Tag Archives: check ups

An Oasis Or A Mirage …… ?

It’s a year since my diagnosis of uterine cancer and my decision to blog about the ‘journey’. A few strained metaphors have been used – from going back in the water, to the fat lady singing via half full or half empty glasses, rocks & hard places, rollercoasters and devils & angels. I’m not quite back to the Fat Lady theme – she who had taken a breath for her last song – because although she has started singing right enough, she has another verse or two to go, so there’s no curtain call yet.

Ok, I’ll stop beating around the bush …. I thought that today would finally see ‘closure’ but sadly no. I had an ultrasound scan to see how my kidney is coping now that I no longer have a stent to assist my ureter. It’s no doing too very badly but apparently it’s still showing more fluid than they had hoped it would, which could mean said ureter is not working as well as it could. However, it also might mean that it is coping fine thanks very much, but once again I’ll need to give it more time to settle down (it’s only been coping on its own for three weeks), so I am to have a different scan in about six weeks. I don’t want to think about what has to happen if the kidney and ureter prove not to be coping. Nope – not going down that road yet!

Somehow the impetus to write has waned and any wit has gone AWOL. This in itself is disappointing, especially as I have started trying to collate my diary musings into a book, but after a year any new insights into the situation have kinda fizzled out.

I suppose this is entirely to be expected the further from the treatments I get, after all it’s four months since the end of the chemotherapy. My hair is re-growing and is now at a stage of just looking like an ordinary short style rather than a ‘survivor cut’. My twinges and niggles are minimal, though the eyes spontaneously overflowing continue to be annoying, and my energy is still disturbingly erratic. I managed to perform five consecutive nights at the Fringe thanks to taking it easy during the daytimes, including having wee naps, so most things are returning to more or less normality, albeit with minor adaptations .

All in all I am on a plateau – back to the strained metaphors……. I am in a desert with the sand stretching out in front of me as far as I can see, but I have it on good authority that there is an

Journey's End????

Journey’s End????

oasis over the horizon . I have to believe it won’t turn out to be a mirage.

This Too Will Pass

“This too will pass” has been a phrase rattling around in my brain for ages – in fact every time I have felt, or do feel, miserable about yet another event in my life or the effects of my treatment, it makes itself heard. My whole reason for starting to blog about the cancer journey was so that I could have a record of how it felt to be me as I travelled it, because my memory alone would not be reliable.

I occasionally used to be aware of days that felt like weeks and others that passed in a few hours, but in the past few months this time-disconnection has been so exaggerated. Perception of time has been more weird than usual since August 2015 when I was diagnosed with uterine cancer. That month was the worst, because it was after diagnosis but prior to surgery in mid September, and waiting for appointments or results seemed excruciatingly slow.

The rest of September and beginning of October wasn’t too bad while I coped with all the trauma of the operation whoospie which resulted in further surgeries and complications, but the latter part of October and early November dragged again until I started chemotherapy. The period from mid November to mid April was even weirder because during each chemo cycle the time was stretched out, yet the six of them seemed to have passed quite quickly once they were finished, despite a hospital admission delaying the final one.  I moved to live with my partner in September and started getting my own flat ready to be rented out – this lasted until March.   Admittedly it perhaps wasn’t the least stressful thing to do while having cancer surgery and chemotherapy but was necessary all the same – I don’t think I could have coped if I had still been living alone.

Through all those months, whenever I was lying there hating the kidney drain, or sitting watching poison being dripped into my veins, or feeling as though every ounce of energy had deserted me, or seeing every hair on my body disappear, or being driven scatty with issues in my flat,  I kept telling myself “This too will pass” and it did.  Since mid April time has rocketed by, and this week I had my three month check since the last chemo. I could hardly believe it had been that long.

Undergoing the treatment didn’t stop my activities although it did curtail them a bit. In February and April I organised and administered one-act drama festivals but I didn’t start back volunteering at The Scottish Community Drama National Script Library  until May.  In December I finally got around to getting two children’s stories I had written many years ago  on Kindle, then this last week also published them as hard copies.   I used to design my own knitting patterns but hadn’t knitted for 20 years, however, last week I started to learning to crochet and this week have been making a jacket in rainbow-coloured wool to my own pattern (how successfully is so far unknown!)  My partner has re-kindled his model railway plans after 15 years so I have been lined up to help with modelling the scenery – another totally new project to add to the great tapestry of life.

At this moment in time – the day before my 69th birthday – I do occasionally have a crash of energy, I still get frustrated by my toes paining, my eyes spontaneously weeping or my peeing bloodied urine, but I console myself knowing it is temporary.   My hair is growing back, my energy levels are much better, and the chemo-brain business has stopped (still have senior moments but it’s different to chemo-brain). I still have at least one more surgery to go through and there continues to be uncertainty about how successfully my damaged uterer will have been mended, but it will all be over soon. Although my perception of ‘soon’ might be different from one day to the next, I know all I have to do is to hang on in there and let the time-perception-distortion machine do its trick.

Above all, distorted as my perception of time might be, I am grateful to have plenty of it spreading out before me.   Others on the cancer journey have not been so lucky.

The “Fun” Begins

Well, this is “fun”  ……    Some side effects have kicked in, and I use that phrase advisedly.
I had great energy on Friday and Saturday with no sign at all of having had toxins pumped into me during my first chemotherapy session on Thursday, but on a wee walk on Sunday things began to change.
I am a good walker, so, even though I knew my fitness would have been compromised by the four operations in the past few weeks, I was a bit surprised at feeling depleted after about a mile and half over flat ground, but didn’t assume it meant much.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

Linlithgow Loch has a circular, and flat, walk of 2.3 miles.

