Monday, April 26, 2021

And now...

So it's been a month since my last post, two more chemos done, and the reduced dose/change in meds has made a huge difference. I am still really tired and have a number of side-effects, but progress is being made. Mostly, as it happens, in my garden.

One of the challenges of cancer, and the treatment regime, is the emotional toll it takes on you - not just the physical one. And being in my garden has been very good for me. Although I get very tired and sometimes run out of energy, I've managed to be outside (weather permitting) almost every day.

We've had a hot April with frosty nights so it's not been the usual gardener's calendar, but I've grown lots of plants from seed, and also (with help of course) converted a part of the garden into a mini-allotment where I have potatoes, peas and sweetcorn planted. When the frosts stop, my baby cabbages, sprouts and other veggies will go out there too. 

I do a little at a time, and rest a lot, but being in the fresh air and sunshine, and going for (short) walks with the dogs in the forest has helped my mental health as well as my ability to cope with the physical demands of cancer.

I've made some planters for some of the veg and flowers, and although they lack finesse, they certainly do the job. I do like working with wood and will, when I have time/energy, start to deconstruct some more pallets so we can  make more things for the garden.

The next stage medically is a scan and then a review to see if I am actually cancer free now (hopefully). They will then decide how many more chemos I need - I've had five, and could have up to twelve. But it will depend on the scan results and also the levels of my side-effects. There is a balance to be struck between the medical benefit and the chemical impact.

The reversal operation for my stoma will probably not be for quite a while - there is a huge backlog of operations for the NHS and tmy surgery is not a priority. That's OK - I can live with Ripley a bit longer. 

I want to get back to 'normal' (don't we all in these strange times),  I really want to get back to work, back to living the identity that doesn't have 'Cancer' stamped all over it. But in the meantime I am enjoying the wildlife in my garden, and the satisfaction of growing (and eventually eating) our own produce. 

Liked this? Try....

Pond life


Sunday, March 21, 2021

Living with Ripley

Tomorrow is my third chemo and because of the rather unpleasant (understated) side effects, tomorrow they will only be giving me one of the two drugs. The one they are dropping is only about 5% of the efficacy, so it won't make a huge difference medically, but should make a big difference to side effects. I've been unlucky, I've reacted badly to the chemo, but it still beats having cancer.

But on to 'Ripley', which is our fond name for my ileostomy. Luckily for me it is a temporary solution, but given that there are literally millions of people waiting for surgery due to the pandemic, it's unlikely that I will have my reversal operation any time soon. So here I am, now one of the several million people in the UK that poops through my tummy into a bag.

From Wiki - source not credited
Living with Ripley is not too bad - it took some getting used to, but now we have a routine for the change (every other day) and managing the skin. When skin is covered up (the edge of the bag around Ripley is around 3 cm all the way round) 24/7, and when chemotherapy turns my poop into chemical warfare, then keeping my skin healthy is a challenge. 

But it's a challenge we are working with, and thanks to my amazing partner, I have not suffered any really serious skin problems. Ripley itself has a few quirks, including a fistula (extra hole) and some granuloma, but I visit the stoma specialist nurse next week too, so she will advise if any extra care is needed.

Living with Ripley going forward is going to be interesting. Unlike the usual exit, there is no muscular control over the stoma, so I have no sensation (there are no nerve endings in the bowel) or forewarning of when my body processes waste, whether it's solid or gaseous. (I say 'solid', but it's only thanks to multiple tablets per day that there is any solidity whatsoever.)  In other words, there is no urge - it just happens. Hence the bag, everything is neatly contained and manageable. But.... it makes noises. And it makes smells.

For now I'm somewhat glad that when I return to work it will most likely still be working from home - but I'm going to have to forewarn my colleagues about Ripley, because there's absolutely nothing I can do about it. 

I'm hoping I will have the reversal operation, but when there are people in pain waiting for hip operations, people with other illnesses and injuries that desperately need treating, I am quite happy to go to the end of the queue and live with Ripley that bit longer.

Some different posts from this blog:

Wednesday, March 03, 2021

Round two

Gardener mouse from 'Not on the high street'
I have my next chemotherapy on Monday - with the dose tweaked. My consultant said that they will adjust the chemos to minimise the impact, and one of them they can stop if needed. I have to report my  side effects as they start.

In the meantime Sheena has been doing my line care, and taking my bloods. It's quite a process and I lie in bed (with the electric blanket on, mmm) and present my PICC for her to clean and change the dressings. We have step by step instructions from the hospital and a sterile line care kit. I read out the instructions and Sheena does the nursey bit. I think she enjoys it just a little. Makes a change from dog training I suppose!

Whilst I am feeling well I am keeping busy in the garden, building planters and sowing the early veg and flower seeds. But I have a nemesis! I have planted peas three times, and each time they have ended up being a mouse's dinner. I have also fed the mouse squash and cucumber seeds, so it's time for another plan. I've blocked one of the holes into the greenhouse with stones, and put the more delicious seeds inside a propagator. Let's see how smart that mouse is!

Useful links:

Other stories from this blog:

Tuesday, February 23, 2021

Change to the schedule

My lap companion

 I guess I underplayed how ill the chemotherapy made me. I was considered for hospitalisation on the following Monday, but managed to make it at home by rehydrating as much as I could.

The colorectal specialist nurse has cancelled my next chemotherapy and I will be talking with my consultant on Thursdsay to find out what happens - whether they will change the dose, or the space between.

