Saturday, 11 December 2010

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.

Thursday, 21 October 2010

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.

Wednesday, 20 October 2010

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)

Wednesday, 8 September 2010

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!

Monday, 23 August 2010


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 :)

Wednesday, 7 July 2010


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.

Wednesday, 23 June 2010

The One You've Been Waiting For!

Apologies for the lack of photo but those of you on facebook will have seen this morning's pic of me awaiting my chemotherapy. I was waiting for the results of my blood tests and the news that I could go ahead and have my (almost) weekly infusion.

The reason for blogging at almost quarter past midnight is to share some good news with you (at last). When I was first re-diagnosed in October/November my 'cancer marker' was somewhere in the region of 260/270. This is more than eight times what it should be (I've not done the maths, I could be way out). Apparently a normal reading is around 30. That's what you (as in someone without a cancer diagnosis) would have in your system. Happily, this figure has been reducing and I have been doing my usual head in the sand ignoring the facts thing, until today.

Apparently, my cancer marker has dropped to 40!! That must explain why I'm feeling better, am more mobile and able to cope with more.

I'm sorry this blog has been so utterly miserable for the last few months. I hope this news has cheered you up! It's certainly done that for me. I've yet to speak to Dr R my oncologist about this and get his take, but in layman's terms that looks pretty good to me!

Monday, 24 May 2010

Race for Life 2010

This Race for Life malarky whizzes around doesn't it? This time we're doing it on Sunday 6 June at 11am at the University of Bath.

Absolutely not a chance of me running as I can't run any longer, don't ask me why not as I can't explain. I can walk and almost (almost) dance but somehow, running's out. The fields up at the uni aren't very even, so I may have to take my stick, I hope not.

If you've any spare cash (£2 minimum donation) please feel free to sponsor me! If I make it to £500 this year, between us we'll have donated over £2000 to Cancer Research UK which makes a huge difference, so thank you :-)

If you're also doing the 11am race on 6 June please let me know and we can at least start off together - even if I do finish a good hour or two later than you!

Living with Cancer

Hmmm, in the absence of the Absent Bloke (he's only down the road, not like he's left the postcode even, but still) just asked my nurse if this chemo will send me into remission and apparently it won't.

The Oxford English Minidictionary explains remission as:
1 The cancellation of a debt or charge
2 The reduction of a prison sentence for good behaviour
3 A temporary period during which an illness becomes less severe

Somewhat disappointing that this period can't be reduced by good behaviour but on the upside, I can behave badly without it having an impact :-)

Last week saw Caromellymac galavanting around Longleat with a group of similarly afflicted souls and a greater number of nurses and volunteers. Around 25 of us took long walks, went on picnics, went swimming, relaxing and met some birds of prey up close and personal. Photos to follow... It was a wonderful week and again, a huge thank you to all at Dot House who made it happen.

Next chemo is this Wednesday which is followed by an echocardiogram. I get all the fun jobs!

Saturday, 15 May 2010

Remember Me?

It's been a long time between blogs. I'm not good at regular blogging and having just sat down to fill y'all in on the latest I looked at some other blogs and really, am wondering what I can say that's different/more enlightening/entertaining than anyone else.

You'll be pleased to know I'm not quite so dependant on steroids and so look much less like Alvin the Chipmunk than I did, but still not quite like Caromellymac either.

I'm now two sessions into a new regime of chemotherapy called Vinorelbine which is soooo much less toxic than my previous chemo which is great. It means I don't sleep all the time and I'm getting some exercise and beginning to live my life again, woo hoo. Having said that, compared to most people, I'm still very tired. My week still consists of counselling sessions (Tuesdays/emotional and Fridays/medical) chemo on Wednesdays and Dot House on Thursdays. Add to that that I sleep most of the weekend that only gives me Mondays to do stuff, which inevitably doesn't seem to happen as I'm asleep when I should be planning what I want to do...

Saturday, 3 April 2010

We've just been to a murder mystery party and the currently present Absent Bloke was the double-barrelled surnamed solicitor reading the will and I, as you might guess was the housekeeper/ cook/ not the murderer. I've always wanted to do a murder mystery and tonight was especially sweet as, by pure fluke, I guessed 'whodunnit'! Dunno how, just a feeling as much as anything - but very happy to win a bottle of vino which I'll save for when I can drink again, yay!

