Wet or dry?

I talked to AM on Facebook last night.  She said

"I see a new blog from you and open it with a mixture of trepidation and anticipation and then alternately cry and laugh as I read them."

This one's for you, A, strictly for laughter only!

Having just had my bi-weekly shower and washed my thinning hair, I found myself using the shampoo for "Long Luscious Hair".  I then used the conditioner for the same.  My hair is neither long for luscious though, as per the photo, it looks quite good when blowdried upside down.  Should I be using this shampoo and conditioner?  Will they be upset when they are squeezed onto the thin, old lady hair, rather than the long luscious locks they are expecting?  Will they go on strike and NOT WORK under the Trades Descriptions Act or some such?  Am I wasting my time washing my hair with the WRONG shampoo? (Insert smilie face emoticon!)

The fact that I still have some hair worries me.  Does this mean the chemo is not working?  Over 3/4s of my hair has fallen out and will be attested to by the lovely Lynne.  Sometimes, she follows me round with the Dyson ON to catch the clumps that fall and has been known to attack my shoulders with the same, as I look like I have a rather mangy fur collar on!  But I still have a few bits hanging on.  Did they give me placebo chemo last week?  Is it just that the chemo is too busy elsewhere to attack my hair?  Will I ever need the false eyelashes I bought "just in case"?  

My second dilemma of the morning was how should I dry my hair?  On the one hand, water irritates me and an itchy neck is murderous.  But, if I blow dry it, will I blow out some of the few remaining strands that are hanging perilously in there?  Is wearing a towel round one's neck for the morning acceptable?  Should I pat it gently or rub vigorously with the towel?  How do you apply moisturising cream to the neck with water running down it?  Arghhh.

Decisions, decisions.....

In the pink

A comment from MF on my Facebook page after my last, slightly brutal blog, raises a question:

"It's a far cry from the pink ribbon image isn't it?"

Apparently, Breast Cancer is not viewed as a "serious" cancer.  All the pink ribbons and midnight walks have turned it from being a life threatening disease with a quarter of patients dying within 10 years to some fluffy bunny "beatable" disease that is not as serious as some other cancers.  Really?

It is something we face in the eating disorder world too.  Anorexia Nervosa is viewed as the No 1 serious eating disorder.  Bulimia and BED are viewed as not so serious.  This is all wrong.  All eating disorders are lethal and none is more "serious" than others.  I think that AN is viewed as the most serious because it is very visible and it is not so "messy" as BN or BED.  The general public view AN as "not eating"(showing supreme self control - let's all clap!!!) whilst BN is viewed as "throwing up" and BED (if anyone has ever heard of it!) is viewed as "greed" (showing supreme lack of self control).  They all still kill and maim and ruin lives, in terrifying numbers.

G's godmother, C, came round to drop off a birthday card on Friday and said she was finding my blogs about cancer treatment really helpful because "one doesn't like to ask too much".  I have been pondering whether this is because we are English - stiff upper lips and all that - or because the clinicians don't want to "frighten the horses" in case we bolt (which would really skew the "survivor" numbers).

However, I don't think the sugar coating is a purely English thing.  I suspect it is more a reflection of our society.  I suspect  the mystery surrounding the reality of cancer treatment and all it entails, is a symptom of our "reality", our Disney Princess Happy Ever After fairytale, that we are fed from an early age.

MF commented further that maybe we are more "comfortable" with the "plucky survivor" thing.  I disagree.  Whilst hope is important, it is easily dashed when comparing yourself and your discomfort with those shining beacons, who have beaten all the odds and are now running marathons or countries, sky diving from outer space or sailing single handed to Mars.

The reality is we are herded like cattle to the slaughterhouse, through a succession of corridors and machines and tests, having our hands held by kind but detached staff, swallowing pills and holding up our arms for needles without a murmur.   We are told there is always hope and that medical advances are being made every day.  We are somehow made to feel that it is up to us and our duty to get better that we, too, should find it in ourselves to be a plucky survivor.

No pressure then?

Fortitude

I have had a lot of feedback on my blogs on cancer treatment.  As usual, I have made light of much of the horror.  However, my dear friend, LC, put some things in perspective for me.

"In my view, in the last 18 months the doctors have poisoned me, cut me and burnt me repeatedly to rid my body of cancer. My job was to be passive and patient."

This is a pretty accurate description of cancer treatment as it stands.  The doctors and nurses are lovely people, kind, sympathetic and gentle.  The treatment is not.  

