Thursday 21 March 2013

Celebrations all round!

Today is Mr P’s birthday and we’ve both taken the day off to lie in bed, drink Bucks Fizz and be very, very lazy. And tonight we’re off to a ‘Sports Dinner’ with friends to enjoy some nice food and some great company before I leave my job (of over 12 years) tomorrow.

As I wrote in my last post, it’s been an interesting couple of weeks. Things have definitely started to fall into place, in a way that has truly surpassed all my expectations.

Specifically, I have been told this week that I can definitely start hormone treatment and freeze MY OWN eggs! I could start taking the drugs as early as Easter (although the end of April is more likely).

I’m still pinching myself about all of this. Eight weeks ago I felt completely crushed and let down by the system. I felt that I had been cruelly deprived of life options but didn’t feel that I had the energy to fight the NHS bureaucrats.

But, two months later, and the situation is very different. Hot on the heels of being told by the ‘Marsden’s Oncology team that I could stop Tamoxifen for a month and take hormone treatment, I got a random phone call from Queen Charlottes’ IVF Team which resulted in me going in for more tests and getting their agreement that I can start the drugs for egg stimulation ASAP.

I don't know if my 'letter of concern' to the Primary Care Trust's CEO has accelerated any of this but I'm not going to look a gift horse in the mouth. It all feels brilliantly surreal.

Of course, I know it’s not going to be an easy process, far from it. And the timing could be better: who wants to start a new job dosed up to the max on hormones(!) but, f*ck it, I'm just going to go with the flow. By the end of June, IVF and surgery should be finished and I can start my 'naughty forties' with perky new boobs and some frozen eggs in the bank. ;-)

So tomorrow, when I leave AAT, it will be with a real sense of optimism. I'm enormously grateful for all the support that I've received over the last 15 months (and indeed, 12 years) but I do believe that everything happens for a reason and that my life is now moving forward in an incredibly positive way.

I'm also looking forward to meeting up with some ex. AAT friends who will be celebrating with me. Onwards and upwards, as they say!

Friday 8 March 2013

All change!

Crikey, a lot can happen in two weeks.

Firstly, I’ve got a new job and resigned from my current role. I’ve been with the company for 12 years, so it is a big deal (for me, at least!) but I think a change will do me good and give me a renewed sense of purpose. I need to feel that my life is moving forward again.

Ironically, I wasn’t really looking but I saw the post advertised in January and speculatively applied. Getting it though, did make me feel a bit guilty. My current company, AAT, have been amazing in their support of me over the last year and had been trying to revise my role. However, I do also think that the right things happen at the right time and I will wave farewell on Friday 22 March and, following a short break, start my new role after Easter.

Secondly, I have submitted a letter to the North West London Primary Care Trusts regarding my cancer treatment (and specifically the lack of fertility guidance/support) and have been advised that my GP will need to make an individual funding request in order to secure funding for any fertility-saving treatment for me past the age of 40. You have to be able to cite exceptional circumstances, which I think we can (and he has agreed to do), so we’ll see how that goes …

Thirdly, and related to the fertility issues, I met with the oncology team at the ‘Marsden. It was a very informative and positive meeting because (a) I am definitely not menopausal, and (b) they do not see any reason why (if Queen Charlotte’s Hospital thought it could be successful) I would not be able to take the necessary hormones for egg harvesting myself.

This is, of course, a big ‘if’ as my ovarian function has been significantly diminished by chemotherapy. However, the fact that they do not see an issue in the short-term application of hormones, and stopping my Tamoxifen for a month or so, was a very pleasant surprise. They would also prefer me to do this sooner rather than later as then I can have a much longer, uninterrupted period on the medication.

Lastly, I have seen my surgical team. They seem happy with the results of the ‘Coleman Fat Transfer’ so it’s full steam ahead for my implant operation on Thursday 2 May and a new pair of matching boobs, which were ordered today.

So, all in all, it’s been a very positive start to 2013.

Sunday 24 February 2013

So what happened next?

Sorry for being a bit quiet of late but there have been a few things to organise and sort out ...

Many of my friends will know how upset I’ve been about not being able to take any steps, pre-chemotherapy, to try and preserve my fertility. It has caused me untold sleepless nights – especially as I now realise that, contrary to what I was told, I did ‘have time’ and that there were drugs they could have offered me to protect my ovarian function.

So while we can’t undo what happened a year ago, Mr P. and I do want to take issue both with the Primary Care Trusts and with Ealing and Charing Cross hospitals themselves; just to get it on record that we feel that we were given erroneous information.

