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.

Post 37: 24th November

I finally rang County Hall yesterday to find out what happens with my pay. I will be on half pay from January, so I need to claim incapacity benefit. I have been putting this off, as the thought of filling in more forms is a daunting prospect. Still, the deed is done, and hopefully my brain will be able to absorb the contents of the booklet that will help me understand exactly what I am supposed to do.
This should be a good week. I am free of tablets and have to regain some strength ready for next Friday’s drug bombardment. Yesterday went really smoothly; they inserted the drip after only one failed attempt and I was away by midday.

Post 36: 16th November

When I see Simone at the Chemo suite this week, she tells me she had to buy a new pair of shoes following last Friday’s debacle. It wasn’t until Anita pointed out the trail of blood she was walking across the floor that she realised I had bled profusely into the old pair! I am not sure whether to laugh or feel bad. I laugh.
The doctor prescribes another anti-emetic. It is called Domperidone. To me it sounds more like champagne . Imagine my disappointment when I discover it tastes nothing like it.
It is a better week, though I am still limited outdoors because of the continuing neuropathy and the colder weather. I bury myself in a book.

Post 35: 13th November

It still amazes me that tears come to me fairly easily nowadays. As a child I grew up to believe they were a sign of weakness. Being called ‘waterworks’ or ‘cry-baby’ on a regular basis served only to reinforce such feelings. I learnt very quickly how to suppress tears and deny vulnerability, coating myself with a tough outer shell that was frequently mistaken for coldness and lack of empathy. My outer crust still leads people to believe that I am strong, but those closest to me know my soft centre, small, anxious and afraid.
The counselling course I embarked on in the mid 90s helped me to uncover some blind spots and I gradually came to realise that it was unhealthy to cover up ones inner feelings all the time, and that everyone needs a few trusted people, friends and family to open up to. This has also helped my empathy with others as I can see that such emotions are reciprocal.

This morning I prepare a couple of hand warming gel pads and cycle the couple of miles to the chemist for the prescription. The warmth makes the neuropathy tolerable. On my return still feeling sick and desperate to drink something that tastes nice I just burst into tears. I sit on the stairs sobbing for about five minutes, feeling really sorry for myself. I discover that fresh grapefruit squeezed into hot water tastes fine, so I make a large mug of that which makes me feel a little better. Kate from the Chemo unit calls and has some sensible suggestions as to what I might try. She tells me I should ring them tomorrow morning if I am still having problems.

Post 34: 12th November

I am having a bad week. The nausea is with me most of the time and I can eat very little. Water tastes like cream; disgusting, but I am so thirsty. I spend the first couple of hours of the day in bed.
Simone from the Chemo unit rings me to see how I am. She suggests I visit the GP for another anti sickness drug –Cyclizine. I make an appointment for 3.30 but Dr P emerges from his room after ten minutes as he has been called out on an emergency. I wait nearly an hour for him to return, by which time I am feeling even more nauseous. He apologises for keeping me waiting and saying very little beyond that, he writes a prescription for the suggested drug. I wander home across the green feeling too ill to go to the chemist. Chris is exhausted when he gets home and all the neighbours are out, so it has to wait until tomorrow.

Post 33:11th November

I feel so awful on Sunday that I fall into bed at 5.30 pm feeling nauseous. An hour later I wake to eat a piece of toast and to take the dreaded Chemo pills which can only be swallowed after food. I then sleep on. My dreams are really vivid. Vignettes of work play over in my mind. In each scene I am unable to do the job properly; they have changed the keyboard so I can’t log onto my computer. I feel remote from what is going on, and can’t keep up with it all.
It is a relief to finally wake up. I have slept for nearly twelve hours.

Post 32: 9th November

Chris tells me I should visualise myself as a chrysalis. I am undergoing a metamorphosis. The skin rash, the nausea, are all part of the process. When the treatment is finished I will materialise transformed. I think it is a lovely analogy and I hope he is right. I feel more like the human host in 'Alien'. What will emerge?
Had my bloods taken yesterday at the hospital. Dr. B says they were fine so the next lot of Chemo can go ahead as planned tomorrow. He tells me they have found six liver tumours not five, but that the sixth should be operable. He is prescribing some vitamin B6 for the soreness in my fingertips.
I ask Chris if he thinks the treatments will vary during the holiday period. Chris thinks they will probably add Christmas pudding to the infusion. That wasn’t exactly what I had in mind.
When I arrive for Chemo today Minna tells me they have the CEA result, which is the Cancer marker. It has gone down from 911 to 340, which shows something is working. My relief is palpable.
They use a larger needle in my vein to reduce the pain of the Oxaliplatin. Feels like a bayonet to me. Most of the day I am OK but just when I am due to come home I feel suddenly really sick and Anita who is waiting for me calls the nurse. I vomit a few times and feel wretched. They don’t understand why I have been affected like this. The first anti-emetic doesn’t work too well and I have to wait another half an hour. Then they realise that one of the nurses forgot to give me the anti sickness medication with the Oxali, so they try me with tablets. I bring them straight back up. At the same time my arm pumps blood profusely all over the floor where they took out the needle. The nurses are running around with bowls and swabs like the Keystone cops. The floor looks like the aftermath of an Inspector Morse Murder.
An hour later they finally let me out after yet another injection this time in my left arm. Anita has been waiting patiently to drive me home. She is a Saint. She brings several sick bowls and wipes from the hospital and tells me not to worry if I throw up in the car. Luckily I don’t. Not a great day. A couple of hours later I manage one slice of dry toast and go to bed.
I have a bad night, feeling sick on and off. This morning I can’t even put my socks on my fingers are so prickly and painful. I burst into tears and feel sorry for myself. I have some breakfast of toast and pills but the change of temperature from bed triggers such severe neuropathy that I shelve my plans to go for a walk and stay in bed instead. It is not like me to give in like this. I have crossed a border this year from health into sickness. I am not enjoying the trip.

