ensuitepilgrim's Blog

Saturday,26th July

This fortnight has certainly passed more quickly than the ten days in hospital and there have been some difficult scenarios.
A Switchback of a fortnight, highs and lows – although given that high temperature have been part of the ” lows”, that is contradictory!

I do not intend this particular Post to be a litany of woes; the prime function is to keep family and friends up to date, but also to inform others contemplating this surgery, or like myself ,recovering from it.

HICCUPS

Leaky bags – they are the little pouches one attaches to oneself, to cover the Stoma and contain Urine.
This seems to happen no matter how assiduously one follows the simple cleaning and drying preparations,and has continued to happen despite the attention of our specialist Stoma Nurse, Margaret.
Been give different sizes, styles, oh yes ,you would not believe it- till we find one that ” suits you sir”.
This problem is not messy but inconvenient, particularly at 2pm!
This does not happen every change,but too often.
Nurse due next Wednesday; hope she can crack it this time.

High temperature and possible Urine infection – two bouts, latterly ,necessitating calling a doctor as my temperature hit 38.5*.
That was earlier this week; Dr made thorough examination and prescribed same Anti- Biotics, as given in hospital.
Pleased to say that it is the best I have felt since Surgery,just hope the benefits outlast the course of tablets this time.

ON THE UP……

Feeling better – more of an appetite,staying out of bed 9 – 10 hours, walking Up and down the garden, which looks lovely at the moment.
Taking interest in the News, my family and being able to tackle the Guardian Crossword and read my current Novel ” The Goldfinch” by Donna Tartt.

A special word of thanks to everyone who has sent me cards and notes, wishing me well; there have been some uplifting comments and they have been very touching.
Also, thanks for text messages and phone- calls; some of them not about the appalling plight of England’s cricket team!

On a sporting note, haven’t the Commonwealth games been fabulous?
Great coverage by the BBC.
Men’s’ Triathlon and Joanna Rowsell, highlights for me, from England’s point of view and we are still ahead of the Aussies in the medal table.

Finally, must thank Barbara for looking after me – she is as outstanding as a nurse as she was as a teacher – care, compassion and when necessary,firmness.
My daughter Hannah has been a stalwart in looking after the Allotment, in all this heat….and home- baked lunchtime rolls, delicious, thanks, Han.

Both the last Post and this have been written at home; the comfort of familiar views, sights, furniture and most importantly, family.

It is Wednesday, 16th July,for two days now I have managed three light meals and been relatively pain free compared to the past 12 days.

When Pilgrims reach Santiago de Compostella, they claim their certificate from the Pilgrims’ office and celebrate, rightly, nearly all attend the pilgrims’ Mass at the Cathedral, whether they religious or not.
But , traditionally, after some respite, pilgrims would walk for a further three days to Finisterre and burn their ragged, smelly cloaks and sandals;I have to confess to not doing this after any of my Caminhos!

Is there an analogy here?
I reached my goal in coming through the Operation.(no certificate )

I reached home and left all my frequent changes ( sometime four a day ) of gowns and pyjamas, soiled , sweaty sheets behind.

So, will leave it there for now.
It’s pretty much down to me now, with support from the hospital,family and friends….
PS. Scars and Tattoos….there are different kinds of scars, on the skin and in the mind; despite the bad days of pain, I have none of the latter, but three of the former, as a result of the surgery; their minimal size is down to the brilliance of MR Ibrahim, my surgeon.
Never wanted a tattoo, nor jewellery; proud of my scars….they tell a much greater tale than any tattoo.

Saturday , 12 th July

Maybe Thursday, maybe Friday, almost certainly Saturday!

Unfortunately…..no.

A bummer to hear this morning ( Saturday 12 th ) that Monday, 14 th would be my earliest possibility of a discharge;,speaking of which, that’ s part of the problem, apparently.

Backtrack to last Wednesday, first, independent shower, despite two tubes to manage, plus bag. This was a break in what I shall refer to as the ” Gas Attacks”, which are a consequence of a procedure used during Surgery to expand the organs; some of this resides in the system and intermittently and painfully makes its escape ! At the time it was gripping.
I also suffered from bouts of retching up nothing which occurred twice a day ,for three days – thankfully, these, at least, have abated.
I shall not go in to the after effects of this, but to say that they were distressing at times, draining energy, and any interest in the world around me.
Tough work for my regular visitors, Barbara,Hannah and Tom – though they would deny this – as neither they, nor I, could anticipate what state I should be in.
( Daniel and family had kindly driven up on Sunday, to see me )

Roller coaster – good parts and painful parts of each day – tide.

To say that I never expected anything of this proportion would be a classic understatement.
Other experiences – involuntary emissions from the penis – nappy for a day!

Meantime, I have learnt how to clean up my Stoma, replace the bag and attach a night extension – checked by Margaret a nurse who specialises in this procedure and will make a home visit, next week.