There is an optimum time for the effectiveness of this chemo following surgery, so getting it done soon is important for it to work.

I will update fully on Friday.

Monday, February 15, 2021

TWTWTW

Some of the older generation may recognise the title reference to 'TW3' - which was a rdaio show called 'That was the week that was'. And my, yes it was a week indeed.

It's one week today since my first chemo, and today is the first day I feel well enough to blog and recount the side effects and other fun and games around a week that also featured a reprise of the 'Beast from the East'.

On Monday 8 February my hospital appointment was for 10am, in Ipswich. The chemo services have moved from Ipswich Hospital to the local Nuffield, and the journey was magical. Thankfully we have a truck - and living in a forest it makes a lot of sense. The truck was covered in snow but started and, even though the roads were frequently snow laden and drifts meant the going (even on the A12) was sometimes slippy, we reached our destination safely. The Nuffield in Ipswich is on the Foxhall Road, in a dip in the countryside, the the lane up to the hospital was truly a fairyland.


Sheena dropped me off (and stayed in the car, no point going home again in this weather) and I went in to receive my first chemotherapy. It was relatively simple, with the saline flushes first, then the first of the two drugs added intravenously through my PICC line. I started the chemo at around 12, and it took about two hours. The second stage was the application of my pump - a small plastic torus with a liquid centre that would slowly dispense the chemo into my PICC (and into my system) over the next 48 hours. My pump was slipped into a belt around my waist, and the line went under my shirt to where it connected to the PICC in my upper arm.

I felt a bit weird, a bit sick and tingly, but nothing like as bad as I'd thought I might be. These chemos affect your sensitivity to cold, so having it during a snow week was somewhat poor timing on my part. After a while, to ensure no drastic reactions, I was able to go home with Sheena. I'd been there from 10am until around 2pm - so a packed lunch had been handy. 

Occupying time during chemo

Sleeping with the pump and the PICC and, of course, my stoma, was a little uncomfortable, but I was very tired so didn't do too bad. Tuesday I felt tired and had a very bad headache, and my fingers - if they got the slightest cold - tingled and hurt. I managed a snowy walk but by Tuesday evening I was feeling awful. Sick, headache, exhausted. 

Wednesday I had to go back to the hospital to have the pump removed. It had nicely filled me with all it's contents. The roads were slightly better, but it was still a truck-worthy journey. On the Friday, we returned again to complete Sheena's 'line training'. She changed my PICC dressing, cleaned the line (took some blood and flushed with saline) and I nearly passed out. I went all dizzy - not sure if it was because it was Sheena doing it, or just because it was the culmination of a hell of a week.

The week was not easy - sick feeling, no energy, and no ability to concentrate. And diarrhea. It's probably easier to manage with a stoma, but nonetheless it was not fun. They often say you can't describe chemo exhaustion until you've felt it, and now I know first hand what that means. I spent most of the week either asleep or resting, or feeling listless and sick.   

However, I do believe it could have been worse (and may yet still be, I know), so I'm going to look at the positive. I was not actually sick, and though my fingers are still tingly (and I have to keep warm), I'm doing OK. Today I've started to do normal things again and don't feel like quite such a useless lump. It does make me remember how Sheena was during her chemotherapy too - hers was a much nastier concoction, and the side effects worse. And I know she doesn't remember quite how it was - she just remembers how much she had to fight to keep going. So I'll focus on that - I know I'm going to forget the worst bits, and start putting up more of a fight. 

Other posts from this blog

Monday, February 01, 2021

Further along the line


I had my PICC line inserted on Friday. It's a weird feeling - a long thin piece of blue plastic firstly (thank you local anaesthetic) entering my arm and then going all the way along the vein to end up floating at the top of my heart. 

First couple of evenings were rough, with some residual pain (you can see the bruising) and the odd feeling of being aware of the line inside - which is probably more psychological than physical.

Today we went back to have the line 'flushed', the original dressing changed and some bloods taken. It wasn't that difficult, but the process is very ordered. Basically I now have a tap in my arm (the red bit) and you can flush by putting saline in, and take blood out, the same valve. Means less needles, which is good.

Sheena watched and was instructed by the nurse - next time it will be her turn. But before then I'll have my first chemo, next Monday. That will mean the drugs plugged into my tap with a pump that will stay on for two days and back to the hospital to have the pump removed. Then back to the hospital a few days later to have the line cleaned and blood taken which will be done by Sheena herself, under the watchful eye of the nurse.

After that, it will be one week on and one week off for chemo (with the two day pump) and alternate weeks will be line care and bloods, done by Sheena. I am due 10 cycles, so this is going to take around three months. 

There are lots of side effects that I will share once they start hitting, but for now I'm aware I will be very sensitive to cold, have neuropathy (tingling/pain) in my hands and feet, and may feel sick. Oh, and blood clots are a possibility too, but we can keep an eye out for them.

I'm feeling nervous, but keen to get this started so that the end will be in sight. It will take some time to feel human again after chemo stops - but by then I hope the world will be a bit more normal and the NHS under less strain. Then, perhaps, my stoma reversal surgery can be scheduled.

Meantime, I've had my vaccine, I have my PICC line, and I have the most wonderful woman in the world to look after me. I think I'm lucky.

Useful links

Other stories from this blog

Thursday, January 21, 2021

Choices

As well as dog training, Sheena is going to
have to go back to her nursing days!
My chemo was due to start on 11 Jan, but with the new very contagious version of Covid, and the prevalence of it at our hospital, I asked if we could delay. It wasn't an easy choice, and I couldn't speak to my colorectal nurse as she was off, but in the end we decided on a delay.