The operations are brutal - removing lymph nodes is real cut and paste surgery.  There is an urgency to move you on as fast as possible to the next phase of treatment.  Most breast cancer patients are chopped about in the armpit as well as the breast.  It precludes hugging, opening tins and stroking the dogs for a long time.  Wearing a bra (recommended) is difficult.  Post op bras tend to be as exciting as maternity bras - just the thing you need, when your femininity has been stripped bare by a surgeon's knife.  (For the record, Spanx bras have no seams and you step in to them - I highly recommend them).

Chemotherapy (as discussed earlier) is poisoning in strictly medicated doses, that keep you alive but destroy your immune system, mess with your platelets, give you nausea, anaemia, an ulcerated mouth, bruising and rashes.  The fatigue is indescribable.  The hair loss is immaterial in the grand scheme of things, but the humiliation is psychologically hard to bear on top of all the other stuff.  More side effects can be found here.

Radiotherapy is deep tissue burning, cunningly disguised for the first few sessions, as the burn is so deep under the surface, the effect is not visible for  a few days.  The fatigue comes out of nowhere and hits you like a sledgehammer.  You are not allowed to wash with anything other than baby soap and no deodorant for the whole of your treatment.  Dehumanising?  I think so.  There is nothing like being laid out topless on a slab of stainless steel, alone, in a cold room, whilst some James Bond type machine whirrs and hums over you.

It is, effectively, torture.

I read a heartbreaking article by Lord Saatchi the other day.  I agree with him.

Passive and patient may be the prescribed reaction.  Violated, burnt and mentally scarred is probably closer to the truth.  Not just for the patients but also for those who support and love them.

Keeping my lid on...

Thursdays are good days.  I spent a wonderful, happy day yesterday with G, buying a prom dress and then going into Cambridge to have lunch with E, followed by stocking up on essentials (8 Hour cream) and buying myself a pair of Vans - quite the most comfortable shoes ever.

Fridays are my mouldiest day.  The high of Wednesday's massive steroid injection has completely worn off and the chemo is going full tilt as it crunches through the cancer. 

The hives are back - hence the 8 Hour cream - so I am on anti histamines and am up to 7 litres of water a day, to keep them at bay.  The weather is less humid, so I am more comfortable than a couple of days ago and I am so covered in moisturiser (Dr Organic Aloe Vera - thanks Mel - and 8 Hour cream) that it was quite difficult to get my knickers to stay up this morning!  

Sadly, the return of the hives means that my tolerance to water, carefully built up in 30 second weekly increments over the past 18 months, has disappeared.  I am no longer able to enjoy a nice warm shower.  I had even built myself up to having a 5 minute warm bath, which was heaven after 18 months of not being able to, but that too is now impossible.  Back to strip washing at the sink, just like I did at boarding school and smothering myself in deodorant.

The pain is back on Fridays.  It is a good pain, which is a weird thing to say.  I like to think of it as the pain brought about as the chemo fights the cancer and is winning.  At times, it feels like the hundred years war or melting a iceberg with a match.  It grinds and creaks with the occasional debilitating, head ringing sharpness that takes the breath away, when I move in a unaccustomed way.  As I have been pretty crippled by a "bad shoulder" for six months now, there are a lot of "unaccustomed ways" - like reaching out for a glass of water in the middle of the night - so the reminder that I have cancer is there, even when half asleep.

Friday is a day that depression tends to come in waves.  There is much to do, but my energy is low and my sensitivity button is on Defcon 5.  That means that the family creep around, as the residual aggression from the steroids still lingers, without the corresponding energy and enthusiasm.

Fridays are the days when I am best left to fester, spreading my greenish powder over the strawberry jam of life.

Impressions of the chemo outpatient ward

It was busy yesterday.  I didn't get to sit next to M, the lovely lady in her 80's who has blood transfusions every Wednesday.  She is tiny, white haired, bird like, exquisitely polite, charming and a favourite with all the nurses.  She gets brought in by her lovely, round, jolly husband every week and dropped off.  Her treatment takes about 6 hours and I tend to jump up and down getting her a drink (she likes orange squash) and showing her funny pictures in the paper - we particularly like the one of Boris on a horse last week.  She likes to sit by the window and watch the comings and goings from the Rainbow Ward (the children's ward) which is next door to us (a particularly strange piece of planning?).

