I’ve been de-ported at last!

My hospital visits are now thankfully reducing as fast as sales of Lance Armstrong’s memoirs.  But anxious to get the most from our ‘season ticket’, my children have done their best to take up any slack over the last few days.  So let me tantalise you with the edited highlights.

Joseph had eyes bigger than his belly, Lois’s finger was hanging by a thread and I was de-ported. Still with me?  Good, then we’ll continue.

Friday “Hello, this is Holmer Green School, can you please collect your son, he has lost all vision in his left eye and we think he may have a detached retina”.  Champion.  I am not allowed to drive yet, so Supermum was drafted back on the case and despatched with my one eyed son to Stoke Mandeville.  Thankfully, it turned out to be a visual migraine resulting from a kick boxing accident the night before.  And if that wasn’t enough, the other eye jealous of all the attention, got itself splashed with hydrochloric acid (albeit thankfully highly diluted!). Hypnosis alert; look into my eye.

joseph eye

Monday: “Hello this is Wycombe High School, can you please come and collect your daughter and take her to A&E as she’s just had her finger sewed to the sewing machine”.  Awesome.  Not the words you want to hear when you are still learning to control your bowels!  Supermum had just been allowed out again on parole to the local Tesco’s for provisions, but was quickly yanked back on the extendable lead we have supplied her with. Dumping the shopping for my Dad to colllect, she drove me to the school to hold Lois’s other hand whilst the needle was swiftly removed with the help of gas and air.  (Note to Lois’s future husband reading this after 2025 at the very least, or there’ll be words, she doesn’t ‘do’ gas and air, think again). But not one tear or word of compaint.  Top girl.  Look away now; squeamish picture alert. Oops too late!

lois finger 002

And In other news, I was de-ported today.  My ‘power’ portacath or USB port as I call it was finally allowed to be removed.  I know I’m not out of the woods for years yet, but 6 months of clear CT scans was enough to make me want to get the last reminder of cancer apparatus removed from my front body.  And as my oncologist cheerfully reminded me, I can always have one put back in if the cancer comes back.  Cracking news.  But with a great big fat caveat that I still have private healthcare, because nuking you through a closed port straight into your jugular is classed as a luxury, naturally.

So here’s the drill for taking out a portacath.  No sedation.  More on that later.  But lots of local anaesthetic which I was warned would feel like I was being stung by a bee.  I put on a nice hat, was told to lay down and look right whilst I was covered in a sheet of plastic hooked over a drip stand, not unlike an abattoir I felt.  A section was cut out exposing my left chest and a stray boob.

There’s quite a bit of cutting, shuffling and pulling around inside your chest to locate it (apparently mine was deep.  I was strangely proud of this) and some rather disarming scraping noises. So to avoid focusing on what was going on with my jugular (yes my surgeon come radiologist come rock star did tell me he could cause a bleed but I was comforted to hear he “knows how to stop it”) my mouth was unleashed and I talked non-stop about all manner of nonsense. The procedure took just over half an hour to remove during which time I learnt (or thought I learnt) that:

My surgeon stitched me up with pink cotton (apparently not, demands for “More pink” whiilst he was sewing meant something entirely different). Any liquid I felt trickling down my chest was to be identified as follows; “If it’s warm it’s blood, if it’s cold it’s pink”.  My portacath wasn’t “stitched down” in position explaining the awful bother my chemo nurses had to keep the blighter still so they could stab it with one of their thick needles each time.  Pat doesn’t have her own slide, it’s a slide to move patients onto beds apparently (PATSLIDE).  My chest x-ray was clear of any left-over bits of tubes and stuff. And finally, my radiologist was a thoracic surgeon and is also a part time rock star which I will now be looking up on youtube.  I mentioned I was also on youtube dressed as a bananagiraffe to which he replied “Why doesn’t that surprise me?”. 

The last words I heard him utter to his nurse as he wiped sweat of his brow; “My goodness we should have sedated this one after all.  My ears are bleeding more that her wound”.

I now have to wait four dry (note to self do not get chest wet) days before I can inspect it and thank Dr Radio/Chest/Rock star for his neat sewing.  Hopefully no fingers were lost in this episode. Righto, I’m now feeling a bit light headed, so going to rest my head.  Amuse yourself in the meantime with a picture of the removed specimen in a jar.

port 002

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Chemo number 7 versus Rachel

The upside of my blood recovering has meant I went ahead with number 7 yesterday as scheduled, and it all went super smoothly.  I even managed to leave before the nurses turned off the lights and got treated by a new nurse putting my steroids in by drip rather than injection; amazing what passes for pleasure these days! And Jo did a change over with mum and turned up at lunchtime with liquorice toffees. Everything was going like clockwork….hmmm.

Until I tried to leave and found the neuropathy and chemo fog had descended so fast, my friend Jo resembled Usain Bolt as I tried to follow her to the car park!  And this from a women who broke both ankles and wrists last year, so I must be hallucinating or the nice nurses have messed about with my wiring again.

And sure enough sickness followed and my body began to emitt its usual chemo glow lighting up the chiltern hills. You walk in to the sight of a miserable grey rainy Buckinghamshire sky and leave a few hours later filled with chemicals and heh, instant Maldives!

Chemo number 7 is shaping up to be a nasty piece of work and roughing me up a bit too much.  Now Knock it off!  Meanwhile Dad, decorator turned nurse administers the bone marrow injections!

I will remember this weekend for ever

This weekend when our weather knocked cheating celebrities and other matters of national security off the front page of our national newspapers, I went to Brighton with my teenage son, Joe.

Used to conversing in complete sentences of only one word, it was a brilliant revelation to find we could hold detailed and long conversations about all manner of subjects from black holes to Bear Grylls; How many bears can Bear Grylls grill if Bear Grylls could grill bears?  Bear Grylls can grill one bear on his grill as he only has a one bear grill.  Or something like that.

Joe’s sceptical attitude to everything and everyone around him was hysterical and I am now totally ‘teenaged’ up on what’s cool or not.  (Apparently for reference, just about any make of car other than Aston Martins or Bentleys are gay, as are most clothing outlets with the exception of Superdry or Bench and many other items, too long to list here including the humble ice cream).

Sadly after the best weekend, we had to come back (him to school and me to the chemo ward), but not before we attracted the attentions of a ‘strange’ individual on Brighton Beach who locked onto us from the thousands around us, like a heat seeking missile.  After a rapid fire exchange of information in which we learnt his weight, height, leg injuries, number of sit ups he could do and his prediction that Birmingham will become the new capital of the UK, we made our escape before my left temporal lobe threatened to detach itself completely.

With all the delays to chemo, I have felt quite normal for the last 3 weeks and had quite forgotten what it feels like to be so ill, which goes to prove my point about short memories where treatment is concerned. But off for the 4th blood test first thing and if neutrophills are go, I will be spending tomorrow afternoon being nuked.

When I re-enter the real world again, I will plot a similar outing with my nearly teenager daughter Lois!  And more treats have been lined up; with a bit of luck we will be back in Brighton in a couple of weeks with Lauren and Jo.  Can’t wait.

Joe shortly before someone threw a cigarette but from balcony above "nearly setting light" to him!

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. 

 

 

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.

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