Since then the chemo day unit has moved out of the hospital into the local Nuffield, as they did during the first lockdown. This keeps the chemo patients as far away from any risk of infection as possible - and the cancer ward has been given over to Covid patients. They are now postponing cancer surgery, I've heard, so I have been very lucky with my treatment so far.

My chemo schedule is now planned and I will be going to the Nuffield. I will have my PICC line inserted on 29th January, and my first chemotherapy treatment on 8th Feb. There will be line care, blood tests and all sorts in the meantime, with chemo infusions roughly every two weeks, via a pump that is removed two days later. Sheena is going to learn how to use the PICC line to take blood for me and to do the maintenance - lucky Sheena!

There are a shed load of side effects possible, but the most common are neuropathy (pain/tingling in extremities, something Sheena still suffers from more than a year on from her last treatment) and extreme sensitivity to cold, especially in the air. Those will be copeable with. I have to take a warm scarf and lunch to my first chemo session as it will be around 3 1/2 hours.

There is the possibility that I will get a Covid Vaccine as I will fall into the clinically vulnerable cohort - Sheena has already had hers as her immune system (even now) will still put her in this category. But for now it's keep calm and carry on. I will update after my first treatment. I may even post pictures of my PICC line.

Useful links:

Less serious posts:

Friday, January 08, 2021

There's no such thing as an original story

Chizel. Why not!
A good few years ago I started writing a novel about a 20th century woman who ‘time slipped’ into Medieval times. It fell under ‘Hero’s Journey’ in story theme terms, but the fun of the story was how a  modern woman faced and overcame challenges in a bygone age. I struggled with the language differences, I struggled with some links in the story, but I liked the main character. I wrote about a third of the story, with the plot fully outlined, and then I read ‘Outlander’ by Diana Gabaldon.  Basically, exactly the same premise as my story, but written sh*t loads better and with a much more interesting scenario (15th Century Scottish Highlands).  

For reasons other than the fact that the concept had been done 100 times better by someone else, I abandoned my poor lady in Medieval times (I wonder how she’s getting on?) and haven’t tried to write a novel since. I have written plenty of short stories (a few can be found on here), but the idea of writing a novel still taunts my creative muse.

A friend suggested I could write further on the infamous Matthew Hopkins (I’d already written a song about him), and I briefly flirted with the idea of time travelling the Witchfinder General to today – but he’d be right at home during a pandemic!

I’m therefore going to start thinking about what I want to write – it doesn’t matter if it’s been done before, or whether it is publishable or not, I just want to revisit the pleasure of writing. I won’t say ‘watch this space’ because if the last novel attempt is anything to go by, you’ll get very tired waiting.


Useful links

Liked this? Try ...

Monday, January 04, 2021

Health and safety gone mad

Pic from Smallbusiness.co.uk
It is often said that the rules and regulations around health and safety are ‘gone mad’ and that we are a nanny state. I disagree – although sometimes things may seem a bit ridiculous, have you stopped to look at the bigger picture? I did a bit of research:

The Health and Safety at Work Act came into force in 1974 (when I was too young to work more than a paper round). This was the result of the Robens Report, which was very concerned with the state of workers’ safety, particularly in the coal industry. Quite a bit has changed since the legislation has come into force, especially with regards to deaths and injuries:

                             Deaths               Reported injuries

1974                    650                      330,000
2019                    111                      75,000

These figures to me speak not just of the decline in coal mining (and related deaths and diseases), but that health and safety procedures have had a real impact. In other words, this legislation, along with an increased sense of responsibility by individuals, has saved lives.

So though some of the rules and regulations may be annoying, and filling out the accident book may be an inconvenience, overall we should not think it’s health and safety gone mad, but be thankful for the protection that is extended to us via this old, but wonderful, piece of legislation (who’d have thought I’d ever have something to thank Barbara Castle for!).

More info:

Liked this? Try...

Tuesday, December 22, 2020

Update and a request

MRI Scanner (C) Southampton NHS
My scan came back as looking good, and so are my bloods, so I am starting chemo on 11 January, with my PICC line revised date now 8th Jan. At least I won't have the PICC over Christmas. But of course with all the changes in tiers, and the spread of this new variant of covid, I guess it's not guaranteed. What will be will be - the most important thing is to look forward and tackle each challenge as it arises.

The side-effects of the chemo are not great, especially the neuropathy and the feeling of coldness in the extremities and the throat (meaning that cold air can make you breathless). And the idea of a runny tummy with an ileostomy doesn't exactly thrill me either - but whatever comes, I will deal with. One more stage in getting rid of Gertrude and her offspring completely.

Of course this doesn't guarantee that it will never come back, but I will have regular scans, so we will be able to keep tabs and if something suspicious does arise, it will be spotted early on.

And that's the purpose of this blog post - not to worry about the New Year, treatment etc, but to ask each and every one of you if you would do the following:

  • Listen to your body - if something doesn't feel right, get it checked.
  • If you need help, or feel like things are too much - ask for help. You are strong but everyone needs a hand sometimes.
  • Make sure you keep your scan appointments, and if you are due one and it hasn't turned up, then ask. Covid should not stop you getting checked; even if it can't be done immediately, make sure you are scheduled whether it's for a mammogram, smear or whatever. 
  • Support your NHS by using common sense and avoiding contact as much as you can - it's something that is going to hurt this Christmas, but it's important for all of us. Those with cancer - diagnosed or not - may be especially vulnerable.
  • Be kind. There is so much stress, so much sadness and loss - your kind word, gesture or deed could make the difference.

