Happy New You!

Happy New Year good readers! Let's hope 2011 sees the realisation of your dreams in every way and it's the start of a great year for you.

Now, see those lovely hands and feet on the right. Not mine. Not even close to being mine. I'm not going to post a pic of mine, put you off your dinner and there's no need. Suffice to say, I've had a bit of 'hand and foot syndrome'. Golly I wish I'd read that link before I got it. It's the tip of the iceberg. I didn't just get the redness and peeling. I got large blisters and couldn't walk or pick anything up. Seriously. The Absent Bloke had to carry me up and down stairs as I couldn't stand on my feet due to the pain of the huge blisters. I couldn't unwrap my Christmas pressies (hey, I got loads I'm not complaining, just would've been nice to unwrap them me little self) so had help from my niece and sister-in-law.

Writing Christmas cards was completely out. As was doing anything with my hands. Putting underwear on was like dangling from the ceiling holding onto cheese-wire. Painful.

Tomorrow I'm back at the clinic whilst they work out what dose of chemo to put me on; hopefully sufficient to kill the bastard cells but not enough to cause all the side effects. After a mere 9 week break in over a year of chemotherapy, I'd really like a break from side effects and to have a bit of quality time. Don't want much do I?

And now it's the wrapping up from Christmas time. You might already have put your tree and decorations away. Or like me, you're waiting for 12th night. Bit of a blubbery one this, but AB and I have been having deep and meaningful's today and it's hard not to wonder if when I put the decs away, will I be getting them out again in December. I'm certainly planning on it. I love Christmastime. Especially this year when I spent it with my entire family. It was perfect. So, to whoever's in charge; I don't mean to be greedy, but please can I have another one?

And a very merry Christmas to you too...

You may remember I finished my chemotherapy treatment at the beginning of August and was meant to be looking forward to a period of feeling better however short-lived. As it was it just didn't happen and what followed was weeks of misery frankly, interspersed with tolerable days, many of which were spent in France.

My first trip back to the Clinic after chemo had finished I waited to find out 'how I was doing'. This suggests that the medics know and I don't. That's why we go to the doctor's to see what's wrong. We know (very few of us are hypercondriacs, GP's the world over please note). We know something's wrong, we rarely have the language to express it; so if it doesn't 'present' itself physically, it can go unrecognised. I'll come back to this rant later.

I didn't feel as well as I'd hoped but the usual tests were taken and nothing much was said.

Three weeks later I returned for more tests and had a similar experience. I explained I didn't feel as well as I'd hoped. (Nine weeks have now passed since my last chemotherapy treatment).

I was told that they have to monitor me for a full nine weeks off chemo (i.e. 12 weeks since last treatment, sorry, complicated I know). I told them I didn't feel good. They told me they needed another three weeks before they would take any action. I told them if I didn't have cancer I would be camping out in A&E for an explanation. They told me they needed another three weeks before they would take any action.

I went away and experienced 21 days of abject misery and fear (pain, aches, weakness, hot and cold sweats, sleeping around 18 hours per day. But hey, it was only (another) 21 days.

On their 'Week 9' I was beside myself. I walked into the clinic and when asked how I was I couldn't be anything better than sarcastic to this team of people who try incredibly hard to keep me alive. I think my response was along the lines of 'I feel shit but you tell me, you're in charge' and cried a a lot.

They sent me for a CT scan, mammogram and ultrasound and promised to get back to me by the end of the week, acknowledging that waiting wasn't good for me (hellooooooooo?). In copies of correspondence flying between clinics, hospitals and surgery I noted the following:

"for much of this year Carolyn has seemed in fairly good spirits but it is clear that recent worrying developments have taken quite a substantial psychological toll..."

No shit Sherlock. It's not the recent sickness, it's the relaxed, let's wait nine weeks that took the psychological toll, ho hum.

My favourite question was 'Do you feel worse/weaker/in more pain than last time' like I have a riding scale; oh yes, I'm 2% worse - no I feel shit. Shit. There's no good to feeling shit, it's shit. (Sorry Mum & Dad, potty mouth daughter).

After that things happened quickly; crucially they discovered why I felt so lousy (although I could've told them in August things weren't cock-a-hoop) so in November they took me off superdrug Herceptin and acknowledged it wasn't working. This is a bummer as this is recognised as a drug that will significantly extend your life. It's OK though, whilst having the mammo and ultra-sound the radiographer Dr G who is fab, explained that lots of people live for years without Herceptin too. A comment to her, a massive shining beacon of hope for me.