Post 31: 5th November

My mouth and hands are sore and I feel nauseous despite being off the tablets this week. I hear on the news this morning that there is widespread fog on the Mainland. I could do with some fog to conceal my face from the general public. My skin continues to erupt into unsightly spots lumps and red marks. It is becoming depressing even to look in the mirror. I think back to the infamous smogs of my childhood.

The Pea-Souper
As a child I would often see buses travelling at crawling speed, with volunteers holding torches in front of them to light their way. Old people and small babies had to be kept at home, because their lungs couldn’t breathe in the air very safely.
To get to school I walk from Deanery Road, along Water Lane and then up to Maryland Point. My large classroom has small wooden desks. Each desk has its own inkwell. Behind the teacher’s desk stands the large blackboard, which has thin lines, embossed upon it for demonstrating handwriting. An open fire surrounded by a large mesh fireguard nestles in the corner of the room. When my teacher has a cold she tosses her used tissues into the fire and I love to watch them curl and shrivel, as they are slowly devoured by the bold yellow flames. The acrid smell lingers unpleasantly. From time to time, particularly in November, we have thick fogs known as ‘pea-soupers’.
One November afternoon in 1958 when I am seven years old, we are surprised when my teacher says that we all have to go to the assembly hall. It is now so foggy that when we look out of the windows the playground has disappeared, and we can’t see the school gates.
The Headmaster’s voice sounds serious.
“School will close this afternoon. There is a dangerous pea-souper. No-one is allowed to go home until they are collected.” I feel excited at the prospect of disappearing into the depths of the murk. What an adventure!
Parents begin arriving one by one to pick up their children. After about ten minutes I see Mum. She is wearing a thick hairy dark green coat. I am looking forward to walking home with her.
“Now I want you to be a good girl. Put this scarf round your face and hold my hand tightly. You have to keep this on so that you don’t breathe in the fumes.”
We step out into an eerie silent world of swirling yellow mist, so thick the smoky bitterness coats your tongue. We start walking slowly towards Water Lane.
“We’ll have to be really careful crossing the main road”. Mum’s voice is strangely muffled behind her scarf.
“Now put one foot in front of the other, but be careful of the kerb.” I look down,
“But Mummy I can’t see my feet!”
We tread gingerly down into the road and try to cross in a straight line. We have no way of knowing where the road finishes, or even if we are still walking in the right direction.
“Ok, now hold my arm, and we will take really tiny steps, try to feel the kerb with your feet so you don’t trip”. Mum’s voice is reassuring as ever and I have every confidence that we will be safe. It’s exhilarating to cover familiar terrain but to experience it so differently using senses beyond sight.
We shuffle along like this for what seems like ages. We cross a road, but struggle to find the other side, losing our sense of direction completely.
“Ouch! What’s that?” We have bumped into a lamppost, but didn’t see it.
“Look Mummy, we are home”. I peer at the roadsign and trace the large embossed black letters with my finger. “Deanery Road.”
“Now we just need to find the house!”
It is both weird and thrilling being out in that fog, knowing we are so close to our house, but not being able to see it.

Post 30: 2nd November

Another weekly dose of trial drug (Cetuximab) in the Chemo suite today.
Anita, my escort from the Wessex Cancer Trust is proving to be a reliable and interesting companion. She and I solve the world’s problems on the way into Newport. I’m not sure anyone notices. I have my watch back at last. That seems more important to me right now.
Today there are difficulties with the canula like last week. The first insertion causes extreme inflammation and has to be removed. It sets the process back by an hour. Next Thursday I go for the pre Chemo blood test and check up with Dr B. Friday's treatment will be the second of eight all day sessions . In the interim I have a week free of tablets and intend to make the most of it!