I have had a strange year to say the least - with Covid knocking my treatment schedule for six - but I'm here, and looking forward to 2021 and many more years too. I want to thank everyone for their support - from friends who I know well to those I am just 'social media' buddies with, to my family, the NHS who have been amazing, and my employers. 

I am not alone through everything I've been through and am going through, so my final comment is to thank my amazing partner, Sheena, for not only supporting me, but also helping my mother, who can be challenging sometimes!

Here's to 2021 - to the success of the vaccine, to common sense, and to kindness.

Useful links

Friday, December 11, 2020

The Coldest Christmas

It was the winter of 1946 and it was very, very cold.  In our community in the Mendips, we suffered terribly. The hills were covered in snow and the livestock were already in poor condition. The land girls did a good job, but the farm I lived on suffered a loss of a good third of our sheep due to them being in poor condition when the bad weather hit.  We were more or less trapped, and getting to the village for supplies was difficult; the old horse could only do so much.  

On a farm each day is the same – you look after the animals first. So, on Christmas eve we got up early and went out to find the sheep so we could feed them whatever silage we could dig out from the barn. But we couldn’t find them. Our day was spent with the dog and the horse, looking for them.

The days were winter short, and Christmas eve was cold, but bright, the hills draped in snow as if they were ready for a wedding. We went out again after lunch to look for the sheep, me, my brother and my father. Just the three of us. My brother Jeff was always a quiet lad, and since coming back from the war was even more withdrawn. He was happiest with the sheep, and his dog, so not finding them today caused him some distress, though the only way we knew it was because he was frowning more and hardly spoke at all.

Jeff took the lead with Scrap, the dog. She bounded up and down in the deep snow, her black markings standing out on the white landscape. The sun was low over the hills and shone bright, like a searchlight. If we hadn’t been so concerned for the sheep, it would have been a beautiful scene. It was hard for me to move through the snow, being the shortest, but I was determined to keep up with the adults. After all, at 13 I was just about an adult anyway.

Scrap barked, and disappeared - the snow must have been very deep. We headed towards her muffled calls and, wading through the snow, we found her digging. Jeff looked hopeful, anticipating finding the sheep perhaps, but Scrap had dug a tunnel in the snow not to one of our beasts, but to an old wooden box. We finished Scrap’s work and dug it up; it was old, black oak, and bound with brass fixings and a fastener with a padlock. Jeff looked at it in disgust, so I took hold of it, out of curiosity. Father just looked thoughtful.

We looked for the sheep until the sun dipped behind the lowest of the hills, and headed home in the weird light that you get when the snow is lit by reflection upon reflection. We trudged home, still looking for signs of sheep on the way, with Scrap bounding ahead happily, and me still carrying the small wooden box.

When we got home, I asked father if I could have the box, and he just shrugged. Jeff was totally uninterested, just tried fiddling with the radio to try and get some signal and a sign of life outside or small, frozen and desolate world. To me, the box was like a Christmas present, so I laid it by the hearth so I could open it in the morning.

Christmas eve we ate some bread and dripping, and went to bed early – Jeff hadn’t got a squeak out of the radio, and we were all downhearted at not finding the sheep. Father let out a huge sigh, and Jeff frowned some more. Scrap curled up by the fire, her tail wagging and her one white and one brown eye looking up at me as if to say ‘goodnight’.

Christmas morning broke and we rose, wished each other the usual seasonal greeting, and then went about our work. My job was to feed the chickens and I wanted to do it quickly – the snow had fallen again overnight but the blanket of white was almost insulating, and with the yellow winter sun, the world was glowing as the sun rose. The chickens were pleased to see me but not impressed with the few food scraps we gave them; they would have to scavenge and dig in the snow.

Jeff had taken Scrap to look for the sheep again, but promised to be back soon, he wouldn’t go far on his own. Father was busy with the horse and the cow in our yard, and having finished my chores I went back into the kitchen. It didn’t feel like Christmas – there was no tree, no presents, but there was plenty of snow. I thought about my mother briefly – wondering what she might have done for us on Christmas day if she hadn’t passed away with smallpox when I was just a babe.

I started preparing for the one thing that would make us feel like Christmas – lunch! Father had killed and prepared a chicken for us and I peeled some of the wrinkly potatoes we still had. And then, I heard a noise – a sort of muffled jingle. I stopped my work and looked around the cottage, trying to fathom the source of the noise. And I came to my box – the one from the field. The noise was coming from it, and getting louder as I got nearer.

Father was in the yard, Jeff was in the fields with Scrap, so being brave I picked up the box and shook it. The noise continued! Something in my head said that I had to open it and let out the sound so I put the box on the kitchen table to see if I could find remove the padlock. I put the box on the table and turned to our ‘everything’ draw. I found a bunch of old black keys, some from the cottage, others just collected over the years. And one, just one key on the bunch, looked more silver than black. It looked just about the right size too.

I fitted the key into the padlock and it turned. It creaked and was stiff, but with my small fingers firmly pulling the bar, the lock slipped open and I took it off and opened the box. Inside was a small bell – silver, bright and shiny as if it was new. As I lifted the bell out to look at it, the door opened and Jeff and an excited Scrap came in. “Found ‘em” he said. And, for the first time in weeks, he smiled. Father came in too; “There’s a cart coming.”  