Meanwhile, last Wednesday saw my appointment with the good doctor, Dr G my oncologist. There's great news here - he's putting me back on chemotherapy! Yay! I'll be on a regime called Vinorelbine which sounds like a kind of wine to me (say it out loud). I start next Wednesday, have two weeks of treatments and then a week off. In this time I'll also have the Herceptin and bone strengthening infusion. Assuming I respond well (yes, let's!) I'll be available for lunch/coffee that third Wednesday, fab!

Meanwhile, in case you're wondering if I keep a maid's outfit in my 'dressing up box' let me put your mind at rest. I was at Dotty House a couple of weeks ago and the conversation went from Scrabble to Cluedo (everyone's favourite). I mentioned the murder/mystery party and from nowhere, this outfit appeared, so not only did I get to borrow the perfect costume, I got it for free. Love a bargain.

Dotty House doesn't have invisible strings and whilst I enjoy their services be it the nurses, physios, doctors, costume hire or craft things, someone has to pay. I'm incredibly lucky to have friends who do things to support Dorothy House and last weekend a friend ran three marathons. Let me write that again. He ran 3 marathons in 3 days. A marathon is 26 miles. Only the one he ran on the Saturday was 28 miles. In other words, over 3 days he ran at least 80 miles. All the sponsorship he gets he will donate to Dorothy House so that people like me get to enjoy/seek refuge in the services that Dotty House provides. I know we all suffer from compassion fatigue, but if you've got a spare couple of quid, please donate it to Sim - I can't imagine running a mile, let alone 80 of them and thank him from the bottom of my heart. Here's a link to his blog which tells his story. If nothing else, he's a blokey bloke and he wore a pink tee shirt at the finish line. That's worth £2 of anybody's isn't it?

Later this year the Rondo Theatre Company (RTC) who I'm involved with will be producing 'The Merry Wives of Windsor' at the Botanical Gardens in Bath and again, profit will be donated to Dotty House.

As I write this, I realise that I need to sort through some of my old clothes. I'll donate them to one of Dot's charity shops in Bath so if you fancy something in the style of Karen Millen/ Joseph/ Whistles from the last 3 years in a size 12 head to one of Dots shops soon!

Friday, 26 March 2010

This is me at the beginning of Wednesday. The cytotoxic box is covering my stomach. I'm not sure why else I'm holding it. I don't normally.

A couple of hours later I was spark out asleep on the bed whilst the Herceptin and Zoledronic Acid (bone strengthener) were being pumped into me.

Do you like my chipmunk features? The steroids do that, I'm coming off them next week so that'll be nice for the good people of Bath. I think I look a bit scary.

To recap on the treatment side of things 'cos I've been a bit remiss on that score - after starting the chemo in weekly bite size chunks before Christmas, by February the good doctor decided to give me normal size, three weekly chemos and then discovered I'd developed a very rare, allergic reaction to the chemo. This effectively meant I was being deliberately poisoned (chemotherapy) and accidentally poisoned (allergic reaction). Once again, nobody's fault, this isn't an exact science but bloodyhell I felt like shit. I kept saying 'This is so much worse than previously' and various people rationalised it for me; 'You've forgotten how bad it was.' No I haven't! I was functioning previously, now I'm asleep, housebound (I know, I'm not meant to use that word), useless (and incidentally, really pissed off most of the time).

I've not had any chemo for around five weeks which on the one hand is a bit scary but it's giving my body the chance to recover, for which I am truly grateful as being constantly poisoned is such a drag.

Next Wednesday we meet up with my Oncologist again and he will suggest a new treatment regime, which of course we hope will include chemotherapy. He's looking at less 'toxic' forms of chemo for me. I suspect 'less toxic' must in some way mean 'less effective'. I could be wrong but that would seem logical to me.

When I had my first diagnosis the treatment regime was pretty straight forward and as you know, I responded well to it. This is all a bit different but thanks for sitting it out with me. Knowing you're at my side willing me through makes a huge difference. I just wish I could put a post up saying 'Panic over, normal service resumed' but I'm not there. When I am, I will I promise.

