Post 10: August 26th

Today Chris and I meander across the causeway and down to the sea. It is a pleasure to see the wading birds foraging in the mud for food. We hear the throbbing sound from three swans as they glide high above us, wings beating in unison. Sunlight dances in the rock pools. Darting fish are just visible beneath the water, rippling the surface. Gentle waves lick the shoreline, then pull back leaving the damp sand glistening like sparkles on a Christmas card.
I breathe in the seaside smells and hear the distant sound of children’s voices. It feels almost normal, yet the shadow of the impending treatment hangs over me. The more I read about it, the scarier it feels. I’m told that my resistance to infection will be lowered, and that the chemicals will poison my system. I have thrived on being fit and healthy until now. I resent this intrusion. At the same time I know it is the only way I can survive.
I am thrilled that Rachel Jonathan and the grandchildren are coming to see me tomorrow. I am so relieved that I am finally out of hospital and hope I will be strong enough to make the most of their visit.
It is difficult having only sporadic contact with the little ones, as I worry about bonding with them. I send them small things through the post on a regular basis- stickers, Mr Men books; anything that I think might interest or fascinate them.
I was heartbroken when I missed my annual trip in July and really appreciate the effort Rachel is making to fly here with three small children aged five, two and a half and three months. It is a year since I hugged them. The thought of holding my newest granddaughter in my arms for the first time fills me with joy. I can’t wait.

Post 9: August 22nd

Home again I reflect on my hospital experiences. From time to time when I was well enough to absorb my surroundings I observed some interesting old folk.
Mrs O was a character. She had the same story, every day for each person she encountered. By the time she was discharged I knew the patter by heart “Do you know I am 84 years old? The doctors cured my asthma. They removed 84 years of snot from my nose. The Government says no one should be in pain.”
She was busy scribbling notes to the doctors at all hours of the day or night. She was assertive, cantankerous, demanding and loud, and I knew more about her bogeys than was decent. She was on an efficiency campaign. “Now” she explained to all the nurses that would listen. “The NHS is wasting all its money. Every day an orderly comes to take away our rubbish bags, then another orderly replaces them with a new one. Why can’t the same person do both? I will write to my MP. I was a civil servant you know”….and so it would continue.
Mrs G was another. She was in and out of the hospital like a bouncing ball. She was always moaning and complaining about extreme pain, but I don’t think the docs could find very much wrong with her. She enjoyed the role of sick person. I hate it. I feel like a frightened five year old but the nurses tell me I am very brave.
Night times were the most stressful. The routines never varied. First the staff come round and settle you down for sleep, administering injections, drips, drugs. This is around 10pm. At 11 they rattle round again with the blood pressure machines and thermometers, so if anyone has the misfortune to have fallen asleep they have no chance of staying that way.
The lights are dimmed in the ward, but left glaring just outside in the hallway. Then the noises begin. Initially it sounds like coal being shovelled. The nurse’s voices echo in the corridors. The man in the room on his own starts shouting out for ‘ Annie’ at full volume. He believes himself to be somewhere else. It goes on for hours, his voice becoming increasingly hysterical. Nurses and auxiliaries are in and out with commodes and bedpans, emptying catheters. It’s impossible to rest.
Nightly I long for the dark peacefulness of my own bedroom, but I know I am not ready to go home. It is a relief when the grey dawn light replaces the yellow glare.
I so value being in familiar surroundings now. The stomach problems have completely settled. I am in an unusual amount of pain from the operation site. Whereas before this latest trip to hospital I was walking a little more each day I am now in intense discomfort just hobbling round the house. The whole area burns and pulls. I don’t feel like walking. My body just wants to stay in bed. None of the medication touches this. I am concerned and make an appointment to see the GP later this morning. This is more depressing than having cancer. I can’t cope with this constant drain on my energy and spirit.
I keep wondering why this is going so badly wrong. I do as I am told; I try so hard, yet I feel worse as each day passes. I am seeing Dr B at the hospital tomorrow. How will I cope with Chemo when I can’t even manage today without bursting into tears on a regular basis? It does not augur well. I wish I had more faith in the Health Service.