Post 29: November 1st

The ‘Freighter Blight’ has really taken hold to the point where I have to get checked out at the hospital to see if they can give me some cream for the rash. I feel tired today at the least exertion, so do very little in the way of activities.
It was Halloween last night and I was not in the mood to open the door to ‘trick–or-treaters’, so I ignored them in curmudgeonly fashion. I could probably have gone trick or treating without any disguise but I didn’t want to scare the neighbours.
Minna sees me at the hospital to look at my skin. The bubble is burst. She is not connected with Count Dracula at all, but is from Finland.
After examining my unsightly rash Dr B and his registrar decide between them what lotion to prescribe. I ask about the next batch of scans due around January. I don’t want to wait three weeks for them!
“Oh yes,” says DR B. “You will have to keep bringing that to our attention.” It is so difficult to have confidence in a team that is so disorganised and has such little communication between colleagues.
I take the prescription to pharmacy, where they make an art form of keeping folks waiting with a system of tickets and extended periods of ceiling watching. I am told it will be at least half an hour before I receive the medication yet there are only two people in front of me. I have now spent an hour at St Mary’s and it is an hour too long. I think hospitals are designed to be frustrating. As I watch the impatient faces around me a man on crutches asks the way to the fracture clinic. I envy him. Two months or so in plaster and he will probably make a full recovery.
On my way home I pop into the supermarket. The checkout girl is chatty.
“And how are you today?” Despite her apparent enthusiasm I know I can’t answer truthfully or the poor lass would wish she’d never asked. Then she launches into grade one monologue mode. I find out how tired she is (mate’s 18th birthday party ‘til late) and all about which programmes won the National awards last night on TV at the Royal Albert Hall. I am bombarded with information on soaps which I’ve never seen. I try to smile and nod in the right places despite urgently wanting her to be quiet. In the end I tell her I saw Coronation Street when it was in black and white. I feel old.

Post 28: 28th October

The clocks went back last night. Now that I am not working it doesn’t seem important to me any more. I had another odd dream. I was in a house where builders were embarking on a major refurbishment. There were lots of loose floorboards and I was warned to tread extremely carefully as they were being replaced. I felt optimistic in the dream as though the disruption and chaos would be worth it in the longer term. I hope it is my subconscious looking positively at the Cancer treatment. I know that others see me as a very strong person who will be able to face this unknown bravely. I am not convinced they are right.

Post 27: 22nd October

Another strange dream last night. I was trying to travel somewhere with a group of people but each time we came to the end of the road there was an ambush waiting. Soldiers with guns. I had to move fast in the opposite direction. This repeated itself several times. I kept forgetting about the troops and fell into the trap time and again. It was frustrating. Thinking about it I wondered if it was my difficulty in facing the side effects of the treatment. I keep trying to pursue my life, but come across these barriers to normal functioning.
Yesterday I tried going out on the bike. Despite the protection of gloves the pins and needles became intense. I stopped at the shop to buy a few things but couldn’t move my hands even to lock up the bike. In the supermarket it was agony just putting things into the basket. Then I came to the check out. I felt clumsy as I shakily attempted to extract a £10 note from a purse that was evading my grip. For someone who has always looked young for her age it is so difficult to feel old and doddery.
This is the lady who was told off for going up the staff staircase in her first job. On a day trip with the family to the fairground I was warned: “No, you can’t use the go-kart track. You have to be twelve years old.” I was thirty-four at the time and when I took off my hood and showed the cashier my wedding ring he was duly admonished! The children thought it hilarious.
When Rachel was about three, a salesman knocked on my door. I opened it to be greeted by the question: “Is your Mummy in?” I was so embarrassed I didn’t have the wherewithal to respond with a nonchalant: “No but my daughter is!” so I just closed the door.
Daniel has come to stay for a few days as he has half term. I watch him make a pumpkin pie in the kitchen. I have to go upstairs to lie down for half an hour as I feel nauseous, but fortunately by teatime I am recovered enough to try some.
Dan really lifts my spirits and makes me laugh. When I am with him it is hard to believe that there is anything wrong with me.

This morning Dan is returning to Leeds. I wake up with the predicted skin rash. It burns and itches. I look in the mirror at the unsightly eruptions in my normally clear skin. Will it reach the point where I need a paper bag over my head before I can leave the house? I resemble a Star Trek alien who has contracted Freighter Blight. Maybe tomorrow I will waken with the notorious forehead ridges and speaking fluent Klingon.
Hopefully I will see Dan again at Christmas, but what state will I be in by then? Can I really sustain this for six months?
Today I go for my second session with the trial drug. I have a chat with the research nurse, Minna, who reminds me of a vampire victim. She has a Transylvanian accent and looks terribly pale. Wasn’t Minna Harkness one of Dracula’s unfortunates?
She tells me that the neuropathy should not last for much more than a week and if it is still bad in a fortnight’s time they will lower the Oxaliplatin dosage. That is a relief. It is really important for me to maintain my every day activities. I am at the hospital longer than planned as my veins are initially in rebellious mode.
I am mortified when I get home. Not over the Chemo, or the Cancer. I have left my watch on the bedside table. Bizarre.