Meanwhile, have lovely weekends. Those of you in Bath, beware aging, raging cyclists and balding chipmunks and everybody be safe and happy :-)

Wednesday, 24 March 2010

(Don't) Look Back In Anger

Cast your mind back to January when this was the outlook from my kitchen window. I was only a few weeks into being what I'm currently calling 'housebound' but I'm hoping to either remove the word from my vocabulary or find something infinitely better. The very effort of coming downstairs to watch TV and certainly, the extra three steps into the kitchen was often too much for me. The currently present Absent Bloke took this photo of our back garden and our fabulous view of St Saviours Church in Larkhall.

Now, there's only so much TV a girl can watch (believe me, I've peaked) so one January Saturday, I asked AB if we could go to our local DIY store to buy a bird feeder and some bird food so at least I could sit on my sofa and watch the birdies. I can be such an Edwardian lady at times :-)

I got wrapped up and then dressed up. That was my coping mechanism. Get myself warm (with no immune system getting 'a chill' isn't an option). I then poured on the make-up and with a warm woolley hat on added a decorative scarf on top, for the sake of appearances and off we went.

Parked up at a set of traffic lights there was a lycra-clad cyclist, I imagine by his absolute white pointed goatee, he was in his late '60's/early 70's. Well bloody good on him I thought. I certainly won't be cycling around Bath in my 70's, so kudos to him. As I looked at him he motioned towards my window (remember I'm a passenger in this car). I opened the window and stuck my head out into the cold. He pointed out that the car was over the line for the traffic lights. I apologised, said to AB 'you're over the line' and turned back to acknowledge the cyclist who called me a 'sarcastic bitch'. Well, I dunno about you, but that wasn't quite the exchange I'd been expecting. I calmly asked him not to speak to me like that, to which he came back with something equally unpleasant. By now I should have realised that what he wanted was a bit of road rage, he didn't give a rats how we were parked, the problem was that firstly we were in a car and (I'm guessing, this is becoming a bit of a recurring theme) but a very nice car. Sorry for making an effort an' all that. What a prize prick. Anyway, this 'exchange' continued the length of road we were both on, with AB getting involved too.

I'm shaking just typing this now - I can't express how upsetting I found it. Anyway, we got to Homebase where I just pulled my scarf and hat off (and it was freaking cold) and walked through the store on that busy Saturday afternoon totally bald (not in the style of any of these Hollywood actresses going through 'breast cancer' who have perfect eye-lashes, eye-brows and make up but in the style of someone fairly sick with sores on their mouth and nose and the make up looking like a child who's played in her mother's make-up bag. I saw someone I knew from the theatre and didn't want to embarrass him by saying hello. I think I do the angry/empathy thing quite well no?

So this blog is really to explain where this 'anger' I have comes from. It didn't start with the diagnosis, 'why me?'. I hope I'm really not that selfish. It started with the actions of one man with an ego problem who went to war with a woman he saw in a car and that woman was too distressed with everything else in her life to cope with an exchange that took probably less than a minute, one Saturday afternoon in January 2010.

'Be kind, for everyone you meet is fighting a battle' Plato

Tuesday, 23 March 2010

Decolletage? I meant chest. I could blame chemo, allergies, anything or just disappearing up my own arse but what I meant to say was look at that plaster on my chest, that's where the portacath is inserted.

It was inserted by a surgeon under general aneasthetic when I was admitted to the clinic as a day patient back in January. Before I go for my chemo/Herceptin/bone strengthening treatment I put on a tiny tube of aneasthetic so that when the nurses attach the needle I don't feel a thing. No trauma, they just pop the bugger in and away we go, whoosh - chemicals in, blood out (tick as required). Easy peasy portacath squeezy. Every chest should have one. Well maybe not but I do want you to know how much easier it makes my life. It's just like a mini-plug socket in that the needle just pops into it - it's not visible (no point posting a photo) but you can you feel it if I like you enough to let you :) There's a tiny scar, but I'm collecting chest scars - just hoping to find the right style neckline to show them off at some point.

Sunday, 21 March 2010

Making Mountains Out of Molehills (or The Bitch Inside)

The longer in between blogging, the whiter, brighter, shinier the blank screen becomes, which is silly really, because there's a contrast button and let's face it, the page is always blank otherwise there'd be nowhere to type stuff.