I showed them both the bell, then popped it back in its box and returned to getting the chicken into the oven and the potatoes on the burner. We would need a hot meal today, and if we had visitors, I’d best put the kettle on.

The cart and its occupants finally pulled into our yard, with their horse steaming like the kettle. Jeff went out and rubbed the horse down and Father invited the Carters in. He brought them into the kitchen as I poured out a piping brew. “’Tis Martha and James,” said Father, “and they brung us Christmas.” I was a little confused until Martha, smiling and slightly steaming herself, came into the kitchen and put a large box on the table. “Presents,” She said, “and some vittles. Thought it would be good for us all to eat together today, seeing as how we are on our own too, just across the valley.” It must have been quite a journey from their small farmhouse. Jeff smiled even more; I think he liked Martha, and she was just about his age too. Father and James sat at by the fire to discuss the challenges of the terrible winter, and Martha helped me get more food on the go and set the table ready for a Christmas feast.

After a wonderful meal and more talk at the table than I’d heard in months, Martha brought the box with the presents out. There was a white handkerchief for father, a small bear with a red ribbon bow around his neck for me, and a penknife for Jeff. “We bain’t got no presents for you,” said father regretfully, but I had an idea and took the ribbon from the neck of my bear, and threaded the silver bell upon it. “Yes we have father, we have this Christmas bell for them.”   Martha was delighted and her smile made Jeff blush with pleasure. Since finding the bell we had found our sheep, and found Christmas. I hoped the bell would be as lucky for Martha and her father as I believed it had been for us.

Story (C) Carolyn Sheppard

Photo (C) Carolyn Sheppard (it's Royston, not the Mendips, but there you go)

Liked this? Try

Wednesday, December 09, 2020

Picc and mix

When I spoke to my surgeon a couple of weeks ago, I heard the word 'oral' in relation to preventative chemotherapy. I hung on to that! But... if you have an ileostomy like I do, then anything you take orally gets flushed out rather early on in the digestive system. So, when I met my oncology team today, the news was that I will be having chemotherapy intravenously.

There's two lots of chemo that I'll be having, and both have some side effects, but the one that is likely to cause peripheral neuropathy (tingling in the fingtertips, loss of sensation etc), is the one that I could stop if needed. One of Sheena's chemo drugs (not the same as mine) gave her neuropathy, and a year on she still has pain because of it. I'm not on such strong drugs, but even so - I am aware of the potential side effects, one of which may be diarrhoea (which won't be fun with a stoma!)


I have lots to read still, so I can understand exactly what is going to happen, and a few more appointments to come. Particularly on 22nd December I will have a PICC line inserted. So that's a cannula that will stay in me for the whole of the chemotherapy treatment, which will be at least three months. I will probably have my first chemo between Christmas and New Year, and it involves a pump that will take 48 hours to deliver one of the meds. I have lots still to understand about the process.

I was a bit shocked to hear that not only would I need intravenous, but that I'd have a picc line, but thanks to some helpful comments from knowledgeable friends, I feel a bit better about it now. I will have to have chemo every two weeks, but each alternative week I will have 'line maintenance' to make sure the picc line doesn't become an infection risk. So that's weekly visits to the hospital for 20 weeks.

So it's PICC and MIXed emotions for me - because though I don't like the idea of the cannula, it does mean that each time I go I won't have to have a new needle inserted, so it will save me being stuck on a bi-weekly basis. That's a positive.

The treatment is needed because one of 19 lymph nodes had a cancer in it when they examined the pathology (Gertrude had babies before being evicted), so there is the risk of the cancer spreading. This treatment will reduce the likelihood of cancer recurrence by 15%. Doesn't sound high, but if you switch it round, I would have a 15% chance (at least) of getting the cancer again without treatment. So, I am going to go ahead.

The team at Ipswich hospital have been amazing, as ever, and when I go for treatment at the Wolverstone Ward I will know some of the staff because of the time we spent there with Sheena. This time she can't come in with me like I did with her because of Covid restrictions. 

The end result will be that I won't have cancer. That's the end game, and that's what I am focusing on. To quote a famous marketing campaign, "F*CK CANCER!". 

Useful links

Other posts from this blog

Friday, December 04, 2020

Christmas movie season

Photo by New Line, Warner Bros., Miramax, RKO,
20th Century Fox/courtesy Everett Collection
Housebound doesn't mean I have to watch Christmas movies, but I confess it's become a bit of a habit these last couple of weeks. There are channels dedicated to Christmas films, and a regular two or three on some channels daily, so there's plenty of choice.

I now consider myself well informed on Christmas movies and have distilled the plot lines as follows:

1.    Small town beats the city every time

2.    The girl will fall in love with the 'home town' boy 

3.    If he has children, the lead man will be widowed

4.    If she has children, the lead women will usually be widowed

5.    The children are all perfectly behaved and encourage the relationship with a new potential 'step'

6.    Christmas is magic. Fairies and elves do exist, as does Santa

7.    Americans in movies can put up hundreds of extremely complex decorations in record time

8.    The lead man will have a talent such as wood working or some other art

9.    If the lead (male or female) has an ex who shows up, they will want to get back together and the     new lead love interest will catch them kissing

10.    It will end happily ever after at the last minute, usually on Christmas day

11.    Song written for the films (where a character plays them on guitar/piano) are usually terrible

12.    Setting the film in a real snow scenario is a lot better than the fake snow - especially as the poor    cast are usually sweating in the fake (warm) settings

I think that's enough - so with that information above, I think all of us could write a Christmas movie script easily!  I haven't found one yet with anything but a heterosexual love story. 

