Loose lips sink ships

Not a great doctors appointment this Wednesday. My usual oncologist was on holiday and his registrar wasn't available so I saw Dr Doom (not her real name) instead. We were about 5 minutes in and discussing my next scan. I think she was feeling frustrated as I had answered 'fine' and 'coping well' to most of her questions. Note to self; more misery is expected from a cancer victim. So I asked what they were looking for from the next scan in terms of what was success and what were the expectations.  Years of marketing and sales mean that I am of course, a results driven person.

Anyway she blurted out "well it's not curable, we're just giving you more time" adding, and very badly backtracking, "I mean never say never, but it's unlikely".

Whilst I am not living in cloud cuckoo land and expecting my first mid-chemo scan to reveal that low and behold all the cancer has gone and that everything is fine again; I am trying to remain positive and focus on the fact that there are people who survive advanced cancer, so it is possible. It's a tough battle and the numbers aren't in my favour but after five years there's a long tail of survival and I want to be in that group. I am also very aware from the conversations that I have had with her boss (my usual doctor, and leader in his field) that the aim is to manage, shrink, then get rid of these things. He hasn't given up on me.

The blunt and thoughtless crushing of my hopes by Dr Doom highlights how fragile my positive state is. It's a pretty constant battle to remain upbeat and not be consumed by the over-whelming presence of cancer. There were a lot of tears on Wednesday and Thursday from Al and me; and the knowledge that my children may well grow up without a mother felt very real. I wonder if Dr Doom lay in bed crying for their loss that night? I doubt she gave me a second thought. Her casually flung out words were as useless as they were destructive.

Doctors  have power, whilst we know that they are not infallible and like us they are just human and can get it wrong; as patients we are vulnerable to their superior knowledge. They hold the medical file and make all the big decisions, backed with science and evidence, but decisions and choices nonetheless. This is the file that I have not been allowed to see; with all its charts and notes and plans and answers. It is held away from me and flicked through; and the medical team give me crumbs of hope or cast out stones of despair. I resent the lack of control and knowledge I have. I want to read the file, scour the words for hope, and understand it and find a way through. On the other hand I am terrified that, like Dr Doom, it condemns me to just a few years of painful procedures and toxic drugs.  It's a horribly vulnerable position to be and Dr Doom needs to know that. She needs to understand the fear that comes with cancer. The icing on the cherry tumours. The constant desire to see old age, the nasty thoughts that accompany every plan over a few months old. Do I renew my season ticket? Yes. Will I see Rosie start school? Please please God.

Dr Doom needs to know the struggle that all cancer patients have not to give in to the despair. Ultimately she needs to be a bit more freakin' sensitive. Careless talk and all that...





Sent from my iPhone

Tumour on board

Actually there's at least 4 tumours on board. 

I am constantly bemused by how similar my cancer/chemo symptoms are to those of pregnancy. The heightened sense of smell, a constant feeling of slight nausea (during post-chemo week) that is only resolved by eating vast amounts of carbohydrates, the consequent weight gain (also steroid induced) and bloating, various skin issues, bleeding gums and tiredness. Obviously there are a few obvious differences, the lack of congratulations and associated gifts (hard to believe I know), I don't get offered a seat on the train and there's staggering different objectives in mind - basically I don't want these little parasites to grow.

A predictable cycle of symptoms

Unlike pregnancy my symptoms have a nice 'easy' pattern that I can try and follow, aim to anticipate and that actually help remind me that there's improvement on the horizon. I can even map their progress in a PowerPoint chart (apologies to Bryan Scott and Linda Grant for the poor visuals).

The Sunday after chemotherapy

The first indication that I am in the post-chemo zone is what I now call my 'chemo cold'. This consists of a constantly runny nose, sores inside my nose and several small/tiny nose bleeds a day.

Monday/Tuesday

For the first 2 days directly after the pump is removed there is the post-chemo and steroids tiredness. A bone aching weariness that finds me propping myself up against tables when I am standing and leaves me with precisely no patience when it comes to dealing with 3 kids and 2 dogs. Apologies to the small and tall residents of Slyvan Way.

