Wednesday, 30 March 2016

Altogether Now Say Goodbye to T!

What a ridiculously,  positively exciting day!
I had my last blood test for my last chemo and a surgical consult.
Tomorrow will be my last dose of chemo and straight after, the PICC line which took up residence in my arm three months ago will be removed.

This necessary, invading channel which stops just shy of my heart has had to be kept dry and free from inefection at all times- meaning a cling filmed arm extended out of the bath, learning to roll over in bed carefully and no rock climbing or going ape shit on the monkey bars. I joke, but it will be nice to get my arm back. 
On the surgery front, here's what I know:

My double mastectomy and reconstruction will take place in the one operation and I've been given three choices of reconstruction to mull over. I've also got a surgery date pencilled in and it's looking likely I may not need radiotherapy due to the fact my lymphs were normal-although this will be confirmed after the nearest lymph node is removed and biopsied.

So Spring is bringing new life. Even though i'm about to go into hibernation for the last time- how many times can I mention it's the last- I am so hopeful for the future and making plans.
Look out world,  i'm coming to get you soon enough.

Friday, 25 March 2016

How To Deal With The Hidden Costs of Cancer

I'm writing this while relaxing in the sun. It doesn't escape me at all that this week marks five months since I was diagnosed with Triple Negative Breast Cancer  and how dark those early days were.
 As a single mum to two children,  my thoughts rarely, if ever, turned to how I felt but instead focused on survival for them.  I had only just found a part-time job that offered the hours that suited our family of three when I found my lump,  and my diagnosis meant my employer replaced me because with treatment I wouldnt be able to carry out my job. Simply put, I got cancer and lost my job in the same week.
While trying to take on board how a gruelling treatment plan would impact on all our lives,  I also had to face up to being in financial crisis because I didn't have enough money coming in to cover day-to-day living,  let alone the extra costs that come with sickness. 
In those early days my emotions could range across the spectrum  of high spirits to deep lows within an afternoon and it was in a particularly low point I took to this blog and poured out my despair. I've always prided myself on being independent and never asking for help but that particular entry reads like the cries of a wounded animal. 
It's thanks to that blog entry I have learnt so much about the help that's out there for people like me and now I want to share it with you. I still remember not knowing where to begin to get help and how terrifying that felt. This isn't a definitive list of the only support available,  it's purely a list of the services I have found useful and I plan to add to it as time goes on. It might just offer someone else a good starting point should they find themselves in darker days.

Macmillan- A national charity which doesn't only provide nurses but a wealth of free booklets with topics ranging from how to cope with hair loss, chemotherapy,  information on different cancers and also a free cook book.  The helpline can also provide general advice on treatment and more in depth advice on financial issues, how to get help with utility costs and also about applied for a grant  to help with living costs. 

Employment and Support Allowance - Formerly referred to as Disability Benefit and available to those unabe to work due to a serious health condition. After three months, claimants can receive an enhanced payment if they meet certain criteria, such as going through chemo. More information available from Department of Work and Pensions. 

PIP Allowance- A benefit available for those whose illness /disability impacts on their daily lives to such an extent they require assistance, which  may mean from a carer or in terms of needing a blue badge.  You will need a health professional to fill in the paperwork with you. Further information available from Department of Work and Pensions. 

Willow- A national charity that provides special days out for people with serious health conditions. A healthcare professional will need to support your application and the charity is only able to offer a  number of days out per year.

Look Good, Feel Better- Helping teens and women with the physical effects of cancer, the beauty industry has come together to provide free workshops which show you how to combat chemo redness,  draw on realistic brows and disguise lost lashes.  Attendees also receive a makeup bag stocked with branded makeup matching their skin tone.  

For those local to Tunbridge Wells, The Pickering Cancer Drop-In Centre is an absolute must.  The centre provides a friendly ear, a support network, free complimentary therapies and counselling for cancer people and their families. 

If you are in debt and are going to struggle with making repayments while receiving treatment,  make your creditors aware of your diagnosis. The Money Advice Service can provide a wealth of information and Stepchange,  the national debt charity, can help you with budgeting, finding the best solution to help you getting out of debt and most importantly managing that solution for you without adding on fees like debt consolidation agencies.
I used West Kent Debt Advice, a charity local to me which was able to offer the same services as Step change but with the added benefit of offering face to face contact.

As I mentioned earlier,  I plan to add to this list as I go and apologies if I have left anyone off at the moment- it's nothing personal but cloudy chemo brain making me forgetful. 

