Tao fo Tash - My wife in words and pictures. An ongoing blog of our life as Tash under goes Taxol Chemotherapy assisted by Herceptin for a secondary Breast Cancer occurrence in her Liver. These are our experiences of living through having this treatment, whilst still trying to live a normal life - yeah right!. Keywords: Breast Cancer Taxol Paclitaxel Herceptin Chemotherapy Young woman LOC CancerBacup

Sunday 24th July

Hair Today, gone tomorrow

We are both very tired after a what seems like a long drawn out week mixing the mundane issues of life with the heavier aspects of Tash's Wisdom teeth extraction, having her long flowing hair cut, speaking to everyone we know, and oh yeah, dealing with the reason for all of this; On Tuesday our new life for the next six months begins. Every 3rd week until the end of the year we are joining the ever growing band of woman with secondary Breast Cancer on the Taxol and Herceptin experience.

Having to have her hair cut short was a pain, but as she said, it's got to be done, eventually she will start borrowing my clippers and then razor. I am not particularly phased by this as it means that I will have to clean the hair out of the sink drain less often, my only worry is that we are going to end up looking like some performance art duo (if they are German, as they always are, they are invariably bald, hence my comments).

Before:                 After:                 To come!

T_hair_long     T_hair_short     baldy

Next update:

Tuesday 16th August

The Rules of

Cancer Club

Photos

Marrakech

Cornwall & Devon

Norfolk Weekend

Sicily Holiday

Weddings:

Our's

James and Sarah's

Jon and Helene's

Graham and Lindsay

The London Oncology Clinic
CancerBacup

Meet the Slev

The LOC is brand new, it is a private venture a quarter funded by 'Slev' our Onco', he is very proud of this speciality treatment centre. It is all high tech meets Zen pictures of calming water on a soft white background, very Slev.

Tash calls it the Starship Enterprise and it is a very pleasant place to have your partner pumped full of chemicals, should you ever feel the need.As I said it is brand new, on the last visit the toilet roll holder came off in my hand. Today Slev during his visit to our cubicle took the opportunity to fix the dividing door between us and the next couple along. We are taking bets on what happens next time.

Tuesday 28th July

Back in the saddle

Sent Mr Vic an email on Monday, telling him that things were really fine and we weren't worried etc... in yet another fine example of interspousal communication I apparently missed that we were in fact quiet worried about this, my fault for not having the telepathy module turned on again.
How does Tash feel about this? She would prefer not to be doing it obviously, but we knew that this was coming, the Herceptin that we started 16 months ago was only intended as a stop gap. Had we not scarpered off to Australia to get married, this would have been the treatment protocol that we would have had then. There was also a 'near miss' in May, some dodgy scan results, had our concerns been realised then, we would have been in a far worse situation than we currently are, perhaps that has softened the blow some what. It still sucks though.

Today's fun and laughter is being spread over 7 hours, which is nice, so we are armed with our usual treatment survival kits and then some;
Tash has a book, several magazines and thoughtfully two bananas.
I have remembered to bring 3 magazines (I am a quick reader), my laptop, a camera and more importantly a jumper, because it is always cold in these treatment suites, for some reason they think that Arctic temperatures equate to being comfortable.

Highlights include, having Tash's blood pressure taken, today by Amanda, going for a walk and Tash eating my lunch. It is difficult to keep conversation going for such a long time so we enjoy the silence and then when it is difficult to keep the silence up for so long so we ummmm.... have a quick discussion on where to find the underscore character on the TV touch screen monitor thing so she can check her email.

It doesn't get more exciting than this let me tell you.