Tuesday onwards

The spots start multiplying this week too but they are so much better since I've upped to the antibiotics, that compared to everything else they are really quite minor irritation (the scalp ones are still pretty itchy and awful though).

Monday to Thursday

My levels of indigestion and stomach cramps start to increase from Tuesday culminating in my regular Thursday morning attack of terrible pain and vomiting. The bucket and I are reacquainted and the cold sweats and cramps make for a hideous but regular diary entry. I now have this marked as a meeting in my work diary so I can be late if required. However once it's done I take a loperamide and it's over for another 2 weeks.

 

The Nadir

The Saturday (8 days after chemo) is my immune system's nadir. My immune system is at its weakest and apparently I am very vulnerable to infections. I've yet to experience this in an obvious way but  this is when the mouth ulcers kick in. Lining my tongue, lips or inside my mouth. They pick their position and bed in for at least 5 days. I have a great new mouth wash that leaves the inside of my mouth completely numb and helps hugely.

One week after chemotherapy

My skin also reaches new levels of dryness this weekend. Patches appear on my eye lids, round my nose, and across my cheeks. Again it's all pretty manageable and now I have the antibiotics skin issues are signifcantly less of a challenge.

10 days after

It all starts improving. The chemo cold is pretty much over by Wednesday, mouth ulcers have disappeared by Tuesday, my gums stop bleeding on Thursday, my skin starts is clearer and less dry towards the end of the week and my energy levels return; just in time for it to all start all over again.

2 weeks after - like poor old Michael Finnegan it's time to begin-again

7 hours of hardcore drugs pumped into my arm in the cold grey dull space that is the Chilworth Day Unit.

I am lucky (although getting cancer itself isn't that fortunate), my chemotherapy symptoms are more of a series of staggered niggles  rather than the complete wipeout that lots of people experience. I am able to work pretty much full time and cope with everything with support and help from Al, my mum and Battersea all of who are being amazingly wonderful. A lot of people, especially those with more aggressive cancers, are sick constantly, lose their hair and find the treatment as tough as the disease to deal with. I am not one of those and I am very grateful.

In terms of the pregnancy likeness of it all, I am also aware that, as I am fairly regularly reminded, that apparently I whined a lot more when I was pregnant. Now there's an irony.

Steve Jobs - one of my heroes.

Besides a love of Apple, and my desperate desire to be a bit of rebel (within a conformist environment), Steve Jobs and I finally have something in common. 

Cancer.

It wouldn't have been my first choice.

A glittering career as an innovative world changer would have preferable but I guess you can't win 'em all. And whilst I am no slouch in the fundraising area I expect Steve was slightly ahead of my game by the time he hit 40. 

But like me, and millions of others he joined the cancer club. Membership lasted 8 years and right now that seems like a lifetime. In 8 years time Rosie will be approaching 11, Zak will be at University and Ilias will be a stroppy 15 year old. It feels so much better than leaving now, or in the next three years, but I know that it is always too soon. Once you're in the cancer club every future dream, every hope, every 'next year' is tinged with a mental 'please God, let me be here'. That's the reality and I don't expect it ever goes away. 

But Steve Jobs is a hero of mine and he died a year ago. He's one of my heroes because he was an innovator, because he'd 'rather be a pirate than join the navy' and because Steve Jobs founded one of the world's most creative and amazing companies that embraced difference and challenged the usual way of doing things. So in remembering Steve Jobs I hope I embrace his spirit in my life and my work and that in doing so, we have more in common than cancer. 

I got dem post-chemotherapy blues

Okay, I was a tad premature in my 'the spots are on their way out' jubilation. They're back, and whilst they don't have quite the full force of before I think it's an uphill struggle for the antibiotics to keep my skin under control. My chest and back represent the worse kind of pizza skin (thank god for scarves) and are ludicrously itchy. There are spots all across my nose, chin, around my hairline and even on my eyes plus my skin is dry and flaky and feels constantly tight and sore.