I really want to use this blog to let you know how I've been feeling since my diagnosis in October and my treatment started properly in December and I don't want it to make for comfortable reading because it really hasn't been comfortable living (or longing or loving or whatever the name of this blog is).

I want you to know just how frightening life has become, how isolated I can and do feel and a whole other list of adjectives like angry, alone, terrified, scared, shocked, isolated (I've said that twice, but that's the most descriptive one, isolated, there you go, I've said it again). I know there's other people in similar situations, but this is mine, no one to really share it with. This is my shit alone.

I've also had a few messages along the lines of 'it happens to the nicest people' well hold fire whilst I stop my sides from splitting. If there's something I've been good at over the years it's hiding the fact that beneath the smiley, friendly veneer can lurk a resentful, somewhat angry bitch. More and more of you are meeting this woman. The Absent Bloke is trying to rein me in and give me excuses but I keep having a dig here and a dig there when I think/don't care if I can get away with it and not just with AB and family but with friends too. I'm pushing boundaries and I'm not sure why. Each time I do it I try and apologise quickly with grace and sincerity but what would be good was if I just kept my fat mouth shut in the first place. I know a number of you will say I'm entitled to be angry and you're damn right I am, but that's not your fault. On the other side, any energy is good, whether it's positive or negative so for that, I don't apologise. Having energy is a life-saver.

Some of you may have gathered that I'm physically not the woman I was. Not just as in bald as a coot but I now walk with a stick and am constantly breathless. This means talking on the telephone is out. If you're low on breath are you really going to sit chatting on the phone? Sorry - it's a real chore - I only speak to the doctors and nurses on the phone (and for no more than a few short minutes). I'm very grateful to have this technological age where communication is so easy by text, email and facebook. My world would be silent without them, as it is, I can get by easily by checking my phone.

And there's the other thing. Where would I have been without my phone since December? 100% radio silence. I have been unable to sit at my computer, where I am sitting this morning. Just the very act of sitting here has been too hard. I don't have a laptop so can't sit in bed 'on my lappie' and probably wouldn't have been up to it had I had one, so I have been communicating by the tiny keyboard on my phone since December (woe is me, I know).

After my diagnosis in October and the appalling way it was handled (nobody's fault, just the system) there was absolutely no support for me and (forgive me) my immediately family were in the same vacuum as me so were unable to help and support me. I was as I think I may have mentioned, isolated and terrified.

I called my Breast Cancer Nurse (BCN). She told me to ring the Breast Cancer Care forum. That's kind of a nice idea but what I needed was a living, breathing person locally to offer support. In the absence of such a person, I rang the 0808 800 6000 number and by some miracle, the lady that answered had knowledge of Bath and was able to give me some good local advice. Totally random but incredible lucky for me. She was appalled my BCN had been so 'hands off'.

She suggested I call my GP and the local NHS hospital to get the ball rolling. A lot of you will be reading this and thinking 'obviously'. I've never had a relationship with any other GP than the one I had as a child and when I was diagnosed back in February 2007, there seemed no reason to build a relationship with my GP as the connection I had with my Oncologist was so solid.

Fortunately, the ball started to roll, very slowly and it was a juddery start. An NHS BCN called me and explained why I was in so much pain. She also explained how that pain might be alleviated. Would have been good if my own BCN had bothered to do that but frankly, she's too busy fannying about the private hospital to think about the well being of a frightened patient. (Told you about the bitch inside didn't I?).

The conversation with the NHS BCN led to an introduction to a local hospice called Dorothy House and a stream of professional nurses and carers and finally, some support and relief. These things take time but the professionalism, care and dedication of these people has enabled me to look to the future and begin to enjoy some quality of life. I don't know how to paint the picture of me making that phone call - I can't begin to express how I felt at 44 years old ringing a hospice, not for my poor old parents (or even grandparents) but for me. For someone who had just graduated from university, for someone who was looking for a new start, a new career. For someone who's friends are having babies, starting new careers themselves, new relationships, buying new houses, we're the generation making a fresh start in our 40's and being ironic about the 1980's. I had seen myself up until now as on the edge of a new adventure; I'd graduated, I was looking for a job and now?