The cynical part of me, also can’t fail to note that the procrastinations of Ealing Hospital in dealing with my diagnosis and treatment plan also brought me very close to the 31-day deadline by which NHS guidelines say that I needed to start my treatment (after diagnosis). So maybe it wasn’t actually me, that didn’t ‘have time’ … ?

Fortunately my GP has been very supportive and recognises the anxiety that this has caused me. The Royal Marsden too, has been very good in getting me referred to Queen Charlotte’s Hospital for fertility tests and allowed us to explore our other options.

Peas in a pod:
Clare and Katie
This is where my very lovely (and conveniently, identical twin) sister comes in. Because of the nature of my cancer, and the drugs that I am now taking, it is not feasible for me to take any hormone-based treatments. However, my sister has said that - subject to her being suitable with successful test results etc. – she would be willing look at the possibility of acting as an egg donor and letting us freeze some ‘options’ for potential future use.

This would obviously be a very generous thing for her to do. Egg donation is clearly a much more, ahem, ‘involved’ process than sperm donation requiring a month of hormone injections and essentially feeling like crap.

She’s already been down to London and spoken to our consultant, where he explained some of what would be involved and the timescales/potential costs. She’s also had a blood test and scan, the results of which we will get just after Easter (when she will be in London again).

There’s still an awful lot to be discussed before we know how far along this road we can go but it is an enormous relief to me to know that there are still possibilities that can be explored. In particular, my medical team at the ‘Marsden have arranged for me to speak to their Oncologist this week (Friday 1 March) to get a much better idea of whether or not I could ever be allowed to have a hormone-heavy IVF treatment. Moreover, I want to be sure that - given our identical DNA and my previous breast cancer (and her fibroadenoma) – I will not be putting my sister at any increased medical risk from a hormone treatment.

However, there have been some lighter moments this month. Mr P. and I are both really enjoying being back on stage and rehearsing for our next amateur play, the first that we’ve done together since the summer of 2011.

I also hosted a charity wine-tasting event for a number of my friends. Sarah at Window on Wine (and Tesco wine community blog(ger) of the year 2012) donated her time and expertise free of charge and took us through a variety of sparkling wines, which we learnt to ‘swirl, sniff and swig’ with increasing enthusiasm with each additional glass.

It also turns out that Phoebe (my cat) is quite the ‘party animal’. You’d think that fourteen loud, lairy, wine-swigging women would phase a little puss but, no, she worked that room like one of the girls.

All in all, it was a great night and we raised over £100 for the Institute of Cancer Research. Cheers, ladies!

Monday 21 January 2013

Nearly there ...

Subject to another check-up in early March, I have been given a provisional operation date for implants of Thursday 2nd May. While it will mean another overnight stay in hospital it will be nice to finally feel 'balanced'!

After that, there will be another operation (if I want it) to cosmetically finish things off.

More immediately though, the bruising from the graft procedure has gone right down and, despite some residual muscle pain, I am now moving easily.

I'm also waiting on a mammogram date. I'm supposed to have one annually from the date of my cancer diagnosis but I've had to remind them and chase it up.

It's a year this coming Friday since Mr P. and I received my news. So while it's not a milestone to celebrate, it is one to be remembered. We've come a long way ...

Tuesday 15 January 2013

Tickled pink

Mr P. and I had some great news yesterday; he's been selected as a runner-up in the Breast Cancer Campaign's 'Wear it Pink - Superhero' competition!

I nominated him back in October in recognition of all the wonderful support he's given me over the last year. I wanted him, and everyone else, to know just how much I appreciate everything he's done.

So it's lovely that others have recognised his efforts and he will soon be in receipt of  (i) a year's supply of 'Vanish' (sponsors of the competition - and no, I don't know how much a year's supply is either!), and (ii) two tickets to see 'Viva Forever!' the Spice Girls musical. I howled with laughter at the thought of him using the second one but I am going to make him go ...

In other news, we have also been lucky enough to have been cast in a play together. Regular readers will know that Mr P. and I met doing amateur theatre and we have been cast as husband and wife in our group's next show, The Memory of Water. It's a great script, funny as well as moving, and I'm really looking forward to getting back on stage after my enforced hiatus. It will also be nice to do something together that doesn't involve hospitals!

However, I will be back at the 'Marsden on Friday for a post-operative follow-up. The procedure does appear to have been successful in improving my mastectomy reconstruction but it has left my legs very bruised and painful.