Over the next couple of weeks three really important things were said to me and I list them here in no particular order as they are each crucial to me:

"The cancer's got out of control"

This from my Oncologist ringing with the test results. AB stood in front of me physically shaking - your blogger felt relief at a diagnosis, the fear and shock was to be experienced by everyone around me.

"The medical profession has failed you at this time"

This from one of my hospice nurses, who I'd been speaking to for the last few weeks. She was initially setting to discharge me from the hospice as the expectation was I'd be able to go away and live my life for a few months/years ho ho. In hindsight she apologised (and had no need to) for not intervening sooner.

"You know your body better than we do"

This from one of my oncology nurses. 'nuff said. I later asked her how to get 'attention' without loosing my dignity. She was surprised, she didn't feel I'd lost my dignity. I said I thought walking into someone else's place of work, crying and speaking fairly bluntly was undignified. Good Lord, how low is the standard of patient behaviour in private clinics these days ;-)

There's two things at play here; firstly, the power of suggestion. An oncology team won't tell you what to expect, or even acknowledge what you're experiencing until they have the facts; everything can be explained in another way. My constant hot flushes were explained as menopause, despite me having experienced menopause three years ago (brought on early by the first lot of chemo; there's a big upside apart from the obvious, no more PMT/PMS either!).

AB was given some valuable advice early on 'Be Assertive'. Thoughout my life I've struggled with the fine line that is assertion, I generally fly from passive to aggressive without stopping to consider feelings or consequences. This isn't helpful behaviour anywhere but is potentially dangerous in a medical situation. I kept saying I'd been through menopause, I kept being told I'm 45, of course it's menopause. I knew it wasn't (hot flushes are advanced cancer symptons).

The second thing, has gone. Chemo addles your brain and I can't remember the second point, I'll come back to it when I do...

So, I've started a new load of chemotherapy and a new life extending drug called Lapatinib. All are taken orally, rather than intravenously. As with everything, swings and roundabouts. I'm no longer married to three weekly hospital appoints (they're four weekly now as I have to have a monthly bone strengthening infusion). Rather than having a massive dose of chemo and then having three weeks to recover, I take around 30 individual tablets per day every day for 2 weeks then reduce them to about 12 a day for one week; this is called the 'rest period'. Rather than 'react' to my regime, I have to 'pro-act' which means remembering what to take when, when to eat, etc.

For the first time ever, I have been physically sick with the chemo. The joy of being sick is it (like cancer) respects no bounds. So what that you're out shopping in the middle of town, if you're well enough to shop, you're well enough to vomit. Happy days and thanks for ever to Emma in Marks & Spencers in Bath for getting me a chair, glass of water, sympathy and calm (I wrote a poem to the manager by way of thanks although I'm no poet...)

Five days into my new regime I experienced so many side effects it was agreed to take me off everything and let my body settle. I won't go into how hard it was to achieve this, the above tells you nothing's simple just now.

Two days after coming off everything I woke up with something I've not had for well over a year. Energy. And, I woke up, eyes open, wide awake. This happened for five consecutive days. Dear Reader, from 4 to 7 December 2010 I was a bit like you (without the hangover maybe ;)

The downside of the energy (for there has to be) was lack of sleep - I was absolutely hyper and couldn't read as I couldn't keep my brain calm enough. The answer was to hand-write, so I've filled up a journal with my nocturnal musings on everything from having cancer, having a diverse group of peeps in my life to having an overactive brain switched on for days on end.

My sleep patterns still screwed but am now back on the medication so fighting sleep in the day and writing lots at night again, ho hum.

Meanwhile, based on the above statement about the psychological toll this is taking, I'm seeing a Consultant Clinical Psychologist; he asked me my objective. I said, I just want to know in my own head if this whole thing was preventable; it sure as hell feels like it should have been. I want to know what happened, one day in another century when my internal power supply flickered.

Acute versus Chronic

Both are an improvement on 'terminal' which really should be reserved for transportation no?

Last night the clinic where I receive my treatment had a 'support evening', partly because October is Breast Cancer Awareness Month and partly because they have a load of woman in similar situations who, unlike NHS patients, never normally meet.

