Monthly Archives: October 2015

The Glass Of Life: Nightmare Glass?

31 October

I’m soooooo pissed off with my body being completely perverse that I’ve got to the point where I absolutely hate the nephrostomy with a vengeance bordering on obsessive. It’s becoming a nightmare so perhaps this is quite apt for Halloween.

I have a date for the surgery to remove the kidney drain (16 Nov) so I keep telling myself that I have to think of the time left as ONLY another fortnight. However, it’s awfae hard not to think of it as YET another fortnight!  So, I have to decide if the blessed Glass Of Life is half full or half empty.  Is it Trick or Treat time?

Is it ONLY two weeks or YET MORE weeks of every day, nay every bloody hour, checking the blasted thing in trepidation, never confident that it’s still working – consequently never knowing from one day to the next if I’ll be going back to hospital for flushes? ONLY two, or MORE weeks of not being able to sit down or turn or bend without the blasted thing  twingeing? ONLY two, or MORE weeks of  skin being demented by having the tubing taped to it? ONLY two, or MORE weeks of having to lie in one position to sleep?  ONLY two, or MORE weeks of never being able to believe signals from the bladder – “warning, I’m full, empty me immediately” which turns out to be “only kidding, not got a drop to spare” ? ONLY two, or MORE weeks of feeling every blessed bump in the road so that even the shortest journey is a trial?  ONLY two, or MORE weeks of wearing padding around my middle to protect the tube, which stops my clothes fitting properly?  Most importantly, ONLY two, or MORE weeks of having a bag of piss fastened to my leg?

It gives a whole new meaning to my alter ego of being a ‘bag lady’

I know in the great scheme of things my irritation and frustration is minuscule but even wee nightmares can spoil one’s dreams.

My other persona as Kate, the bag lady, in one of my favourite plays.

My other persona as Kate, the bag lady, in one of my favourite plays, ‘On The Outside’.

A Bit Of A MishMash

This blog is a bit of a mishmash with no proper overriding theme, but perhaps the almost-theme is little things meaning a lot.
Oct 23. I’ve been home a week now. The day after I was discharged we lost electricity.  We were offered hotel accommodation but we decided to stay home because we still had light and one socket by which we could brew up, charge phones etc.   So many little things couldn’t be done – by gum, don’t they all start meaning a lot!  We don’t realise how many things depend on electrical power until it’s not there.  A temporary fix was done the next day and a major repair will take place next week when once again we will be without power for a day.

It was a good job we stayed home because at 6.30am on the following day my nephrostomy wound started bleeding and I got the awful dread that Groundhog Day was back again. However, all was well eventually and it has been stable ever since, with just two days when there were tiny spots of blood from the wound. The drain has been working well and I’ve been peeing too, so I can be content that the left kidney is taking its share of the work. It’s funny how things like how much one pees and what colour it is, all start to matter and be worthy of remark. ( Pale amber aka ‘white wine’ is best ye ken.) Little things mean a lot.

Bodily functions dontarf gain in importance. When I was recovering from the first surgery I was in a lot of pain in my back and my abdomen became distended and hard. The former was as a result of damage to my ureter (see other blogs) and the latter because of trapped wind and toxins. Once I had a nephrostomy my kidney pain was eased and to my great joy I started farting which made such a massive difference to the rest.  Lesson from all that: never underestimate the importance of getting rid of flatulence folks – little farts mean a lot too. I reported it with great delight in texts to my partner and to the surgical team on their morning ward round – much to their amusement.

Small actions of support can be so valuable too. For instance, when I was first diagnosed, my partner immediately suggested we go for a drive to the Highlands, something which never fails to lift my spirits. When I am amongst the hills and the trees and the clouds and the water and oh! just absorbing this wonderful land of ours, my soul is fed and cares reduced.  11039845_10204965326752811_3696481917482359627_o

Feeding my soul in the Highlands.

 

 

 

 

How do I feel about the chemotherapy? Buggered if I really know. My first reaction was to be relieved that at least now I know what is ahead, the waiting was definitely the worst part. My second thought was to be very concerned about being sick – about which I was reassured – apparently nausea is not as much of an issue as it used to be, thank goodness.. I was not too worried about the idea of losing my head hair, although eyebrows and lashes could be tricky. I hope it means that my budding moustache and beard will go too and save all that pecky plucking (!).  That’ll be a little thing meaning a lot to me.  Since then have read more about the possible, and probable side effects, and it’s all very daunting, but with support from folk who have been through it themselves and others who will do their damndest to help, it should be do-able.  Allowing myself to get depressed would seem almost like letting them down, but sometimes staying strong is not easy.