Wednesday, 23 March 2016


If you read yesterday's post and thought I felt like this picture, you would be right:

And as I trudged into the hospital today, I felt every bit a husk. On top of that I felt fed up with myself, not just because i've reverted back to the sad beanie look and given up on any attempt to make myself look nice but also for letting the side down.  When I started this blog it was all upbeat and being positive to spite the cancer,  now I just moan. 
My favourite chemo nurse was waiting for me and it was him I first told I wasn't doing any more chemo.  "You have to finish it because if anything happens later on down the line and you didn't do it, who will you blame? Come to your last one and you will know you have fihushed it" he said. He had me on that one but as I then made my way along to see the oncologist,  the same thought was back. I cannot do any more.  Enough. 
It was a simple "How are you feeling?" that sparked a good old snot cry. 
I was straight in there with asking if I could sit out the final round.  It turns out there's a lot of science to back up why there are six rounds, so no passes. But the good news,  and at this stage it's enough to get me to go through with it,  is that having been on the highest dose of the hardest combo, the chemo has done it's job for the surgery. This last round will just be a mop up operation for any last rogues hanging about and because of that - they can half the dose.  So i'm summing up the last of my strength to get up off the floor and give it a knockdown punch. As well as feeling like one of the unfortunate souls from The Little Mermaid,  I guess I also feel a little like this today too:

Tuesday, 22 March 2016

Out for the count

The referee is counting, he's reaching high numbers and this time I'm down. I'm done.
I came through the first four rounds of chemo with only glancing blows and my spirit in tact. I was doing it, I still got to live a life largely uneffected by treatment nd in good weeks I was able to be mummy to my girls.
But this fifth round has got me battle weary and for the first time since being told it was cancer I feel very ill. The walk to my daughters school- less than five minutes on foot- physically hurt yesterday and once the girls are out the door in the morning, it's back to bed and to sleep for me until they are home.
I think what  helped get me through the previous rounds is a spell of time inbetween each where I've felt normal. This time though I've not been as lucky and as well as feeling rough I'm miserable and hiding from the world.
I can't hear 'you've only got one to go' or 'you must feel so relieved' or similar (phrases I admittedly would also say to someone else) because the positivity feels so abrasively at odds with how I am right now.
It's not you, it's me and I need to sit out in my quiet corner until I can do the world again.
I have an appointment with my Oncologist tomorrow and I'm hoping above all else I can persuade her to let me off the final round. I don't have another one in me. I'm out.

Saturday, 19 March 2016

I'm Dansking, who's asking?

I spent this morning in Copenhagen.

 It came about after I found a decent, free language app about a week ago and, inspired by my love of all things Scandinavian, I have been learning Danish everyday since. I'm a long way off fluency, the app itself tells me I am only 2% mastered but I've always found languages exciting and intriguing.
Foreign languages are more than just a code which needs deciphering, they offer a wealth of untapped potential. The otherworldly sounds, letters and punctuation entice the mind to think of all the places they are spoken, the sights and sounds of memories yet unlived, smells of cooking and sun dusty streets. Each new word a story.

While my middle school friends swooned over Take That (the first time round), I was captivated by Ace of Base. They came from somewhere so much more mysterious than the usual offerings on Top of The Pops and the only clues I had to go on in the age before the internet was a Collins Atlas to see where Scandinavia was and an Abba cassette tape my brother gave me when I told him about my newfound fascination.For hours, I would sit in the darkness of my parents dining room with either Ace of Base or Abba playing in my Walkman, imagining what it would be like when I went there as a proper grown up at 18. (I thought I would have my own house and car and probably be married by then because 18 was really old and sensible).

As the years went by, I kept a love for languages but my love of mischief won and I stopped doing anything at school. Like showing up. Somehow I managed to pass all my GCSEs without any revision or handing in any coursework. None at all. My lowest grade was a D in Drama which I secured by not turning up for one of the two exams. Despite my results, the Grammar School I went to seized its opportunity to cut loose and didn't allow me back for Sixth Form.  I had no idea what I was going to do but my parents were certain I wasn't going to sit around at home and insisted I went out to work.

So I became Dental Nurse and very soon realised I knew nothing about how the real world worked and that I hated people's mouths. Thankfully our town had two grammar schools girls could go to and so I mounted a letter and phone call campaign for a whole year until the other took me in to do A levels. It was there I once again became fascinated with language, reading and learning in general. It's thanks to that school I went abroad for the first time and saw the land of the Myths firsthand.

