Tag Archives: cancer

Deciding between a rock and a hard place.

“Only you can decide” they say – oh sure, only me because it’s my body, but how the blazes are patients like me supposed to make these kind of choices? If we ‘google’ the conditions we are likely to be faced with so much contradictory information and opinion as to make it useless, and just going from what we are told doesn’t really help that much.
As I understand it the position is this. When the chemo finishes I will be expected to decide whether to follow it with radiotherapy and if so, which kind. Apparently the choice is between treating the full pelvic area, which is likely to be most effective for eliminating the chance of cancer cells reoccurring BUT can cause damage to the abdominal organs, or just vaginal radiation which by being more limited, is potentially not as damaging but is only effective for treating that restricted area. However, apparently it can cause scarring in the vagina which may cause it to close up (!!) though one can be taught how to use a dilator to prevent this happening. Additionally, because the womb has been removed, some of the bowel may get into that space and be damaged by the radiation anyway. Talk about ‘between a rock and a hard place’!
The other option is not to have any further treatment and to take the risk of the cancer reoccurring. This is my preferred choice at the moment. My reason being because as they reckoned they had removed the cancer cells with the hysterectomy, and the chemo is ‘just’ an extra precaution, I think the risk of damage to organs is greater than the risk of cancer. In any case, if cancer did happen again surely it could be irradiated or whatever then?
The risk of damage being done during surgery was quite low but it still happened to me, and the problems with the kidney drain which kept me in hospital were not common, but I was unlucky.
I have another three months of chemotherapy and I still have more surgery to undergo to have the stent removed, so quite frankly, I think I have had enough thanks very much.      I am loathe to chance my luck again.

Nothing To Report Sir, (but then again….)

I started writing a blog after being diagnosed with uterine cancer, primarily as a record of my own ‘journey’ but also as away of possibly helping others faced with the same life event.
Initially there was quite a bit to post. From my own and others reactions to the news, frustration about waiting, feeding my soul in general, mishaps in surgery, then first chemo. (See my other blogs.)  BUT since then there really has not been much to report/comment/moan/laugh about.  Nowt, zilch, not-a-hing, nutting, zero, sod-all – but then again…..
My second chemo cycle was more or less uneventful, but my enforced extra time indoors meant that in addition to doing the usual SCDA admin for the One-Act festival, and apart from  incorporating my scalp moles in a drawing cherries on my bald headMe being daft - so what's new! larking about at Christmas……….      I was able eventually to re-visit books I wrote many years ago for my grandchildren and publish two of them on Kindle.

My beloved Rainbow Dragon

My beloved Rainbow Dragon

‘The Rainbow Dragon’ was written after we took my four year old granddaughter to our bothy in Glencoe, and she was so delighted to go to the river to fetch water. The Rainbow Dragon character became very real to me over the years. As we drive in Glencoe I am wont to point out the wee bridge across the river as “that’s where Cherise met the Rainbow Dragon” almost believing it to have really happened, and it has always been  on my ToDo list to have it published.  I had the text of the book on e-file and a copy of it that I produced myself, so I finally got time to scan in the illustrations and tick my list . This is the link to the Kindle book

Connor and his sad friend Trevor the Tractor

Connor and his sad friend Trevor the Tractor

‘A Good Idea For Trevor The Tractor’ was written for my grandson at about the same age (or possibly a bit younger). He loved tractors – it was as simple as that – and the calling of “taktooor” when one is spotted has become part of tradition (well for me anyway) . The original book has been lost and I never kept a copy of it, but luckily when I was moving paperwork to Livingston, I came across a draft and some uncoloured illustrations, so I set about retyping it and colouring the drawings on the PC in ‘Paint’.   link to Kindle book here 

Today – Hogmanay – was my third chemo session and it went totally smoothly.  All traffic lights were at green, and there was hardly any traffic, so we drove there in a third of the usual time. Even the car park at the treatment centre had immediate entry (we waited 20 mins for a place last time).  Consequently I booked in an hour early and  was called minutes after.  Indeed all was so hunky-dory that I started getting my first drug infused at 11am – instead of 2pm both previous times.  I was finished by 3.45pm instead of 7.30 pm last time!
However – one thing that did happen was quite cathartic and worthy of note. An ex-work colleague who I had not seen for eight years, arrived to have (yet another) chemo session so came to sit next to me.  She is only in her mid 40s and has a young child, yet has been dealing with many cancers over a seven year period.  Every time she gets clear in one area of her body, the bloody disease appears somewhere else.  She started with breast cancer, then bile duct, liver and now bone, but she is not afraid and displays a wonderfully positive, yet utterly realistic, attitude to her sad prognosis of very short probable survival.  Discussing matters with her has reinforced my strong feeling that we have to live our lives in the present and very near future. We must squeeze every iota of  value out of our lives because we never know what is around the corner, in the skies, on the rails, across the road or flowing towards us for that matter – in flooded rivers or our own veins.   So maybe there was somat to report after all.

A Roller-Coaster

There it was ...gone

There it was …gone

Phew! That was a roller-coaster of a day! Got my hair shaved off, which was a relief insofar I didn’t have to worry about it falling out all over the place any more, but still is a wee shock to the system when it’s all gone.