Post 26: 18th October

It creeps closer. I am counting the days. In the night I dream I am alone in a dinghy, which suddenly propels itself away from the shore over shallow water full of rocks and dangerous obstacles. I feel totally helpless. I am unable to steer it, and can only move slightly here and there to stop the boat puncturing. I relate the dream to Chris. We can both see that it is a metaphor for my impending treatment.
This evening Chris and I watch the DVD on the Chemo tablets. It doesn’t have the excitement of Star Trek and the only dynamic bit is when the presenter rises from the garden chair and walks past a water fountain. If it is supposed to help me feel calm and serene it is a let down. It is more reminiscent of a mind-numbingly dull late night Open University lecture from the 80s.
My bag is packed in readiness. Tomorrow is the big day. I’ve to be there at 10.30. It is out of my hands now.

The driver organised by the local Cancer Trust comes to the house a little early. When we arrive at the Chemo suite at 10.20am it looks more like a beauty parlour than a hospital! I half expect to see a nail bar in the corner. The tasteful colour scheme is a vivid combination of green yellow and purple. Artistically designed glass mobiles are suspended from the ceiling.
The nurse comes round with the pre-med, which is a mix of paracetamol steroid and anti sickness drug. The canula goes in easily following the application of a warming pad. For the first two hours I receive an infusion of the trial anti body. They take observations every 15 minutes initially. I am not worried about this drug, as I know the side effects shouldn’t kick in too dramatically.
Not until late afternoon do they give me the dreaded Oxaliplatin. My arm aches a little for an hour and a half, but in the last thirty minutes it feels as though acid is being fed into my vein. My arm is excruciatingly painful. My nerves are now hypersensitive to cold and I can’t touch even the zip on my trousers without this uncomfortable tingling sensation, like an electric shock.
They finally release me at 5.30. At home I have to rethink the simplest everyday activities like going to the fridge or turning on a tap. Putting on a glove first helps, but I feel like an alien creature.
I remember once opening the fridge door and having a terrible shock. In the door rack I saw six dark green hairy eggs and immediately thought we’d been invaded by creatures from outer space. It was simply that my first husband Paul, had thought the egg rack a great place to store kiwi fruit. Sometimes my imagination goes to overdrive.
Some of the side effects of the treatment are brutally evident to me now, but at least I have conquered my fear. I know what it is I am facing.

Post 25: 15th October

Today I have the appointment in the Chemo unit, which prepares me for Friday when I must expect to spend the whole day with them.
The nurse leads us into a private office and we sit at a large wooden table. First I have to answer questions about my current state of health to compare in a few weeks time. The questions are a clear indicator of what I am to expect.
Do I have mouth ulcers/conjunctivitis/eczema/breathing problems/diarrhoea/nausea/vomiting? The nurse tells us when to call an ambulance. It is daunting. I may experience a crushing pain in my chest or tightness in my throat triggered by cold, that stops me breathing. If I have the beginnings of an infection I am to notify them immediately.
The nurse warns me about other symptoms I can’t ignore. My hands and feet could swell which might precede all the skin peeling off; highly dangerous.. If I was scared before, it’s now right off the scale. I am entering new territory and I have no map.

Post 24: 14th October

Diary14th October
Looking out of the window this morning I see a break in the successive days of grey gloom. The sun is shining in a vivid blue sky. I am motivated to try a longer walk than usual, so Chris and I make our way along the marshes towards Bembridge. From there we continue along the coastline heading for the lifeboat station. The views are stunning.
A few dog walkers roam the beach but it is otherwise calm and undisturbed. Waves chase each other in formation, coming to shore sideways like green combs through curly grey hair. The sunshine is watery but warm. As we walk along by the sea our feet sink deeply into the damp sand. It feels as though we are trudging through a giant marshmallow. Occasionally we must scrabble over rocks and groins to avoid the tide. I enjoy each moment, savouring the smells sights and sounds. We chatter as we walk, and the topic of male friends comes up. I tell him some of the stories I remember from my student days.