The benefits of watching Christmas movies that are so formulaic that you can guess the plot in 5 minutes? Simple - escapism, feel good, and some pretty scenery.

CHALLENGE!

I am going to give it a go (watch this space) so if you can, write a 1,500 word Christmas story including at least three of the the above points. 

Ready? OK - go! And if you want to share them, send them to me and I will publish here. 

Fun links

Liked this? Try...

Friday, November 27, 2020

The dog nose...


Before Sheena started her cancer treatment, her little dog Chizel was very 'clingy'.  He would nestle up to her more than usual, want to be on her lap - generally be closer. Once Sheena was diagnosed and her treatment started, he was keen to be as close to her as possible.

When she went for chemo at the hospital, Chizel would wait in the car and I would come out every now and then and check on him, take him for a walk, and when Sheena came out (and I drove home), he would want to be on her lap.

Chizel sleeps in our bedroom in his own little bed on Sheena's side. When my cancer treatment started (and probably before that actually), Chizel started sleeping on my side of the bed - with no nice comfy dog bed, just the floor. All thround the summer, through radiotherapy and after, Chizel stayed on my side of the bed.

After coming home from my operation, Chizel went back to his side and the comfy dog bed. I think the dog's nose 'knows'. We know dogs can detect cancer, Covid, Parkinsons, epilepsy  - there are so many amazing things medical detection dogs can do. I am choosing to believe Chizel, that my cancer has gone, but the team at Ipswich hospital want to make doubly sure.

My cancer was removed and the surgeon is happy that a good clear margin was taken all the way round, but one of the many lymph nodes they removed did have a tumour. So the next stage will be some preventative chemotherapy. I will now have to wait for an oncology appointment to find out what and when, and have more scans to make sure it's all going well.

The positive from all this is that the surgery went well and my recovery on that side is good. If Chizel starts coming back to my side of the bed, then I'll get worried! Meantime I'll keep on with the treatment that means I am going to live, and not have cancer, and get on with my life. Next year is going to be a whole new adventure.

I know these are difficult times, but if you have any symptoms that are even slightly worrying you, take action. Call you GP, get tested, because having your mind put at rest is a whole lot better than waiting until treament needs to be drastic. And if your dog or cat starts behaving differently around you, listen to them too.

Useful links

Other posts from this blog

Sunday, November 08, 2020

Bag lady

Pre-op pressure stockings
Monday 26 October 2020 I went into hospital for an ultra low anterior resection. Basically, removing a large section of my sigmoid colon and stitching together the two 'ends'. This is major surgery and I was told it would feel a bit like being hit by a truck. No one mentioned that the truck stayed parked on you afterwards as well.

The operation took more than 7 I am told. Laying on the operating table before going into theatre, surrounded by anaethetists and my consultant, another doctor popped in and said hello. It was Neil, who works for the Air Ambulance. 'Look after her, she's one of ours.' Those words - I can't express how much they meant. I knew they'd look after me, but his visit was extra special.

I had a canula put in my hand, and they rolled me onto  my side to put injections into my back as well, and then... blissfull nothingness. 

I woke being taken to the ward - and it's a bit of a blur exept the numbness in my left hand thumb and fingers felt wrong. They changed my drip and my hand began to feel worse and the canula (which was now in my arm and not in the back of my hand) hurt like hell and the vein swelled up like a balloon. I had an allergic reaction to one of the drips and a rash appeared all over my head, neck and front/back. They changed the drip quickly and filled me with anti-histamine.

Although I was pretty lucid the Monday evening - after that I was not with it at all. I couldn't reach my phone on the side table, and if I did have it, I wrote complete gibberish to Sheena. She was phoning the ward and had comprehensible updates from the staff, who were taking excellent care of me. She also updated my family for me. I didn't face time, I looked like hell, felt worse. 

On the second day they removed the dressings from the four scars on my belly where they had laparoscopically removed the cancerous colon. As well as the operation scars, there was also a wound drain from my ileostomy (bag 1), which drained out thin blood like fluid. I had the ileostomy (bag 2) which was so 'productive' they had to switch me to a high volume version. I was on a catheter (bag 3) for the first four days too, and of course I had fluids coming in (bag 4) such as saline and liquid paracetamol. Afer the anaesthetic and morphine I was also very very sick, so they added a nasal drain (bag 5). I hated that most of all.

The pain was not too bad - it was overall feeling completely exhausted, unable to do anything and not thinking clearly. Day two I was moved into a ward with five beds and my little DAB radio with headphones meant I could sleep. That was apart from the fact that at 10pm, 2am, 5am we were woken for obs and meds.


Day two I managed to get out of bed and into the chair for a couple of hours, but 'enhanced recovery programme' meant I was supposed to be out of bed and up and moving a lot more. On the Wednesday I got up, and fainted. I was rolled back into bed by the nursing staff and didn't make my move quota. On the Thursday morning I was still wobbly, but by Thursday afternoon I could get in and out of bed and managed a few more steps. 10 metres was an achievement! The PT team were great, encouraging but not pushing me beyond what I could do.

I was visited by my consultant on the Thursday who asked why I hadn't gone home yet - I think he was being funny! I still had quite a few bags attached, though the nose drain had thankfully gone by then. 