 

 

I felt not too bad when getting ready to go out for a Christmas meal, especially when I did my eye-make up, but I had to get ready many hours before I normally would because of needing to do something else before said meal. My scarf tying wasn’t too successful and started to slip a bit, taking with it some of my confidence. Anyway, I got it sorted and wore a hat on top to keep warmer outdoors.
We had a nice time meeting and greeting our friend Gro from Norway who is staying as my guest in my flat for a few weeks, but as we were going around Tesco’s with her to buy groceries, my eyes started playing up. Firstly I felt as though I needed to blink a lot and the vision just wasn’t quite right, then they were kinda feeling hot inside hot and Gro reckoned the whites were going pink! So to continue with the roller-coaster …. I bought eye-make remover pads and did the deed in Tesco’s loo, which resulted in my confidence plummeting, but it rose again after I did a bit more titivating back at the flat, only to duck again as I realised the scarf was becoming undone when we were on the bus. We arrived at our destination with plenty of time for me to have sorted the scarf BUT we were at the wrong venue!
Never mind the details, suffice it to say it was my stupidity, so my stress levels were mounting now. Bus back to car, then drive to correct restaurant – able to fix scarf, didn’t feel quite so bad about no eye-make up and had a lovely time with Mercators drama group – until I went to get my purse and discovered I’d not got my clutch bag containing purse with cash, bus pass and debit card! I immediately reported it to the waitress who said she would ask the manageress if anything had been handed in and that she would check the toilet . No sign. So Walter went to check the car – no sign. I decided to double check for myself and there it was, exactly where I’d put it. The waitress had checked a different toilet!  So…. my roller-coaster ended in a good place eventually.  Mercators old and new.

 

I suspect there are going to be a few more like this but then as long as the chemo ride stops in the right place it’ll be okay.   I hope.

Aye, always live in hope Susan.

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 End And So It Starts…

At long last, at long, long last, I am rid of my nephrostomy , (kidney drain), and its accompanying bag. The stent repairing my right ureter has been replaced rather than removed, so will mean further surgery in a few months time, but I don’t mind that – all I wanted was for the blasted tube no longer to be sticking out of my back and for me not to be lugging around a bag of pee  everywhere.

The tube from the kidney

The tube from the kidney was then taped to my front. (Twisting round here to use mobile phone camera)

 

 

nephrostomy-006

Attaching the urine bag to my leg made it easier to cope with, but still annoying.

 

 

 

 

Perception of time is so weird – my hysterectomy was done on 23rd September, and the nephrostomy fitted on 27th, but the  six weeks that I have been cursed with it have felt far more like six months.  I hated it with a vengeance which is rather unfair seeing as it was actually doing me a favour.  I’d have been in a sorry state without it, but one doesn’t think of that at the time. Logic can only gain priority once the situation is in the past.

Anyway, it’s the end of that episode now but I have a date for my chemotherapy to start so it’s also the beginning. The dawn of a whole new chapter / project / challenge / adventure, call it what you will.

I knew I had to wait until the kidney drain was removed before the chemo would start, and suspected the medics might wait a wee while after yesterday’s surgery, so I am mega chuffed that it is being done so soon after all – 19th November, fewer than two days to wait.  I am feeling slight trepidation going into unchartered territory, but the main emotion is relief not to be hingin’ aboot before beginning the journey.  Six sessions over eighteen weeks will challenge my perception of time again no doubt. Here’s hoping while touching wood with my fingers crossed that it is more or less uneventful .  Superstitious?  Moi?

Onwards and Upwards

Wednesday 11th November 2015.

Strange how some days just feel different.  Today was one of those, ending with a nice calm feeling.

All my life the 11th of November has been a sad day because as well as being Armistice Day, it is also the anniversary of the deaths of both my maternal grandfather and grandmother. He was slaughtered in 1914 and she died seven years later officially of tuberculous but, according to family history,  ‘a broken heart’.  My mother was left orphaned at 14, so the devastation caused by war is something of which I have been aware all my life. This year, it has been a nice kind of strange day instead.

For a wee while now I have felt rather overwhelmed by all the work involved in planning, organising, sorting, packing etc., for moving into my partner’s home and preparing my own flat for renting . It was perhaps not the thing to undertake immediately prior to cancer surgery but I’ve never been one to do things simply.
Anyway, a couple of days ago my perception suddenly changed as I realised that slowly things are coming together, and today I noticed a complete shift in my feelings towards the whole project.  It is no longer as daunting by any means.
Because of the limitations imposed by my current health (or lack of, I have only been able to ‘supervise’ the sorting and packing while my partner, Walter, did the donkey work.  There’s still a long way to go before all my things are transferred and we create enough space to get other things belonging to both of us out of storage, but it all seems perfectly feasible now.

Some of Walter's and my 'previous life' being stored temporarily until room can be made for it in our joint new life.

Some of Walter’s and my ‘previous life’ being stored temporarily until room can be made for it in our joint new life.

When I went into hospital in September I felt the weight of the decision to move my home at the same time, even though I knew it made perfect sense, especially at a time when I needed so much practical support from my partner.  Then,  a problem during my hysterectomy resulted in an external drain from my kidney delaying my recovery and making me far less able to face much meanwhile.

I am an incorrigible hoarder and, as a result of memory loss arising from grand mal seizures from childhood to my 50s, I need my souvenirs, photo albums etc., as aide memoires.  I started dreading not having enough room to keep them but this doubt is fast subsiding.   I felt said weight getting heavier until I managed to get various drawers filled a couple of days ago and realised we are getting on top of it at long last.

I am due to go back into hospital on Monday 16 Nov to get the drain and stent removed, but this time I can go in feeling so much lighter.  I will then get a date for my chemotherapy to start but, rather than dreading it because it was going to be yet one more thing standing in the way of my plans, I am now rather looking forward to tackling it in the knowledge that other things are indeed under control after all.

Onwards and upwards….

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’.