortable.
I discover I am two chemo pills short of completing the cycle tomorrow. I doubt it matters a whole lot since people miss doses all the time for a whole host of reasons. Probably my tumours won’t notice.
Rachel has suggested lanolin for the fingertips. The local pharmacist agrees, but doesn’t stock it. Looks like I will have to use nipple cream; an interesting alternative.

Post 50: 12th December

Rachel and I discuss the problem with the ending to my memoir. She says: Well you can’t just say: “Operation a disaster, docs say I will die tomorrow” because that is contrived. We laugh about it and agree that really there is no conclusive ending, no ‘outcome’. So somewhere I just have to stop writing. Life goes on. I'd have to be clear of cancer for 5 years before they can say I am 'cured'.
Another week on from the treatment and today we brave the supermarket again. This trip is more successful as the neuropathy is far less extreme, though it is quite cold outside. (Nothing compared with Ottawa , but pretty cold for the UK) . Ottawa could save a fortune in meteorological reporting if they adopted Rachel’s delightfully simple descriptions of Canadian winter temperatures. She has honed it to two possibilities: “Minus a bit or minus a lot”. It is plus 6 degrees here. I shouldn’t complain.

Post 49: 11th December

Every day I find copious amounts of skin in my clothing. I warn Chris that he may one morning wake to find an empty outer shell shaped like me, but with nothing inside it.
I have always had really thick wiry hair (the grandchildren call it Grandma’s sharp hair), but now I am noticing bits of scalp showing through. They warned me it was a side effect of Chemo, though I am unlikely to go completely bald with this particular chemical. I must be grateful for that.
The furniture arrived today as promised just before 11am and it is a blessing to relax into a comfy reclining settee rather than perch awkwardly in a garden chair which I’ve been doing for the last month! The delivery men are helpful and unpack it all for me , taking the mess with them. Great! it would have taken me the rest of the day in my current state. I express my gratitude with a tip. At Rachel’s request I send some pictures of the new sofas to her via email. By return she sends me some snaps of the girls with the comment:
Sorry, my kids don't look quite as comfy and luxurious as your couches, but I think you'll agree they are much cuter!

I have to agree. See what you think!

Post 48: 9th December

Ziva's third birthday is coming up and Rachel is having the family round for lunch today in celebration. I am sad to be missing out on the occasion and will telephone in the hope Ziva can muster a bit more than her customary greeting of ‘hi’ before she shyly returns the phone to her Mummy.
When I speak to Ziva she manages an enthusiastic ‘yeh’ in response to each of my questions : Are you having a party today? Will you be eating some cake? Are you excited about opening your presents?
Levana is much more forthcoming. I have been sending the children some pictures I painted with pastels. I ask Levana: “Do you know what a sheep dog is?”. “Yes, it’s a dog that stops the sheep running away” “Clever girl! Well I am sending you a picture I drew of a sheep dog, but it’s not that sort of sheep dog. This one is a dog that looks more like a sheep”. She understands the difference and laughs. I think she will laugh even louder when she sees my effort!
Rachel tells me that Levana was studying one of the cats I drew and was looking a little concerned. Finally she said “Mummy I think there is something wrong with this cat. The head is too big.” So I have been found out by a five year old. Will I ever be able to raise my head in art circles again? Maybe I should stick to writing in future.

Post 47 : 8th December

The steroid injection I had yesterday causes me to wake at 3am. I read for two hours and still can’t fall back to sleep so I give up and get up. Yesterday I had another ‘cook-in’ in the kitchen. I can’t stomach any type of milk at the moment and Rachel suggested I bake a muesli bread. I have some for breakfast and it goes down well. Two hours later I feel nauseous, but that is a common side effect of eating at the moment. There is always a cost!
I have received a Christmas card from the parent of one of the emotionally and behaviourally disturbed teenagers that I was working with intensively for two years. Her comment brings tears to my eyes.
“Thank you for all your support with my daughter over the last three years. All the time in helping her with her social skills and learning skills. Also helping myself and just being a phone call away. Always having the time to listen and offer advice. I hope you are getting better soon.”
This is her daughter’s final year at the school. It is strange to contemplate never working with her again. I have some huge adjustments to make in my life. It is daunting.