Today's menu


Aperitif
Sodium Chloride (saline flush)


Antipasti
A selection of fresh steroids served infused in a light Sodium Chloride
Dexamethasone Injection
Granisetron Injection
Chlorphenamine Injection
Ranitidine Injection


Primi Pasti
Lightly tossed Paclitaxel (Taxol) 500ml in a Sodium Chloride Juis


Secondi
Fresh Trastuzunab (Herceptin) of the day


Refresher
Sodium Chloride (saline flush)


Dolci
A selection plate of our desserts
Domperidone Tab
Granisetron Tab
Dexamethasone Tab
or
Arthrotec
Hyosine


Coffee and Mints
Movicol Sachet
Bisacodyl

Cake can be a good distraction

LOC All-Girl Arm Wrestling team

Toaoftash.com - Dr Maurice Slevin at the London Oncology Clinic

Dr Maurice Slevin (Slev), a man who can spot a good photo opp when he sees one

Have Taxol will travel

Tash demostrates her famous Marg like stance

Wednesday 27th July

The Vomit man cometh....or maybe not

08:30
First thing this morning Tash is on the computer constructing an Excel spreadsheet to give us some understanding as to what anti nausea pill goes where and with which "unsticking" medicine (I will leave you to work out what I mean by that) . Dutifully I enquire if I can do it for her, apparently not and this is just as well as I am bound to get it wrong, list the wrong medicine and frequency, thereby making her sicker than she already is.
"How are you feeling?" I enquire
"ummmm well up until 5am I was thinking of phoning them to say I had been given the wrong medicine (we discussed going down the pub last night, such was her lack of symptoms), but now I have a dull ache in the bottom of my stomach, like I haven't eaten for 10 hours...."
"oh!", I rather unhelpfully reply.

I offer to make a cup of tea, as that always fixes everything.

15:00
Still fine, have just spoken to Kate, one of the Australian posse and had to report that it has been a bit of an anti climax really. Though I still consider this to be down to the massive amount of anti nausea agents that they have given her, rather than that I am married to some X-man mutant thing.

Take home drugs after Taxol Chemo

More pharmacy than you could ever desire

claire and stephen

Thank you Clare and Stephen for your flowers says Tash

13:00
Tash is 'slowing' down as she puts it, can feel a little bit of acid burn, but not much. I feel a bit stupid really, just hanging round waiting for her to be ill. As I am typing she has just launched a full scale attack on the kitchen, to combat the effects of the Chemo they pump you full of steroids, which fire up the metabolism, which makes you eat like a horse...and then some.

19:00
Not wishing to do the expected thing, Tash and I had a brief expedition into the City to our local friendly Dentist, Dr Sanjay, who very kindly repacked 'the sockets', Tash's cavernous wisdom teeth crevices with some bizarre but very welcome product called Magic Grass. Happily this was successful but has highlighted the difference between easily lazing at home and trying to do normal things post Chemo. She was very tired and a fighting a strong bout of heartburn on getting back into the car. I, being the caring sensitive chap that I am, had to use all my inner new-man strength not to drive home like I was in an episode of The Sweeny (1970's English TV Police drama, for our non UK friends).
In signing off tonight I can tell you that we are both extremely relieved that so far Tash has shown little or no side affects, though we are currently discussing whether that is a sun tan or early jaundice making her face glow.

Good night .

not my wife

Wolverine - not my wife, no!

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Saturday 30th July

Dark Side of the Moon

The week has progressed as you would expect by my previous comments, nothing but totally surreal. We have had flowers and well wishes from many people and all have been very much appreciated.

Sunday31st July

Third Rule of Cancer Club

Good news! I have not had to kill anything today and Tash has not made an attempt on my life! (see below). James and Sarah came round for lunch and that meant that Tash had something else to focus on and an excuse to get out of the house for supplies. She has been suffering with a bit of cabin fever this week so the company was very much welcomed,. There are only so many conversations we can have together about bowels and rodents after all. Seeing and interacting with people from the outside world made a big difference, if you would like to come round for lunch........

Tash, despite feeling rather shit at times has maintained a pretty good face throughout, so good in fact, that I failed to notice that much of it was all front.

We've been playing a strange game that alternates between me overprotecting her when it is not needed, doing the wrong thing when something else may have been better or simply not knowing that I should have done something at all. Joy.

