Oxaliplatin round 5 versus Rachel!

Positive police do not worry – I am not feeling in the least bit sorry for myself, I just fancied documenting whilst I remember, the various inventive side effects of chemo and in particular a nasty little nerve drug called oxaliplatin.  On the days when my body cuts me some slack and I feel normal again or as normal as I can remember it is supposed to feel like,  I can try and ‘love’ this poxy oxy in the hope it is acting like a cold blooded serial killer, showing no mercy as it hunts down the devious cancer cells. Sadly it’s not intelligent enough to weed out the bad guys from the good guys and just mows down everything in its path whilst I keep my fingers crossed there are enough white blood cells left to keep the rest of my body going when it’s finished its latest 2 week killing orgy.

But right now when I am still struggling to throw off chemo round 5, I am not even on speaking terms with poxy oxy or its sidekick capecitabine. 

Chemo is cumulative and I am beginning to really understand what that means as the recovery period takes a little longer each time and some of the side effects start to show signs of being a bit more permanent.   I have even read that the nerve damage brought about by Oxaliplatin can continue to muck you about for 18 months after treatment or ‘treat’ as the chemo nurses call it, finishes.

I remember sitting in the oncologist’s office before starting chemo and him telling me no 2 cycles would be the same and as everyone reacts differently there is no way of predicting who will get away with it and who will not! As it became clear I was not going to “get away with it”, I was comforted with vague murmurings that it might mean (no one ever commits themselves to assurances) it’s doing a better job on me and this could be interpreted as a positive sign!  Thanks Doc.

So, here is my documented reaction to being nuked. It’s a 3 hour process preceded by antiemetic sickness drugs which need an hour’s headstart, followed by more anti sickness drips and steroids before the Oxy infusion can be dripped in over 2 hours. Almost immediately I begin to feel my brain shutting down and the nausea starting to creep up on me as the last remnants of energy are sucked out.  Before you leave hospital and step outside into the cold air, you must first mummify yourself with scarves, hats and gloves as the smallest breeze freezes on your lips and if you accidently breath in cold air you cause your throat to go into spasm, which having witnessed someone choking on my first chemo cycle, I never want to experience.  Almost immediately my fingers start tingling and any pressure or cold brings on extreme tingling sensations in hands and feet.  This is called peripheral neuropathy.  It can be permanent so much care is needed to avoid cold, even to the point of going into the fridge with gloves on!  The most unpleasant feeling is the effect of the cold on your face as you feel your forehead, upper lip and nose freeze like a botched batch of botox!  On several occasions, my eyelids have dropped shut and been unable to open in a kind of nerve spasm.  My tongue swells in my mouth and I am left with a nasty permanent taste in my mouth, only relieved temporarily by eating something strongly flavoured which explains the rapid weight gain!  It is strange how you can feel both nauseas and ravenous at the same time.

As Oxy continues its hunt around the body, I suffer first constipation and then the opposite!  I have no idea whether it’s Oxy or the steroids, but being a jittery bundle of nerves unable to concentrate but still unable to sleep is a masterpiece.   By about day 2 the heat comes and my face, hands and feet all feel like they are on fire as my face lights up like a Halloween mask!  By day 3, I have horrid night sweats joined by the dreaded bone and skin aches on day 3 or 4 which seem to last for a good 5 or 6 days. I had welcomed this one as although it feels like flu with every pore in my body aching, it is comforting to feel this lymph pain particularly strong around my face, neck and legs as it is proof to me the chemo is circulating throughout the lymph, which considering the cancer had spread to my lymph and liver is jolly good news.  My face by this stage is round and moonlike and although Mum says she likes it as I look younger and smiley, I think it makes me look like Paul Gascoigne in his heavy drinking days. Although like Paul, I am glad to say it does reduce in size again from about day 8 and whilst I wouldn’t use my cheekbones to slice bread, they are beginning to be visible again.

I have got used to wearing seabands instead of bracelets and drinking everything slightly warm, but I long for an ice lolly or a really cold refreshing drink.  I have just seen that spring is going to be a scorcher again this year but I won’t be boosting the ice cream man’s profits!

I begin cycle 6 on March 9^th, assuming my white blood count recovers which is precariously low again, despite bone marrow injections, a 20% reduction in chemo dose, acupuncture and Chinese herbs!  Then just 3 more sessions of this to go before I can join the ranks of post chemo patients who have their brains washed into remembering nothing less unpleasant than a little bout of flu!  Can’t wait.