Malcolm was tall, gangly with sticky out ears, and he absolutely adored me. At first I was flattered to be the object of such attention, but gradually the novelty wore off. I didn’t mind his looks, but he was so serious it didn’t suit my personality at all. He would moon over me endlessly, telling me how much he loved me. I just couldn’t reciprocate. After a few weeks I was desperate to break it off, but didn’t quite know how. One evening at my house he was sitting in the front room holding my hand and suddenly said:
“You know I love you so much if you leave me I will kill myself” Bearing in mind I was barely 15, I really couldn’t handle the drama. I wasn’t sure what to do. We were moving from Stratford to Barkingside, so I just didn’t give him the new address or indeed tell him I was leaving the area. I felt bad about it afterwards, but it seemed the only way to manage the situation. I often wonder how he reacted when he found out!
Mum and Dad were very protective of me as far as boys were concerned, so I had all the usual warnings. During my University year in Germany I had my share of boyfriends but what I vividly remember was an arrangement I wanted to make with a fellow student with whom I was not romantically involved. I was due home for the summer break and one of the Theology students who had a girlfriend in Scotland was making the trip to England in his car. He suggested a car share, and I was delighted. It was a cheap way for me to return to the UK. I rang Mum and told her.
“Oh no, you can’t possibly share a car with a male student. You hardly know him. He could rape you”.
At this point I started laughing.
“No Mum, you don’t understand. He has a girlfriend. He is not remotely interested in me. Besides he is 6ft 4ins and like a beanpole. He really isn’t my type at all. He is studying the Bible. His mind is on other things I promise you.”
Mum was still worried and I could hear Dad chuntering in the background:
“No absolutely not. Very dangerous”. I could visualise his disapproving pout and shake of the head.
Eventually, convinced that Theo really did have a girlfriend in Scotland, they reluctantly agreed to my making the journey on the understanding that Theo would spend one night at our house before making his way on to Scotland.
We arrived as arranged and Dad opened the door. I saw his eyes move from Theo’s size twelve feet, up his long thin body to his thick black-rimmed glasses and acne-pitted face. Dad moved quickly into the lounge hiding his enormous grin in a handkerchief and pretending to blow his nose. It was probably relief that my description had been so accurate. Theo spoke not a word of English so that evening at dinner I was translating from English into German for Theo, and back again for Mum and Dad. Half way through the meal Mum looked at me blankly. I realised I’d unwittingly spoken to her in German!
I think my parents trusted my judgement a little more after that episode.

Post 23: Thursday October 11th

Today I have a shock. Going into the hospital to see Dr B seemed straightforward. I had the routine blood test first and was expecting only to discuss the trial drug and whether or not I wanted to be considered for it. Then the bombshell:
“I do apologise. I mis-spelt your name and as a result haven’t had a chance to discuss your recent detailed scans with the liver surgeons. The tumours may not be operable, in which case we are speaking only of palliative care. I should have an answer for you in about half an hour, if you’d like to come back then.”
Chris and I go for a cup of tea. I am numb with shock. Do I prepare myself to die? Do I insist on a second opinion…what the hell do I do?

In the café I go through the motions of drinking. It is like seeing the world through distorted glasses. Everything feels weird, different as though I am detached. How do I deal with this? Chris can’t speak. His eyes say it all.
We return in silence. We wait no more than five minutes and are taken into one of the side rooms.
“They have decided that you are borderline operable. One of the tumours is close to a crucial blood vessel, which means that it could be dangerous to operate. We are hoping the Chemo will shrink it down sufficiently.”
I ask him what my statistical chances are. They are no higher than 40-50%. On that basis I opt to be part of the trial drug. It means weekly hospital visits skin rashes and acne. I feel there is little alternative. The research nurse explains that only fifty percent of trial patients receive the drug, though everyone accepted is carefully monitored. She promises to ring later and let me know the outcome.
When we get home there is an answer phone message. I am to have the new drug starting next week.

Post 22: 9th October

As the days lead up to the first Chemo session I feel like the condemned prisoner enjoying the last few meals. I feel physically much stronger now, and am loving the freedom of relaxed days, yet the thought of what is to come looms threateningly.
I speak to Jonathan, Rachel's husband, on the phone about the trial drug. He has been wonderful through this and gives me sound advice. He is a doctor, and has spoken to colleagues about the cancer. He suggests that if my chances are more than 80% it wouldn’t be worth having the additional drug. If much lower, then I should go for it if that is what I want. I really appreciate his support.
I have booked a hypnotherapy session on Friday and am hoping it will put me in the right frame of mind. I also have an acupuncture appointment following the first Chemo. I hope I will be well enough to attend. I still struggle to find meaning in what is happening to me. I don’t like the thought of being dependant on the hospital for my survival. It sits really uncomfortably with me and throws up difficult memories.

Post 21: 5th October

On Sunday Chris and I cycle to the pub for lunch. I am cautious when I get on my bike. I feel like a novice once more. I wait at all the junctions even if the cars are quite a distance; I don’t want to make any sudden movements. Though we pedal no more than four miles in all it is quite an effort for me. We ride along the coast road to the sound of rigging slapping against the boat masts. In the wind the sound is reminiscent of dissonant church bells. It is good to feel the breeze in my hair and to breathe in the salt air. I am so grateful I can do this. I dread the onset of treatment, as I know that this will curtail such activity. I try to think positively about it. Some days I manage, but it is difficult to sustain full time.