I was kept in the full seven days - with the wound drain only being removed on the Monday morning (and that was a very weird feeling as they removed a long plastic tube from my insides). Monday afternoon and I could go home. No visitors, only a couple of short calls, so seeing Sheena was amazing. The drive home was exhausting, and since being home (nearly a week now) I've done virtually nothing, but sleeping in my own bed and being down to just the one bag is wonderful.

I have a long way to go before I will be fully recovered, and with any luck they can reverse the ileostomy in six to twelve months, but in the meantime I will be taking care so that I can get back to as normal a life as possible, as quickly and safely as possible.

Thank you:

  • Neil, for the visit that boosted me before the operation
    The best nurse in the world! She has to inject me 
    every evening with blood thinners

  • Mr Morgan, for being a very talented surgeon and doing such major surgery laparascopically 
  • The theatre staff, it must have been a long day!
  • All the nurses and HCAs on Lavenham Ward at Ipswich Hospital
  • The Physical Therapy Team
  • The stoma nurses at the hospital and the outreach team who visit me at home
  • Sheena, and my family, for being there and giving me the strength through their love
  • My wonderful colleagues at EAAA, for supporting me and being the awesome team that they are.
Useful links


Wednesday, October 21, 2020

X marks the spot

A bee. Nature is amazing. 
Although the surgery I will have next Monday is to be laparoscopic (keyhole), it's still a big operation - an anterior resection. One of the things that will happen is I will have a bit of my bowel brought out so that my natural digestive processes will bypass my damaged lower bowel, allowing time to heal.

I met the stoma nurse this week and she explained a lot, which certainly eased some of my concerns about this part of the procedure. She came armed with sample bags, leaflets and a black sharpie. On my belly I now have two crosses in circles, a bit like the Extinction Rebellion logo. But they are there to mark where, according to what happens during my operation, I will have my stoma.   

If, when I wake up, the cross on the right has been used, it would be access from my small intestine, meaning it's a temporary ileostomy and I will only have it for six months or so. If I wake up and the left hand cross has been used to access my larger intestine, it will mean a colostomy, which is permanent.

Either way, it will mean that my cancer has been removed from my lower bowel, which has to be good. I have been told that after the operation I should not to eat sweetcorn, and avoid gassy drinks; I guess that's so I don't shoot someone by accident or float away on an inflated bag.

It's only a few days now before surgery, and yes - I'm nervous. I won't be able to blog for a while, but my partner will be keeping friends updated.

Thank you for your support, and remember, if you have any symptoms that you are unsure of, don't hesitate - visit your GP. You are not wasting their time, and you could be saving your life.

Useful links

Bowel Cancer UK

Cancer signs and symptoms (NHS)

Photo: (C) Carolyn Sheppard



Tuesday, October 13, 2020

The cure

It's going to be a busy couple of weeks. Thursday I will have my pre-operative appointment and a CT scan. The following Friday I will have my Covid test, and then on Monday October 29th I will be admitted to hospital for surgery. Big surgery.

I have a few things to sort out - such as work - but that's not a worry. I have a great employer, a great team, and have cover planned for what will probably be a two month absence. That takes me up to Christmas.  The weeks of radiotherapy didn't evict Gertrude the tumour, but it did stop it spreading and shrink it. 

This has surely been the strangest year for so many. I have had friends who have lost loved ones from cancer and Covid, I have friends who have Long Covid whose lives have changed, probably forever. And if it wasn't for Covid, I would have had this operation back in March and it would all be 'history'.

Playing 'what if' is a waste of time, though, so even looking forward I am not worrying about the risks, side effects, potential changes to my life. Worrying about them now makes absolutely no difference to any outcomes, so why stress myself? I am a little preoccupied though, I have to admit.

The operation to remove the tumour in my sigmoid colon is going to take about 7 hours. I will be in hospital for aaround a week (no visitors) and will have to have a stoma bag for several months. Pretty daunting stuff. But the outcome will be 'cured'. 

Bowel cancer is curable, if caught early enough. My cancer is curable, I am not going to die. Result! So all good. And for no other reason than it's a great song, and the band is The Cure, here's It's Friday, I'm in Love (and I am, on every day of the week).

Wednesday, October 07, 2020

Testing times

Saturday I had a Covid test. It's standard at the hospital, pre-procedure. I went to the 'drive through' and the staff, dressed in PPE from top to bottom (and changing between each test) swabbed me through the car window. If you've not had a test, basically it's a really long cotton bud that they rub on the back of your throat till you gag, and up your nose till your eyes water. 

Mine must have been negative as I wasn't told not to attend my procedure on the Tuesday. But I felt rough - before you have any kind of 'oscopy in the colon, they have to 'empty' you - and it's not fun. In fact I was 'emptying' through the night, so by Tuesday morning I was pretty shattered, as well as being hungry having not eaten since lunchtime Monday.

This repeat sigmoidoscopy was so that the consultant who will perform my operation could go in and get a proper look. As well as seeing Gertrude the tumour in full colour, we saw a polyp, a small ulcer and some redness which turned out to be diverticulitis. Oh, and there's hemorrhoids too. What a journey that little camera went on!

I felt absolute rubbish on Tuesday - my belly hurt, my backside hurt, and I was exhausted. But that's one more stage in the process complete. After the procedure the best bit is the cup of tea and biscuits! And they hook you up to an oxymeter and measure your blood pressure. I looked at the oxymeter - 95%. I did my breathing exercises (cancer hates oxygen) and got it up to 100% in seconds. Thanks to Jen Tiller my breathing coach.

