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.

Post 11: August 30th

The Grays arrive in a taxi on the 27th. They are exhausted, but happy to be here. I go out to greet them and the pleasure of hugging Rachel after so long defies description.
Levana can’t wait to show me the letters she has written for me and as we walk through the door her insistence becomes increasingly frantic.
“Mummy where are my letters for Grandma. Please find them. I need to give them to her now!” It is excitement and exhaustion speaking.
Interpreting the letters is great fun. They are all written to “Migramainglund” (My Grandma England). I didn’t think it was possible to feel such strong bonds after more than a year of separation.
We have a cuddle and Levana tells me she didn’t like the aeroplane because she was frightened by the “'mergencies”. Ziva is still asleep in her car chair so we put her in the corner of the room. Eventually I have a chance to hold Batsheva in my arms. She is a tiny miracle and I love her instantly.
Each night I read Levana and Ziva bedtime stories. The second night they don’t settle well. I go back upstairs after the story as I can hear Levana sobbing.
“Tell Grandma why you are crying”. The gentleness of my voice soothes the tears immediately, and Levana tells me she wants me to stay with her for a few minutes. I sit a while, but when I leave the room she follows me downstairs. I lead her back to bed and gently explain that she needs to sleep or she won’t enjoy all the fun tomorrow. I promise her that if she complies then I will read her more stories the following night.
Now it is Ziva’s turn. She walks into the lounge with her dolly, telling me: “I don’t want this dolly in bed with me.” I say gently but firmly,
“Fine. Leave it here and go back to bed like a good girl”. I am slightly amazed that she takes herself back upstairs without protest. When I check on them both ten minutes later they are fast asleep. They have tested the waters, and we have no further problems. Rachel is delighted that the girls settle so well and so quickly.
The week passes in a haze of beach trips, blackberry picking, playing, crafts and endless stories. There are some ‘Ziva’ moments, where she just can’t cope with the frustrations of the two year old but Rachel is a brilliant Mum and takes it all in her stride. The house is turned upside down. We are knee deep in mess. Mealtimes are chaotic and noisy. I love every minute and I don’t want it to end.