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. 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.

Hairlarious Times

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

 

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 I know to get the junk out of my head. It’s been really interesting, actually; people’s reactions to my blog. The majority of my friends are wonderfully supportive and their words of encouragement keep me going. Thank you! However, there have been a few who have ‘told me off’ for feeling out of control. Well, I do and I am, but that doesn’t mean I no longer trust God to be with me and to see me through it all.  I’m only a human after all and I’m allowed to have and own my feelings. Being castigated for being honest and having ‘feelings’ isn’t helpful, though I suppose they think it comes from a good place. I don’t like being told how I should feel. Rant over.

After the first and second and third reactions I was reassured by the nurses that ‘they’ll have plenty of plans up their sleeves. Don’t worry.’ However, despite the awesome care I’ve received thus far, I’ve not seen the actual oncologist since my initial appointment.  This is annoying. Instead, I’ve seen a succession of minions (why are they all so young?), who don’t appear to have any sleeves, never mind plans up them. I’ve gone in armed with a list of alternative drugs and another plan for them, because obviously I know more than them having asked Dr Google about other options. I’ve also been chatting to other women with ovarian cancer, and they’re all on other drugs after having the same kind of reaction to the Paclitaxel. And yet the minions I’ve seen have dismissed these drugs as ‘clinically unproven’ or ‘not routinely given here’.

This again is very frustrating as I feel the safety net has been pulled out from under me. They reassure me that plenty of women only have the Carboplatin, but they also say it only does 80% of the work. What about the other 20%?  And the fact that they keep muttering direly about ‘recurrence’. Clear Cell Carcinoma is rare and aggressive and returns. They told me that right at the beginning. There’s no point in focussing on that now though. I’ll cross that bridge when it hatches. Meanwhile I suppose I just have go with it and trust they actually do know what they’re doing.

I had my third cycle on Friday and it went well as I only had the one drug. I was told I needed a PICC line as my veins are thin and could get damaged. I was happy to have it, but when I arrived the nurse hadn’t booked an appointment, so ended up with a very painful cannula in my hand, which is still bruised and sore. Sigh. Next time, I’m assured.

Now side effects. So much I didn’t know. I was expecting fatigue and nausea and I have those. They’re manageable, apart from when I’m on the steroids and am off pulling tractors with my teeth or whizzing up and down the drive on my zimmer…with my stick, I mean. My balance is a bit iffy, so am forced to use an old lady stick for longer walks. I need to cover it in something funky. When I have the energy. There’s also the fuzzy eyes, fizzy feet and funny, funky feelings under my skin – those nasty cancer cells exploding, I imagine. And mouth ulcers and though I’ve not lost all my hair yet, I have a receding hairline, thinning hair and a clogged plug hole.  No need for the purple wig yet though. This is because it’s the Paclitaxel that causes the most hair loss and as discussed, I’m allergic to it. I told someone I met the other day that I was having chemo, and he reacted by staring at me skeptically and saying. ‘But you’ve still got your hair.’ People are weird.

One of the most difficult things to cope with, as it’s inconvenient while out and about on good days, is the effect on me bowels. All I will say about this is Prune Juice Will Set you Free. Don’t need to say anymore about it, do I?

The most excellent news of all, after surviving the chemo, is that my brother’s plans to come to the UK are gathering pace thanks to the astounding generosity of people who supported our GoFundMe campaign. I’m still speechless at the kindness of everyone. And then, thanks to the help and excellent nagging skills of my friend, my brother has received the necessary full birth certificate in a couple of weeks instead of the threatened six months. Yay. And then, yesterday I got an email report on books sales and am delighted to say that Aquafit is Murder is selling very well indeed. Since I’m not allowed to actually do any aquafit for now, this has been a wonderful boost. Still taking very long showers to get the water on my body feeling I miss so much.

Onward and upward. CT scans next week, plus lunch with friends and a visit from my other brother who lives nearby. All in all, not too bad, is it?

 

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 changed. If anything, I’m even more in awe of the difficult and stressful job they do with such warmth and compassion. My only complaint is that once I’ve met these marvellous people, I seldom see the same one twice. And yet despite me being a stranger to them, I have been consistently treated with care, respect and a lot of humour. Even when they’re jabbing sharp things in my veins and sucking out my blood or dripping poison into my body. Angels.