Anyway, I've digressed. Since my days of flipping through the Collins Atlas and imagining all the places I would see as a very grown up grown up with a proper grown up job and a house and a car, I've been fortunate enough to have travelled a little bit. But never longhaul and never to Scandinavia.

So this morning as I laid in bed feeling awful for yet another day with this silly chest infection, I took myself to Copenhagen, courtesy of the internet. I have been on virtual tours, watched sightseeing videos on YouTube, everything and anything I could to get my fix. Then this afternoon I explored one of my favourite pondering sites, BBCiWonder because nothing distracts my mind better than big ideas. I followed it up with a free online course in scriptwriting and I can tell you that despite feeling ill I feel really happy.

I've decided I'm going to travel anywhere in the world I want to while I'm resting up and who knows,  I might just make it there in real life one day, complete with dog-eared phrase book in hand.

Wednesday, 16 March 2016

You Had One Job!

Oh FFS Cancer,  you had one job and you're screwing it up. This isn't 'an open letter to my cancer' because a) that  concept has been done to death, b) there's something incredibly twatty about writing letters to inanimate objects or total strangers who aren't going to read them a la 'letter to the man who looked at me funny on the train', and c) I flatly refuse to make something that didn't do its job properly so important. The only mutants worth honouring in my book are Leonardo,  Michealangelo, Donatello or Raphael. If you're not the ninja turtle type of mutant you get no recognition with me.
But up until now, me and the chest bogey had a deal whereby it was caught red handed, stopped in its tracks and I felt a bit grotty but was coming up with new disguises which I like to refer to as Cancer Chic.  There was the cheating phase,  where I hadn't started treatment yet but told people I had cancer just to get the 'but you look so well's'- gotta take your compliments wherever you can get 'em,  then there was the Starlet Scarf phase where I covered my baldness in a scarf and full on 'she's got cancer' uniform, Sad Beanie phase where I hid without makeup under a beanie ALL THE TIME even in bed and nearly in the bath, glam makeup and wig phase,  and the latest look (pictured) which is a mix of the last two- undercover glam, which arose out of necessity because having no lashes is quite frankly mental on your eyes and I only need step put of the house for them to stream uncontrollably. It streaks the makeup and i'm scared it will matt the wig.  Neither is a good look.

So anyway, there I was being successfully vacuous  and treating cancer like a detox and makeover scheme when it decided to throw me under the bus. Again
First there was the news my pulse was high - a normal at rest pulse is about 70bpm. At chemo last week mine was 110 and when it was measured in an ECG this week it's at 121bpm. I am now part of an exclusive group who can feel their pulse in their eyeballs.   I just wish I was musical because I'm sure it would serve some sort of use to me then but at the moment it's quite annoying. I'm waiting to hear from my oncologist what it means for my treatment as it may change things.
Secondly, it turns out when chemo nurses run through the signs of an infection  they're not just doing a mandatory safety notice and alerting you to your nearest loo and what to do if a fire alarm goes off. It turns out infections can happen. They do happen and one has happened to me. So, so close to getting through chemo without one too godammit.
So here I am feeling like i've got the flu on top of feeling like i've got the flu and making arrangements for the girls over the next couple of days with the upshot being an extra weekend at their dad's so I can rest up.
I think i'm a bit put out with having to feel really quite poorly- it's a huge inconvenience and a bit of a low blow that as well as looking like a crash test dummy I have been made to feel like one too. And that nasty cancer pulled my hair out and made me cry. Let me tell you friends that crying is not the same several cycles of chemo in.  Crying without lashes is instant blindness with tears having nowhere to go and don't get me started on what happens if you're a snotty cryer- basically no nasal hair means no flow control- cry and splat, cry and splat....
But don't read any of that and think i'm sat here feeling sad. I'm not. I'm just a bit peaky and feeling incredibly lucky for all the wonderful people in my life. There's still a lot to be grateful for.
How's this for starters 'an open letter to my cancer (cringe cringe cringe),
Dear Cancer,  you're not worth it.

Friday, 11 March 2016

High Five, Everybody

And that,  ladies and gentlemen is how five cycles of chemo are done. It turns out the hospital gave me the wrong appointment and were waiting for me first thing,  whereas I had it written down for the afternoon. A little bit of reshuffling later and I was in, having my second cycle of Docetaxel and thankfully again without the allergic reaction I have feared all along.  I do however have to go back next week for an ECG as my my pulse rate has crept up since having chemo but let's not forget the end is in sight. I think So Solid Crew is even going to make a lesser known comeback record - there's only 21 days to go- only 21 days til my final chemo and in less time than that i'll have some surgery information and an idea on whether I will be having radiotherapy.  Again,  the end is in sight.  In other news i'm hugely excited to say i've been involved with a story with BBC Radio Kent and my miracle centre,  Pickering Cancer Drop-In Centre.  I can't go in to details but the story is set to feature at some point next week- i'll let you know more when I do!

