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[katykrump]

I’ve always taken the road less travelled, and it appears I’m now taking another. As far as the cancer road goes, I’ve already taken the rare route with the melon and its clear cell carcinoma. The night before I was due for my fourth cycle of chemo, I received a phone call from an oncologist – not anyone I’d met before, but I’d seen his name on a door. He told me the routine scan of my accidentally snipped ureters had shown lesions on my liver and pancreas and said the decision had been made to halt chemo while they investigated.

This wasn’t news I wanted to hear and thought it was a swift recurrence, despite the chemo. I was booked in for a wig fitting after chemo and my dear friend Sue and I decided to go anyway and what fun we had. For a few hours I was able to experiment with different looks and forget about the reality of something nasty brewing in my innards. We laughed so hard my tummy ached. I finally decided on a slightly boring, blonde wig. Then we went to the South African butcher in Bristol and bought biltong and wors.

The only trouble with new wig is that when I put it on all by myself it looks like a dead Labrador on my head. I hang it on a round bolster at the top of my stairs. The first night I got up to go to the loo I almost had a heart attack and fell down the stairs when I put my hand on it. I moved it to my dressing table, but it looks like Cousin Itt from the Addams Family, which is even more scary.

The Marilyn

The Nigella Pout

Rock Chick

I had an urgent CT scan and waited anxiously for the results. I was having a nap two days later when the phone rang for the fourth time following a string of calls from Indian call centres where they tried to sell me a new boiler, knew about my recent accident and informed me they were from Microsoft and there was something wrong with my computer. So when I heard another Indian accent mispronouncing my name, I sighed deeply, resisted the urge to slam the phone down and said ‘Yes. What?’ Imagine my horror when it turned out to be a nurse from the x-ray department calling to arrange a liver biopsy. That will teach me to racially profile on the telephone. Perhaps the years of being drip-fed Apartheid go deeper than I thought. I met the voice the following week. A delightful nurse who held my hand throughout and giggled with me as I tried to lie still without wriggling for four hours after the biopsy. It’s not as easy as you think. She walked me out and we agreed we never want to see each other again. I’m hoping to avoid any more biopsies.

What?

Yeah, but no, but…wha’evuh!

Maybe not

Three days before Christmas I received a call from my original Egyptian oncologist. I was expecting to be told the ovarian cancer had recurred but no. The biopsy showed a completely different kind of cancer originating in the pancreas. I’ve been handed over to a new team specialising in Upper Gastro-intestinal cancers and will no longer be under the gynae-oncology department. When she told me it’s rare and very unusual, my first thought was, ‘Yeah, but have you met me?’ Why do I never take the road well-travelled?

I spent Christmas with my brother, his family and my cousins and their dog. It was lovely. I kept thinking ‘This might be my last ever Christmas.’ Staying positive constantly isn’t always easy.

I met my new oncologist yesterday. He was very nice with some pleasing human-like qualities, unlike many doctors I’ve met who are more robot than human.

The news was pretty much what I was suspecting, but hearing it out loud wasn’t the most fun time I’ve ever had. Thank the Lord for my wonderful friend Charmaine, who held my hand throughout. I have Stage 4 pancreatic cancer – adenocarcinoma, in case you’re wondering, which has spread to the liver. The tumours are small and inoperable, but since they’re still small that’s ‘good’. The routine scan was fortunate otherwise we’d never have known until I turned yellow.

I’m going to be starting 6 months of 2 weekly FOLFIRINOX in 2-3 weeks, which should keep it at bay and he said it will hopefully give me another 1-2 years, but nothing is guaranteed. Charming. Seeing the Disease control/Palliative box ticked on the form he filled in gave me a small wobble last night. I asked about the ovarian cancer and the chances of it recurring, and he said ‘Pancreatic cancer trumps ovarian’  #rollseyes. My new Clinical Nurse Specialist also talked about referring me to St Peter’s Hospice. I put my fingers in my ears and hummed God Save the Queen. I wasn’t ready to hear that yesterday. But she went on to say that since I’m so well at the moment (how frigging annoying is that?) she won’t refer me yet. I actually feel better than I have in years and the longer it takes for them to refer me, the better.