Post 8:August 21st

During my last stay in hospital I found a wonderful crochet pattern for a soft toy. It is rather an endearing looking elephant, with a long graceful trunk, floppy ears and four sturdy legs. I find it irresistible, and despite my lack of practice in crochet I decide to give it a try. When I tell Rachel about the project she thinks little Ziva will be enthused. She asks me:
“Do you remember that soft toy you made for us when we were kids Mum?”

Creative genius
I decided to be the resourceful sort of mother you read about in magazines. The children were to be admirers and beneficiaries of my creative efforts. Since spatial awareness is not one of my strengths, things did not go according to plan. I had the idea of making a cow with some lovely soft material, a little kapok for stuffing and enough enthusiasm to create a herd.
Curbing my tendency to be slapdash I carefully cut out the template. Two sides of the cow; quite an achievement for me. My art teacher at school used to look at my efforts with pity, and his comments might rise to: ‘Good ideas, less successfully carried out’ and other such encouraging gems.
I was feeling very proud of myself. Carefully I sewed the two sides of the soft toy together. It was going well, until 10-year-old Rachel pointed out the fatal flaw.
“Mum, I hate to tell you, but there is something wrong with the cow.”
“Nonsense” I protested, with the confidence of a soft toy connoisseur.
“Well look at its legs!”
I studied the beast. There was no denying it; where four legs should have been, there were, strangely, only two.
I couldn’t understand it. I had put the sides together myself and each had two legs. I knew that two and two made four. What on earth could have gone wrong? I had created a two-legged cow. Even Dolly the sheep managed four legs, despite being cloned.
When Daniel had picked himself up from the floor, and wiped his eyes, his comment was almost encouraging.
“Well Mum, at least you’d never get one like it in the shops.” Our two-legged cow was unique.
I probably should have left the project right there, but somehow my disappointment spurred me on.
“I can sort this out!” I reassured the children. Using the remains of the kapok I fashioned another two legs and stuffed them.
“This should do the trick,” I told myself. I noticed the new legs weren’t very symmetrical, but my impatience had kicked into gear by then. I needed to prove once and for all that a four-legged cow wasn’t beyond my capabilities. When I attached them to the ailing bovine I ended up with a creature Professor Frankenstein would have been proud of. It still lacked its full quota of legs, but with the addition of two pendulous udders attached wonkily underneath by my clumsily inadequate stitching. Not one of my proudest moments.

Post 7: Monday August 20th

My brother Gerald and his wife Teresa arrive on Friday to visit me. I read them some extracts from my memoirs. I don’t ever remember seeing Gerald laugh so much. He has a selective memory when it comes to our childhood; he is amazed at the details I can remember. He insists I send him a copy. He doesn’t even want to wait until I get it published!
As the afternoon draws on I start to feel quite ill. I am getting pains in my stomach and don’t feel right at all. After nearly two weeks at home I can’t believe there are more problems. We are to have a meal in the restaurant across the road.
Gradually as the evening wears on I realise this is not going to settle. I accompany them to the restaurant, make a half-hearted attempt to eat, but just feel worse. I leave Gerald Teresa and Chris in the restaurant and walk home across the green. I go to bed, but the pains worsen. I lie awake most of the night, hoping the pains will abate, wanting so much to manage this myself.
By the early hours the pain is unbearable and I begin vomiting. I am desperately thirsty but can’t manage even sips of water.
We wait until it is light and then Chris calls an ambulance. I can’t walk. I have pins and needles all over me. They have to carry me. My blood pressure is very low. I am upset that this is happening again. I can’t bear the powerlessness I feel, and the lack of control over my health. I can’t imagine what has triggered this. My regime had seemed so effective.
Chris comes with me. At A&E they take blood and put me on a drip. An X -ray shows that there are still postoperative adhesions causing these problems. The doctor explains that if these episodes continue they may have to snip the adhesions away if they are accessible. I try not to think about it happening again. It is too upsetting.
After a couple of hours they take me up to Whippingham ward. The drip and nil by mouth settle things down during Saturday. By early evening they allow me to drink, and once I can keep fluids down they stop the drip.
By Sunday evening I am well enough to return home. We have to wait an hour for a taxi. By the time we get home I go straight to bed. I am terrified it will happen again. I don’t feel sick any more but I sleep with a bucket by the bed just in case.
Monday morning I am feeling better. The pain has lessened. I don’t feel sick and can manage food and drink though I am paranoid with each mouthful.
There is a letter on my desk inviting me for an appointment to see the Cancer specialist first thing on Thursday morning. I have mixed feelings. I desperately need to find out what will happen to me and when. Equally I would rather it didn’t happen. The second reaction is illogical and naïve, but I can’t help myself. The fear is overwhelming. As a child my fears seemed so very real to me. How much simpler it would be now, if I could just be frightened of spiders or feathers as I was then.