Post 46: 7th December

Today I sat next to a dying man in the Chemo suite. He has cancer of the oesophagus. It is incurable and Dr B is giving him Chemo to prolong his life. He has little more than a year to live. His wife is devastated. He also has a five year old granddaughter. They are giving her a book written by Sarah Ferguson entitled “Saying Goodbye to Grandpa”. I felt choked. When I looked at him he had death written in his face. I recognise it. I have seen it before. Now when I look in the mirror at my own face, I see only life. I can’t help wondering if that will change in the near or distant future.
I have made the phone call to Job Centre Plus and my claim for incapacity benefit is winging it’s way to Southampton.

Post 45: 6th December

I am able to chat with Rachel most days and her wonderful suggestions as to how to tolerate this enforced period of sickness really help me stay upbeat. The latest suggestion is that I attempt something that doesn’t require ‘hands’; I should learn another language!
Despite constant application of aqueous cream my skin feels dry and scaly and as though it doesn’t quite belong to me. Spontaneous splits are appearing in my fingers and make me feel once again as though I am being poisoned in some way. Though I try to view the treatment positively it is sometimes hard to achieve even though the markers are down showing it is really worthwhile.
Today I must summon the energy to make those phone calls. Motivation eludes me.

Post 44: 4th December

Well today I took out my frustrations on the company we bought the suite from. Last week they told me it was with the carriers who would phone me to arrange delivery. I tried to contact the carriers but they only had an answer phone. I then rang the online furniture store and told them I was not happy having ordered this on the 24th of September and having been promised delivery at the latest by the end of November. They were apologetic and promised to chase up the carriers who eventually rang me this afternoon. The suite will be delivered on Tuesday morning. Why does it take so much effort for such a simple outcome?
I had a visit from an ex colleague, Ian, who is also on Chemo and awaiting a kidney transplant. It was good to talk through the stresses of coping with debilitation and illness with someone who understands and who has been through it. He also gave me some help with claims and benefits. I will start the ball rolling with some phone calls.
I lack my usual motivation, but luckily some residual determination should do the trick!

Post 43: 3rd December

Though I had made up my mind not to fight the side effects this time and have had two days in pyjamas I wake up this morning feeling like a caged tiger. My hands are still painful each morning for at least two hours before the symptoms abate. I will try and brave the outdoors later, but I am dreading it, as I know that even with hand warmers it will be painful and frustrating. I know I should just take one day at a time and not think about how much more lies ahead but that is a tough call right now. Most days I can count my blessings, but sometimes it just doesn’t work and I collapse into a miserable heap. Poor Chris; he is so supportive but he has a lot on his plate right now putting up with me and these Chemo induced mood swings.
Fortunately it was relative mild outside so the venture into the outdoors was not too daunting and I felt better for having made the effort. I think part of the problem is my expectation of feeling well as opposed to poorly. That makes it difficult to accept these painful physical reactions. My face becomes contorted by the cool air, as a direct result of the Chemo. I have to warm it up to relax the muscles. I refuse to let any of this stop me from going out.

Post 42: 1st December

The pins and needles are back as soon as I get up, and my arm feels like a dead weight where the Oxaliplatin went in. I know what to expect now and decide to stay in the warm, not straying too far from bed. It makes the side effects bearable. Fighting them is pointless and just creates tension and upset which makes me feel worse.
I have a long chat with my son Dan, whom I now nickname my personal Administrator since he sorts out all my ICT glitches and steers me from Luddite tendencies. His sense of humour is a great comfort too. He is planning to come to the Island on the 23rd of December and will stay to early January. I really look forward to it.