In the end I sat next door to the very beautiful J.  J has taken the step of shaving off all her hair and her huge blue eyes are magnified a thousand times.  She looks like Erin O Connor.

J is 29.  Her Mum sits with her all morning and her dad drives 5 hours from Blackpool to be with her on chemo day for the afternoon and evening.  She is facing a long road - her reconstructive surgery won't be until this time next year.  In the meantime, she is facing life as a single (her boyfriend dumped her after the first bout of chemo - bastard.  Making voodoo dolls!), lopsided, scarred, young woman who has had a really shitty diagnosis and an even shittier treatment regime.

I looked at her parents (as I nagged her to eat!  Old habits die hard) and saw two loving parents, united in grief and fortitude.  For the most part, they just sat there, uncertain of what to say or do, except take huge interest in her treatment regime and tell her she was beautiful.  My heart broke for them.

I did my usual "entertaining the troops" bit.  We found common ground in the shortcomings of the Daily Fail.  The mum works with youth offenders locally and her dad is retired.  We talked a lot about dogs.  They have 5!  We generally shot the breeze and I banged on a lot about the importance of nutrition.  They had been to see one of those charlatan unregistered nutritionist.  I did have to laugh about the "method" of diagnosis.  Apparently, vials were placed in the tummy button and then the right arm was raised.  If there was no resistance, it apparently meant the patient was "allergic" to whatever was in the vial - tuna, oranges, dairy - yeah right!  My blood turned cold but luckily, they had seen through this particular piece of "money for old rope" and took no notice.

I did 'fess up to my particular interest in nutrition and did point out that J might need to "grow" her behind over the next year for the reconstruction.  She wailed at me "Great.  Bald.  Single.  AND Fat.  Anything else?"  I wanted to cry.

So what's it like having cancer

One piece of advice I was given at the beginning of this all was from M and the Fairy Blogmother:

Don't Google it, they said.

I haven't

Therefore, I think it is emotionally worse for those closest than it is for me.  I am caught up in the whole treatment timetable, the chemo every Wednesday, knowing the nurses and calling my oncologist by her first name.  I have all the pills and the potions and the right to stay in bed, watching the iPlayer every morning if I want.  I do wake up at 3 am and think that this is not fair and why me.  Instead of becoming wrapped up in all the emotional wreckage, I turn on Radio 4 and listen to the World Service for the rest of the night.  (I am sure all my psych friends would have something to say about this but I really don't want to know!)

It is worse for HWISO.  Much worse.  He has Googled it.  He wants to fix it and fix it now.  Sadly, he is not qualified and, whilst I get his frustration, I don't have his energy.  I do understand his intolerance that I am not the most important person in the MacMillan Day Unit, or the most critical on the oncologist's list and I understand his frustration that no one understands how important I am to him and that he cannot bear the idea of life without me.  I know he is prepared to sell everything he owns, if he can just get me fixed.

And I love him for it.

It is tough for my girls.  Really tough.  And it is NOT FAIR.  It really isn't.  Being a teenager is tough enough, without me being ill and weak.  They are being so loving and supportive that it breaks my heart but I know that they just break down from time to time.  It is almost too much for them to bear.  I wish I could take it away from them.  So does HWISO.  

Physically, it is hard.  It is hard to know there is something alien in your body.  It is hard to have the pain of an operation.  It is hard to have pain. It is hard to have to be so careful about going out and coming into contact with people who might be infectious.  It is hard to have to pay attention to every creek and groan.  It is very difficult, for me, to be a hypochondriac.  I find it hard to take drugs and have a fuzzy head.  I hate the attention.  I try and sleep through the afternoon when having chemo so no one asks me how I am.  (For the record: uncomfortable and cross!).  I hate getting weak and tired but I am scared of pushing myself too hard and collapsing again.  My body is not what it was and is fighting on two fronts: the cancer and the chemo.  It takes a lot out of you.

Honestly what's it like having cancer?  It sucks.   

However, I have discovered that life goes on, even if you do have cancer.  The family needs love and attention.  The dogs need love and attention.  The kitchen floor needs attention.  The bills still arrive and need paying.  The farm needs discussion and planning.  The emails and letters need answering.  The washing still needs sorting.  The shopping needs doing.  Life needs living.

I have changed though.  I have stopped stressing the small stuff and started delegating the big stuff.  I received a particularly spiteful letter in the post this morning.  In the old days, I would have got upset and thrown a hissy fit and got overly stressed and emotional.  Today, I called my great friend who is a solicitor and talked it over with her.  She made a plan.  I like plans.  I don't have the energy for making plans just now.