Above: Thank you Sam and Jules

Left: Thank you all at ABNAMRO

Tonight was particularly surreal, we've had a house mouse. He appears occasionally and this evening I discovered him in the toilet (no not in the bowl). Thinking that I would rather he not meet Tash face to feet at 3am, and considering I had the blighter cornered (there was no other way out the bathroom other than the door), we had a bit of a cat and mouse chase (pun intended).

Unfortunetly for my cunning plan he did not want to go for the old door ajar, box waiting trick, so eventually I went in armed with the trusty mop to flush him out.

Things started well, got as far as cornering him by the door and then found myself having to reach for a holding bowl to restain this furry menace.

Carnage

Reconstruction: Mickey causes Bathroom carnage!!!

I had previously removed all of the breakables from any 'topple sensitive areas' and so, keeping him secure, picked up a ceramic bowl, that before being pressed into military service had been guarding cotton balls - Hey, how many of you have a handy plastic mouse catching container in your bathroom? - thought not!   So apparently mice can jump, which was news to me, and unfortunately ceramic will break if you then drop it, which I kind of knew all ready.

Sadly Mickey didn't make it, as post breakage and Tash's appearance, I discovered that the bowl had supreme sentimental value and so was a bit stuck as to what to do, as consoling Tash, whilst protesting my innocence with Mickey jammed up against the wall with a mop, was not going to be happening.

Ready for Battle

Reconstruction: Brave Mark Ready for battle.

Oh Nuts!

Reconstruction: One of the casulties of war

In so much trouble

Reconstruction: Oh my, that was an unfortunate accident!

That incident really sucked, but is illustrative of perhaps where we are at present. It is going to be a long time before Tash has finished the Chemo cycles and the discomfort that she has felt this week, but inevitably not shown, ends. Until that time we are having to find our way through the random physical and emotional mine fields and all.
Today if I am honest, I feel that we are coming apart at the seems, tomorrow however is another day.

1st - 7th August

The Adventures of the Fantasic Two

This week we have mostly been Superheroes, the Fantastic two, the invisible woman and Reed Richards (this bares no relation to how I might see Tash (pun intended) or myself by the way).
It dawned on me that the Superhero analogy is a good one for our current situation and in particular illustrative of the problems we are encountering, in this, the first of our two 'normal weeks'.

Traditionally according to the comics, whenever there is danger, the Superhero boldly goes off to vanquish evil, always triumphant they then return home slipping quietly back into their secret identities and ordinary lives.
We do the same, though with more regularity, one week in three. Our current task has been to pick up the Tash and Mark road show from where we left it.
Our first surprise was that it wasn't at easy as we thought it would be. We really tried to continue as normal again this week, do our usual things, but well, that just didn't work.
How Clark Kent has managed for so long, is beyond me, but mind you he gets to wear tights, so at least has something to look forward to. (that's a joke by the way)

Nice Tights

Superman: Nice tights if you can get them

This was, to be frank, not how I had planned the week to start, but after a bit of amateur diagnosis, we worked out that it was caused by an allergic reaction against the 'unsticking medicine'.
The invisible woman didn't make it into work that day, instead she had to make yet another trip into Harley Street, to make sure that it was nothing more serious than our diagnosis suggested. It was a rare reaction, but the dispensing chemist confirmed that there have been other cases, just prunes from now on then.

Tuesday to Friday was spent trying to shoe horn ourselves back into normality, as I have already alluded to, not as successful as you would have expected; for Tash there is this constant fatigue for her to cope with, I think that it is much worse than she lets on to be honest. As the week has progressed we have seen more of the side effects of the treatment appear, peripheral neuropathy, which is a general numbness of the fingers and now more increasingly she reports a tingling sensation in her scalp, we are just kind of waiting for the alopecia to start.
One success this week was that Tash has actually found a dentist who knows how to pack cavities extremely well, it is the small things that make the biggest differences.

idiot in elephant suit

How do I look?

