Cancer and a lesson in patience!

Before cancer, I had never considered myself in any way a control freak and was happy to let chaos theory take over my life.  However once I began my new full time occupation of visiting men and women in white suits, something strange happened and to my amazement I tried to think ahead and build a plan encompassing occasional treats, visits and even possibly a bit of work.  This has proved more wasteful and pointless than the British water industry.

So here’s my advice to anyone trying to plan ahead; think of a number, add 7, triple it, take away the first number you thought etc etc.

You might by now be gleaning that today’s 2nd attempt at chemo didn’t go according to plan and my blood has played yet another or it’s hilarious practical tricks on everyone.   It started with an early visit to hospital to extract more blood to see if my count had raised enough overnight to hit the minimum quota.  Despite Mary Holloway my brilliant reiki lady encouraging me to drink more water, Dad making up even stronger Chinese herbs, Mum pumping me full of protein and Sam (she is without doubt top Needle nurse) hitting the portacath spot first time again AND Jenny turning up to be chemo cady, the neutrophils still said no!

Now if you can imagine getting all the little jobs out the way that you know you will not feel up to over the next week or so (and yes this does include tackling the endless, some might say equally pointless stream of parent mail) and then adjusting the dimmer switch inside your head to 75% off energy saving levels, you will understand the frustration of being told “if you could just do that all again next week, we try again”.  So now my plans for seeing Bear Grylls with teenage son next Saturday and possibly the end of treatment holiday celebration on 1st June are looking a tiny bit unlikely.  Grrr, grrr and double grrr. 

 

 

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How the English deal with the embarrassment of Cancer

Being a “little bit under the weather” highlights the very essence of being English. Our national character trait is to be self-depreciating and crazily understated.  We would rather chew off our own tongue than be accused of the heinous crime of boasting. Luckily we disguise any whiff of a boast under the cover of “one downmanship” which we show off when discussing anything remotely serious. But… it is still not enough to shrug off our predicament in a dismissive manner; it must also be done in a witty or amusing way. 

How fortuitous for the English then to posses all the perfect characteristics to tackle the jaw dropping embarrassment of having cancer, or worse still talking to someone who has!

It is absolutely forbidden for example to answer the polite enquiry” how are you?” with a “not very well, I have cancer”.  This will be met with nervous coughs and raised eyebrows.  You will have to be English to appreciate how utterly discomforting those coughs can be.  So a better answer perhaps would be “oh, not too bad, had a bit of the bowel and liver out and my body looks like it has been stitched together by the local reception class, but mustn’t grumble, had a few days off work!”.

Humour is our favourite coping mechanism and it strikes me we are at our best when we are laughing right in the face of adversity. So give me a dollop of irony, humour, mockery or gentle teasing any day of the week please.

Freaky Friday and chemo number 5

The day started predictably with light following dark and kids sleeping in nicely after our thoroughly wonderful treat of tickets to Circ de Soleil in a beautiful box courtesy of David and Kate. Things were not to remain normal for long however…

“Has anyone got a bung for my oooji?” my chemo nurse enquired to the other chemo nurse who promptly without the need of a translator provided the missing bung.  I didn’t see where she inserted it.  There followed an animated conversation with her colleague on how to hook me up to the drip from my portacath.  I suffer a little deafness, but Beethoven himself would have been perfectly capable of hearing this conversation!  “I am not very good at finding these portacaths are you?” “No, I don’t like doing it, they move around too much. I tried her last time and after 3 attempts had to get Sam to have a go”.  Undeterred by their lack of success they made their way to me brandishing needles and sure enough had a good old game of stick the needle on the donkey, although this donkey was playing hide and seek .  Finally on 3rd attempt Sam was called and found the illusive portacath on her first attempt again . Champion.

In then came a shot of steroids called dexamethasone or dexy’s midnight runners as I call them.  Hate them as much as I did the band and whilst they don’t sing Come on Eileen at the end of the evening, my legs do a passable impression of dodgy dancing and twitching all night long so don’t tell me that’s a coincidence.  Anti sickness injection followed and we were just about to keep to schedule when I noticed my name on the chemo was Brown, not Bown.  Now, I have no problem with this as have never been attached to surnames, but Chemo nurse was on the case… “that dipstick boy doesn’t know what he is doing”.  Hmmm not at all alarming then seeing as this dipstick boy is from the pharmacy which makes up the chemo and I am pretty sure there is some strict science behind it.  At least I hope dipstick boy doesn’t approach chemical recipes like I do food ones with a “that looks about the right amount” mentality. 

And then came in Jim!  As Jenny and I are both fully paid up members to the magnetic loony club, we sure enough attracted him like aftershave to a teenage boy. I am aware of the bloggers rule of ideally sticking within 750 words so I cannot possibly do Jim’s medical life story justice so you will (unlike Jen and I who are now about to embark on a deep sleep to recover) have to be satisfied with the edited highlights;

I cant turn Jim's image around but I dont see why I should be the only one who had to turn their head awkwardly to see Jim all day!