One thing I am certain about is that I want to be rid of the external drain before starting the treatment. It’s a real nuisance having a bag of urine strapped to my leg (!), fitting clothes over the extra padding to protect the drain from getting knocked, and not being able to get comfortable in bed or in a chair – so I don’t want to be messing with that when I am feeling no-too-very-weel from the chemo. That may be a little thing to others but means a lot to me.

The main feeling at the moment is one of running on quarter power. It’s as though part of my umph-supply has been turned off. It’s probably a good thing because it seems to be preventing me from getting stir-crazy, but I am so very unused to not really being that bovvered about much.  Ach weel, I suppose my little things are going to have to mean enough for now.

The Glass Of Life: Distorting Reality

After I had my first surgery I was in quite a bit of pain (see previous blog) and very lacking in energy, so really sleepy most of the time. They were weird sleeps though, and I came to think of them, and later hallucinations, as distortions in time. For instance, I thought I was really sleeping for a while but as I looked at the ward clock each time I woke up, I found that it was only moving on by five minutes from the last time.  This went on for hours in total – all in five minute sections. I felt totally disorientated by it.  I was on a lot of painkillers and (unbeknowns to me at the time) my body was also battling its own toxins so perhaps it wasn’t surprising after all.
The following is taken from notes I made on my phone at the time to make sure I remembered the experiences …..
” Hallucinations;  Walls:  plain or multi-coloured with various textures including crumbling. They are usually moving as though I am travelling along corridors – like being on a hospital trolley. Sometimes swerving round corners, usually fast. The walls  range from silky textured tent walls to crumbling ones with moving rocks and (after feeling particularly angry) a cement one with a wide red stripe. Another was a dark “sky” with other darker shapes making patterns. All come when my eyes close and vanish immediately on opening.
Characters; real people rather than cartoons but highly stylised Dickensian / Hogwarts / Hogarth /Sweeny Todd types with exaggerated movement, costumes, hair and faces. Usually moving around, sometimes floating and coming right over me. Occasionally more modern people who are cleaner and quieter. E.g. I went to rest after texting Walter to ask a friend of ours if she knew anything about them. At that time a modern day nurse appeared in the corner saying something which I couldn’t really hear but understood to be about my query and explaining something which made sense at the time but I never actually recalled what it was.  For a moment I actually thought someone was there really speaking to me but, as usual, when I opened my eyes, they were not.
On one occasion when I was feeling really hot, some characters appeared and wafted the curtains around the bed to create a draft – which I felt. They were so realistic I opened my eyes to see who was coming in but of course there wasn’t anyone. I was disappointed to lose their help.
Only one character was actually threatening. A male with a large mouth who floated over me saying something like “losing the plot Susan” . I just got rid of him by opening my eyes.
More rarely there are teeny weeny insect-sized types scuttling just at the edge of my vision when I’m typing on the phone . Can never move my eyes to watch them. They are different by not waiting for closed eyes before they appear.
Film /show extracts: there have only been two and were experienced while actually sleeping. Very detailed, including sound and colour – just like watching Netflix!  The film extracts were great and I enjoyed them at the time.

Some of the characters’ shenanigans do amuse me too, but I don’t want to keep them around. Mind you, it might be entertaining occasionally.
I found that by setting radio very low, just keeping in one earpiece, I could have the music further in the background. It then diverted my brain and I was hallucination free. Well almost. I’ve found it’s the predominant stimulus that rules so there was one . I did more yoga relaxation in addition to listening to the radio,  to give myself the best chance of resting.  A modern character sneaked to my bedside. As I was almost asleep after feeling smug about my radio / yoga subterfuge, when I became aware of a woman at the bedside who was chatting quietly. As usual the words were not recalled but were comforting. I realised what she was and hesitated before opening my eyes, but did open them because I want to stay in control of whether these folk get in.  Since then no others have appeared.  Miss ’em.”

I never took LSD or anything like that but I would not be surprised if this is what users experienced with it.  I got it free too. 🙂   Does this ‘ring bells’ with anyone else?

Talking About The Glass Of Life ……..

My friends on Facebook have said I can moan so, I have decided to start now. Well ideally it will be a blog of my journey through dealing with uterine cancer, but unfortunately the first part of this journey has been a pretty rocky road.