Thursday was a high point, the girl felt almost like her normal self, so we decided to go out for dinner, which was very pleasant. Tash won over the waiter with a few subtle Italian words and phrases and off we went, good service all night. Walking home was entertaining as Tash hadn't had a drink for a couple of weeks, so was more than a tad pissed, I carried her.

Saturday, unexpectedly, we were invited at short notice to witness an 'administrative task' for some friends in Islington. This was a chance to dress up, drink, and have lunch and was, as ever when we meet up with the now Mr and Mrs Johnston-Dickson's, a lot of fun. As the newly 'administratively tasked' have pointed out, we were performing purely a functional duty and a larger party is planned for the future, though it has presented me with a few site design problems, so Mr and Mrs J-D, you now have your own sub heading for your photographs.

The week started at 03:30am Monday morning with a tap on my shoulder and a click of the bathroom light. This was followed with "can you come and look at me in the light, something's wrong". I didn't spot it at first, but someone had sneaked in and replaced Tash with the elephant man.

Sunday 14th August

Thoughts and Revelations

At the end of the first Cycle (or Cycle One, for you business jargon freaks) here is what we have learnt:


1) I think that Tash is developing Munchausen syndrome, as every time I speak to her, she is not at work, but in another consulting room. So far we have had Oncology, Oral Surgery, Dermatology and next week, Ear, Nose and Throat (Dr Death, as I so affectionately call him, we have kept him in business for the last four years). Hopefully this Baron Munchausen thing is just a phase, as it is bad enough that every surgeon and oncologist on Harley street has already had a go of her boobs (I feel that I handle this very well and have not asked any of them to step outside yet, that would be the consultants, not the boobies, I might add)


2) Christ, she has no energy anymore.


3) Physically going for Chemo is easy (apart from complications to do with above), trying to get on with your life after is harder. The Girl and I are only just starting to realise that this, if you understand what I mean, needs us to learn a whole new vocabulary to describe how we feel and then learn another to deal with each other. If you know Tash and I well, then you'll be really glad that you don't live with us, appreciate how much fun this can be!


4) 6 Months is a long time.


5) It is interesting having a relationship that exists now almost exclusively without alcohol. I am not suggesting that we are the only ones who have ever done this, as I imagine most mothers would have an opinion concerning that 9 month period, I can also think of a few people who will be commenting, "well we don't need to drink..." Yes, but you don't live in London, nor do you have the stress that we do and your not married to Tash*/Me* (*delete as appropriate).

6) Did I say that she has no energy anymore? - We keep forgetting things by the way, a symptom of having to deal with so much stuff I guess, the car key is the main offender, only have one key and officially it lives by my work bag. My key has been put down randomly on most flat surfaces in the flat in the last 3 weeks, only to be found several hours later after a frantic search.

7) Note to Self; it may seem a really good idea to clipper your wife's hair whilst you are both drunk, but it is not OK, it really isn't. You'll spend far too long and the batteries will die and she will have to sleep with half a haircut. You, on the other hand, will be happy to get any sleep at all because you are on the sofa. OK!

8) An apology; I am slowly managing to finish the 3 rules of Cancer Club, you'll see what I mean when it eventually appears, my thinking being that I have six months......

And finally for my CSFB work colleagues, a brief summary of the above;


Our goal at end of Cycle One was to establish a Issues Matrix that we could then apply to the rest of Project Chemo.
We have delivered on our first milestone, a release that we think sets the standard for all our other projected delivery cycles, though we intend them to be all sunny day releases we now understand that some of them may contain a level of uncertainty, so much so in fact that it is likely that we may include early gifts in each previous release to avoid the need for reactive patching or recursive back engineering as the project progresses. We feel that this will allow us to apply a laser like focus to the task in hand and present a golden oppertunity for Tash and Mark Corp. to expidiate a bigger leverage in the current cancer Blog market.

 

See you all on Tuesday Squirells

Tash keen to test out her new hair cut, pops down the shops.

All text and original images © 2005 www.taooftash.com