Jim aged 79 is a real character, has lung cancer and has lost 4 and a half stone, but this was mere child’s play to Jim who had died outside this hospital in 1996 when he started to see zigzags. Stories of defibrillation, finding himself cut out of his clothes including his coat and vest, quadruple bypass, stents and blowing up to a Michelin man and the effect on his male vegetables…were just the warm up act.  We flew through the procedure for popping his eye out and replacing the pupil with a bit of plastic and a collapsed lung after a biopsy (you will be glad to hear Jim’s tumour is responding well and in his words has now disappeared after 2 chemo sessions) before changing pace and discussing Jim’s food intake. In short anything nice and sweet preferable with lots of fat on it yes please, anything green and healthy no thanks. Although he can eat Baxters Broccoli and Stilton soup but Mrs Jim doesnt like the smell. And all this information conveyed whilst eating a packet of crisps thus turning Jim into a human pea shooter and Jenny, should she now wish, has plenty of Jim’s DNA to test out on Matt’s DIY cloning set at home.

All in all a brilliant days entertainment and distraction, the time flew by, no magazines were read and everyone in the ward tuned into Jenny TV and are looking forward to the next episode hopefully on the 9th March.  

And Jim, don’t forget, in amongst the TMI, you gave us your address along with your DOB so expect a birthday present in due course and maybe a small present!  

Hope to see you again shortly, something tells me we have just scratched the surface.  Any script writers for Holby City might want to get in touch too.

I am excited by simple things again

I was firmly convinced for many years that there are things which I am hopelessly incapable of doing and happily kept topping up this list over the last 6 months.  But there comes a time in your treatment after a long period of enforced abstinence that you actually get excited by the simple things in life again.  

Like X factor, I am sure the novelty will wear off soon, but at the moment I am enjoying:

  • Browsing around a supermarket and thinking of inventive things to do with chick peas or lentils
  • Making fire
  • Tidying the house and chucking out stuff

And finally, dipping my toe back into the workplace. This new style of ‘working’ is most agreeable.  It involves popping in to catch up with your team, colleagues and boss etc.  If you have been AWOL for the last 6 months, you will get many reactions.  The most common are big bear hugs and exclamations of “You look good” coupled with the confession “You looked pretty dog rough before you went off sick, but being British we didn’t want to say”. 

There are inevitably also a few people who won’t meet your eyes and are excruciatingly embarrassed that you are ill and terrified you will want to talk to them about it.  And for goodness sake it involves bowels!  Double no-no.

But the oddest thing is time, a concept I am frequently reminded is hopelessly unreliable for measuring anything, a guaranteed candidate for room 101 if you ask me. For example, the last 6 months have involved such a dizzingly fast amount of change and head rewiring that I feel at the very least it’s comparable with running a small Euro zone country.  And yet, for my work colleagues there appeared genuine shock I had been away that long; some thought I was just a bit late back from lunch, and were still busy working on many of the same familiar projects! One colleague wasn’t even aware I had popped out for lunch! I am choosing to view this as an example of how much work takes over our life, rather than the other less flattering interpretation…

Change is another difficult one to get your head around, especially if you just rely on the evidence of your eyes. The journey to work including traffic jams was unchanged, the office looked the same give or take a few rounds of musical chairs. To the naked eye, everyone looked the same.  My office still had my to-do lists on the wall. 

Plus ça change, plus c’est la même chose is all I can say!

p.s. In yet another case of “open mouth too soon” syndrome, I have been caught out again when my loo played a practical joke on me and the overflow overflew yesterday evening.  Managed to turn it off with a knife doubling up as a screwdriver and diverted Richard, my friend’s handy husband away from his valentine treat to mend it.  Totally sure I will not add plumbing to my list of challenges.

Ooh you look very well (translates into you look better than I thought you would)

Now that I am leaving my latest persistent vegetative state and my activity tolerance is an impressive 30 minutes, I can turn my attention back to observing the strange and funny ways in which my life and in particular, my appearance has changed.

And speaking as someone who would rather step willingly onto a flying saucer than a set of scales, I am finding this new monitoring and obsession with my weight very alarming. 

The only other time I recall my weight being under such scrutiny was during and after pregnancy and I have done my best since to forget and unlearn kilograms should I ever accidently fall onto any scales again.  However, I am now weighed more frequently than an average bag of goodies on MasterChef and it appears I have eaten the contents too. 

But what I can’t quite comprehend is the look of glee in the nurse’s eye when the scales top the last chemo sessions record and they exclaim “well done you’ve put on weight, go on treat yourself to a fried eccles cake sandwich”.  Such is the way of the chemo nurses who have mastered the art of making the depressing reality of chemo wards seem mundane and pretty normal that they think this calls for some serious celebration. NB: Piece of advice to anyone going through chemo – make sure you renew your passport before you start this fun and games otherwise like me if you happen to stumble across it in a mad clear out, you won’t be left enquiring when exactly did I start my job as chief cook and bottlewasher at Sellafield? Or why did I decide to plug my hair into the national grid?  Or weirder still, what thumping great accident or 10 years of heavy drinking caused the swelling up of my face to resemble 90’s poster boy Gazza?