I also have ulcers inside my mouth and on my lips, nosebleeds, a tummy upset, horrific acid indigestion and I am probably feeling a bit sorry for myself. I keep trying to remember that I am getting away quite lightly with this whole chemo business. I've been in work every day this week - and been busy - and managing not to be sick once (okay I was sick this morning). I am also lucky in that my mum has turned into Mary Poppins and provides a cooked meal every evening and empties potties and ushers children around during the post-chemo week. Al puts up with a lot and takes over the minute he gets home. But all of that aside this isn't the most fun thing I've experienced. And I am not sure I am the most fun person to be around a lot of the time. 

Lance Armstrong called his dog Chemo because chemotherapy saved his life. I am hopeful it'll save mine too but as dog names go I have more pleasant (and non-drug related) memories that I'd like to draw upon. He could have called his puppy Steroid - that would've been an interesting choice...

In a more positive minded way I am also holding onto the fact that life gets better for me from the weekend; when the worst of the post-chemo symtoms are abating and by Thursday I'm actually feeling pretty good. Just in time for my next dose. But I will get a few days of feeling good and energetic and without a sore mouth - the ulcers and the spots are actually a pretty debilitating combo.

So for now admire my stoic bravery from a distance - it's not that pretty or that stoic close up, just ask the rest of Sylvan Way...

28th September

Tweedledum and Tweedledee

September's final chemotherapy treatment bordered on the slightly surreal with some brilliant evidence that even faceless bureaucrats can have a great sense of humour (thank you Michael).

The first odd moment came when a man sat down in one of the chairs wearing black jeans, Nike trainers, a orange stripey jumper with a leather jacket and a flat cap on backwards (ref. Ben V-P from Curiosity Killed the Cat for those of you with a passing knowledge of the 80s). He was late 30s early 40s with a shaved head, in that 'bloke' way, and in for his chemotherapy treatment too. Nothing strange about that until he got up to leave the room (having taken off, and left, his jacket and cap) and then about 10 seconds later reappeared from a different angle with the jacket and cap back on. Bearing in mind I've only just stopped convincing myself that I have a brain tumour this was a little weird. I quickly realised that this was the twin brother of the other chemo patient.

The nurses on the Chilworth Day Unit (some of who are not known for their rapier like wit) then proceeded to make the same joke about giving the wrong brother treatment about 15 times in the course of a 10 minute period. I felt that the twin who started eye-rolling and looking a bit bored was somewhat unjustified in his frustration as let's face it, if you dress the same as your grown up brother what do you expect? These were adult men making a decision to reinforce their identical twin status through clothes - deal with it!

I should also add that my slight lack of sympathy was compounded by twin A choosing some Chilworth Day Unit tunes and twin B cranking up the stereo so we could all hear Cliff  Richard blasting out. Cliff Richard! I mean Cliff Richard! I am already poorly! And then they sang along. I was at a Cliff Richard Karaoke Chemotherapy Convention and it wasn't out of choice. My response to this terrible onslaught was to email my friends at Battersea and ask for some amusing pictures or stories to distract me, one person took this a stage further and decided start an epetition at Downing Street.

Today they came back to him

The Downing Street Response - "the Silver album is a pop classic"...

Proving that whilst Civil Servants have very dodgy taste in music (Reader, I married one) they also can have a great sense of humour.

Medical news

The spots are clearing up! Yay! Yay! Yay! Double dosing on the antibiotics has had an effect, and whilst my chin is still not the smoothest place on earth (this title is claimed by Julio Ingleses sheets) it is significantly better. Most importantly I am feeling less stressed about seen in public, it hurts less and the itching has died down. All very very good.

Chemo is still leaving me with significantly less energy than normal but I am also feeling some positive benefits. My liver swelling seems to have calmed down a little and I am feeling far more comfortable. These are all positive signs.

Zitta-dee-doo-dah! Zitta-dee-day!