Wednesday 23 September 2015 – Admitted to Royal Infirmary Of Edinburgh for hysterectomy via keyhole surgery. All went well …. or so I was told when I came round. However, I had a lot of pain in my back, an extremely bloated belly and was gradually becoming weaker. It’s far too long and miserable a story so suffice it to say after paracetemol, codeine, Trimadol and morphine wouldn’t shift the pain, and I had projectile vomited despite only having water for four days, more tests were carried out which indicated that (so far unknown) damage had been done to my right ureter – the tube which connects the right kidney to the bladder.  So….
Saturday/Sunday 26/27 September saw an emergency transfer to the Western General Hospital took place around midnight. (By gum, I had no idea there were so many uneven roads in Edinburgh – I felt every bump! ). By Sunday morning my right kidney was brick hard and I could hardly move, my energy level was so low. I was taken to the emergency operating theatre where an external drain was fitted to my kidney . Oh the relief!
Monday 28 September 3am – copied from notes on phone
“Just woken up and my first thought was “wow, life is good!”, I’m lying in my hospital bed in bay 20, ward 57, Western General hospital , Edinburgh unable to get my netbook because of oxygen tube, fluid lline, bladder catheter and kidney drain so using the ever faithful phone . But yep, life is good – especially when compared to this time yesterday! (Witness English gift of understatement!)   [This was reference to the absence of pain].
I’ve just had a great wee dream replaying scenes from a film, [more about that in another part].
I have the most amazing group of friends supporting me and all I can see in front is improvement. ”
Later Monday 28 Sept:- Another surgery, this time to fit a stent in the damaged ureter and hopefully the removal of the emergency drain, but the latter wasn’t to be because the damage turned out to be more extensive than first thought, insofar as instead of a tiny nick or stray stitch as suspected, a 1cm piece of my ureter had been heat sealed by mistake.  This dear friends is when my world kinda started to implode a teensy weensy wee bit.

Incidentally, when they came to get my permission for the third surgery and were once again going through the possible, yet “very unlikely” risks, I put a stop to the nonsense explaining that I took Tamoxifen knowing that there was a risk that it might make me more vulnerable to uterine cancer but judged it was worth it for protection against further breast cancer. All the risks about keyhole surgery were explained to me when I had my diagnosis, but what option did I have really – I could hardly just leave the cancer to grow . So,  I just signed again hoped that my luck might hold out this time.

Anyway, I came round from my third surgery in five days to realise that the drain was still there, so felt extremely disappointed even though I knew it was a possibility; then I heard the recovery nurse on the phone desperately ringing around wards trying to find a place to send one Susan Wales who he had in his care because “we close at six-o-clock”.  Anger boiled up inside me. I don’t do tears – (never mind why for now – I just don’t),  but when I got his attention I made it very clear that I was extremely dischuffed – what a thing to wake up to!  To be fair he was really lovely and coped admirably with the obnoxious Englishwoman.  It was only that particular recovery room that closed so he took me to another one and stayed with me until around six fifty  when I was eventually found a bed in ward 56 .  He even visited next day to see how I was – poor fella he really had copped it from me initially!

Once in ward 56 I asked if they could let my partner know I’d been moved because I couldn’t ring him myself as I had none of my stuff. They assured me he did know and that they would have my possessions brought through from the other ward (which incidentally was accessed by a communicating door – it wasn’t the other side of the hospital).  Time passed…. and I became increasingly stressed by Walter not turning up.  I borrowed a pen and gave them his number again (luckily I could remember the landline – everything else was in my phone, which still hadn’t appeared.)  Nothing – zilch.   Eventually I borrowed another patient’s mobile phone and rang him in a high state of ….. well in a high state.  He had asked the nurse on reception duty if he could visit and had been told no because I was too drowsy!   Drowsy?  Bloody drowsy?  I was about as far from being drowsy as someone very, very far from drowsy can be!  I was incandescent with rage – drowsy?!  Anyway, while Walter was on his way in, I spotted one of the surgical registrars who had attended me on the other ward and asked him what the heck was going on.   He then told me what had been discovered about the extent of the damage and explained that the nephrostomy (kidney drain) would need to stay in for around six to eight weeks to allow the ureter to heal, then there would be another operation to remove it. However, if radiotherapy was required to treat my cancer it would need to be delayed otherwise it would compromise the healing of the ureter and probably necessitate open surgery at a later date to replace it. Oh great!

Och, I won’t bore you with the rest – suffice it to say poor Walter did get through about half eight(risking a speeding ticket all the way apparently)  and eventually he retrieved my things about nine.   I did calm down but this had not been such a good start to my cancer journey after all.  I am usually determined to see the glass of life as being half full rather than half empty but by gum – this time the glass itself had vanished!

BTW: I have had worse midge bites than the wounds from the hysterectomy. Not a single ache did I experience from it – even to this day over three weeks later. Maybe because it was drowned out by the pain from my kidney but even so – it was a doddle, if only the other thing hadn’t happened.