I nagged them about replacing my PICC line with a porta cath, which would enable me to swim, as it’s in the water that I regain my sanity. Oddly, not being allowed to swim,  is the thing upsetting me most. I can cope for a while, but the thought of never being able to swim again is too awful to contemplate.

It helps to have things to look forward to and I have those. My brother will be coming to the UK soon, I pray, and my beloved nephew is getting married in October. I’ll hopefully be finished chemo by then, so I can put on the bling and celebrate with my family. I was given a new Festive Fascinator by my lovely nurse for Christmas, which I think will do for the wedding too.

I’m still getting my head around it all, but do have amazing peace, brought on I’m sure, by the many prayers being said for me. When I say the words pancreatic cancer, people start talking to and looking at me like I’m Dead Woman Walking, and it’s very annoying. I’m not dead yet! If you see me, please don’t. I’m still who I always was and will continue to be her for some time to come.

Onward and Upward. I’m not going down without a fight.

The Road Less Travelled I've always taken the road less travelled, and it appears I'm now taking another. As far as the cancer road goes, I've already taken the rare route with the melon and its clear cell carcinoma.

[katykrump]

It’s been longer than I wanted since I last blogged. Chemo brain is a real thing. The oncologist told me so.

When I was first told the melon was cancerous, the surgeon said I’d need chemotherapy, and asked how I felt about losing my hair. My instant reaction was that it wouldn’t bother me as I knew it would grow back and I still feel the same. Turns out I’m allergic to the chemo drug that causes hair loss, but I had enough in my system to make it come out anyway. The second drug causes hair thinning. I mentioned my receding hairline in my last post. My hair was getting thinner and coming out in random places. I decided the Donald Trump comb-over look didn’t suit me at all and had it shaved off by a kind friend who thoughtfully provided a flattering orange shawl to prevent the hair from falling down my neck. I have many kind friends. I’m very blessed. She did the job and even left a little curl right in the middle of my forehead. When I’m good, I’m very very good. I looked like Tintin. And my brother. We laughed so hard I wet myself.

I’ve always found the humour in every situation,  no matter how dark. My teachers did not appreciate this. Now it appears my sense of humour has gone in to overdrive. I find something funny in everything and every situation I find myself in, be that waiting in a hall with nothing but a wall to look at, or wishing my Egyptian oncologist was wearing a golden Striking Cobra Headdress. I’m not going to apologise for this, even though some people are finding it hard to understand. I’d rather laugh than collapse into a crying, quivering, snotty heap. Finding the funny side isn’t a sign that I’m in denial or hiding my true feelings. It’s just me. I have peace and know the Lord is in control, no matter what happens next. In the grand scheme of living with cancer, losing my hair is no big deal. It will grow again and is only part of the fight. I’m determined to carry on as normal for as long as I can, and laughing about things is normal for me. Glamorous as I know I look in this picture, I’m not planning on going out like this – wouldn’t want to frighten the little children. Who said pouting makes you look sexy?

One of the good things about being hairless, is that I get to wear a variety of hats and scarves. I’ve always loved hats. I’m not very good at putting on the scarves however, and fear I will never duplicate what you see below.

I don’t know what I’m doing

Chemo Lady

Mama Afrika

Winding swathes of fabric round my head isn’t my strongest skill and makes my arms ache, so I’m wearing hats. The cold weather makes this easier and no one notices the patchy spikes beneath them. I’ve had many compliments, especially about the flower hat, usually followed by a ‘But you look so well,’ remark. And it’s true. I look better than I have for a very long time. I also feel better now that the melon is no longer consuming me. Of course I have days when I feel rubbish, but so far I’ve coped well and can tolerate the fatigue, tummy issues, sores in my mouth and scalp and other side-effects too boring to mention. Taking each day as it comes is the best way forward. Some days are funnier than others. I wonder how many hats one girl should have.

Gangsta

Flower Power

Cat Woman

Bonjour

  Hairlarious Times It's been longer than I wanted since I last blogged. Chemo brain is a real thing. The oncologist told me so.

[katykrump]

Prune juice will set you free

Prune juice will set you free

It’s been a while since my last post. I have a doctor’s note. I was expecting to feel rubbish after chemo and I am. The side effects are horrid, but I can cope with them. More on that later. 

