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.

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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)

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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!". 

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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. 

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