Cancer & Me 30 Years On (chapter 8 – Good News, Bad News)

A few weeks after my interview I heard that I had been accepted onto the BA (hons) Graphic Design course at Liverpool Poly. I was ecstatic and applied for a grant. It was refused on account of me not being resident in the country for the previous three years. Downhearted I attended an open day at the college and there once again I saw Mr Tall and Lanky – now known as Paul – and told him his efforts had been in vain as my grant application had been refused. Once more I heard him snort – ‘see your solicitor – write to your MP – don’t give up!’ I did just that and got my grant.

A friend's renovation project in Folkestone

A friend’s renovation project in Folkestone

The summer was spent with friends and family, sketching and doing the pre-course work we had been given. I spent several weeks house-sitting for friends (Marion and Juan, in whose house I’d had a studio in Zambia before they moved back to the UK) in Folkestone, where they had also invited my parents to stay awhile. My sons came to visit too on separate occasions and with each of them I took a day trip to Boulogne. There were a few old friends in the area and I also made new ones, not least Mad Matt, an Aussie who was doing the usual back packing stuff in the UK. I was free for the first time since I was 14 and I was reliving my lost teenage years by running riot. I had such a good time in spite of my colostomy and the cancer seemed a million miles away. (Marion actually said that she thought the recurrence of my cancer had been a positive thing as it prompted me to walk away from an oppressive marriage!)

With Mum and Dad in Folkestone

With Mum and Dad in Folkestone

Faces at a dinner party

Faces at a Folkestone Dinner Party

Come the autumn it was back to reality and down to work. I took the course very seriously and found it quite hard, especial the art history and the thought of writing essays filled me with dread (I’d even failed my O Level English!) Field trips were a problem too – youth hostels or cheap hotels with no en-suite bathrooms are not conducive to easy living for ostomates, but I coped. Another big problem was the wind. Farting is a wonderful way to ruin a lecture! I developed coping strategies like coughing or knocking my books to the floor. I’m naturally dyspraxic so that came in quite handy as a cover.

In May of 1989 (during my first academic year) I attended a Well Woman Clinic and they discovered I had carcinoma in situ of the cervix and so I went into my local hospital to have a cone biopsy and a labial cyst removed. I came around from the anaesthetic only to discover they had been unable to perform the operation as the uterus had slipped into the cavity where my colon once was. It was decided just to monitor the cells with six-monthly smears. The cyst wasn’t removed as they ran out of time!

There were other mature students in my year and I became particularly friendly with Carol, a few years younger who had lived in South Africa, so we had that magnificent continent in common as well as our art and marital status. We sat back to back in our little workspaces and over that first year, Paul, who was one of our tutors on Mondays, would frequently come and chat to us. I discovered he drove through my hometown every day on his way to and from work and he offered to give me a lift. I do not believe he had any ulterior motive, but I declined, preferring to drive my old banger to my nearest station and taking the train to and from Liverpool.

Before long it became apparent that all was not well in Paul’s household, culminating in his wife leaving him and moving into a house she had been renovating (with her business partner) less than 100 yards from the marital home – with her boyfriend! By now I had learned this was Paul’s second marriage and only three of the six children were his, the other three were step-children – all grown up and away from home, except his wife’s middle child – a daughter aged 23 and her mother left her in the marital home with Paul! He was devastated by his wife’s infidelity, being terribly naïve and having no idea that this had been brewing. One evening he invited me out for a drink and I was snowed under with college work – and had been determined never to get involved with another man, so declined. He said, ‘I though you were my friend!’ I went for the drink – and as they say, ‘the rest is history!’

Telling Paul about my colostomy had been a major issue, but he was fine about it and as it turned out he had issues of his own which we worked our way around and discovered a whole new life with each other. I couldn’t believe my luck at finding such a man, though he was about to go through another acrimonious divorce and as before, his property and life savings were to be decimated, the apparent injustice of it all leading him into bouts of depression and mood swings.

My colostomy was causing me all sorts of problems; never settling down to a regular pattern and I was constantly worried about the wind, especially during lectures, so the stoma nurses at Christies suggested I try colonic irrigation, which is an enema into the stoma and after the bowel has evacuated you can use just a stoma cap instead of a colostomy pouch or plug. I would have still been quite happy with the plugs, but wind was constantly blowing them out, so with the okay from my surgeon I decided to give irrigation a whirl. He had lived in America for 20 years and said it was the preferred method there for various reasons – and if he had a colostomy it would be the method he would choose. That was good enough for me!