In another previous post, I talked about the importance of family and how much I miss my brother who lives in South Africa. Nothing about having cancer is simple. It’s complicated and things don’t always go exactly the way you hope. I like being in control but have discovered some things that are out of my control and actually, that’s fine. Allergic reactions to the chemotherapy are going to happen, bladder infections are going to happen, feeling tired and nauseous is going to happen. It’s part of the fight and is out of my control. But that’s fine. I’m surrounded by angels. Both heavenly and earthly.

I’ve not seen my brother for ten years and I miss him. I miss his technical advice on all kinds of stuff I don’t understand like sympathetic resonance, and his doing the maths for me because, like any poor child I tried to teach maths to will tell you,  I’m a mathematical numpty. I was so bad at it they took it away and gave me music instead. Best thing to ever happen to me during my teaching career. For me and the children. I miss my brother’s cooking and being able to touch his skin and share a laugh at a ridiculous joke. I even miss the way he snorts derisively when I say something he doesn’t think is remotely funny. What kind of dog does a magician have? A labracadabrador. I’ve been fretting, I can’t stop myself. And then I thought, there has to be a way of getting him here without having to sell a kidney to raise the visa fee and fare. I decided to be like margarine. Proactive.

I took a leap of faith, something I’m want to do, and started a crowdfunding campaign to raise the money. Yes, I played the cancer card because that’s what this is all about and though it’s uncomfortable to put myself out there, it has to be done and I will get through it. It’s a pity it’s taken the melon to  make me realise anew how much I want to see him. It’s hard on all of us, on both my brothers, my nieces and nephews and uncles and cousins and friends, but together all things are possible.

I started off the campaign on GoFundMe with trepidation, convinced I was being silly and that there was no way anyone would donate. I was wrong. I’ve been wrong a lot lately. The earthly angels started shaking their wings and before I knew what had happened, we’d met the target.  In only two days. The air (and internet) is awash with angels. I find myself bursting into tears for no apparent reason and when anyone says anything kind. Or tells me how well I look. Um. I am overwhelmed at the love and support I’ve received from friends, family, acquaintances and strangers. So many human angels out there, I am literally speechless. I don’t think I’ve ever felt as loved and cherished as I do right now.  The words Thank You, really aren’t sufficient, but at the moment they’re all I have.

Tractors and Tattoos

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.

 

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 trouble. I still remember them and every time I swim in the sea, I hear his voice telling me to; ‘Never turn your back on the sea,’ and ‘Never be the furthest one out,’ and ‘Never go too far out of your depth, make sure you can get back and put your feet down,’ and ‘Don’t eat the seaweed’ and ‘Don’t try giving mouth to mouth to the fish I just caught. It’s for supper.’

My most feared Rule was the one about diving through a wave and what to do if I came face to face with a jagged-toothed sea creature. Before it ate me, I was to punch it on the nose and jab my finger in its eye. I’m not entirely convinced this would have worked. Happily, I never bumped into a shark while swimming, but even now, in shark free waters, I find myself keeping an eye out for a dorsal fin and have a moment of panic if anything touches my leg. Watching Jaws when I was far too young, hasn’t helped. Perhaps this is why the do-do-dododo ringtone of a fellow patient’s phone gave me nightmares when I was in hospital.

I love diving headfirst underneath an enormous wave and coming up safely on the other side. My dad taught me how to do that when I was small. The waves were bigger than me and I’d been ‘dumped’ more than once when a wave hit me. Being dumped is like being in a washing machine, tumbling round and round and then being slammed, usually face first, into the sand. More than one bikini top, and sometimes an entire swimming costume, was lost in such circumstances. And there’s nothing quite as embarrassing as emerging from the water missing half your costume or with a sand-filled crotch dangling between your legs.