There’s no point in writing this blog if I’m not going to be honest. Honesty is not a sign that I’ve lost my faith or am feeling hopeless or have given up, but like I’ve said before, writing is the best way…

[katykrump]

Proactive. Like margarine.

Clap your hands if you believe in angels. Wait. Sorry. That’s about fairies. I don’t believe in fairies, but I do believe in angels, both heavenly and earthly. There’s nothing like a bit of cancer to get the earthly angels shaking their wings and covering you in their feathers.

In a previous post I talked about the wonderful nurses I’ve met recently, and nothing in my opinion of them has…

[katykrump]

Last week I headed off to the Bristol Hematology and Oncology Centre for my second round of chemotherapy. Well, it was really the second first round as the actual first round was a nightmare. Confused? Me too. This whole cancer business is confusing. I’m finding out new information every day and much of it isn’t fun. I’m not going to pretend I’m finding it easy, I’m not. I’m still human, after all. It’s hard, but I know I’m in good hands, and have to trust those in charge of me. And I know in the tough hours all I need to do is Look Up.

This time I was admitted to the ward, as they needed to keep an eye on me in case I had another allergic reaction to the Paclitaxel. As anyone who has spent time in hospital knows, there’s a lot of waiting about, so it’s a good thing there’s plenty of entertainment provided, not only by the tablet and assorted books and magazines I took with me, but mainly by the other patients and the nurses. And I had excellent views of beautiful Bristol.

I’ve recently taken up colouring in. I’m basically still a five year old at heart, and I have to say, it’s very relaxing as well as ‘mindful’ –  the new buzz word. I was too embarrassed to take my book of Bohemian Cats and box of crayons into the hospital with me. What if I dropped the crayons all over the floor? I have a history with crayons. Mainly that I liked to eat them, particularly pastels. Wax crayons don’t taste as good and they get stuck in your teeth. My dear friend Helena Hettema and I once got sent out of class for using the paints to paint our nails. We were seven. It was pretty. I don’t know why Mrs du Toit was so upset.

In order to prevent another reaction, I was pumped full of enough steroids to enable me to pull a tractor with my teeth. Either that or I’m taking up weight lifting. They also gave me more to take at home. I’m buzzing and a bit hyper, with strange fizzy feelings in my legs and poppings and twitchings in my body. Hopefully those dreaded dandelion feathers exploding.

In hospital it’s hard to concentrate with all the activity going on, and I found I couldn’t focus on anything much. Apart from the buxom woman in the bed in the corner. It was a small ward and every word she said could be heard by everyone else.

It really wasn’t hearing about her car tax problems or that she would ‘kill for a steak and kidney pie’ or how she wasn’t able to fetch her granddaughter from school due to being in the hospital, it was the tattoos that covered every inch of her sixty-ish year old body that fascinated me. I’ll be honest, I’m not keen on tattoos myself, but this lady had some I’ve never seen before. It was hot and she was wearing a strappy top, so we all had a good look.

The one I couldn’t keep my eyes off, was the skeleton hand creeping over her shoulder and grabbing her boob. Every time she moved it clenched her flesh, which rippled and moved in undulating waves. I wondered what made her have such a thing permanently etched on her body. Her shoulders and torso were covered in large red roses interspersed with skulls, so obviously death was something she thinks about. We all do, I suppose. I wanted to take a photo, but she was accompanied by two very large, very hairy men, one of whom kindly fixed my bell for me when it wouldn’t work, but I felt it prudent to not take and post images of her.

The point of this is that having chemo is more entertaining than I imagined. Until they actually start the drip. They’d decided to slow the rate of the Paclitaxel to make it easier for my body, upping the flow rate every fifteen minutes. It started well. I tolerated the first fifteen minutes very well and was convinced that this time it would be okay. It wasn’t.

They returned to up the speed and within seconds I once again had a horrible reaction, tight chest and pains pulsating through my arms. They stopped it instantly, fabulous reactions from the nurses as always. After consulting the oncologist they were told to stop the Paclitaxel and do only the Carboplatin. It took an hour and I had no adverse reactions. But I’m understandably frustrated as these drugs are the two ‘go to’ drugs for ovarian cancer. I’m assured the oncologist will have plenty of alternatives, I’m seeing him on Monday and am hoping for some good news. I hate the term ‘roller coaster ride’ to describe a situation, but that’s what it is at the moment. Ups and downs and twists and turns, much clutching the edge of the seat tightly in order to not drop out and plummet to the ground. I’ve become neurotic. Every odd feeling or lump I feel seems ominous. I’m assured this is perfectly normal. My Clinical Nurse Specialists have endless patience answering my questions and reassuring me I’m okay and that everything is under control. I’m going to kick this thing in the butt!