An appointment was made for the stoma nurses to give me a trial run of colonic irrigation. What they didn’t tell me it was the first time for them too! How did I discover this? Well, on the ward at Christies they led me into the bathroom – which, although it is very big and ideal for giving someone a bath and had all the lifting equipment – it doesn’t actually have a toilet in it! Looking at each other they even suggested using a bucket until the practicality actually dawned on them. They are two of the nicest people and I really did feel quite sorry for the dilemma they were in. The only answer was to do it in the communal loo next door, so they filled up the irrigation bag with water from one of the sinks and we all squeezed ourselves into a cubicle, together with a drip stand to hold the water bag. I started to take my panties down, but they said that wouldn’t be necessary as all the faeces are evacuated from the stoma via a long plastic bag into the toilet bowl. Well, that’s the theory!

The pain was excruciating and the amount of excrement unbelievable. We were all shocked and I began to feel faint. To put it bluntly there was shit everywhere and my panties had to be washed. I thought I had gone pale, but they described me as going green! When finally things appeared to have calmed down they applied a colostomy pouch, as they were unsure if a cap would be suitable in light of their immediate experience. I was completely drained – quite literally, so they took me to a bed on the ward and went and brought me some disposable knickers. Then they found Paul and brought us cups of tea. I think it took me a couple of hours to recover and although they gave me the equipment to take home, it had been such a disaster that they didn’t think I would ever try it again. They were wrong and although I do still have problems sometimes – another fine mess has quite a literal meaning, but for me it is still the best method by far, unfortunately it isn’t suitable for everyone.

The First Irrigation

The First Irrigation

After the aborted cone biopsy I had started experiencing a heavy ache in my lower abdomen and I reported this to the registrar when I next attended my local hospital for a smear. He said he would discuss it with my consultant and he may want to see me himself. It might be that the uterus was pressing on the bladder and I may need a hysterectomy, in which case I would be placed on the waiting list and it might be six months before admission….


Apologies – for neglecting this blog

I always have good intentions of updating this blog, but find myself concentrating on  – and failing to copy the posts to this one. So – as it is now 30 years since my cancer began, for the moment at least, this will become a ‘Cancer Blog’.

In the meantime I’ll make every effort to update the artwork

Garden – Then & Now

Being unable to sell my house and get a bungalow for my mum’s convenience, I decided to extend into my already tiny garden, incorporating a shower loo, so that mum could spend her days on one level. The garden was lovely and now for three months it has been a building site. the work was delayed on account of the extreme weather over the Christmas period, but now the extension is beginning to take shape.

Alzheimer’s & Dementia

11th Feb 2011

It’s 1.45 and Mother is on the rampage again. She woke me an hour ago and in the space of 15 minutes had me up four times with her messing about. Now I can’t get back to sleep and she is muttering away in that awful deep voice that she conjures up in the night.

This current situation had been going on now for over two weeks. Occasionally she is shattered and will sleep most of the night, but I am so used to her waking me up that I wake up naturally and then have to go and check on her.

I am particularly alert at the moment, as she fell over last evening and hurt her leg, so she is walking worse than ever and I am frightened she may fall again and do herself a serious injury.

Before going to bed I let her soak in a warm bath, thinking it would help ease the sore joint and it was only when she took her clothes off did I realise that she had badly bruised and cut her arm as she put it out to save herself as she fell. I had been dozing on the settee on account of last night’s lack of sleep due to her pacing across the landing incessantly. Just as I was dozing off she would leap up and head for the kitchen. As it is in disarray at the moment, with boxes all over the place on account of have the improvements done (for her benefit). I didn’t want her setting foot in there in case she collided with something. “What are you looking for?”

“The toilet!”

“There is no toilet in the kitchen, you are going the wrong way. It is upstairs.”

“So I can’t go to the toilet then?”

“It is upstairs, you are going the wrong way.” The conversation continues in the same way until I had to get up and take her to the toilet – and so it continued for about an hour. Finally I was allowed my 40 winks then suddenly I roused to find her off to the kitchen again. “What do you want now?”

“The toilet.”

