Month: July 2018

Pre-admission & the first days

I was called back to Cork to have the pre admission tests completed on Friday, 30th June.  My daughter in law drove me up for this and I was conscious that I was taking her away from her work on the busiest day of the week for her job.

I suppose now that I must have been still in a state of shock.  I remember gabbling on to one of the nursing staff doing the pre admission test, about a book which I had found in my bookcase.  My 8 year old grandson was managing to read this.  It was all blood and guts, an adaptation of Treasure Island.  The grandson had surprised his parents reading words which were way above his regular reading ability.  I had discovered the book was especially written for dyslexic teens and it had succeeded in opening up a vocabulary that was interesting to a boy of my grandson’s age.   I had no idea how this sample book had arrived in my bookcase.

The nurse had a boy of the same age and one a couple of years younger.  The younger boy’s reading ability had overtaken her older son’s and was causing the nurse a great deal of difficulty.  By the time she finished with me she was going to buy into the Don Johnson reading system in the hope of having the same result as my grandson’s.

I can’t really remember anything of importance in the tests.   Should I have been asking about what was in front of me, or about the tests.  I was pushing everything away until I had to face up to it.

I had a list of stuff I had to get and do before I started the chemo and I had a book of hints and tips with a colostomy.  I had booklets on dealing with cancer, diet sheets as my diet would have to change,

I know I speed read them all but to be honest, nothing was penetrating my brain.  I could also not complete an easy level of Sudoko.  This is always a pointer that I am tired or unwell.  I expect I was both.

I had to buy nightdresses too as with the target area being my bottom, pjs would be too restrictive.   I had taken to sitting on soft cushions and using a cushion even in the car whilst driving myself and a cushion on the chair in front of the computer.

The level of pain was still excruciating.  I had thought that no one would suffer pain with cancer these days.   But I did and even when in hospital it was difficult for the staff to understand the level of pain I was experiencing.

The weekend before I was admitted was a race to get everything done that needed to be done.  I had accounts to finish, a VAT return to do and there were family birthdays coming up so I bought cards and sorted the gifts out.   I needed to shop for everything on the list the hospital had given me and see that the house was left in reasonable order.  I didn’t know how long I would be in hospital or when the chemo and radiotherapy would start.

We didn’t deliberately not tell people about my diagnosis.  It was just everything happened so fast and I had so much to do in these few days that I had to deal with what was a priority.   People would find out in time anyway.  That’s part of living in West Cork.

My son drove my up to the hospital the day of my early morning admission.   I was taken to the pre-operation area but waited some hours before being taken to theatre.  I waited so long that one of the nursing staff took pity on me and went to the shop and bought me magazines to read to while away the time.  People are so kind – aren’t they.

I remember waking up in the recovery room in the late afternoon and knowing that something poisonous had been removed from my body.  My bowel had been looped and in fact I would have been in serious trouble (well I was in serious trouble but even more serious trouble) if the twisted bowel had burst before it was unlooped.

At some stage during that first stay in hospital I had a port put in around my collar bone.  This was to stay with me for months.  It saved my arms becoming like pincushions as my old veins are twisted and turn at alarming angles so inserting a cannula was difficult at the best of times.  My veins used to be a delight for young house doctors but not anymore.  Having a cannula fitted also restricted my use of the iphone so the port gave me more freedom to keep texting!

I had not told or discussed with my sons that I would refuse any chemo or radiotherapy treatment.  My reasoning was that the two years before my husband died had proved a nightmare for me and my son and daughter in law in Ireland.   The other boys and family members had come over from time to time and supported us as much as they were able to.   John had been given two weeks to live but lived for two years – determined to live until he was 100.   The disease defeated him when he was just short of his 74th birthday.

But I had vowed I would not put my son and daughter in law through the same experience.  It was a very hard and difficult two yeas for us all and they were young with a young family and had their own lives to live.  John had not been offered any chemo or radiotherapy as he was so frail by the time of his diagnosis it was decided he would not survive the treatment.  Besides which they didn’t know where his primary cancer was.

So I went along with the initial surgery and tests.  Then they found a lump in my groin and I thought that the cancer had travelled.  But tests proved the lump to be benign and all other tests seemed to prove my cancer was contained in the one area.

I was a dreadful patient during this time.  At times I didn’t have a clue what ward I was in or where I was in the hospital.  For a few days I was sharing a six bed ward with women who were at different stages of treatment for breast cancer.  I still was at  sobbing point with the level of pain I was in.  The main trouble was getting the prescribed pain killers on time before the pain shot through to a level that was really distressing.

I have always had a strong pain threshold but what I was experiencing now was difficult for the nursing staff to understand.  My cancer was considered to be rare and I reasoned it was their lack of experience in dealing with such a cancer that caused them not to understand that delaying the pain relief, at times an hour or more overdue, was allowing the level to reach a crescendo that would not be quashed by the prescribed pills.  It was also distressing for the other women in the ward who were not in any pain and also believed like I had that you no longer suffered pain with cancer in these modern times with all the drugs that were available.

I have never been a hospital bell ringer, but took to ringing the bell and I know the staff were fed up with me.   I was terrified my catheter would overflow and I was ringing for pain relief before I was due to have more drugs.   The level of drugs needed two staff to administer them so that made it more difficult on a busy night to get two of them together to sign out the drugs.