Post 20: 4th October

Today I see the cancer specialist Dr B. He asks me if I have had the scans. I wonder why he doesn’t already know and it hardly fills me with confidence. He disappears for several minutes to make some phone calls. When he returns he shares the findings with us both. The detailed scans have highlighted five liver tumours. They will give me twelve weeks of treatment before taking more scans. If the tumours have shrunk then they will operate before giving me another three-month course of Chemo. He tells me that he will book me a Chemo appointment in two weeks.
He introduces me to the research nurse who is co-ordinating the trial. I have a week to decide if I want to go ahead. Chris tries to persuade me to volunteer. I am unsure whether to subject my body to even more chemicals. We take away the leaflets to read.
We go and look at the Chemo suite. It is in a remote part of the hospital, on an upper level past long ceiling pipes and strange locked cupboards. We go up in a lift that is more suited to transit than people. The suite itself appears out of place in such strange surroundings, but the waiting room is welcoming. The nurse in charge takes us round. Patients are sitting in comfy recliners. I am relieved to see they are not screaming in agony and that they look peaceful. The charge nurse wants to do an initial assessment a few days prior to the commencement of the first session.
Now that treatment is about to start I am getting cold feet. I am loath to be a guinea pig for new treatment as it involves weekly drips and lots more medical interventions. I want to bottle out.
I wake at 3am when I am at my most vulnerable and the realisation hits me like a sledgehammer. The treatment is going to last twice as long as I had expected. I have to face a major operation and then more of the same. When I had Rubella at aged ten, I was in tears: “But Mummy I don’t want spots!” I feel the same about these five tumours.
The interventions may not work. If there were an injection that I could have right now that would take me away from all this I would opt for it. I talk it through with Chris at dawn. He is understanding, but when I go for a morning swim he is already speculating on what he will say to the police when I don’t return.
“Oh she goes for a swim most days when the tide is right. I would have gone with her but I wanted a lie in. She must have got carried out by the tide.” It had crossed his mind that I might deliberately swim out and keep going. We can laugh about it now, but my feelings of hopelessness swamp me like a dark blanket and I struggle to shake them off. I think I need some time to come to terms with all these changes.

Post 19: 3rd October

Today we go to Southampton for the MRI scan. I saw the GP yesterday. The surgery rang and asked me to go in. Dr D, who has been great all through this, will try to help chase up the scan results. I need all the support I can get.
I find out that a woman on one of my favourite website forums and who has battled with cancer for the last five years finally lost. She died. It leaves me feeling scared stiff.
We plan a nice bit of Shopping Therapy in West Key Southampton in the morning and then go on to the hospital. The receptionist is particularly helpful and tells us that there is guest accommodation for Chris on site when I have the liver operation.
One of the volunteers in the MRI reception latches onto Chris follows us into the waiting room and begins describing the catalogue of ailments that have befallen her over the last few years. She makes eye contact with the ceiling, always a bad sign, and her bombardment is unrelenting. I can see the glazed expression on Chris’ face. When I go to the interview room prior to the scan he opts to come with me to escape her clutches.. As we leave the room she goes off to seek out her next victim. It must be sad to be so lonely.
The scan is long and drawn out. It takes an hour. I have to have two injections of dye, but the radiologist fails to insert a canula in my right arm. She then tries my right hand. Neither attempt is successful. The chief radiologist appears out of nowhere and digs around in my left arm, eventually succeeding in penetrating a vein in my wrist. At this point I can’t stop the tears. I have had so many needles; this is just three to many. I have to hold my breath many times for up to 25 seconds on the out breath. It isn’t easy, especially when I just want to cry my eyes out and go home. I am relieved when they finally release me.
When my friends telephone or visit, some just aren’t sure what to say. I sense their discomfort. I’m not sure what to say either.

Post 18: Tuesday 2nd October

The first scan is over. It was in a mobile lorry outside the BUPA hospital in Southampton.
The man who administers the radioactive isotope is friendly and informs me that each injection costs £400, which is why he inserts a canula; he can’t afford to take a risk that the vein might collapse. He tells me he will leave the glucose to go round my body for about twenty-five minutes then he will return. I am surprised when the sliding door opens after only a couple of minutes. He looks at me oddly.
“Can I ask you a personal question?” His tone is tentative and I wonder what on earth he means.
“They have ringed male”
The words mean nothing to me and I ask for an explanation. He shows me the paperwork. Where it says MALE/ FEMALE I am down as the former! I assure him that I am definitely female, and can’t help chuckling.
“I have to ask. We sometimes have transvestites”
I am wearing loose comfortable trousers, dingly dangly earrings, and my name is Linda…should I be worried?
He is clearly relieved that I am not offended. So much so that when he returns after the prerequisite half hour he says:
“Ready when you are sir!”
I have received a letter from an ex-colleague, Linda. She always described herself as mad as a hatter, but she has excelled herself this time. She has sent me some Holy Water from St Winifred’s Well, which apparently cured her dog of liver problems. She writes:
“ Holy water is for everyone. .. Suggest you drink a little, put some on your tummy where your liver is and put some on your forehead for it can relieve stress of the mind by doing that and so help the body. As we live in a free country none of this is compulsory though”
I will of course drink the Holy Water and rub it in as suggested. I will try anything. I doubt her dog was a Catholic but it worked for him….