I entered the room late. Duur. Thought the start time was 7.30 and therefore, I was arriving early at 7.20pm. Ho hum. I got talking to my Breast Cancer Nurse who I have previously directed a lot of my rage at due to the inadequate support system in place for breast cancer patients. She was explaining the difference between acute and chronic illness. I'd previously tried to think of breast cancer as a chronic illness. We discussed the different terminology; acute, chronic, terminal, palliative (cheery huh?). I told her I felt acutely aware of my cancer. I'd love to put it back a stage and see it as just chronic. If anyone can suggest any coping strategies, they'd be gratefully received.

Meanwhile, as a group we were asked what we would like to get from the evening. We all agreed we needed more information on diet, excercise, constipation (yes, really), lingerie, libido, free prescriptions, employment law, parenting, stuff, stuff and more stuff. When we'd finished our list a lady in the middle put up her hand and said she started her treatment in the NHS and had received an information pack with a leaflet on every single thing we'd discussed. She was asked to bring this pack to her next treatment so the private health care peeps can offer similar support to the NHS. This is a step in the right direction.

There were between 30 and 40 of us. We seemed to be united by a need to help each other and other women (and men) coming through this devastating disease. We mostly had a sense of fun and equality in the group. I'd assumed I'd be the in the minority and one of the youngest; there were two 'elderly ladies' i.e. in their 70's. Then an even spread of ladies in their 50's and 60's. There were too many of us in our 40's. No. There were just too many of us.

Born to be Alive

Me: 'I just want to check that the way I feel is due to having secondary breast cancer and not because of any imminent, dramatic doom'

Nurse: 'You mean, you'd like to feel better if that was possible?'

Me: 'I would, yep'

Nurse: 'OK, we'll take your bloods.'

This conversation took place just under an hour ago. It was preceeded by this conversation:

Me: I had a mammogram and ultrasound last Tuesday. Dr G says everything's good, all's clear and she doesn't need to see me for another year.'

Oncologist: 'OK, I'll just check your glands... OK, I can't find anything'

He sits back down, checks his notes.

Oncologist: 'I'll just check your glands again... Hmmm, still can't feel anything'

So, up to this point, I was feeling pretty bloody good. OK, pretty crap in some ways but not bad for someone who's not particularly well, try and keep up eh? So now, I'm feeling pretty bad again. I have a constant cold and my immune system certainly doesn't dispose of teeny infections as efficiently as it once did, but surely that's no reason to be terrified?

Everyone keeps telling me to 'Keep Calm & Carry On', positive thinking is great - which is fab and therefore, baffling when you arrive in a positive state of mind and it's removed by the very clinician who keeps telling you to be positive.

So, the nurse has taken my blood (they only do this every second visit; what can possibly go wrong in the six weeks inbetween...) and wimp that I am, I've asked her to call AB with the results. Sorry AB. He's so much better than me at processing this kind of information.

Not figured out how to put the photo where I want to yet, but this is me with three of the lads from Bath Rugby Club who came to see us at Dot House the other week. Lovely lads who let us make all the old jokes about hookers and big thighs and seem up for another visit in the not too distant. Meanwhile, thanks to all for your fantastic sponsorship for the Midnight Walk; not got the final figure yet but we made at least £600, will let you know the final figure asap :0)

Scary or What?

Thought I'd give you an honest picture of your blogger. Good Lord in Heaven Above or a similar extreme thing to say. What on earth do I look like? Is this really me? Really, what DO I look like? It seems odd to worry about vanity when there's nurses running around trying to decide if I need a blood transfusion or something more serious and all I seem to care about is quite HOW middle aged and ordinary I look. A coping mechanism some would say or just plain old 'what was wrong with my old look'? I know, no-one else saw it as particularly fabulous, but I liked the way I used to look!

Anyway, come along and join the week with me. Monday lunchtime I had a French lesson (this happens almost weekly so I should be (ef)fluent by oh, Christmas 2018. Not my teacher's fault, she's fab, but I can barely speak English so how I think I'll ever be able to speak French is one of life's many mysteries.

Later that afternoon I had an echocardiogram. This requires a visit to our local hospital's heart unit, amusingly placed up a heart attack inducing climb to the third floor. All is good, it's 2% up on my last visit in June (2% of what I really can't remember, but up, I know, is good). I texted the Absent Bloke (Shanghai; he just gets more exotic with each trip) who brilliantly sent me a birthday card with the words 'You're Still Alive!' on the front last month.

Anyway, back to the text; "Am still alive. 2% up on last visit :) Dr E said "with God's blessing I'll see you in 3 months" which freaked me out mildly. Guess he's thinking the cancer'll get me before I have a heart attack." AB responded "He doesn't realise you'll probably have killed me before that happens". I'll leave you to work out how or why I might do that :) Then he asked how the dog was.