Post 6 : Monday 13th August

Dark thoughts

My regime of eating small but frequent amounts seems to be working. I chew everything at least 20 times. I take no food that passes my lips for granted. I thank God every time my bowel functions normally. I don’t feel like the same person any more.
I still find it impossible to believe that I have had a cancer growing inside me for at least a year now. I was feeling exhausted, but then everyone at work felt like that. I did wonder why I was breathless just running upstairs, but know now it was the severe anaemia that was undiagnosed.
I find myself going over it all in my head. I am sure that isn’t healthy so I try to immerse myself in a book or talk to my friends on the phone, Every now and then I return to that dark place in my head where I don’t want to be. I used to be OK with my own thoughts. Now I try to avoid dwelling on all of this. I still have not heard from the hospital about seeing the Cancer specialist. Part of me feels I should chase this up; part of me wants to ignore it.
I always told myself I would never succumb to Chemotherapy. My choices are limited. If I choose not to have the treatment I have little more than a year to live. I have to make a sensible decision, though my body doesn’t want any further assault. Reluctantly I telephone Jo, the Colorectal Clinical Nurse Specialist. She promises to co-ordinate an appointment for me. It is likely to be at the beginning of September. Why did I do that?

Post 5 : August 1st

This fourth admission is torture.
I have postoperative complications; another obstruction, a narrowing of the lower bowel caused by the surgery. I can’t keep anything down, and crave liquid. The paramedics are gentle and kind. They put me on a drip before taking me into A & E but my tongue is sticking to the roof of my mouth.
In A&E whilst I wait on an uncomfortable trolley to be admitted to the ward I see the staff drink endless cups of juice. I want to mug them to get some. I beg for some really cold water. One nurse promises to fetch me some iced water. I watch her in desperation. I can’t move. She disappears and I don’t see her again. A doctor brings me some tepid water to sip, but I bring it straight back up and feel ten times worse.
It is 1.30am. They take me for an X-ray and a CT scan. I am eventually admitted to a Medical assessment unit while they wait for a surgical bed. The hours pass slowly. I am very sick. They have to change the bed linen twice. I really don’t want to go on.
The orderlies offer everyone food and drink. I am Nil by Mouth and they offer me nothing. On this ward there isn’t even ice to suck. The staff buzzes round busily. I am desperate to get back to Whippingham ward, where I know the nurses and they know me. The hours pass slowly. I lie here staring at the ceiling. I just don’t understand why and what is happening to me.
Late afternoon and I am finally transferred to the ward. They bring me crushed ice and a straw. I can manage only the tiniest sips. Another stomach tube eventually relieves the symptoms and I begin to recover. My first proper drink tastes like nectar. I savour each mouthful. Hot chocolate. I crave the sugary sweetness and the sensation of something in my stomach at last. A day later my first bite of toast lasts ages and is manna from heaven.