My partner, our fellow ‘Intrepid’ and I were having a good day out with plenty of laughter as per usual, and I felt confident that all was right with my world, feeding my soul on the simple beauty of the Loch . The peace of mind that comes with being outdoors and having fun with great friends is the best therapy for any malaise in my opinion.
Later in the evening I started getting weird crampy feelings in my feet which developed into lots of achy but sharp twinges in my legs as well. My first reaction to the cramping was to describe it as being like neuralgia but at the same time it still felt muscular. Perhaps ‘weird’ is the closest description – almost as though I could feel something travelling inside them.
It was making me twitch as the twinge aches got stronger, which became very disconcerting and I had a bad night sweat.
All day yesterday it was the same with occasional, additional  feelings of weakness in my legs, then in the late evening the sensations were also in my hand and occasionally my abdomen .
We read the Cancer Treatment Guidelines from the start, which have a traffic light system to advise patients.  We were carefully monitoring my temperature, ticking (or not) the descriptions of the various symptoms, and I still seemed in the ‘green column’ but, as the symptoms increased, (I started feeling shivery yet being hot to the touch despite my temperature being normal), we realised it had changed to amber, so I rang the cancer helpline as instructed.

The upshot was I was referred to St Johns Hospital, arriving just after 1am.  The assistant advised me to take things for an overnight stay, just in case – ooh, this was getting seriously ‘fun’ now.
The doctor took all the obs and gave me a thorough check-over then, when my blood test results came back okay, I was allowed home at 3am with the proviso that if there was any further concern I contact them again immediately.  Actually, to my great relief, the symptoms had died down quite a lot during that period, so it was fine by me not to be staying overnight.
The annoying sharp twinges have not returned but, when resting, my legs and feet are still aching as though I have walked 20 miles, and when I do walk there’s a really weird sensation inside them.

I loved the premise of the cartoon film ‘Inside Out’ with all the wee characters being involved with one’s emotions and memories, and  can imagine demented little Pacman type thingies running round my veins chasing white cells to destroy.  By gum, they are clumsy little buggars .   I can only hope this “fun” is temporary.

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’.

The Devil and The Angel

This last week has been a strange one. I’ve spent the last four weeks feeling frustrated and pissed off by the waiting for my surgery,  yet a week ago at my assessment appointment everything changed when I had two of those devil/angel shoulder moments .  While still waiting to see the nurse consultant my ‘shoulder-devil’ prompted me to moan (yet again) “I still have a whole week to wait, a whole bloody week!”. Then not long afterwards when discussing the sorting/culling needing done at my flat before going into hospital my ‘shoulder angel’ elicited from me the remark “blimey, I’ve only got a week to do it”.    Honestly!

Not long afterwards the pair were at it again. The wee devil bemoaning the fact that I will be surrendering myself to the knife which will cause me pain, followed almost immediately with the realisation that I willing did precisely that when I underwent tattooing – twice!    Now come on – getting rid of cancer is a hell of a lot more justifiable reason for submitting oneself to a bit of pain than is a pretty butterfly skin decoration!
So – ever since then I have felt completely differently.   I am relaxed about the surgery and I feel calm about needing to take a back seat for a bit activity-wise.  I must add though that the tremendous support, encouragement and sheer love being shown towards me by friends has been totally overwhelming.   How could I not be inspired to overcome whatever is ahead.

12006457_10205152998484487_9828867155707189_oMy wonderful partner fed my soul by taking me to the Scottish Highlands on two consecutive weekends. I am a very lucky girl.

Pardon? Everyone mumbles nowadays!

Pardon?   What did you say?  Sorry..?   Eh?   Come again?     By gum, everyone mumbles nowadays……

Over the past decade or so I have made a few faux pas hearing-wise:-   I thought the President of my drama group said “The most important thing is Celtic”….it transpired to be “The most important thing is to sell tickets”.  I could have sworn my grandaughter was singing along to “Go recycling”  (turned out to be ‘Go Greece Lightning’).  There have been umpteen of them over the years – all laughed off.  Then last week I honestly thought my partner was using the wrong word as a joke when he announced in response to my query about how he’d got on with his bike “ok, no trouble with my vagina” ….a split second later I realised he had said angina but not after I had almost choked on my coffee and everyone else in the room became aware of my mistake.

I know everyone mishears, I do not for a moment think this is anything much to worry about, but people have been mumbling a lot more lately; at the theatre  I’m always saying “I can hear the sound but can’t make out the words” and I find it almost impossible to tell what someone is saying if I’m not in the same room as them.  So, when I received an appointment for a check-up at  Hidden Hearing I went along.  I have had these check-ups for the past three years and each time have been told I didn’t require assistance equipment, but this time my results were much poorer and I was advised to think seriously about wearing a hearing aid.

If I do decide to get one it won’t be a big thing like those NHS hearing aids, mind you, I understand they have improved in recent years!

Seriously, it’ll be the teeny weeny computers with an almost invisible wire that I choose but the trouble is they are not inexpensive. 

So, I think my next step will be to see if I can get a second opinion re the need for assistance by asking my GP to refer me to the hospital, then, if they agree I need help I will go back to HH and bite the financial bullet.

Ach weel – they do say old age doesnae come itsel’