Update on the giraffe sticking out the roof

In yet another shining example of the different ways people react to testing circumstances, I am thoroughly delighted with a letter I received yesterday from a firm of architects.  Regular readers may remember the pitch document to the UK’s top architects to enquire about the likelihood of getting a bananagiraffe projecting from the top of my house.

You may be forgiven for thinking this is not an indication of normal behaviour and will doubtless be met with a stern rebuff.  And yes I admit that not all architectural practices are designed with a funny bone in mind.  But we have hit gold with David Chipperfield Architects, who posses not only a fully flexible funny bone, but also a heart of gold.

Thank you sincerely from Bananagiraffes for your generosity of spirit and funds and a big thank you on behalf of beating bowel cancer as well who will I know be delighted to receive such a spontaneous donation!

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 3^rd 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 9^th 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.

Hartwell House and Dancing on the Edge!

As Jenny and I arrived at Hartwell House for an overnight Spa stay courtesy of Dad, we walked smack bang into a film set.  The security guy at the door and Manager ushered us towards the BBC area as we walked into the Grand Hall.  It was only quick thinking by Jenny who alerted the confused duo that we were paying guests, which avoided us causing all manner of mayhem with Jacqueline Bisset and Anthony Head!

The BBC is filming a mini-series called Dancing on the Edge due out next year, set in the 1930s. Over 80 crew members, Lorries littered all over the place and a 12 hours of filming, all for 4 minutes of footage!  Nice to see the BBC doing its bit for the deficit!

It is a pretty spectacular place and perfect for relaxation, especially as all guests obviously take a vow of silence when they check in.  You could hear a snowdrop drop, which was a bit of a temptation for Jen and I to liven up the guests, but after several attempts of CPR they were not to be revived.  So we turned our attention on the staff instead and when asked on a hourly basis if there is anything they could do for us, we came up with a long and inventive list which involved mini goats in the room, dancing men and horses, blanket for molly the car and an underground tunnel to the spa building.

These requests were met with good humour and a nod of agreement and although we had a green flashing alien on the ceiling in our room all night, we never found the mini goats or champagne filled bath.   We crunched our way through the ice to the spa (Hartwell House recorded temperatures of minus 11 on the day we arrived), and cooked ourselves like sea food in the Jacuzzi, lost a couple of stones in the steam room and tried to get a beauty treatment.  Unfortunately they refused to touch anything of me other than my hands on account of the chemotherapy which they obviously thought was treat enough!  So I paid for a manicure and promptly smudged it all off trying to get dressed.

Hartwell House is remarkable for its history and architecture.  We ran out of time re-creating many of the statues but Jenny found one which tickled her fancy and I found a long lost relative judging by the size of his nose. 

 

We slept solidly in pitch black and complete silence and left minus at least 2 big bags under our eyes.  Very, very spoilt girls.

Chinese Herbs and ponies

I thought we were due an update on the medical research progress of Superdad.  Now those of you who know him will testify to his methodical research and caution and certainly wouldn’t label him a shopaholic.  An easy mistake to make and one which doesn’t fool me anymore, for there is a gene in our family which, with no prior warning can kick in and cause all manner of contradictions…  One notable example of this break from normal service was the purchase of a wild untamed new forest pony bought with about 10 minutes notice for his (me) 10 year old daughter after driving past a for sale sign during a week’s summer holiday. The decision was even more alarming when you consider I knew then as much about horsemanship as Fred Goodwin does about restraint.

Not quite on the same level of spontaneity and enjoyment, but nonetheless caused by the same charming quirk, the shopaholic gene has kicked in again and we know have more remedies than your flagship Holland & Barratt, and the latest purchase to join this collection is Chinese herbs.

To help persuade me to drink this brown potion to treat my blood, Superdad gulped down a glass and declared it tasted very nice and rather like warm liquorice.  Meanwhile Supermum carried on fumigating the house and had to drink her potion in secret in the kitchen for fear of giving away tell tale facial signs of distress.  I have now drunk mine and whilst I might need to have my brain thoroughly washed before I view it as a treat, it wasn’t half as bad as I thought.  Be interesting to see the white blood count in a couple of weeks….

If you are interested in research into Chinese herbs and colon cancer click here http://summaries.cochrane.org/CD004540/chinese-medical-herbs-for-chemotherapy-side-effects-in-colorectal-cancer-patients

 

 

 

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.