“I keep telling you, the toilet isn’t through there, it’s upstairs.” Still she takes no notice and heads for the kitchen. Still dozy I leap up to get her, by this time she is a yard into the kitchen as I take her arm. “Now look – where is the toilet in here? There isn’t any and never has been, but soon there will be one in this direction.” I try and lead her out, but she turns violently and pulls away from my grip – only to end up on the floor, no doubt blaming me as she always does, but to any onlooker it would be obvious why she fell.

I have to get her to her feet, which further exacerbates my bad back, caused by Sunday’s performance. I see she is limping more than usual and check out her leg. I can see no visible sign of damage apart from a few scratches, but I guess it will soon become bruised. I then decide on the soothing bath. What a joke that turned out to be. When she got undressed I discovered a great bruise on her arm and a couple of gashes where she must have banged herself as she put out her arm to save herself. I suppose it could have been worse, as last time she broke it!

I tucked her up in bed around 11pm and I retired around ten to midnight, but couldn’t sleep at first as I was wondering it my dishwasher would be delivered between 6am and 8am as promised. I guess I dropped off before 12.15am only to be wakened by mother half an hour later – and that was only the beginning of a night of no further sleep whatsoever. She paced around constantly until in the end I decided to film her, as it was apparent that it was pointless me returning to bed. I ran the batteries down in my camera and while I was trying to get a bit of charge back in them I went on Facebook and also sent a few emails. I made a few audio recordings as even when she was in bed she was talking incessantly in that deep masculine voice. Then the pacing started once again. I got dressed around 4 am.

Though I hold the late diagnosis of her urine infection partly to blame (how can it take 10 days to get a result?), she had been on antibiotics for over a week now, so therefore feel that this is the dementia moving on to a different stage.

My dishwasher arrived at 6.30am – marvellous – so now it is adorning the sitting room, as the kitchen still isn’t finished.

New Year 2010/11, Alpha Thalassaemia, Aortic Aneurysm, Depression & DIY

I will have mentioned this before, but it is still foremost in my mind; four years ago, soon after Big Ben struck in 2007, Paul suddenly collapsed and died. Consequently this is – and always will be, the worst time of year for me. I struggled through Christmas Day, but wanted to stick my head in the sand over this 24-hour period and had declined an invitation to dinner. My friends Dot and Pete usually drop in after taking Dot’s stepmother to Accrington, but this year they were spending it with Pete’s brother in Scotland. Fortunate as it happened, as Mum had an appointment at the hospital to see the vascular surgeon at 4.20 – and it could take up to three hours, as she would need a pre-op assessment and scan.

At 9am I received a call from the department, asking if I could take Mum for an earlier appointment at 1pm, as the scanning department would probably be closing early for the holiday. ‘Yeah – right!’ – and they didn’t understand why they had given a new patient an appointment so late, anyway.

I was glad of the earlier appointment, as it took me further away from midnight where I had spent those awful hours four years earlier. We made our way to a totally empty waiting room, which didn’t fill me with confidence. I sat there listening o the staff wishing each other a happy new year and all the best and all the other greetings heralding in the coming year and the parting of the old one. ‘Please, will someone get me out of here!’ Eventually a tall slim nurse strode towards us and I realised it was Paul’s relative – another reminder of his funeral. She took the notes through to the consulting room, but then returned to tell us, that having read the notes, the earlier appointment hadn’t been necessary, as Mum would not be having the scan etc. She apologised profusely and offered to make us a cuppa, as the vascular surgeon wasn’t yet due in.

Fortunately the surgeon did arrive early and we only waited about an hour. Given my mum’s age, he didn’t think the surgery was a good idea and I concurred, but said my concern was due to the GP telling me that if the aortic artery ruptured, an internal bleed would be very painful. He agreed with this, but said if it just leaked, then medication could be given for the pain, but if it did rupture, then it would be over very quickly. However, he was obliged to tell me that this condition usually ran in families and there is a one in four chance of me having the same condition. As I was 65 he asked if I wanted a scan. Deja vu! Some 12 years earlier when I had my dad at the hospital regarding his many blood tests, it was discovered he had the genetic condition, alpha thalassaemia and after a subsequent blood test, it was discovered I carried the disorder too. At the time, the surgeon said it was in no way dangerous, unlike beta thalassaemia, and would only mean we could be (and often were) inappropriately prescribed iron supplements, which had always made Dad and me unwell.