Post 4 :July 20th

I’ve had the operation. I open my eyes. “Where am I?”
“You’re in Intensive Care. You lost a lot of blood and you needed a transfusion. My name is Ruby. I will be looking after you”. Ruby has soft and tender eyes. She is from the Philippines. She sits at a desk at the foot of my bed. I am full of tubes and drains. It is very peaceful in ICU. There are no other patients near me and few visitors. Everyone has to ring first before they are allowed in. I have a venflo in my neck for all my medication. It feels weird, like I am choking slightly. I am very sick, but Ruby is always there, helping me over it with regular injections. I am able to sleep a little for the first time in weeks. I drift in and out of consciousness. Chris is at my bedside. I can’t remember him coming in. When he is no longer there I don’t remember him leaving.

Post 3 :13th July

The Wrong diagnosis

I can’t believe it. A week later and the pains are back, just like before. I can’t pass anything through my bowel. The spasms are excruciating. We try to go out, but it is obvious we need to return home quickly. I can’t eat and I can hardly drink. This is not good. I am frightened. I go back to my GP; he is concerned, and thinks I may need to go back to the hospital. By the early hours I realise he is right. This time they are horrid in A&E. The X-ray shows only that I am constipated.
“I am not admitting you with constipation.” The surgeon’s tone is arrogant and patronising. They send me home after five hours with some suppositories. I spend a miserable day and night in pain until I can stand it no longer. By Sunday I am on the phone to the emergency doctor. They advise we go straight to Out of Hours surgery at St Mary’s. Chris and I take a taxi. He won’t let me drive. He thinks they will keep me in. Hastily we pack a bag. I hate this. I feel like a freak. No one understands my pain and discomfort. I feel more wretched than I can ever remember.
The doctor at the Out of Hours surgery is wonderful. He can see what is happening and makes an accurate diagnosis with no scan and no X -ray. He is on the phone immediately:
“I have a young lady with severe abdo’ pain. I believe there is a sinister blockage. I want to admit her straight away”. I know now that this man saves my life. He takes me round to A&E and ensures there is a bed for me back in Surgical.
This time the doctors are thorough. They send me for a scan and a colonoscopy. Gail, one of the team, comes round to see me shortly afterwards. She draws the curtain round my bed.
“We have seen a narrowing in your colon. We think that the likelihood is the mass is cancerous. Anything benign would not have the same effect.”
“No I don’t believe it is cancer,” I tell her with the inner certainty I must be immortal at least for a few more years.
She won’t let it go.
“You need to accept that you probably have cancer”. We are going to operate. We will have to open you up this time to remove the mass.”
I am gob smacked.

Post 2: 2nd July The start of the trouble

It begins so suddenly. Sunday evening, and I have stomach pains. I put it down to colic, but the pains are worsening this morning. I am writhing on the bed. Later I start vomiting and call the GP surgery. They agree to a home visit and Dr C is there within half an hour.
“It might be an obstruction, but I can’t be sure. Try this anti spasmodic medication, but if there is no improvement you will have to ring back”
I wait for Chris to come home from work. I am really feeling poorly. I hear Chris’ key in the door and beg him to get me the medication. I really believe it will help me feel better. It doesn’t. By the early hours of Tuesday morning he has to call an ambulance. I relinquish control. It is out of my hands now. They admit me to Whippingham ward in St Mary’s Hospital Newport.
Dr E is concerned when the pains worsen. He decides I may have a kink in the bowel but thinks that keyhole surgery will hopefully solve the problem. I am still on track for my planned trip to Canada on the 23rd. That is a relief. My recovery from the keyhole surgery is swift. The pains have gone. He finds only a build up of fluid inside me. He is still unsure of a diagnosis. They send me home just before the weekend.