One day he took my hand and as an enormous, frothing wave approached he said, ‘Take a deep breath, we’re going underneath it.’ I clung to his hand and he pulled me under the wave and out safely on the other side. Beneath the roaring, rushing wave, the water was calm and the fury of the water passed over our heads. Once we were beyond the breakers we were in gently swelling water. Safe. My dad also taught me to body surf and gave me a helpful tip about doing handstands on the edge of the water. Don’t. Obviously doing handstands on the beach was irresistible and I ended up with a mouth full of salty water and a crotch full of sand. This didn’t stop me doing it again.

The Rule I now find myself remembering, is the one about what to do if caught in a backwash or strong current. South African seas have big waves and treacherous currents, which can catch you unawares if you’re not paying attention or obeying The Rules. I must have been five or six when my dad told me what to do if I ever found myself being washed out to sea. The main thing was not to panic and most importantly, not to struggle and fight the current as it would always win. I’d end up exhausted and all would be lost. But, if I kept my head and allowed the water to take me, I would eventually wash up onto the rocks or reach calmer water, and could then use the waves’ natural shore-bound motion to carry me back to the beach. ‘Swim with the waves, they’re always moving towards the beach’. I once found myself in that situation with some friends and was able to tell them The Rule. My dad was right. We stayed calm and eventually washed up on the rocks further down the shore. Perhaps it’s this Rule that helped me stay calm when my chemo went wrong. Everything was out of my control, fighting would achieve nothing.

I’ve been thinking about that specific Rule a lot since my cancer diagnosis. I feel like I’m caught in a strong current that’s washing me out to sea, a sea filled with sharks determined to eat me. I have to let the current take me and go with it until I reach calmer waters. Or a boat. The temptation to struggle and resist is strong, I won’t lie, but I realised early on that it’s no good trying to swim against the current. I need all my strength to fight this thing. I can’t do anything about it. I have to work with the experts so we can beat it together.

I’m caught in a current sweeping me I know not where, but I know a certain amount of fighting must be done.  What I want is to be on a beach doing handstands and diving through waves (I suspect a forklift or crane might be needed to pick me up if I actually tried doing a handstand at this stage). Instead I’m waiting, not patiently, for the next appointment and for them to tell me Plan B for the chemo. It’s only been a week since my allergic reaction. It feels like a year and I’m desperate to get going again but I need to pick my battles.

I want to fight this jagged-toothed cancer-creature, which, from what I can tell, follows different Rules for everyone, but I don’t want to struggle against the current, if that makes sense. The current is going to take me where it wants and I have to preserve my strength and wait for calmer waters. Or a boat. At the moment I’m becalmed, stuck in the doldrums of waiting and I’m not allowed to swim, which I know would help. Water is where I re-discover my self and feel human. Perhaps it’s time for me to create my own set of Rules for dealing with this monster. Yes. That’s what I’ll do. Meanwhile I’ll stand under the shower for a very long time and pretend it’s a wave.

 

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 feathery dandelion bits floating about somewhere inside me (see earlier post).

The unit is in a beautiful Georgian House in Bristol, more like a posh hotel than a chemo unit, with expensive magazines and an array of tea, coffee, hot chocolate and biscuits. The best coffee I’ve had for ages. The only thing missing was a beach and sparkling blue waters outside. Everyone was lovely and kind and it all began well. The chairs are large and comfortable, it was quiet, with Wifi, and I was confident I’d sail through it. I was wrong.

I’m sorry to report it was a nightmare, as I had a very severe allergic reaction to the Paclitaxel, the chemo drug. I was supposed to have three hours of that and then an hour of Carboplatin and was joking about with the nurses, confident the dandelion would soon be wilting. Unfortunately, within literally seconds of them opening the drip I felt decidedly horrible. I couldn’t breathe, my chest tightened, and I had terrible pulsating pain in face and back and the world turned a strange orange-beige colour. The nurses were amazing and leaped into action instantly. No panic, simply calm and efficient and encouraging me to breathe ‘in through the nose, out through the mouth’. I later thanked them for their excellent response to a very frightening event and they said my staying very calm throughout made a huge difference. Yay me! I have to look on the bright side, innit?

They called the oncologist who wanted them to ‘re-challenge’ very slowly. What kind of medical term is that, I ask you with tears in my eyes? The nurses said my reaction was so severe they weren’t happy to try again as they aren’t set up for another event like that. So Plan B.