Post 17: September 27th

It is 6am. I don’t have to be up but pre- dawn my brain switched itself on without warning. I have two scans lined up in Southampton. The first of these tomorrow is a special CT PET scan which involves my being injected with radioactive glucose. I am to starve for six hours tomorrow and have to rest all day today. This is a contrast with my gradual ability to increase my activities over the past couple of weeks now that the pain has receded. I feel frustrated that I am once more housebound, that I have to undergo invasive treatment tomorrow. Because of the contaminant in my system I won’t be allowed near pregnant women or babies but what effect will this have on me? There is an MRI scan next Wednesday followed by a hospital appointment to see the cancer specialist the following day.
Outside autumn is making its presence felt. There is a distinct chill in the Northerly wind. The swimming season is coming to an end soon. Will I be able to take it up again next spring? I struggle to accept the dramatic changes to my lifestyle.

Post 16: September 20th

Ziva is fond of the crocheted elephant I made for her. She doesn't seem to mind that I ran out of wool and had to make the legs brown. Children are so forgiving.

Rachel rings me almost daily. She is struggling to come to terms with my illness and is concerned at the distance between us. The phone calls are a marvellous way for us to keep in contact. Her calls are always entertaining. As we converse about how things are going her asides to Ziva are an eye-opener. “So how’s it going Mum? Hang on! Ziva I don’t think Batsheva likes being sat on like that. Sorry Mum- poor you -no Ziva don’t grab her hand so hard, you’ll pull her fingers off. I’m trying to cook some… Ziva you mustn’t squeeze Batsheva’s neck or she won’t be able breathe”. Clearly Batsheva will have to acquire some infant self-defence skills pretty quickly if she is to survive Ziva’s form of ‘Loving Terrorism’ as described and photographed by her Sabba.

Post 15:September 17th

DIARY 17th September
Levana rang me from Canada yesterday. “Grandma from England I have written you a letter. I love you so much the kisses are all on the back. “ I have her other letters pinned up on the fridge door. She is only five years old and hasn’t quite grasped the separation of words, but what she writes is thrilling to read and brings tears to my eyes.I love my Grandma England I think that you are niceFor my Grandma England I wish you are feeling betterFor my Grandma England I think that you are a lovely Grandma. I hope you do look at this letter.
I love my Grandma. She is a lovely Grandma. I haven’t got
anybody who is as lovely as Grandma.



Levana is very special to me. I had gone to Canada to be there at her birth in 2002. I was due to fly back to the UK on the 2nd of September for work.
When Rachel hadn’t gone into labour by the end of August she was in a flat panic. This was in part due to the fact that she thought she would never give birth, and the foetus would start shrinking back to nothing, and partly that she desperately wanted me to be there to support her.
Though I knew I should feel disappointed that I might miss the birth, I found it impossible to get stressed. Deep down I knew that it would turn out OK.
Rachel was on pins. She saw every discomfort as a sign things were moving. When the phone rang at 2am on the Friday morning she woke with a start. “The phone is ringing. It’s ridiculous o’clock. I must be in labour”. In fact it was a friend who was ringing from abroad and who had forgotten about the time difference!
By the time Rachel did go into labour early on Saturday morning it was just one day away from my having to leave Canada. By Saturday evening Rachel’s pains were strong and rapid so I accompanied her to the hospital where I stayed with her all night. The following morning I saw Levana’s head crowning. I hadn’t witnessed the birth of either of my own two as they were both born by caesarean section. Watching my first granddaughter make her entry into the world was for me a unique miracle. I was even allowed to cut the cord before holding this precious baby in my arms, tears streaming down my face. A wave of emotion overwhelmed me. Twenty minutes later I had to start my journey to the airport. I cried most of the way home.

Post 14: September 10th

They bring forward my postoperative check up by one week. The Doctor recognises me from the hospital. He says he is pleased to see me looking so much better. I tell him about the burning searing pains I get whenever I stand up. He examines me.
“It is probably your bowel caught up in some scar tissue. At the moment the priority is your liver. We have to get that sorted out first, then we can see what we could do to relieve the pain. It may improve by itself.”
I tell him my concerns about the time delay. He says that he will try to bring the scans forward. He encourages me to move as freely as I can in the interim and do what I want, now that we are more than six weeks from the operation.
With some trepidation I go down to the sea for my first swim since the obstruction. I walk into the water, and feel the coldness creep up my body. It is a beautiful sunny day so I just relax into smooth even strokes, head aligned with body in perfect unison as I carve my way through the still water. The enjoyment is immense. There is no pain now my body is supported. The salt feels great against my skin. The whole experience is soothing. I am at one with this element and give thanks that even for just a few more days or weeks I can still do this.

Post 13: September 6th

The Registrar tells me that they will probably operate on my liver following a discussion with the surgeons. This suggests there is a possible cure. The issue is the size of the four liver tumours. To determine whether or not Chemotherapy should be prior to or after the operation they are sending me for two further scans in Southampton. I am to wait two or three weeks for these. I ask if a few more weeks will make any difference to my chances. The registrar shakes his head. I have to play a waiting game now. I am relieved that the Chemo is not to start straight away. At the same time I am worried that this treatment will drag on and on.
There is a trial drug not available on the NHS. If I agree to be part of the trial, then I have access to this possible cancer shrinking drug as well as Chemo. One of the side effects is a skin rash akin to acne. It will affect my looks. I have never been particularly vain, but am not sure that I want to be transported back to some of the seedier sides of being an adolescent. I struggled enough at the time.