Have just been told my haemoglobin is 10.7 so no need for a blood transfusion, which frankly, is a bit disappointing. I was hoping for a 'shot in the arm' (or portocath) solution rather than a 'take it easy, you're doing too much' solution.

Over the weekend, 'bahtocancer' invited readers to write a guest blog. I accepted the invitation and bah accepted my blog. I was very proud to see li'l ole me published elsewhere on this vast network thingy. I feel very grown up (and had to be much more responsible in my spell/grammar checks!). Many thanks to 'bahtocancer' for including me. Hope you enjoy reading it! (you might have to scroll down a bit).

Today, as you may have gathered, I've spent the morning in the clinic and will be off home as soon as I've finished this blog and taking the nurse's advice and getting some rest in. 'Specially if I've got to walk 8 km on Saturday night/Sunday morning without the aid of anyone else's haemoglobins.

For those of you with compassion fatigue, look away now. Anyone with a spare couple of quid, Dorothy House would love it and I'll walk through the early hours of Sunday to earn it. My site's here. Ignore the target; like rules, it's made for breaking! Thanks all. G'night!

August

The dictionary definition of 'August' being the eighth month. Take away the capital 'a' and you have 'inspiring respect' which is something I'm quite conscious I did three years ago but haven't done this time around. I guess I've inspired quite a bit of fear :( I'm working on changing things around.

At the beginning of the month I had my sixth (or twelfth depending on what you're counting) chemotherapy. It's been one hell of a long nine months; my first chemo being two days before Christmas, my last being one day before my birthday - I sure know how to celebrate.

Now the treatment's over (I still have Herceptin and Zolydronic Acid every three weeks, taken intravenously so requiring a hospital visit) I can get on with the rest of my life. My blogs this year haven't been fun reading I know, that's going to change.

Meanwhile, I'll hand over to the (somewhat unlikely) pen of Agatha Christie:

"I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing."

Thanks Agatha, I couldn't have put it any better myself :)

* BREAKING NEWS * BREAKING NEWS *

When my beautiful Tara was first diagnosed with epilepsy, I had to make the (instant) decision of whether to medicate her, thereby reducing the risk of seizures killing her and putting her on medication for the rest of her life, thereby increasing her risk of liver/kidney failure. Not having children, this was the first time I had been faced with such a decision and, on top of all that, it was for an animal who would never be able to tell me how the medication made her feel and if I had made the right choice in her eyes.

Just over three years later, my other beautiful girl Tache, also starting having seizures and I was again faced with the same choice.

When an animal has a seizure it's terrifying - as when a human has one (I've only witnessed one human seizure and it was truly frightening). When that animal's yours and you know how you can help it becomes a no-brainer; you (well, certainly me) make the decision that allows you to spend the most time with your pet.

I arrived at the Clinic this morning, all cheerful with the mildest suntan I've ever had the good fortune to sport. Just enough time walking around French markets, covered in SPF 20 or in the shade has given me a healthy glow; inside and out so I was gutted to learn my neutrophils are so low (0.8) I couldn't have chemotherapy.

Occasionally someone will say 'how can you enjoy chemo' or 'do you really look forward to chemo' and the answer is 'Yes!' even though it makes my hair fall out and my fingernails drop off (I know, urgh!). I've got advanced cancer, so anything that stops it I'll enjoy, or look forward to. It's beyond tolerating, it's a positive 'get it into me' feeling so imagine how I felt today, when my oncologist, Dr G told me (with a smile) that at the end of this 'regime' of chemotherapy, I will just be on Herceptin and the bone strengthening infusion.

The Absent Bloke (still en france and therefore, still Absent) thinks this is good. The chemotherapy has done what it's meant to and now I can look forward to having Herceptin and Zolydronic aceeeeed - no side effects, just what is says on the packet (Herceptin stops the growth of cancer, Zolystuff strengthens my bones). I, on the other hand, feel like I'm about to be pushed off a cliff without a safety harness.

I spoke to the Oncology Sister about it and she explained that it can be a trade off. The risk of infection is high (I keep getting infections which is why my neutrophils are so low as what little immune system I have keeps fighting off colds and sore throats). When I'm no longer on chemotherapy, my immune system will return and I'll be able to fight minor infections. Like with Tache and Tara, it's about quality of life, not quantity.