The oncologist will call me and Plan B is for me to go into the Oncology Unit in Bristol after a few days of oral steroids, which should help, and then to try again with a very, very slow drip. They’re better equipped at the hospital if it happens again.

This wasn’t part of the plan. I was determined not to have any problems. Obviously they stopped everything and after a couple of hours of observation I was able to come home. I feel like I’ve been hit through the face with a wet kipper. And a cricket bat. While being trampled by a woolly mammoth. I’m fine. Really. I had a good sleep and Rice Crispies for supper. Sticking to the good nutrition, I am.

Now I have to wait for the experts to call and take it from there. It’s a bit of a delay to my treatment but they assured me the oncologists have a whole lot of other options, so all is not lost. And I had my hair cut really short last night to lessen the trauma of hair loss. I look like a 6-year-old boy on his first day at big school.

Will sign off now, so I can take to my bed again. I’m fine. I am.

 

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, no matter how old we are.

At times like this family and friends become more important than ever. I have wonderful, supportive friends and family. They say you find out who your real friends are in times of difficulty, and it’s true. What I’ve found out is that all my friends are real…apart from the ones in my head, of course. Those I see often and those I haven’t seen for years have rallied round with words of love and encouragement, and I hope they realise how important this is to me.

The nearby ones offer up their time to ferry me about to the many, many appointments that fill my days. They shop, they clean, they laugh with me, they bring me chocolate and biltong and Rice Krispies (other cereals are available), they encourage and support me. I couldn’t do it without them. The best thing is, they’re all as mad as me.

My little brother is in South Africa, and thanks to the general skulduggery and corruption in that country, South Africans can no longer travel to the UK whenever they want. No. They have to get a visa, which costs plenty and takes a while to get.

And so, while my big brother and I are here in the soggy UK, our little brother is in sunny South Africa. All I can do is think of him and miss him and wish he was here beside me as I continue this new, unwanted adventure. If I could sell a few thousand books or win the lottery or marry a minor royal with a major fortune, I could buy that damn visa and an exorbitantly expensive plane ticket and have him beside me. It’s been ten years since I last saw him. It’s been almost twenty years since the three of us were together in the same room. Wayyyy too long! And hence why I’m feeling blurgh. I shall now return to my colouring in. Or go for a walk.

 

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, ladies in scarves and hats and bandanas, and I realised that soon I will be one of them.

It sunk in even more when I was told that, depending on the blood results, I’ll be starting chemo next week. It hit me in the face like a wet kipper. I knew it was coming and I think I’m as well prepared as I can be. I have a book and a tablet to take with me to my session, which I’m told will last 4-5 hours, and I’ve even bought an adult colouring book (funky, Bohemian cats, in case you’re wondering) as someone, I forget who, told me it’s very soothing and I suspect I might need to be soothed as they drip the poison into my veins. But eish, as they say.

It’s pretty scary but I’ll be fine and will get through it. I have to, innit? I have to take each day as it comes, do what the experts say and go with it. There’s nothing else I can do. Annoyingly, my wound from the surgery is still not healed and parts are weeping (I myself am trying my best not to weep – if I do I might never stop). I’m hoping this won’t impact the start date, as I want to get cracking now and kick this horrible disease in the butt. These are my thoughts for today.

Madness and mayhem

I always imagined that the Intensive Care Unit in a hospital is a calm and serene place where nurses speak in hushed voices and sickly patients can recover in peace. It’s not. It’s like Paddington Station at rush hour.

Flashing lights, beeping alarms, nurses rushing about unplugging and plugging patients into an array of technology that would make the crew of the Starship Enterprise green with envy, make the ICU anything but peaceful. And how do I know all this? Well, I recently spent three nights in the ICU at the Bristol Royal Infirmary following my melonectomy and practically every other ectomy you can think of. I am in awe at the efficiency and dedication of the staff there. I honestly don’t know how they keep it all together and am pretty sure the nurses walk about a hundred miles during a shift. I was exhausted simply watching them. From my bed.