There was one night when the wards must have been hectic when I again rang the bell.   I was in agony laying on my back.  The male nurse came along. exasperated with me.  No wonder as I said, ‘I am in agony with my back and can’t get any relief.’

‘Why don’t you try turning on your side.’ was his scathing suggestion.

He was quite right of course.  I apologised for ringing the bell and not thinking of turning around to ease the pain.  I turned on my side and had immediate relief.   But I was so doped with the level of drugs that I was on and the level of pain I was in, that sane thought and common sense had long since departed from my brain.

And in fairness before he went off duty the next morning, that nurse apologised for his treatment of me.

 

 

The first ten days

The first ten days of my admission to hospital are a blur.   I had surgery the same day as I was admitted and had my bowel diverted.  I had a colostomy bag fitted and this would stay with me for the future.  I remember discussing this with my late sister-in-law, a fastidious woman to whom appearance mattered so much she would co-ordinate her husband’s clothes to match in some way to what she was choosing to wear.  Their colours never clashed.

Poor Anne was to be diagnosed with bowel cancer and prior to her diagnosis we had talked about a colostomy bag being the worst thing either of us could imagine.  Her cancer was too advanced to be treated.

Now I was to live with a colostomy bag and I wondered if it was 1984 instead of 2017.

A trio of nurses in the hospital deal with patients such as myself who had to learn to use colostomy bags.   They were kind but firm as I struggled to take on board what I was going to have to deal with for the future.  I made every mistake in the book.  I had to have the bag changed one night during my first admission and a student nurse was sent to help me.  I hadn’t even thought far enough ahead to cut the bag to size and the pair of us struggled in the bathroom but as the young nurse grew more nervous, I took a fit of the giggles as it was a ridiculous situation and one I never thought I would see myself in.   I learned always to have a supply of bags cut to size in advance of being needed.

I decided I was not going to have any treatment.  My son and his wife with myself, had borne the brunt of my husband’s cancer.  He got two weeks to live and lived two years, which was great for him but became a nightmare for the three of us, although in fairness my son and his wife have never complained and were brilliant to both of us throughout his illness.

They were young with two young children and I decided that it was better that they got on with their lives and didn’t go through the same experience with me.

One of the hospital staff, a lovely person I had met several times at fundraising events over the years, pulled the curtains around when she learned I had refused treatment and sat explaining how wrong that decision was..  She explained how much treatment had advanced and how successful the treatment for my particular cancer was.  She told me how the dna of my cancer had been sent to labs in the UK for identification so my treatment would match exactly what was needed to beat this.

Then one of the stoma nurses told me how unfair I was being to my family by taking away the opportunity to support and help me.  I had always been there for them but it is much easier to give than receive.  I had to learn to ask for and receive help.   The chemo and radiotherapy teams introduced themselves to me.   The tall blonde radiotherapy doctor with a willowy figure one could only dream about, explained that the treatment I was to receive was brutal but my cancer was curable with this treatment.  It was what was used worldwide for my particular cancer.

Well-meaning people told me ‘never have chemo as it is a poison’, ‘if the cancer doesn’t kill you the chemo will’.   With these ‘reassurances’ spinning around my head, I was so unsure but in the end had no choice but to reluctantly agree to treatment.  I went home to wait for the call back to start treatment.

Organising for admission

I arrived home and began to organise myself for admission.  I had lists everywhere of whom I needed to contact to give them the news I had cancer and what had to be done before going into hospital.

What a long way we have come during my lifetime that we can say the word ‘cancer’ openly.  It’s still said with a shudder, and fear and sometimes only in a whisper but the word was seldom used verbally as I was growing up and it eventually became, ‘the dreaded C’.

Is it because of television and the speed of communication these days that we are so open and informed (well we think we are) about everything?

I had a lot to do   Would I need pyjamas or nightdresses?  I had been a pyjama girl for years but realised with the nature of my cancer I would need nightdresses.  I bought sixt nightdresses as I would try to save my daughter in law any pressure about having to take my washing home, wash and dry it and return it to the hospital.  Everything would be landing on my son in Ireland and his wife and they seemed to bear the brunt of all my problems, much as I tried to be as independent as possible.

I had been in hospital so many times during the past three or four years.  I began to suspect that the cancer had been the underlying cause all along.  There was nothing to be gained from thinking along these lines.  My cancer was rare and difficult to diagnose.

I had no symptoms other than a slight bowel movement change.  I had no bleeding, no pain until the ‘piles’ began to appear.  I had had the national bowel screening test without any call back and another test the locum had organised a few weeks previously.  He had been delighted to phone me to say that it was clear.

I remember slowing to let the locum, who had made the appointment with the bowel consultant, cross Main Street, Skibbereen.   He spoke to me through the open window of the car, ashen-faced.  ‘I got a letter from Mr McC.’ he started.   But I cut him off mid-sentence as I had my 8 year old grandson in the back of the car.   The grandson is as bright as a button and was listening intently to what the doctor was saying.

I phone the locum later to explain why i had been so rude.

The day after I had been diagnosed, I was called to the hospital for pre-admission tests and five days after that I was being driven to CUH to have the surgery.   This was when my adventures with my stoma would begin and I was to start on a huge learning curve.