So painful in fact that I will now be off work for another few days. I ventured into the office today for the first time since surgery but was in so much discomfort that my boss told me, in the nicest possible way, that he didn't want to see me again until next week! Fine by me ...

Wednesday 9 January 2013

New year, new boobs!

Yesterday I went to the 'Marsden and had my third breast operation but the first that was cosmetic.
 
That makes it sound like it was driven by vanity – it really wasn’t – but it will hopefully enhance the end result when I finally get my reconstructive implants.

Essentially, I’ve had fat siphoned out of my outer thighs and injected into my boob. And yes, I know that sounds like every woman’s dream - especially post-Christmas - but, before you get too jealous, please try to remember that I’ve only had one tit enhanced and have to wear support pants for a month!

The immediate result is that my fake boob is now even bigger than it was before (and now significantly larger than the other one) and bright red! My legs are also very, very bruised and sore. Once I am stood up, or sat down, I’m fine – but getting there is an entirely different matter. I’m feeling very battered and pretty immobile.

Fortunately Mr P. has come to stay with me for a couple of days and was, yet again, the designated ‘responsible adult’ into whose care the hospital discharged me. However, when I say ‘responsible’ most people who know him will roll their eyes ... and with good reason! I’ve cited some of his hospital exploits in the past but this time I decided to get photographic evidence. I really can’t leave him on his own for more than two minutes!

Logging in to the hospital system and playing a football game; trying to take his own blood pressure (the machine stopped working altogether after this); having a little lie down on my surgical trolley.







Also keeping me and my lop-sided cleavage company this week is my new furry flat-mate, Phoebe. She moved in on Saturday and has already made herself very comfortable. She's also had about five different names but, hopefully, this is the final one!

The name was actually suggested by Mr P's Mum and it seems to suit our little glamour puss very well. In fact, it’s also proved rather prophetic as we have discovered that little Phoebe has a few, ahem, ‘digestive’ issues – so has been serenaded with more than a few choruses of ‘Smelly Cat’ in the last couple of days.

But naughty boyfriends and flatulent cats aside, everything else seems to be on track. I’m hoping 2013 could be my year.

Monday 31 December 2012

A hair-raising year!

Dear 2012, what a God awful year you’ve been. I won’t be sorry to see the back of you!

So much has happened in the last twelve months, it’s hard to remember how I felt at the end of 2011. I know I had been to the doctor and been referred for hospital tests but I certainly couldn’t have anticipated just how things would progress.

But now, although my life is different in many ways, it is also (nearly) back to normal. I’m looking forward to 2013 with a renewed sense of optimism. Indeed, Mr P. and I have already got a variety of trips and activities scheduled - well into next summer!

However, I will certainly remember this year. And despite the challenges and the disappointments, I will never forget the support of our friends and loved ones and how it helped to carry us through in the most difficult of times.

I will also never forget some of the more ridiculous moments: Mr P. with surgical socks on his head; being diagnosed with ‘small breasts’; or lifting my wig in a road-rage incident to make the other driver get out of our way! The C-bomb has never been dropped so effectively. ;-)

But that was then and this is now.

So 2012, if you don't mind, I'd quite like you to F*ck Off!

Monday 10 December 2012

Christmas comes but once a year …

And thank, God. I don’t think my liver could cope.

The festive celebrations are now in full swing for me and Mr P, heralded at 1am on Saturday by the birth of Niamh – Mr P’s niece. It’s all very exciting but now I’m busy trying to work out what she might like/need for Christmas.

We’re also preparing for another new arrival. My new cat. We’d popped over to the Mayhew Animal Home to drop off some items that our drama group are lending them for their charity dinner this evening and Mr P. suggested that I might want to look for another feline friend.

I used to have a lovely little cat, called Ellie, who I adopted from the Mayhew in late 2008. After a testy start and some wilful biting (her, not me) we settled into a very nice life together. We became the best of friends and I loved her dearly. Then one day, (Aug. 2011), she just disappeared.

She wasn’t the sort of cat to stay out for more than 24 hours, so obviously I was distraught. An army of friends (including Mr P.) put up posters, knocked on doors and scoured the area for any sign of my “little mate” – but there was none. And there hasn’t been since. She was less than five years old.

Suffice to say, I have often thought of her: the way she would jump onto the seat beside me and lick my hand while I stroked her paw, and the annoyed way she would come into the bathroom and ‘miaow’ when she thought I had been in the bath too long. She was a funny little lady.