Tuesday, 8 March 2016

A Lump....And A Half

Back to the start. This morning I found myself sat in the same seat, in the same waiting room I was in four months  ago when I felt a bit embarrassed for making a fuss over a bit of a lumpy boob. That morning I was more worried about annoying my boss by taking the time off work for the appointment than i waa about the possibility of cancer. Cancer happened in another place, in another life and I was thinking about getting back to mine once all the tests to be better safe than sorry were done.
Four cycles of chemotherapy later,  I waited to find out what the lump has been upto by way of an ultrasound.  It felt like some macabre parents evening where I was about to see how my tumour was progressing.  It never occurred to me that the main reason for the scan today was to see if it was responding to chemotherapy. I just assumed that was a given  so it stopped me in my tracks when the doctor said that was why I was there.
Here's what I know.  The original size of the lump /tumour/growth  was 22mm. Today it measures 1.3 mm.  It has responded to chemotherapy and even with my limited maths skills I understand it's almost halved.
Yes, I know. Great news.
Except I feel disappointed because I was hoping it had disappeared and I would be let off having any more chemo.  And I feel guilty because at least I have responded to chemotherapy as there's not so many treatment options for triple negative breast cancer.
Yet here I am feeling deflated and ungrateful while people tell me I must be pleased or I must feel relieved or it must make me ready to face the final two cycles. I don't feel determined.  I feel frustrated   because it's out of my hands.  The whole world talks about people fighting a cancer battle but in truth i'm not fighting. I'm accepting and living.
I wish I could fight it. I wish for the first time in my life I could have a real fight,  to offer my lump outside and have a proper playground scrap.  Nearly halved? That wouldn't cut it. I'm not a fighter but on this one,  if I could actually fight my lump I would go primal and beat it to a pulpy death. Instead, there's no trading blows.  Just living in shorter timeframes than I did pre-cancer.  Today, this week, this cycle,  surgery have replaced next month,  next year, one day,  when i'm older as points of reference.
I no longer feel like my time is guaranteed but before I sound completely depressing,  i'm banking on being here a while yet. This week i've started to work on my garden and I very much intend to be here to see it bloom this summer.

Friday, 4 March 2016

Look Good, Feel Better

Mirror, Mirror on the wall, what the hell IS that?

It seems my reflection and I have had a big falling out. Gone for the most part are my brows and lashes, my skin has become the new and exclusive tone of chemo grey and i've been gaining weight which is 'good' for treatment but bad for my self -esteem. In short,  I look like i've got cancer which is quite frankly the final straw in this whole charade. You see, i'm at peace with HAVING cancer  (as long as it's a temporary arrangement), and DOING cancer with all the treatment but LOOKING like I have cancer?  No thanks. I didn't sign up for that.

At the start of this week I was virtually in hiding and I thank the winter weather for gracing me with the opportunity to pull my hat down and scarf up. I think I had got it down to not much more of an inch of me being on display.  If I had found full on stealth combat gear in my wardrobe I would have opted for that and I had begun shuffling with my head down- in part due to achey feet from the docetaxel  but also due to a full on non-verbal apology for my appearance.   I was looking like this when I waliked in to the Look Good, Feel Better course I had booked myself into months ago when I thought I might need a pick me up around this stage.  Nice one, me.

Look Good, Feel Better is a charity run by the beauty industry and women undergoing treatment for cancer can attend a session with beauty advisors and be shown how to apply makeup when they're  suffering the effects of chemo.  Attendees also receive a makeup bag full of products worth about £250  and if like me you love make-up, it's a massive treat, even more so that it's entirely free.

There were only four of us on the course that day but I noticed an interesting thing. Each of us arrived with heads bowed, chatty but subdued.  As the two hours unfolded and we grabbed back a bit of our selves we all had changed.  There was a spark back in our eyes, more smiles and we walked out of the room  bolder than when we arrived.  I'm not saying one slick of lipstick can solve your problems but in my case it makes me feel better prepared to face them.

So here's the new me....looking alrightish and feeling better for it.