On opening my eyes following the six-hour surgery, I thought for a moment I was aboard the previously mentioned Starship Enterprise. I had tubes and wires and needles inserted into every orifice and spare patch of skin, and risked throttling myself whenever I moved. Fortunately, one of these wires was attached to a morphine button, and I was able to keep myself nicely sedated while the nurses and other staff ministered and cared for me patiently and kindly until I was able to string a full, coherent sentence together. I confess to becoming very fond of morphine and quickly learned how to rate my pain on a scale from 1 to 10.

I’ve always admired nurses. I once, inspired by a Mills and Boon book entitled Caprice in Hospital Blue (yes, it is sad that I remember the title), toyed with the idea of becoming a nurse myself, until my mother reminded me that I threw up at the merest whiff of any kind of bodily fluid or excretion. I still do. The nurses at the BRI had no such problems and went about their work calmly and patiently. When the drug addict two beds away abused and swore at them while brandishing a small pair of scissors she’d snatched off the nurses trolley, they didn’t flinch or run away screaming, as many would. They patiently persuaded her to come out of the bathroom, to put away the scissors and stub out the cigarette, and then talked to her calmly until she got back in her bed protesting violently about being held there against her will, demanding her methadone and to be let out for a quick fag. And as if that wasn’t traumatic enough, one these very nurses spent ten minutes the same night scratching my back, which was itching more than a flea-filled camel’s armpit.

How they manage to plug the right wire into the correct socket while answering alarms, taking blood pressure and temperature, collecting and labelling blood samples, draining catheters and cleaning up smelly bowel related accidents, administering the correct pills to the correct patient, filling up water jugs and changing dressings among other fun stuff, I honestly don’t know. The technology is astounding. Whatever did they do before computers? And all this done with smiles and friendliness and much, ‘How are you doing, my lovely?’ They didn’t even get annoyed when I complained of a lumpy mattress and moaned pitifully about my itchy back and gluey mouth. They changed the mattress and brought me water. Litres and litres of water, usually placed on a table just out of reach. I suspect it was a cunning plan to get me up and walking as soon as possible. And when I did eventually get up, a well muscled and rather hunky physio (young enough to be my grandson) was there to assist me. What more can a girl ask?

Suffice to say I was impressed with the staff at the BRI. From the nurses and cleaners to the friendly Jamaican man who brought me my dinner (I’m sure they don’t deliberately make it all taste like cardboard), everyone was incredible. It’s a veritable United Nations in there, with nurses, doctors, cleaners and dinner deliverers coming from every corner of the world. My first nurse, from Zimbabwe, was thrilled to make an African connection and instantly recognised my South African accent. I, for the first time, truly understand how the NHS relies on foreigners to keep it going.

I was then transferred to the gynae-oncology ward at St Michael’s Hospital for a week and there I found the peace and calm I’d been craving. Once again, the wonderful nurses treated me like a person who’d undergone a massive operation and didn’t once complain when I rang my bell for the millionth time needing a steadying arm for a trip to the loo, or muttered darkly about how uncomfortable the bed was, or got annoyed with the woman in the next bed who had the Jaws theme as the ring tone on her couldn’t-be-bothered-to-put-it-on-silent phone. Imagine, if you will, being in a morphine induced sleep, and in the wee hours of the night hearing the familiar do-do-do-do-dodododo music blaring into the stillness. Pity they’d already taken my catheter out. I had nightmares all night. And don’t get me started on the woman in the bed next to mine who had a visit from her partner, pulled the curtains round them and proceeded to play their thumping techno music very loudly while they re-acquainted themselves with one another in a disturbing bed-squeaking manner. I don’t even want to know what they were doing. I blame the pain and morphine for my grumpiness. Classic FM through my earphones became my refuge from the occasional bursts of noise.

Once again nurses from around the world, and the delight of the nurses from Mauritius, Seychelles and Rwanda on meeting another African, kept me entertained and made me feel loved and safe. The dear little Rwandan nurse popped in to see me every time she was on duty. I don’t think she fully understood much of what I, or anyone else, said. But what an excellent nurse.

A week in hospital feels like a year, but the kindness and care of the staff made it bearable. Thank you!