Later, when I was to research the condition on the Internet, I discovered that in fact it results in less oxygen to the brain. As Dad was suffering from dementia I felt really depressed regarding my old age and especially now that Mother has a mixture of dementia and Alzheimer’s, so my future really looks bleak. Apart from that, my research told me that I could also have passed the gene to my sons and if they do have it, then so could their children. (Now the nasty bit) …

What is alpha thalassemia?

Thalassemia is an inherited disorder that affects the production of normal hemoglobin (a type of protein in red blood cells that carries oxygen to the tissues of the body). Thalassemia includes a number of different forms of anemia. The severity and type of anemia depends upon the number of genes that are affected.

Alpha thalassaemia

The alpha chain is produced by four genes and the severity of the condition depends on how many of those genes have been mutated.

  • If one gene is mutated, there is little or no effect.
  • If two genes are mutated, there may be symptoms of mild anaemia. This condition is known as the alpha thalassaemia trait. If two people with the alpha thalassaemia trait have a child, there is a one-in-four chance that their child will inherit the most severe form of alpha thalassaemia (see below).
  • If three genes are mutated, the result will be a condition called haemoglobin H disease. People with haemoglobin H disease will have lifelong (chronic) anaemia and may require regular blood transfusions.

If all four genes are mutated, the result will be the most severe form of alpha thalassaemia, known as alpha thalassaemia major. Infants with this condition are unable to produce normal haemoglobin and are unlikely to survive pregnancy. There have been some cases of unborn babies being treated with blood transfusions while still in the womb, but this type of treatment has a low success rate.

(Excerpt from NHS Choices).

Neither of my sons has taken the test!

Having told the vascular surgeon that I would like the scan to ascertain whether I have an aortic aneurysm or not, I drove away from the hospital wondering whether, in fact, I should. Would it affect my holiday insurance (it is already loaded on account of my cancer) in the unlikely event of me getting out to Hong Kong next year – or any holiday, for that matter? What would happen to my mum if I had to go into hospital? Wouldn’t I just be better popping of quickly without knowing about it? So many ifs and buts!

I tried to do some retail therapy on the way home from the hospital, but everywhere was gridlocked and I only got as far as Matalan where I found nothing to buy in the short time I could allow myself in the store, with Mum waiting in the car. I found a purple hat at £2.50, which I quite liked, but when I saw the queue I returned it to its rack.

Feeling really depressed we continued home and I looked in the freezer for something for dinner, but found nothing other than a breast of frozen goose that I had bought for Christmas – before Adrienne had invited Mum and me to hers, some pork sausages, some vegetarian sausages, some ice cream, some mussels (which Mum won’t eat), two packs of salmon, but although I could have quickly defrosted them, I didn’t feel like peeling vegetables to make a meal. Otherwise there was some bread and a large pack of ice cubes! No frozen dinners for Mum – so clearly I hadn’t been concentrating on my last visit to Iceland!

I was starving, having had an early lunch of a pack of crisps and four Tuc crackers. My mum was only slightly better off with having a cheese sandwich and a mince pie! Now feeling really down, living every moment of the run up to that New Year four years earlier – ‘what if – what if?’

I defrosted a couple of sausages for Mum and did a fried egg for both of us. Mum had bread to dunk in the yolk and as I was still peckish I had a chunk of cheese.

Now heavily into the Crabbies Mac I was becoming more and more maudlin. Everything I watched on TV had a New Year’s party in full swing, till at 10.30 I could take no more and got Mum and me ready for bed. I had the common sense to take the hands free phone with me – on the off chance that I got a midnight call, totally forgetting that my mum, now sleeping in the small bedroom where the computer is, can also be disturbed by the phone.

Just after midnight the phone rang – Stewart with his best wishes and telling me they were watching the fireworks at Edinburgh castle, which they could see from Isabella’s bedroom. When he hung up I had to go and get mum back to bed and no sooner had my head hit the pillow than the phone rang again, ‘hello, hello’, but nobody answering. Thinking it was a wrong number I stayed silent for a few minutes hoping to receive an apology from the caller, but none came. The racket continued and I realised I recognised those voices – they belonged to the revellers at Craig and Tony’s dinner party – that meant (probably) it was Adrienne phoning me. ‘Adrienne, Adrienne, I can’t hear you, can you hear me?’ Still nothing, but then I heard her voice talking to someone and it was then that I realised that perversely I had been thrown into the midst of the dinner party that I had declined, because this night is one of those when I just can’t cope with the jollities! I text Craig to ask him to tell Adrienne her phone line is open.