Lamb dressed as Mutton
Age is a privilege. You can dress as you want, wear your hair short or long at will, and for me at least the best bit is just being comfortable. At age 13 life was not so simple. There was overwhelming pressure to conform.
I was a bit of a Tom Boy. I couldn’t be bothered with girlie stuff and just wanted to have fun, run about, and be a kid. It took some courage to be like that and avoid the lifestyle adopted by my friends; they liked ‘dressing up’ in pretty frocks, but for me it was shorts and a T-shirt in summer, slacks and jumpers in winter. One day we decided to go and see an X rated film ‘Curse of the Mummy’s Tomb’ at the Rex. It was supposed to be terrifying. My friends scrutinised my cardigan and slacks.
“Oh Linda!” they despaired… “You look about ten! Right, we’re gonna make you look sixteen. It’s only the local flea- pit. It’s so dark and dingy in there they won’t look that closely…ready?” I grudgingly accepted the invitation to dress up.
The transformation took about half an hour. Lynne held the disgustingly red lipstick and tried to apply it to my unwilling lips: “Come on, keep still it won’t take a minute”
“But it tastes foul”.
“Don’t make a fuss now, just purse your lips. Good. Jessica, have you got the suspender belt?”
Jessica passed across the most clumsily uncomfortable piece of clothing I have ever put on. The clips bit into my thighs, the stockings imprisoned my legs.
“Stop scratching like that!” snapped Jessica.
“But they are so itchy….can’t I just wear socks?” I protested weakly. They ignored me. Grudgingly I squeezed myself into the tight skirt and slipped on the high heels that pinched my toes. To add to these indignities, Lynne started backcombing my hair and as I squirmed she sprayed on a lacquer, which felt like a glue fixative and smelt even worse. It was utter misery.
“Lets have a look at you then?”
I walked up and down awkwardly.
“Hmm. You’ll do I suppose.”
So it was, that dolled up to the nines but still looking like a ten year old with lipstick, I passed the scrutiny of the lady at the desk, who appeared mildly suspicious but not particularly bothered.
I don’t remember much about the film. The music was creepy, the Mummy of the centuries dead prince less so, as he rose unconvincingly from his sarcophagus and began robotically patrolling his new London surroundings. I knew just how he felt.
The bit I remember most vividly was spending the whole film picking at a thread on the knee of my stocking and ending up with a satisfying hole through which at least my kneecap found freedom.
I look at myself in the mirror today. My hair is cropped; I wear a comfy pair of cargo trousers with a casual shirt. The lady at the Rex, if it still existed would let me in just as I am. The freedom to be me is a joy.

Post 12: September 4th

My Grandchildren have been here for a week. I’ve held my third Granddaughter Batsheva for the first time. She is just three months old. Her beautiful dark green eyes gazed trustingly into mine as she laughed and gurgled on my lap. Magic.
The children enjoyed the beach. I indulged them with a couple of wet suits so the English summer wasn’t too cool for their bodies. Used to swimming pools they both loved the dynamism of the foaming waves and there was much shrieking and laughter, some of it from me.
They all left today and the house seems eerily quiet. I keep finding bits of fuzzy hair, wobbly stick-on eyeballs and sequins, detritus from the craft kits Levana opened on her birthday. Slowly I collect up the toys and replace them in the trunk.
Despite a lot of physical pain I have felt so much better having the children around. They refresh, inspire and invigorate. If a little exhaustion is mixed in I have no complaints. Rachel has gone to a lot of trouble to make Levana a beautiful birthday cake with a carefully crafted number five in white royal icing with sprinkles. Levana’s initial reaction: “But Mummy, Levana doesn’t begin with an ‘S”.
The children interpret their worlds differently. We eat leeks; two-year-old Ziva eats ‘lakes’. We take a wrap for our falafel; she wants another ‘flapper’. We like poetry, she enjoys ‘poem trees’. Levana effuses over the ‘talkie walkie’ that they use at school.

I reminisce on Daniel and Rachel’s early language. He loved the ‘sea girls’ at the beach, and ‘roast beast’ for Sunday lunch. He would often want to know if the door was on the ‘hatch’. I didn’t have the heart to correct him. Rachel was confused with the ‘ck’ and ‘t’ sounds. She would ask me to undo the ‘buttle’ on her shoe, and would carry the milk ‘bockle’ to the front door.
As a family we have discussed the harsh reality of the worst scenario, and they are prepared, though we are now all believing that I will survive this. I have to. I feel rejuvenated and I know now that I need to live on. I cannot allow this disease to take over.