But now, with my hospital treatment in its latter stages, I do feel ready for another house guest – and my new lodger (currently called 'Bubbles', but her new name to be decided) will move in after Christmas.

Saturday night was therefore quite a celebration with a new baby, a new cat and a friend’s birthday to toast. It was great fun … what I remember of it. And then on Sunday, Mr P. and I were invited to a ‘fizzy wine tasting’, where my friend (an award nominated wine blogger) educated us in the different types of sparkling wines and how they are produced.

It was a hilariously drunken way to spend a Sunday afternoon! In truth, I was probably just topping up my excessive Prosecco levels from the previous evening, and warming myself up for the Mayhew’s ‘Tinsel and Tails’ fundraiser tonight, but it was a great start to the week.

After all, if you can’t celebrate with ‘Bubbles’ at Christmas, when can you? ;-)

Saturday 1 December 2012

'Tis the season to be jolly

Blimey. It's December already. Doesn't time fly when you've been having fun ...?!

In many respects my life is settling back into the old routine while, in others, I'm still getting a few surprises.

The main 'surprise' is just how crap I still feel. Not physically as my chest muscle is improving, but mentally and emotionally. I'm on the verge of tears quite a lot of the time

It's hard to know how much of this is provoked by the Tamoxifen and how much was there already but, suffice to say that, the insomnia, hot flushes and now high cholesterol are really getting me down.

I've had some body hair fall out too which, after only 2.5 weeks of taking Tamoxifen is a bit concerning. Hair thinning is cited as a risk but I wasn't expecting it so soon. Maybe I shouldn't put the wig up the loft just yet?!

Fortunately, I do have a Counsellor at the 'Marsden and my GP is very supportive. And, of course, I have my lovely Mr P.

Ultimately though, I do have to manage this for myself and come to terms with the residual issues that are bothering me as well as the hormone-related changes that have been induced.

That said, I should also make a point of saying how supportive my company and colleagues have been. The return to work did cause me enormous anxiety but - with special thanks to AW and the HR team - my confidence is slowly coming back.

And I've also got a lot to look forward to this month: assorted shows, gigs, gatherings and parties ... Not to mention a new niece or nephew for Mr. P.

So while I won't be sorry to see the back of 2012, I do plan to enjoy what's left.

Friday 16 November 2012

So far, so good ...

This week I've managed three days in the office, been to see the boob specialist and had a little haircut.

Going into the office was daunting. But Mr P. met me at the station, armed with an enormous cookie and a gingerbread latte, and that made me feel much better.

Everyone at work has been very sweet; welcoming me back but also recognising that it's going to take me some time to readjust.

I'm taking it slow, just working four hours a day, and having catch up meetings with people to get a flavour of what's been going on.

However, Mr P. and I did have some bad news on Wednesday from the fertility clinic about my test results. And I know you can never say never but, post chemo and with an ovarian function level that barely registers on the bottom of their scale, I've probably got more chance of winning the lottery than ever falling pregnant.

Of course, generally for people, IVF might be an option but (a) I'd have to do it before I'm 40 (on the NHS) and (b) I can't have any hormone related treatments because of my cancer risk. Oh, and Tamoxifen causes birth defects anyway ... Ho hum.

I should point out that at no stage prior to this, or even now, was I planning to have a baby. However, what is upsetting is that it seems that I should have been offered some options to preserve my fertility before/and during chemo and I wasn't. So, of course, I do feel pretty cheated and let down.

Anyhoo ... I've got enough to be getting on with, without crying over spilt milk. So, I had a haircut.
 
Weller: he may have soul
but he's got shit hair
Post chemo my hair has grown through, as it has always been, very thick and bushy. What doesn't curl or kink stands at right angles to my head. Up until now I've just about managed to keep it in check with a little bit of hair putty but, after blow-drying my hair for an early morning start and seeing what looked like Paul Weller staring back at me in the mirror, I decided that I needed a tidy up.

As for my breast reconstruction, it's going well but I've opted not to have any more saline injected as I think further inflation will (i) be uncomfortable, (ii) look odd, and (iii) probably pop a few cardigan buttons.

Instead I'm having a fat graft, from my belly or thigh, which will soften the overall appearance and add another, more natural looking, bit of volume - particularly in the original lumpectomy area. If I do decide to have more saline, I still can, but - assuming I don't - I'm probably looking to get my 'proper' implants from mid/late April - just in time for summer. Nice.

But for now, I'm tired. Really tired. Normal life is exhausting!