I'm too busy fighting cancer.

So what does chemo feel like?

Another narcissistic post....

After a lot of interest and people obviously wanting to know, but too scared to asked, what does chemo feel like?

Well, scary to begin with.  I mean, who, voluntarily, sits there and lets other people, however nice and cheery they are and whatever uniform they are wearing and however long their title is on their NHS identity card, inject poison into them?  

The chemo process takes a long time (minimum an hour).  It is not a "James Bond" syringe in the buttocks type experience.  You are hooked up to a machine that drip feeds poison into your system via a needle and tube that you have let someone put in you without extreme resistance.  You know it's poison, partly due to the fact it says so on the bag and partly due to the fact that the staff never come near you without protective clothing. 

This is no "umbrella in the bus stop".  

I am not a drug taking person.  Pre-cancer, I had to be seriously debilitated to take a paracetamol (although I do confess to eating those orange flavoured "children's aspirins" when young).  Now I take a pill when I am in pain.  So far, in this experience of cancer, at the worst post op, drain infection, serious pain days, I have taken Ibruprofen and Paracetamol every 2-4 hours, highest dose allowed.  I have been on Tramadol (which gave me a sort of St Vitus dance, so had to stop that), Co-Codamol which made me  very ill, morphine, which helped the pain but messed with my head big time and I DID NOT LIKE, prophylactic antibiotics, anti-nausea medicine (two types) and long term low dose steroids.

Oh yes, and the chemo every week

I am actually pleased to say that my liver (and no, I haven't touched alcohol since January - my mum's funeral) decided that enough was enough two weeks ago and my ATL (whatever that is) rocketed to 247 (which is bad, apparently?).  So I came off everything, including the chemo, for a week.  Once I was under 100 (which took 7 days), I was back on the chemo and anti nausea (and all those injections before chemo) and have taken a paracetamol for a particularly bad hay fever headache a couple of nights.

I also suffer badly from dehydration and have learnt that *I* need to drink between 5 and 7 litres of fluid (tea and water in my case) a day to keep serious hives at bay.  I have had two small outbreaks (hands and feet) and have to remember that sweating is seriously detrimental to me, so have been wafting around in loose fitting clothes trying to emulate that 70's Cadburys' Flake advert.

My friend, Tiffany, told me to visualise the chemo as a kind of huge digger crunching up the cancer cells and my friend, Cathy, told me that this is what is actually happening and why my hair is falling out.  Both incredibly helpful visualisations - thank you.

My friend, Christine, appears every Tuesdays with pies (she is dead good at pastry) and cakes which she has made herself so Wednesday evening supper and middle of the night steroid binge are sorted.  As I get better, the steroid binge gets earlier and I could be found at 3.45 am this morning, back in bed with my 3 thermoses of tea and Christine's Tiffin and Georgie's secret stash of Breakfast Biscuits and Keeping Britain Alive on iPlayer.

Am I going to die?  Well, yes - everybody dies.  Am I going to die from cancer?  Statistically likely sometime.  Do I want to die?  There have been a couple of times when the pain has been 9-10 from the operation and I thought I would not be able to bear it and be better off dead.  HWISO talked me out of that particular scenario and the doctor gave me morphine, so, just now, No.  Also, as I have sorted out my life, done my will, my letter of wishes, written my letters to the children and HWISO, done the farm Year End, found someone to take over the paperwork for the VAT and the wages until I am better, tidied the house, organised a twice weekly grocery home delivery, booked Emily's driving test, got a gardener in once a month, got into a major routine with the lovely Lynne who comes three times a week to sort out the house and recorded all the Grand Designs I want to watch, the likelihood of me popping my clogs anytime in the near future is pretty remote.

Does it make it any easier to watch the drip drip drip every week?  Probably not but, at the moment, I am feeling really rather well.  The hole is shrinking rapidly, the weekly routine is now established and the sun is out.  Mustn't complain.

So what does chemo feel like?  Counterintuitive.  Weird.  Disempowering.  Scary.

The upside?  Kindness from too many people to mention: the parcels, the food, the cushions, the throws, the wash bags, the mad postcards (Colleen!), the cards, the emails, the Skype calls, the phone calls, the bath and skin stuff and the love from so many.

I only wish I could set up the same system for my many many friends who are going through the hell of helping their children overcome an eating disorder.  

Maybe next year?