My introduction to Dorothy (Dot) House started with visits from nurses, day patient staff, physiotherapists, counsellors, therapists and even a chaplain (I'm in the 'border country' apparently, between life and death; I suggested I was closer to life and he agreed, sort of. It's important to pick and choose who can actually help in these cases.)

I was offered a place at the Day Patient Unit on a Thursday. This involves being collected at 10am and driven to the hospice, spending the day there chatting, doing crafty things (mosaics, painting plant pots), eating, having therapies, sleeping, whatever floats your boat and being brought home mid-afternoon. I thought I'd probably do it once to be polite but that was a couple of months ago and although I'd often rather stick pins in my eyes, there's a good group of people, particularly nurses and volunteers and they've become part of the team that looks after me, notices the dips in my well being and points them out to the relevant healthcarers. The day exhausts me and I sleep for hours when I get home. It's also another outlet for my inner bitch as deafness is quite prevelant there and I seem able to get away with what I think are some quite witty asides between me and the nurses although I probably shouldn't say that.

As well as giving my week structure, Dot House has sorted out things like a living allowance, blue parking badge, walking stick and other more practical solutions. Things you probably see as 'disabilty' and that they're trying to get me to see as 'ability'. It's not where I want to be and I'm not sure if I'll always need them but anything that makes life easier has to be good and for that, I am grateful even if it's not apparent.

The photo at the top is a snapshot. That means it was taken one afternoon and it took a second to take. It's not representative of how I feel. To you I look happy and relatively carefree I imagine. I am now sitting at my computer with my pyjamas on, a beanie hat and a face like an overwrought chipmunk; it's puffed up and my mouth is tiny. I saw a friend in the week and the first thing she said was 'What's up with your face?'. It's a good question. I don't know if it's the steroids, the allergic reaction I've had to the chemo (will explain that another time) or just the sheer crappiness of life right now but I'm no looker that's for sure.

If you look at my decolletage in the picture you'll see what just looks like a plaster and then near my waist a line of some decription. This is in place of the catheter I normally have in my hand. This is the upside of private health care. If I was an NHS patient I'd probably have a Hickman Line sticking out of my chest quite visibly and unnattractive. As it is I have a portacath. It's basically a permanent plug socket for drugs and blood removal. It means that I can have my treatments without the trauma of medics trying to find non-existant veins in my hand/arm. It also means I can continue to function during treatments, I can go to the loo, eat, write, wash hands etc. I'm lucky to have it and it needs to be 'flushed through' every month for the rest of my life and I'm hoping that I'll be having Herceptin for the rest of my life, so job done. One less thing to worry about.

Wednesday, 20 January 2010


It has occured to me of late, that I've not really been keeping you up to date with my treatment which is really what the blog is meant to be about so I'll try and keep it short and upbeat, although it's not been a whole load of fun so don't know how I'll go on.

After being diagnosed with secondary breast cancer in October my oncologist took me off Tamoxifen and on to a hormonal drug called Femara (or Letrozole). I was on this drug (which the pharmacist had to order in especially) from the end of October until late December. During this time, although I had been experiencing lower back ache, this 'ache' became 'pain' and spread to my hips, ribs and shoulders although, not simultaneously. Every day I awoke with a new pain and was taking a mixture of co-codamol and ibuprofen to 'manage the pain'. Unfortunately, it wasn't being managed and the effect of being in pain on a daily basis was having a pretty bad effect on my mental well-being and stability. My oncologist wanted me to be on Femara for 6 to 8 weeks to see if it was working. I could see it wasn't. I also couldn't seem to tap into any form of support and by the middle of December I was absolutely distraught. I know that from facebook/myspace/twitter/emails and texts to friends this may not have been apparent. I'm learning to ask for help and say when things aren't good, but it doesn't come naturally. I'm always happy to complain about external problems but for some reason, like to keep things happy and upbeat when it comes to me. Happy and upbeat? What was in my head?

