The write stuff

Got a letter today from the ‘Marsden. It’s a copy of one that they’ve sent to my GP, which I requested as part of the (innovatively named) ‘Copying Letters to Patients’ initiative.

It’s always weird seeing the hospital letters; reading what someone else has said about you to another third party. The medical parlance can also be a bit confusing.

The one from Charing Cross last week though was pretty positive and said that my tumour reduction from chemotherapy represented ‘an excellent clinical response’.

The ‘Marsden letter was a follow on from that. It said that I had ‘responded well to primary chemotherapy’ and that there is no lump ‘where the tumour site was originally’. However, there are some ‘residual abnormal areas’, so these are the bits that will be chopped out and tested. (Along with any node tests/surgery that needs to be done)

It did unsettle me a bit seeing it all in writing; reading detailed information about ‘sentinel node biopsy’ and ‘axillary dissection’ and knowing that it was all about what they were going to do to me. I found myself getting a bit teary.

However, more upsetting was when I read the letter to Mr P. and happened to spot the summation of my case at the start of the letter:

Feb. 2012
3.3cm mass upper inner right breast (diagnosed at Ealing Hospital), small breast

Small breast?  SMALL BREAST? Seriously, did that really need to part of my official clinical diagnosis?! Talk about adding insult to injury.

Anyway, my ‘small breast’ and I are going to the hospital tomorrow for its pre-op assessment – blood test, ECG etc and to find out more about what happens next week.

I’m also going to give some extra blood – I’m nice like that – for a clinical research trial that they’re currently undertaking. It won’t necessarily benefit me and won’t affect my treatment but if the results do show up any significant genetic factors, then I think I will get told.

Either way, I think I should help out if I can.  It’s vital for them to keep investigating and testing, so that new and even better treatments can be found.

Which is why events like 'Race for Life' are so important - that I know many of you have completed, or are currently training to take part in. All that fundraising will help Cancer Research and others to develop clinical tests and trials like this one.

So well done, all of you. And good luck!

Not long now!

A week today and I’ll (hopefully) have had my operation.

It’s been a long time coming and, much as I’m desperate for it to actually happen, I’ve realised that I’m starting to get quite apprehensive.

Weirdly, I’ve also lost a bit of hair. I thought all that had finished but woke up two days ago to find quite a lot of ‘chemo’ hair on my pillow.

You can always tell when it’s chemo-related hair loss because the ends of the strand (i.e. from the follicles) look black and burnt. My finger nails have been quite damaged too but, like the hair, they seem to be recovering and will grow back in due course.

Because ... as of today, chemo is officially FINISHED! *Whoop!* So it was good to be able to mark the occasion, as well as my birthday, on Saturday.

My twin sister came down from Hereford to join the celebrations, as did many of our friends and relatives from across London and much further afield. It was a really great night.

Special thanks, as always, must go to Mr. P. I felt thoroughly spoilt all day: presents, cooked breakfast, nice restaurant lunch, champagne in the garden ...  And then, of course, there were all the fabulous gifts, flowers and baking from my friends! I really was very touched.

So thank you, everyone. You made me, and my sister, feel very special. x

Wonderful friends and wonderful cakes* ... provided by Neil, Diana and Angela (Starlight Cake Design).
*Not forgetting Craig's delicious muffins. Not pictured. ;-)

Me and my lovely Mr P.

What the world doesn't see ...

I'd like to think that, generally speaking, I'm a quite positive person. More of a realist than an optimist but I do try to make the best of things.

But I also have my down days; my introspective, tear-filled, sad days. Fortunately they’re not very often but they’re there all the same.

Normally though, it’s just Mr P. that sees me like that. And that’s deliberate. I don’t want people to feel bad for me, or sorry for me, because I’m really not unique in what I’m experiencing.

However, that doesn’t make it less difficult. As a woman, it’s very hard to have every aspect of your femininity, and how you view yourself, taken away. Everything from your short-term cosmetic appearance - your hair, eyebrows and eyelashes – through to the possible permanent loss of your breast(s) and fertility.

I’ve deliberately only taken one photo of me without my hair and that was before I lost my eyebrows and lashes. I know I’ll never forget how I look but I don’t need or want a photographic reminder. In fact, apart from Mr P., only my Mum has seen me in a full state of unadorned baldness.

However, that stage is passing. I do now have hair growing on my head and I’m really hoping that it won’t be long before I can go wig and scarf free. And not before time! The chemo-induced hot flushes are doing me in.

Honestly, I would kill for a good night’s sleep right now. Every night I sleep in one hour bursts, alternately waking up in sweats or chills as I throw off the duvet or pull it back up in some kind of cruel nocturnal Hokey-Cokey.

But through it all, I have never once thought ‘Why me?’

After all, ‘Why not me?’ If 1 in 8 UK women are going to get hit with breast cancer, then sadly some of us will need to bite that bullet. And all that it brings ...

A week of two halves

The end of last week felt a bit crap: inconclusive meeting with my surgeon, dreadful joint and muscle pain, and don’t get me started on the England football team ...

Today though, I’m feeling good. Much perkier.

I’m finally starting to remember what it feels like to feel normal. To know that I don’t have any more chemo and actually have the physical and mental energy to get jobs done.