Sleep now eludes me, as it does Mum. I toss and turn all night long and Mum is up and down too. Morning comes, but it is so dull and dismal that I don’t realise the time and drift off to sleep again – only to be disturbed once more by the phone. It’s Joan, very kindly phoning from Zambia. I don’t tell her that I am still in bed, but of course the phone has disturbed mother too, so I have that to contend with.

We chat away and I tell Joan about last night and my Christmas Eve up the ladder etc and she says I really do have rotten luck. I say that in the grand scheme of things it isn’t too bad – like I haven’t just had a daughter murdered, or other family tragedy. I have a home, heating and everything we take for granted, but the little things that go wrong are relentless and slowly grinding me down. I always knew how good Paul was around the house, but now I am constantly being reminded.

Craig responds to my text from last night and I call him back. He says how perverse that I was unwittingly thrown into the dinner party that I was so anxious to avoid and through no fault of my own. Like I am viewing it from some parallel universe.

I have texts at midnight from Cath, Leo and Justin, but haven’t responded to them because I was otherwise occupied with the Adrienne phone call. I reply to Justin and Cath, but the one to Leo doesn’t go and I receive a message that I don’t have enough credit!

Eileen calls me and I have a nice chat with her. She knows where I am coming from and the emptiness of being a widow.

Come 2pm I asked Mum if she needed the toilet, as she hadn’t been since lunchtime. She looked at me as if I was off my trolley – how could I possibly imagine she needed the loo? Even with all her protestations, I insisted she go and what a good thing I had, as she was about to do a monumental crap. A crap that just emphatically refused to flush away even though time after time I tried!

Just after dark I remembered what was lurking in the porcelain and so I went upstairs to try again, flicked on the bathroom light switch and all the lights in the house fused! Now whereas most people can go and trip a switch on their consumer units and lights are restored, I cannot do that. I have to pull out the correct fuse from the electric box, get a screwdriver and loosen the screws, then take out the broken wire, cut a new piece of the correct wire, thread it through the holes and tighten the screws without breaking the wire again. Hardly difficult to do and I’ve done it once before, but not easy in the dark. As today is the anniversary of Paul’s death – the day my lights went out metaphorically, then it seemed symbolic to sit in semi darkness for the rest of the evening. I fixed the fuse next morning.

Christmas Eve & Burst Pipes!

On Christmas Eve morning I was in the shower and realised the water was lapping around my

feet and instinctively knew the waste pipe was frozen (either that or it was the facecloth that mum had  flushed down the loo a few days earlier!)

Fortunately it was a frozen pipe, so there I was in  my black & white furry coat (for warmth), boots, hat and rubber gloves, up a ladder defrosting the pipe with a hairdryer on an extension lead. The pipe  suddenly dropped off, showering me with the dirty water, soaking me, but fortunately not electrocuting  me – though leaving me looking and smelling like a wet Dalmatian!

All of a sudden the defrosting of the pipe suddenly got easier, I just took it inside filled the sink with hot water in which I stuck one end of the pipe, bashed it a few times, turned it over and out came a metre long sausage of ice.

The chances of getting a plumber on Christmas Eve in freezing conditions in the most appalling winter for years, was nigh on impossible – and even if I could get one I didn’t feel like waiting around for one to arrive, especially as I promised Paul’s aunt that I would go and visit her in the afternoon. So, on my way there I stopped off at John’s Cut Price and bought some lagging.

Back home after visiting Edna, I was up the ladder again, trying to attach the lagging when the pipe dropped off again and I realised the bit adjoining the elbow joint had actually broken and as it is half embedded in the rendering I didn’t want to make matters worse by chipping the rendering away to get access.

I thought I could tie the bath waste pipe to the wash basin pipe directly above it, but having had cupboards ripped out of the kitchen to accommodate the washer & drier, I couldn’t remember which box I’d packed the string in, so I fastened the pipe up with a carrier bag! 11 days later, so far so good.

My building extension first going to plan in the summer, suddenly actually started in a flurry of activity in November, but then ground to a halt with the weather. Since then the two builders found alternative work and so my project manager, is having to look elsewhere. He has arranged to come with a friend on Monday – if it isn’t raining. I don’t know what the forecast is for Monday, but it’s currently snowing again!