So after complacently cruising through chemo round 2, I can report that like most aspects of the cancer journey there's a fairly consistent cloud to every silver lining. In this case just three days after the cetuximab was pumped into my system, a rash appeared on my chest. This, of course, is recognised as being a sign of it's efficacy and I am very pleased it's to have the rash. Initially bright red rash appeared with the odd 'acneform' spot that was painless and easy to ignore. No comedones in sight just a maculopapular rash. Oh yes, I am fully conversant in the language of spots these days. For those of you less fluent 'comedones' are blackheads, and an 'acneform' rash is 'acne like' but not actually acne and maculopapular means something too. And I have really bad peritus (itching). Lord knows why the medical profession can't just use common parlance (speech).  

Anyway by the weekend my 'ooh this is a positive sign' happiness had worn off and the horribly itchy spots throughout my scalp, round my nose and mouth had become a tad less exciting. I now have spots across my scalp, covering my chest and back, round my nose, hairline and chin and I'm wearing so much cover up I could easily join a reality TV show - admittedly it's pasty white not orange but the look is all there. I've had to stop wearing a necklace as the itching is so unbearable and have taken to downing a few anti-histamines to cope. 

So by Tuesday the scabby horrible itching reduced me to tears and I phoned my lovely husband at lunchtime sobbing with self pity. He was of course wonderful and whilst my skin still felt horrible at least I'd had a virtual hug and some extra support. 

Fortunately my up and down emotions can create some moments of humour. Later on that day Al received another phone call from me. When he answered he could only hear some strange noises and my voice breaking up. Thinking I was crying he reassured me that everything was okay and said "it's alright sweetheart you can talk to me, just tell me what's wrong". What a lovely man. Unfortunately, or fortunately, depending on how you look at it, this kindness was directed at my back pocket. Al was gently and sweetly, giving love and support to a misdialed call. I had inadvertently dialled his number when I put my phone in my pocket. Still as someone with bowel cancer I expect my bottom could do with extra reassurance.  

Today's trip to the hospital was fine, and they've doubled my antibiotics to keep the cetuximab rash under control. This is good, as currently without make-up I could frighten people. Rather than 16 from the back 60 from the front, I have a case of 14 from the chin and 40 from the wrinkles. It does seem a little unfair. However I am also aware that without the spots I would be seriously stressed that the cetuximab wasn't working. I can tell you all, that other than the vaguely pleasant train trip to Guilford, there's not a completely easy part of this journey...

My 14 year old chin...thank god for cover up!

My Chemical Romance

So what a difference two weeks or at least a major change in attitude can make.

Two weeks ago chemotherapy laid me out; it made me sick (although some of that was a bit of medication adjustment needed), my bones and muscles ached and I was completely exhasuted. The weekend of chemotherapy was basically meant a lost one. And not in any sort of fun way.

The second weekend of chemotherapy has been far more managable. In fact, I've pretty much sailed through it. Yes I've been tired, and the steroids are a disaster sleep wise but we also completed a successful (and obscenely expensive) trip to Waitrose (I'm much too ill for Sainsburys), had a lovely long dog walk and I've made brownies, cheese scones and a cherry cake, oh and squeezed a sharp new bob into the mix (haircut). All good.

To back-track to Friday night...

On Friday night I attempted to exorcise my steroid demon through a relaxation app, Tibetan monk chants, and yogic breathing - did I mention the resurggence of my inner-hippy? I managed to avoid whacking Al in the face but by 2am the gentle and holistic techniques were out the window and some sleeping pills were required. A blunter tool but pretty essential. I could feel my limbs twitching and buzzing and thoughts were racing through my head randomly and annoyingly.

Not relaxing enough for me.

However this didn't destroy Saturday. Al managed to keep Rosie under-control (this is a major achievement) and I went back to sleep for an hour. So the day was recovered and had a lovely walk with the dog, and the chemotherapy.

Al says this is a hand grenade. I say it goes in the washing machine. Men are from Mars...

Saturday night saw a far early submission to the sleeping drugs but then I woke up at 3.30am wide awake and speeding through the valley of the 'roids. Getting a grip on my other side-effects has been wonderful but this one is a challenge.

So other than some sleeplessness it's been exceptionally uneventful.  Maybe I should make this blog about baking?