So I’ve been a busy bunny: getting things sorted at home, meeting up with friends and – shocker! – doing some exercise.

Mr P. and I also had a lovely little weekend break, which I’d booked months ago to mark the end of chemo. (I do LOVE a Groupon!) It was nice to get away, albeit just overnight.

In fact, it was a very English weekend: nice dinner and stay in a village coaching inn, full cooked brekkie followed by a little walk in the countryside. (I know anyone that knows Mr P. will find that hard to believe!)

We even clambered up a very steep hill to look at windmill. (Seriously) But not just any windmill. Oh no. Only the windmill from ‘Chitty Chitty Bang Bang’. Impressed? I thought so. ;-)

From there we set off to a local vineyard and brewery where we got to sample what is allegedly Prince Philip’s favourite tipple, Old Luxtors Gold Ale. Apparently the old goat likes to drink a bottle every day ... although I don't think that's how he ended up in hospital!

So lastly, after getting tipsy on real ale and damson vodka, we finished in Windsor for roast beef sandwiches at The Alma, the lovely little pub owned by Mr P’s friends. (Actually, that wasn’t the end of the day – we watched the England v. Italy game. But less said ... )

In short, normality is returning. I’m not in discomfort anymore, my hair is growing back and I’ve got lots of things to look forward to in the next two weeks before my operation, including lots of nice meals and watching some very talented friends perform on stage.

Most notable though, is my birthday / ‘Cancer can f*ck off’ drinks on Saturday. I’m very excited about this. It’s not a ‘big’ birthday (not yet!) but it does provide an opportunity to get everyone together that has supported me thus far on this journey. And that’s a lot of people!

We're going to a have a proper good English ‘knees-up’.

And we’re off!

Well, almost. Saw my surgeon at The Royal Marsden today and it’s been confirmed that I will have a lumpectomy and lymph node biopsy on Tuesday 10 July.

In the meantime, I’ll need to have a pre-surgery assessment (bloods, ECG etc.) on 6^th July and a radioactive dye injected on the 9^th.

However ... the surgeon was also keen for me to understand that there is still a 10% (ish) chance that I might need a second operation (i.e. a mastectomy).

Basically, the problem with having chemo before surgery is that, while it can shrink the tumour and show which drugs are effective, any dispersal of the tumour can be uneven and patchy and make it difficult to see - and therefore completely remove. 

So I won’t know until Friday 20 July, when I get the results of the pathology report (i.e. the assessment of the cells removed), whether or not I’ll have to go back and have my entire breast removed. I can see that being an agonising 10 day wait ...

I really don’t know how I feel about all this. I had rather hoped that the operation would bring me some sense of completion or closure but now I realise that it might just be a holding position for something far more drastic. It’s all very daunting. I feel like I’m in limbo (again!)

Added to which, I’m also still very uncomfortable from last week’s chemo. My Mum has lent me a walking stick but I’m finding it very, very difficult to get around and that, coupled with the increasingly frequent hot flushes that I’m getting, resulted in more than a few tears as I limped to and from South Kensington today!

Fortunately, the long-suffering Mr P. was with me. Holding my handbag as I tottered unsteadily along and giving me cuddles each time I started to cry. (Most notably in Outpatients when, after limping for twenty minutes to get there, I was told that I’d been in the right place to start with!)

Anyway, we are where we are. And I’m now at home resting my legs and Mr P. has gone to Royal Ascot.  I’m glad he still managed to make it, despite our protracted hospital visit, and I fully expect him to feel very unwell tomorrow! 

I even asked him to put on a few little bets for me, including one on the ironically named ‘Rebellious Guest’.  Appropriately, however in hindsight, it didn't win ...  J

Thank you!

In spite of everything that I’ve been through during the last few months, I really do feel so incredibly lucky.

I have been truly overwhelmed by the amount of support I’ve received. Both from friends and family, as well as people that I barely know – or have never met!  It’s been amazing.

Leading the charge though has always been Mr P. and this weekend he surpassed himself, rallying a full-on ‘Ground Force’ style team to come and blitz my overgrown garden.

Armed with strimmers, pick-axes and saws they came; digging out concrete, chopping down trees and generally weeding for England ... while I just looked on in awe, proffering tea and biscuits. It was a truly fantastic effort.

So please can I say an ENORMOUS thank you to everyone who so generously gave up their time to help: to Barry, Neil, Roger, Diana, Rachel and Craig ... but mostly to my wonderful Martin (Mr P.) who I have NEVER seen work so hard!

Where's it gone?!

My tumour is now so small that they can't even find it with a scanner!

We visited The Royal Marsden's 'Rapid Diagnostic Unit' today. It's very posh, like the rest of the hospital, and not all like any other NHS facility I've visited.

They looked at my chest and armpit with an ultrasound and, despite finding the 'marker' and what looked like scar tissue, there was no clear tumour to be seen. Hurrah!

Obviously this is brilliant news, especially as the final chemo won't even have taken effect yet. So we'll speak to the surgeon next week and get the plan of action, but it all seems to be boding very well.

In fact, I was so overwhelmed, I went back to the changing room and burst into tears. But good ones for a change. :-)