By the time the middle of December arrived and I had an MRI Scan and CT Scan I was in immense, regular pain, very poor humour and was easily breathless due to a combination of the cancer having spread to my lung lining, being anaemic and the unknown factor that my haemoglobin levels were plummeting. To use a well worn cliche, I was loosing the will to live. It was so painful I couldn't envisage any quality of life if it was to continue like this and there seemed to be no sense of urgency with any doctors. I could feel myself deteriorating on a daily basis.

With the results of the scans came the news that I was to have chemotherapy. I started a regime of chemo in March 2007 which ran over a 30 week period, 6 treatments of FEC and 4 of Docetaxel each taken every three weeks, followed by a total of 24 (I think) Herceptins.

I felt mixed at the prospect of more chemo. Delighted on the one hand as it had worked before and I was confident it would work again. Devastated on the other that I was back in chemo again and all that brings with it. I'd 'put a brave face on' last time, easy to do when you're told it's going to kill the cancer and send you back out into the world. Not so easy to do this time around. I'd already discussed the fact I may refuse chemo but, hey, realised on balance it wasn't a smart move and I should do as I'd done before and welcome the stuff into my system to hold the bastard cancer at bay whilst we wait for other drugs, treatments and methods to send it back into remission.

Chemotherapy started on Wednesday 23 December. Great timing. I was to have a smaller dose every week, rather than the full dose every three weeks. I knew this was going to be tough. Just not how tough.

The Absent Bloke and I drove up to London that evening, knowing if we didn't do it then, we may not make it. Upon reflection, we should have stayed in Bath. Loving hindsight.

Christmas lunch, normally my favourite meal of the year was left, almost untouched on the plate. Boxing Day I got up and decided I had to work through the pain, so went out for a walk with my Dad. We got about 20 houses away before I sat on the floor (in my favourite coat) and rang James to come and collect me. I was still in a lot of pain, having an almost constant nose bleed and my stomach (despite the lack of food) was distended and incredibly painful. I was on a cocktail of almost 30 tablets each day and felt incredibly rough. This was really not as easy as it had been back in 2007 (was it 'easy' then?).

The day after Boxing Day, having been in bed asleep for most of Christmas, I decided I had to get myself to Charing Cross Hospital. Unfortunately, this being the first non-bank holiday I was not alone in this thought. I queued with the elderly, infirm, worried mothers, homeless and saw the lady behind the desk visibly pick up when someone so clearly ill stood in front of her. She put me straight through the system, people stood to give me their seats and suddenly, I started to feel a little bit more safe in this very scary world of ours.

A day of observation in the hospital actually confirmed my blood platelets had slightly improved since my chemo the previous week, my haemoglobin continued to plummet but I was OK to leave after 7 hours or so.

The following day we returned to Bath and I immediately picked up and started to feel better and this is my pattern. Chemo on a Wednesday, exhausted/sleeping Thursday to Sunday, a little more human on Monday and by Tuesday, I feel 60% of what I think is normal. Then it's Wednesday again.

This tight regime, coupled with the snow and ice we've had, means that I haven't been out of the house, on my own, since well before Christmas (you may re-call my oncologist told me 'not to fall over, you don't want to break anything' when he first diagnosed me). I don't know how many of you have been 'housebound' for an extended length of time but it's not good for the soul, not for an independent, normally active, normally healthy 'young' 44 year old soul.

Today, when my oncologist visited me, he's happy that I've come on in such leaps and bounds (I told you the chemo would work) that in February he wants me to go back onto three weekly sessions. I can't begin to explain what good news this is. It means that I will be able to re-build my strength in between treatments. I'll be able to take myself into town to meet friends for a cuppa or even lunch, to pick up some groceries, to browse the shops at a quiet time. In short, I'll be able to rejoin my life. I just hope it's been having fun whilst I've been laying so very very low.

Wednesday, 13 January 2010

Welcome to Caromellymac's new site. Well, actually, old, unused site - but whatever, hopefully a more accessible, easier on the eye site!

I set this up last year as an alternative to my 'cancer blog' on myspace but as you see, never quite got 'round to writing anything, so let's hope this foray is more successful.