But what’s interesting is I am noticing that I don’t conform to what people think a cancer patient should look like.  I know looking ‘hot’ now has different connotations, and it seems awfully vain to worry about your appearance whilst you are daily ingesting enough chemicals to deep clean the bathing facilities at a senior boys school, but I do daftly feel guilty for looking so ‘ruddy’ when I see people’s reaction and for a fleeting moment worry that they think I am putting it all on! And yet again (note to self), I feel a twinge of guilt for assuming in the past outward appearance is a good indicator of how you are feeling inside.

January chemo sale – 20% off!

Back in today for cycle 4 after 2 blood tests to make sure the little white blood cells are conquering their fear and standing up straight and defending their stations with more than the usual feeble “say no to cancer” placards.  So imagine my shock when they passed their physical for the first time ever this morning.  What heroes. I can only assume they were watching Birdsong on Sunday or maybe it was the bone marrow injections or maybe it was the acupuncture or the new pills which I have been gagging on all month. Who knows?

Yesterday my oncologist, confronted with my lazy bone marrow and a growing list of side effects had decided it was time to lower the dose by 20%.  Not quite the deal offered on the high street (Lois got Ugg trainers yesterday reduced from £150 to £40 so even I can work out that’s more than 50% off, but Super Dad will have calculated the true % by the time I have finished typing  this full stop).

Jenny was chemo caddy today and kept the whole ward amused by ‘Jenny TV’ as I call her when she is in entertainment mode. She also did a good job of alarming my chemo nurse by saying how we met; “we worked together, fell in love and then….when did we have our children Rachel?”.   My nurse nearly dropped my medication in shock and now has us down as a couple and will no doubt be totally confused when Tim accompanies me tomorrow to have the stomach injections. 

Anyway, I can feel the chemo fog descending as I type so you will forgive me if I am a silent for a few days as I take to my bed and bathroom.  Guest bloggers welcome!

P.s. I do however have new challenges on the horizon (in addition to the Giraffe challenge of course)

  1. Back at work a couple of days from home during the good weeks.  Wolters Kluwer been very understanding and supportive. 
  2. Placards and PR stunts to Number 10 when brave Ruth Dunn http://www.helpruthie.co.uk  and I are strong enough.  She is organising a demonstration and I and many others will be joining in.  Need ideas. 
  3. Robin Hesketh, author and scientist at Biochemistry Dept at Cambridge has written a book “Betrayed by Nature” about the war on cancer, out in May, but he also has a blog http://www.cancerforall.wordpress.com called Betrayed by Nature.  This man is a true find.  He is both funny and super clever and I feel I have taken at the very least an O level in biology the last few weeks from our email exchanges.   Anyway, for some reason which I am sure he will regret, he has asked me for some help in editing his blog and helping make sure it is written in a way that the interested Joe public can understand. 
  4. http://www.Sea2Sea.org  advising Tom Van Kaenel on any social media or marketing tricks to help him raise a staggering few million for American and British veterans when he cycles from West to East coast of USA in 79 days.  Tom has been a massive support to me and Beating Bowel Cancer with his concerts over Christmas and general time for everyone, despite being pretty badly injured himself.

Be Loud Be Clear

Fancy wearing a pair of these to work this week?

This is a post free from euphemisms and 19th century sensibilities, so I make no apologies if I offend any today!   Because the annual Be Loud, be Clear awareness week for bowel cancer starts this Monday and culminates on the 30th  with the launch of the government’s first TV campaign for bowel cancer.  And as early detection is a matter of life or death, it’s about time we got to grips with all this embarrassment and help knock bowel cancer of its unwelcome top 2 slot for cancer deaths in the UK; we lag behind the rest of the world so something is going wrong in this genteel island me thinks.

No other language comes close to English with the sheer volume of euphemisms that you could safely say in front of your maiden aunt and most of them referring to our bodily functions!  We have thankfully moved on from a time when terms for the parts of a chicken, such as breast, leg and thigh caused such anxiety and fainting spells that they had to be replaced with terms like drumstick, first joint and white meat.  So it’s high time we were a bit louder and clearer about what’s going on with our bums and go and see our doctor urgently if we are suffering from these symptoms for 3 weeks or more;

  • Bleeding from the bottom without any obvious reason. You may also notice other symptoms such as straining, soreness, lumps and itchiness around the back passage. These can often be caused by piles, but this is also a “red flag” symptom for urgent investigation, so it is very important to see your GP, who can take a full history and do an initial examination.
  • A persistent change in bowel habit meaning any unexpected or unexplained change to your normal habits of going to the toilet and emptying your bowels. It can sometimes be problems with constipation, and feeling that your bowel is not completely empty. It is especially important if you are going to the toilet more often or experiencing looser stools and/or passing lots of clear, “jelly-like” mucus.
  • Abdominal pain that is constant or which comes and goes. You should seek help immediately if it becomes severe.
  • A lump in your tummy especially on the right hand side.
  • Unexplained tiredness, dizziness & breathlessness (signs of anaemia).
  • Unexpected and unexplained weight loss.

Beating Bowel Cancer also have an excellent film called the Bottom line which I wish I had been aware of and watched. http://www.beatingbowelcancer.org/bowel-cancer-symptoms.

Lecture over. Thank you for reading!