POST 41: 30th November

Good news again today. The Cancer marker in yesterday’s blood test is down again by more than half to just over a hundred..
Statistics so far
Date Marker
11.10.07 : 911.7
8.11.07: 381.3
29.11.07: 102.7

I hope the trend continues!
Minna asks me if I will help with more research. It involves another blood test and questionnaire; I don’t hesitate. If I can contribute to a cure then I am happy to help. She explains the next expectation in research, which is to develop an injection of a gene that prevents cancer. Apparently we all have these genes but they are not always strong enough.
The questionnaire looks at ethnic origin. I tick Ashkenazi Jewish; it is more than likely the reason that I have the cancer. There is a genetic predisposition in that group. That is frightening in itself.
There are delays with every one’s medication today. I have to stay on the glucose drip an extra hour. A 77 year old man that I spoke to three weeks ago is told he has to wait another two hours for his Chemo so he sits at my bedside and starts talking to me.
“I have learnt so much from you. I can’t talk to other people because they haven’t a clue where I’m coming from. They say it will be alright, but what to they know?” I find myself listening to his story. He repeats himself several times. Perhaps the ‘normal’ me would be bored by this, but I have all the time in the world and can help him feel better. He has had a full colostomy and finds it embarrassing to talk about to outsiders. He doesn’t want to know how many lesions they found in his liver. He is surprised when I tell him I like to know everything!
So today when I finally leave the hospital after eight hours I know that I have helped someone to feel better. I also realise that compared with him I am one very lucky person!

Post 40: 29th November

I saw Dr B again today. He is really pleased with my progress. He believes the pain I was experiencing a few weeks ago was caused by pressure from one of the tumours. He examines me and is reasonably confident that the tumours are beginning to shrink. He tells me that the liver surgeons will operate as long as the awkward tumour does not increase in size, which is now highly unlikely.
He is chasing up the scans with Southampton to pre-empt any possible delays. My blood test was fine, so Chemo can go ahead as planned tomorrow. I am relieved that things appear to be going smoothly. There are now only two more Chemo sessions before the operation. Then I will have come half way. A milestone indeed.
The emails and comments from those who are reading this blog are coming thick and fast. I want to thank you all for taking the time to read it and respond. Knowing there are people out there interested in what is happening to me helps me so much to keep going. I just wanted an opportunity to express my gratitude. Thanks for bearing with me from the start too. I know some of you have been waiting for a current update. Well I am nearly there!

Post 39: 27th November

A surprise telephone call from the Medical Centre this morning! Dr C wants to come round to see me to find out how things are going. That’s a first! He turns up within ten minutes of the call.
I think he is as shocked at the diagnosis as I am. He had been to see me initially when I was taken ill and had not expected this outcome. He is very understanding and tells me I should call into the surgery if there are any problems. He agrees I shouldn’t be going into work because of the risks of infection; that could set me back weeks in the treatment.
It's embarrassing when I take him into the lounge; the new suite hasn’t arrived yet and we are using garden chairs! It reminds me of the time when Daniel was a few months old; the health visitor came round to our house in Maidenhead but we had no furniture and were living out of suitcases. We had recently returned from South Africa and all our stuff was still at the depot because of a lorry driver’s strike. I was explaining the situation to her when she suddenly looked around the room and announced: “ I remember this place.” She had been our tenant while we were abroad!

Post 38: 26th November

I am feeling so much better this week. There is very little residual nausea and it is wonderful to be able to enjoy food. I am finding that I crave good home-made soup. It is easy to digest and simple to prepare. In response to a resurrection of my appetite I have a ‘soupfest’ this week making different varieties on alternate days. I begin with basil and tomato, move on to leek and lentil, progress from there to fresh pea soup followed by mushroom and the finale; a delicious cauliflower and ginger.
Everyone I speak to on the telephone remarks on my bravery. Though it is encouraging to be viewed in this way, I don’t personally see my attitude as courageous. I have to keep going. The alternative is unthinkable.