While I wait for Plan C, I’m considering having this cat I’ve coloured in tattooed on my torso. Or perhaps I need to find a tractor and practise pulling it across the fields.

  Tractors and Tattoos Last week I headed off to the Bristol Hematology and Oncology Centre for my second round of chemotherapy.

[katykrump]

The Rules

My dad, like Leroy Jethro Gibbs, had Rules. And for me, who had mermaid tendencies from a very young age, his Rules related to swimming. One of my most cherished memories is of swimming in the sea with my dad. I was a strong swimmer, and was allowed to swim out into the deep water with him, but this was only because he insisted I kept The Rules. Also, he was there to save me if I got into…

[katykrump]

Death to the Dandelion

Death to the Dandelion

This morning I put on my big girl panties, girded up my loins and set off for to face my first chemo like a man…err. We (my marvellous friend Linda and I), left at 7 am, which is very early for me so not fully functional yet, and braved the Bristol rush hour traffic. I was having my first chemo at a satellite unit in Bristol and was excited, though slightly nervous, to begin killing off those…

[katykrump]

Resilience

I came upon this marvellous blog about resilience today and it’s exactly what I needed today as I’m feeling a bit blurgh. Not about having cancer and the imminent joys of chemotherapy and looking like Kojak (showing my age here), but because I miss my little brother. Okay, he’s a grown up and so am I, but he’ll always be my little brother. Just like my big brother will always be my big brother,…

[katykrump]

It's all getting real now

It’s all getting real now

I’ll be honest. The last month has been surreal and weird and it feels like it’s not happening to me. Cancer doesn’t happen to my family. It happens to other people. I knew something was wrong because I’ve been feeling rubbish for a very long time and in a way it’s a relief to know I’m not simply a drama queen. Yesterday I spent the day at the Oncology unit surrounded by skinny, bald people,…

[katykrump]

Evil is unspectacular and always human, and shares our bed and eats at our own table. W. H. Auden

http://amzn.to/1MxzSqo

http://amzn.to/2dkzfEK

#apartheid #history 

[katykrump]

Katy Krump was born and raised in South Africa and emigrated to the UK in 2000. She is an author writing children’s and YA fiction under the name Katy Krump and adult fiction as K.A.Edwards. We have conducted an interview with you.

http://www.thecrazymind.com/2016/03/katy-krump.html

[katykrump]

Twas a dark and stormy night...

[katykrump]

The final book in the Blue Dust Series is due out soon. Very excited.

[katykrump]

Rural Mom Blog

I stumbled across this excellent blog and today they posted an interview about Drippy Face. We decided that as this is about rural moms, and Drippy face is about bog, we go together like peanut butter and jam. Enjoy and please tell your friends about this great site (the rural mom one…of course if you want to tell everyone about this blog site too, I won’t hold it against you.) http://www.ruralmom.com/2014/09/bog-sibling-rivalry-and-geology-by.html

[katykrump]

Drippy Face continued his tour of the UK, stopping off to say hello to his relatives who are now held captive at #Chatsworth House.

[katykrump]

We will remember them

These past few days I’ve been thinking so much about my grampie, Arthur and his brother Algeron, my great uncle, as we remember 100 years since the First World War began. Both fought in the South African Signals Corps in German East Africa. Algy died there, aged 17 in 1917. He’s still buried in Iringa cemetery in Tanzania and never went home. They were simple farm boys with a German mother, who were sent out to fight in German East Africa, a theatre of the war seldom mentioned, even today. I wonder at the conflict they must have felt, leaving their mum who still spoke with a heavy German accent, to fight for Britain in a far flung corner of the African continent. Grampie told me it was ‘absolutely beastly’ and that was all, he never spoke of it unless I asked and even then said little. We will remember them.

[katykrump]

Drippy Face visited ‪#‎Chatsworth‬ and met some of his relatives who are now on display after being collected.