One of the senior nurses, Margaret, described my operation as ” the biggest we do on here”.She and Tracey,were particularly good to me.
Wen Tracey heard my going home had been postponed , she sympathised and said,” We like to hang on to the good ones!” Ha Ha….

AN UNEXPECTED TURN OF EVENTS

Still Saturday morning and returning from the shower with my “lamppost”,
Margaret stated that MR Ibrahim, my consultant/surgeon had been on the phone and hearing that a junior house doctor had extended my stay,was coming in to see me; raised eyebrows.

Having come to terms with a two day extension, I tried not to let my hopes rise too much.
In he came, jeans and open- necked shirt, greeted me , looked at the charts, checked the drain lead, checked my pee colour and said to the nurse to get the necessary prescription from the Pharmacy – she seemed to say that would not be possible as it was the week end.
He asked me if someone could collect that tomorrow, Sunday?
Not a problem.
Then he said ” I’ ll just make a couple of phone calls….”
Moments later he returned to say the Prescription was en route!
Out came the lead, fresh dressing; out came the catheter,by himself and I was ready for the off.
What can you say in gratitude to a consultant, who goes to such lengths,in his own time,to help his patient? ” I was just passing” he said, with a smile.
It is something I shall never forget,amongst many things I would not want to recall!

Someone described the “keyhole” surgery I underwent with MR Ibrahim,as
” Painting the hall, landing and stairs, through the letterbox”-Such skill!

Tuesday 8 th July, 7.20 am, Ward 10, Heartlands Hospital.

I thought I should try to recapture these last few days, since entering hospital ; I have left it till now for no other reason than my inability to write, brought about by frequent bouts of stomach cramps and general nausea.
Add this to the difficulty of sleeping, in what is a very quiet, 6 bed room on Ward 10, it is as near to mental , physical and emotional exhaustion as I have ever experienced…This is not lay the blame anywhere, there is no one at fault…only the hand life has dealt and trying to deal with it.

However, shifting the mood, I have so much gratitude to MR Ibrahim, my Urologist-Consultant and the team that worked with him , during my 9 hour, marathon operation,Thursday,3 rd July.I believe there were at least three surgeons present, including a Mentor from Stoke-On -Trent, plus anaesthetists.
The procedure before the surgery was straightforward – an enema for starters, followed by a walk to Theatre.
There I sat on the operating table, whilst an Epidural was inserted Into my spine, where it remained for 3 days.
Next, I was put to sleep and came to 10 or 11 hours later in Intensive Care Unit, or organised “Bedlam”at times.
Only permitted infrequent “sips” of water.
MR Ibrahim and one of the anaesthetists were there,when I came to, telling me of”success”.
Sleep was a roaring canvas of images , all ending in strange patterns engraved in the earth.
When awake again on Friday morning, I became aware of numerous leads and tubes, attached to my body.
Observing the activity in the ICU, was bewildering, with staff hurrying to patients, responding to bleeps and alarms from the variety of life supporting
monitors, writing down details of every temperature taken and urine passed. Rachel looked after me and she told me had done six months and had learned a great deal to enrich her nursing skills but it was not for her in the long term.
I don’t comprehend working 12 hour shifts in such highly skilled intensity, but we are greatly indebted to the NHS, that such dedicated people can be found.
To my relief, on Friday evening,I was transferred, eventually to Ward 10.
This was to prove to be a much calmer environment, but on in which, I was to undergo post-operation trauma…

( will take break now – need to both retain my objectivity and keep my emotions in check)

So, in the last fortnight, I had a pre – op appointment at Heartlands, where we managed to persuade the Nurse to kill two birds,I.e, for both the valve insertion and the surgery.
She graciously agreed and thus avoided an unnecessary visit to Heartlands.

Then there was the valve/ umbrella insertion at Good Hope , to prevent clots tracking up to the brain. Brilliant process,; impressive practitioners!

Fitness test last Monday,breath test then on a fixed wheel bike with 10 leads attached and breathing mask – Bradley Wiggins style…

Finally, meeting with the Urologist, Mr Ibrahim, to sign the consent form for the op.
He told me a mentor would be present during the extensive surgery – removal of bladder, pancreas and other bits and pieces – micro surgery.

So, it was with some glee and relief, we travelled down to Berkhamsted, for a couple of days with Dan & Nelly,Tom & Jake.
We had a lovely time.

That’s Tom Henry.
Then we have

After returning home, we took off in the Motorhome to Diamond Farm, near
Oxford – A gem of a site..boom, boom!
BBQ in th evening, World Cup.
On Monday we went into Oxford.I had never visited, being Hoi Polloi….
I was besotted with the place…what a privilege to study in such an amazing
setting.
Well, it’s all over bar the….

Wednesday – allotment, over to see Jude in Kings Heath,visit Dave A, to wish him happy birthday.
Take my pre-op drinks

Then to Heartlands on Thursday,3rd July @ 7.30 am for admission.
Surgery, High Dependency Unit for a couple of days afterwards.
On to Ward 10
Then,I have to demonstrate I can manage my externals…before discharge.

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left. ~”Hubert Humphrey