After quite a tough start to my new diagnosis, made all that little bit more difficult by the private health care system thinking the NHS was providing practical and emotional support and the NHS assuming the private health care system was, I finally got in touch with the local hospice, which sounds fairly dire but actually, they've been brilliant and have assured me that after my treatment for chemotherapy they will discharge me, with a month's notice! They have so far provided a counsellor (vital), a physio (reeeeally helpful), a chaplain (surprisingly helpful!), a day care supporter (just lovely) and crucially a 'care coordinator'. All of them very easy people to have around who, of course, are very understanding of my situation. Dorothy House rules OK!

In the absence of Dotty House as ever, my most amazing friends provided the practical, emotional and rock steady support. This came (and comes) in a variety of guises.

Top marks on every level go to my first and oldest God child, one Adam James Doggett (pictured with Tache). He's ten years of absolute love and beauty. He's also the only thing that has shaken me from sleep since the end of October and made me cry tears of pure joy.

He's a typical lad. Loves his mates, his computer games, his mum and I hazard a guess at his sister Ellie and he does his best at school. I have to 'fess up to the fact that I don't even know if he's ever discussed what he wants to do when he leaves school; they're not the kind of discussions we have on the all too rare occassions we see each other. He lives up in Lytham St Annes, around 220 miles away, so we text and we had a brilliant, too brief holiday together in London this summer.

At school a few weeks ago, they had a poetry competition. Adam's strength is maths, or so I thought. This is what he wrote:


Youth is strong
Youth is never wrong
Youth is funny
Youth is fit

Youth has the speed of a cheetah
Youth has the weight of a feather
Youth is as cheeky as a monkey
Youth can jump futher than a frog

Youth is always at the top of the list
Youth thinks before his actions
Youth is born to be best
Youth is never sad
Youth is young at heart.

Adam Doggett (10).

Needless to say, it's made it into a book called 'Poems from Lancashire' that will be published shortly and a copy will be held in the British Library.

A posting from facebook brought the next bout of love induced tears. Just a rant from a bloke (coincidentally, Adam's mum's fella Michael):

Just read your blog, Mrs and I've come the the conclusion that bones are crap. We would be better off without them. If we didn't have bones we'd be puddles of jelly and puddles of jelly can't fight each other. The worst a puddle of jelly could do to another puddle of jelly is flop on top of it (and that could be quite nice) and there probably wouldn't be religion because you can't crucify a puddle of jelly and make it a martyr. If we didn't have bones I wouldn't have broken the one in my leg when I was 14 and I wouldn't have screamed like the front row of a Boyzone concert in front of my mates and you wouldn't be so poorly. So, I'm voting bones out. End of rant ;-)

The final one (for today, keep 'em coming!) is an email I was awake to receive at 1.47am one fine December morning:

ts late, am in bed reading something I would love to be able to have written to you so am sending it to you anyway and hope it gives you strength. . See u monday fer a pint n a pie.!! xx
"Now the days stretch before you with the dryness and sameness of desert dunes. And in this season of grief we who love you have become invisible to you. Our words worry the empty air around you and you can sense no meaning in our speech.
Yet we are here. We are still here. Our hearts ache to support you.
We are always loving you.
You are not alone. "
Sent from my BlackBerry® wireless device

From Maya Angelou's book 'Letter to my Daughter'.

Friends are the family you choose and I have the best in the world!

Finally, friends Penny and Linda came over at the weekend to do the deed of head-shaving prior to the all important 2.5 weeks from first chemo treatment.

Three years ago, my oncologist Dr R told me my hair would fall out after 2.5 weeks of a pretty harsh chemo regime (not the one I'm now on) and he was exactly right, to the day and my gorgeous hairdresser Jo shaved my head for me that day. A couple of days later, I was completely and utterly bald as a coot, marvelling at the accuracy of such detail.

This year, Jo was working but kindly loaned me some clippers from the salon so we could do a No 1. Penny did the honours with hair cutting (and should she ever leave the corporate world, she knows her true vocation!) and Linda held my hand and between laughter and tears told me I looked fab at every stage of the cut. The Absent Bloke got the task of actually shaving my head. There's a thing he didn't think he'd be called upon to do on 12 April 1997 when we did the old 'in sickness and in health' stuff.

Four days later I've still got a George Michael style 6 o'clock shadow on my still not bald pate. Here's a site I probably should have checked before I took such drastic action and for those of you without the time to read it, I may experience hair loss or thinning. Then again I may not. Ooops :D