Next it's a consultation with the surgeon on Friday. From there I'll know roughly when I have surgery, hopefully. These are testing times for us all. I'm just hoping that I can get my surgery in before we end up in the same situation that we had back in March - with the ITU beds full of Covid patients. If we get another bad spike, then there's no way they'll operate on me (or others) and take the risk of having a cancer patient in an ITU where there are Covid patients.

So - fingers crossed for a good consultation on Friday and a speedy admission. The sooner I can get Gertrude forcibly evicted (she ignored the radiotherapy, though it did shrink her), the better.

Onwards!

Related:

Photo credit: Ottowa Times

Monday, September 28, 2020

Lil' Boomer

Back in July, during lockdown,  Sheena's business premeses were left unattended for some time and became a bit overgrown. Waggytails Dog Training Centre is in the hamlet of Weston, and is adjacent to farmland. The car park is next to a huge maize field, and the astroturf and grass areas are separated from the car park by a hedge made of dead lelandii and other miscellaneous growth such as elder and nettles. Further in, behind the grass and next to the astroturf, is a large sandy area full of weeds. If you are a partridge, this is lovely foraging ground. The astroturf was full of little mossy weeds too and the grass was so long you'd lose your dog in it.

We worked hard mowing, clearing, cutting, brushing, sweeping, painting ... all those things that were needed for when the Centre could open again. The hall was tidied, social distancing for dog training implemented and barriers bought and the whole place given a deep clean (and a new kitchen).

One afternoon we were sitting having a rest in the astroturf area, in the shade near the hedge. Peep peep. We looked down to see a baby partridge pottering about. I put him back in the hedge where, hopefully, his mother was hiding. A few minutes later, peep peep. He was back. I put him back in the hedge the other side, deep in the undergrowth behind one of the outbuildings. I went back to painting.

Peep peep. He came back. No sign of mother. Peep peep. He was looking a bit tired. I picked him up, warmed him, and put him back in the hedge. Didn't see him for a bit until - peep peep. He was sitting on my foot.

By the end of the day it was clear mother had scarpered and this little chap was our responsibility. I took him into the sandy area and helped him find some tasty bugs (tapping the ground with my finger, he followed and snapped up the little protein packets). 

That evening we took him home and put him in a box - after learning that he mustn't get wet (which he did after diving into his water bowl) and having to warm him up in my hands, we left him overnight fully expecting him to have passed away. 

The following morning I went to check. Peep peeeeep. He was still with us, just, so I fed him some water on my fingertip and took him back to Waggytails. He was soon pottering about the sandy area, gobbling up the bugs and - in a humungous effort for such a little chap - ate a whole caterpillar! This was perfect timing, his stomach would be full as I popped him back into his box and took him to a rehoming expert.

Last we heard he was gobbling up waxworms and mealworms and snuggling under the breast of a broody hen. I hope he/she made it. A little fighter who had a tough start.

PS we called him 'Boomer' - because he kept coming back like a little boomerang.

Liked this? Try...


Photos (C) Sheena Stebbing

Tuesday, September 22, 2020

Gertrude remains

On 26th August I had my post-radiotherapy MRI scan. The scan looked good - as far as they could see. But they couldn't see far enough, so I needed a sigmoidoscopy. This is a bit like a colonoscopy, but doesn't go as far along the gut, only into the sigmoid colon. I was optimistic that radiotherapy had eliminated the cancer (known as Gertrude). 

I had my 'oscopy on Sunday 20th September. The day before was 'purge day' and not a lot of fun, but not nearly as exhausting as the prep for the colonoscopy. My scan was at 1pm on a Sunday - love those hard working NHS staff working shifts to offer as many clinics as they can. 

I met my 'oscopist and we elbow bumped. I was in my fetching paper pants with the hole in the bum and hospital gown and a mask of course. I think you have to abandon any thought of sartorial elegance at such occasions.

I felt, then watched, the camera begin its exploration of my insides and discovered that I also have a polyp, a small ulcer and, unfortunately, the tumour as well. Although it is smaller (no doubt zapped by five weeks of radiotherapy), it has not completely gone. Gertrude is holding on! On the visual display as well as seeing the view from the camera, there is also a little graphic of the endoscope and where it is, and it looks like a small wiggling worm. Or like a hair caught in the film in old cinema projections.

So its back to stage one, really, surgery. When I was first diagnosed, surgery was the preferred option, but Covid hit and as there is a risk (albeit small) of needing to be in ITU with abdominal surgery of this kind, it was decided that I would undertake radiotherapy instead. Having a leaky bowel in ITU when the unit is full of Covid patients was not a risk to be taken.

So here I am, more than six months later, and we are back to square one. But with a much smaller tumour, thankfully. Bowel cancer is an odd one and it can grow, go slow, grow... so the zapping may not have eliminated it, but certainly reduced it and stopped it from growing (or spreading).

Sadly, just as Covid is spiking again. I'm hopeful that at the Multidisciplinary Team Meeting this Friday they will come to a conclusion and get me a surgery date as asoon as possible, but I won't know for a while. I'm also hoping that sense will prevail and despite the stresses that lockdown measures put on us all, the UK's population will listen to the government's advice and help stop the spread of this nasty virus.

Stay safe, stay well, and keep smiling (under your mask).

Photo (C) Brittannia.com

Other posts in this series:

And on a more cheerful note:

Reminder:

If you have any symptoms that you are concerned about, even just a little, please visit your GP. Early diagnosis is life-saving.

Useful links: