Wednesday 5 September 2012

Well, I guess that's that ...

After a prompt entry to theatre at 8.30 yesterday morning, I am now recovering on the Ellis Ward at The Royal Marsden.

And very nice it is too! Beautifully decorated with feature walls, individual digital TVs suspended over each bed - it's not like any NHS ward that I've ever visited before. And don't get me started on the food; roast beef, rhubarb crumble ... I'm going to go home twice the size! (Mr P. has already serenaded me with a chorus of 'My girl muffin-top')

As for me, I'm very sore and bruised - both around the wound site and in the surrounding stomach and back muscles. They obviously had me contorted into some very 'challenging' positions during surgery.

I've also got a surgical drain attached, so am constantly carrying a little beaker of blood around with me. (Not nice). That will stay attached for up to five days, or until I lose less than 50ml a day, so it looks like I will need to go home with it.

I was asked if I wanted to leave this morning but I said that I'd rather wait until I was feeling a bit more comfortable and able to get up and about - which, in fairness, I now am - so I will go home with Mr P. tomorrow.

Much of my caution was due to a rather bad episode that I had last night. I'd had a lovely evening with some friends who came to visit but, on trying to use the bathroom before bed, had the most excruciating bout of stabbing pains in my chest and back. I've never experienced anything like it. Fortunately Mr P. was with me and was able to call a nurse, who gave me some morphine.

I am on regular painkillers too and antibiotics to prevent infection around the implant and drain. So, fingers crossed, we can keep anything too nasty or painful at bay.

It will be nice to get home and get some sleep without the incessant drone of air conditioning units or the bleep of blood pressure gauges. Last night, at around midnight, I managed to lower my bed and inadvertently pull my emergency call lead out of the wall: cue pulsating klaxon and red flashing ceiling light! I was so embarrassed. Then at 2am, I woke up to see a dark figure looming over me and gave a little shriek. Turned out it was a nurse trying to take my blood pressure but I still felt a bit of a plum ...

Anyway, today I am feeling much more confident in my movement and about the operation generally. While my chest is far from balanced, I'm certainly not flat. Some of that is swelling but it won't be too long before I am fully 'inflated'. It's the first stage of a much longer process but at least we're underway.

Monday 3 September 2012

Second time, lucky

This time tomorrow and I’m hoping to have (finally) seen the back of what is left of my tumour.

It’s a morning operation with pretty much the same preparation as my lumpectomy, eight weeks ago; no food after midnight, no water after 6 am and arrival at the hospital by 7.30 am. Unlike the lumpectomy however, I will be staying in – at least for one night but maybe for up to three.

Consequently, I’ve had a busy day: cooking and cleaning my flat because I know I won’t be able to do much post surgery and packing my bag(s) for my hospital stay and subsequent recovery at Mr. P’s.

In fact, I’ve had a busy couple of weeks. Since coming back from Italy two weeks ago, I’ve had so many hospital appointments that I’ve really lost track of what tests I’ve had where but, suffice to say, that I know I’ve had blood taken and surgical swabs up stuck up my nose at nearly every hospital in west London.

Last week, I also had to have an ECG – the first one I’ve had since before my chemotherapy started back in February. (ECG’s are a strange thing; a bit like being wired up with jump leads). But apart from having low-ish blood pressure and a mild skin infection (now treated) – they’ve declared me fit for surgery.

It does feel weird, as I look down at my chest, to think that my boob (including nipple) will soon be gone. But, as Mr P. and others remind me, it’s just the ‘filling’ they’re taking away – and with it cancer too.

However, I will still shed a tear for my errant boob even though it’s caused me nothing but trouble for the last eight months.

So, so long ‘righty’. It’s been emotional ...

Wednesday 29 August 2012

A year in the life

Believe it or not, Mr P. and I have been going out together a year today.

A lot has happened in the last twelve months. We’d been friends for a couple of years and he’d supported me through some difficult times but neither of us could have begun to imagine where 2012 was going to take us.

We’d only been together for three months when he told me he thought I had a lump on my chest. (He’d actually spotted it a few weeks earlier but wasn’t sure how to tell me). Anyway, being my usual pre-occupied self – I nodded, said I’d phone the doctor, and then promptly forgot about it.

Fortunately, some weeks later and just before Christmas, he mentioned it again – more forcibly. I genuinely had completely forgotten. It wasn’t an avoidance tactic on my part, I really hadn't been that worried. But, to keep him happy, I did phone and make an appointment.

And thank God, I did. If he hadn’t prompted me to go, I really have no idea how long it would have been before (a) I noticed, and (b) I actually did something about it ... it’s a very scary thought!

But, the fact is, he did notice. And I am getting treatment. And here we are, twelve months later, having survived probably one of the most tumultuous first years to a relationship that you could throw at anyone.

Don't get me wrong, it has been bloody hairy at times as we've veered from one emotional watershed to another. It's put a strain on both of us in so many ways.

He genuinely has seen me ‘warts and all’: at my most distressed and vulnerable and – unsurprisingly to anyone who knows me well – my most cantankerous. We’ve laughed together, cried together and absolutely everything in-between. He’s a very special person.

So, Happy Anniversary, Mr P. Here's looking forward to another twelve months: may they be healthier, happier and much less eventful.

Friday 24 August 2012

That was the week that was ...

Blimey. It was all a bit hectic but we've started to make progress on a number of fronts.

In particular, I had an assessment with a clinical psychologist at the 'Marsden with a view to securing some ongoing support post-mastectomy. It was certainly very useful and did help me to realise that there are still a lot of residual issues that I wouldn't necessarily address in the course of conversation with my friends - as brilliant and as supportive as you all are! So I have got a second appointment booked for mid. September.

I also went to Queen Charlotte & Chelsea Hospital to talk about what long term damage chemo treatment may or may not have been done to my fertility, and what my options might be. I've got to have a number of tests but, again, at least things are moving forward.

And on that note, can I just have a little rant about the ridiculous naming conventions of London hospitals and why they're never based where you think they will be. Charing Cross Hospital? Yep, not central London - Hammersmith! Hammersmith Hospital? Acton. Queen Charlotte & Chelsea. Also Acton (right next to Hammersmith Hospital). Completely daft.

One of the few places that is where you'd expect, but not a hospital where I have (yet!) received cancer treatment, is West Middlesex Hospital in Isleworth. However it is the home of the Mulberry Centre where I attended a mastectomy underwear workshop. It was very useful to see what was available on the market and get myself properly measured, and talk to a few ladies who had been through the mastectomy process.

All of which stood me in good stead for meeting with my breast cancer nurse to look at some post-op pictures and to see/feel some implants. Mr P. seemed particularly keen on this aspect of the meeting and was caught fondling the implants very attentively while I discussed the finer details of the reconstructive process ...

And now, looking forward to the Bank Holiday, we're taking full advantage of the BMI hospitality lounge at Heathrow and waiting for our flight to Edinburgh. Eleven of us are off to the Festival to celebrate our good friend June's 40th birthday. I think it could get messy.

Tuesday 21 August 2012

The countdown begins ... again!

Two weeks today and I will be having my second, and hopefully last, operation. The mastectomy reconstruction will take several procedures over the next few months but, in surgical terms, this is the ‘big’ one.

I’m much more comfortable with the whole idea now, having had a few weeks for the news to sink in. I’ll see my breast care nurse tomorrow to discuss the process a bit more fully and I’m off to a workshop today at the Mulberry Centre to speak to a company specialising in mastectomy underwear. It will be useful to get an understanding of what I might need and what is available.

My renewed positivity and practical frame of mind is due, in no small part, to having just come back from a week in Italy. Mr P. and I had a wonderful time staying with his friends in Locorotondo – so special love and thanks to Joe and Pamy (and the rest of the extended Maggi and Sanders families) for making me feel so very welcome.

I’ve also finally stopped wearing my wig and scarves. It’s been very liberating and the first time my scalp has been ‘al fresco’ since early March. My hair still needs to thicken up a little bit but I am now sporting a ‘grade 4’ crop reminiscent of Annie Lennox circa 1983. My eyelashes and eyebrows are coming back too, so it’s all good.

In addition, I’m being pre-assessed this week for counselling at the Royal Marsden. It’s a bit of an odd one because, right at the moment, I feel fine. However I have no idea how I’m going to feel after my operation so want to stay in the system and get some support ready, should I need it. After all, as with all things on the NHS, there will be a waiting list.

Lastly, also this week, I am finally going to speak to someone about the fertility tests/options that I should have had back in February. Post-chemo, it may well be a case of ‘shutting the stable door’ but it would be good to get some clarity either way.

So all in all, it’s going to be a busy few days.

Wednesday 8 August 2012

Next steps

OK, it’s actually happening. I will have a mastectomy of my right breast on Tuesday 4 September during which I will also undergo the first stage of an implant reconstruction.

I had hoped that my surgeon might go for a one-stage process but this isn’t the case. Instead, because of my slim build (grrr!) I will need to have several procedures over the course of another three to six months.

After removing the breast tissue, my surgeon has decided to insert a tissue-expander which will be partially injected with saline and topped up over the course of 6 weeks. This will stretch the pectoral muscle and prepare it for the insertion of a full implant.

The expander will stay in place for about three months and then either it will have some fat injected into the skin around it and left for another few months or have the implant inserted.

Now you might be wondering how a tissue-expander is, well, expanded? It has a valve. Seriously. Not on the outside, thank God – I won’t look like a lilo – but on the inside, under the skin, that they inject the saline into. The expander is like a little plastic bag that they slowly inflate. (And it can pucker and wrinkle like a plastic bag too!)

Consequently it does seem that I will have some months of lop-sided boobs to look forward to but this does seem to be the best way to ensure a good long-term result. Ultimately, I will also need some implant surgery on my other breast - or ‘lefty’ as Mr P. likes to call it - to match the raised effect of the reconstruction.

It is a somewhat drawn out process but I’ve come to expect that now. The important thing is to take the time to get the balance right. On the plus-side, the surgeons seem doubtful that I’ll need to have radiotherapy after the mastectomy – but I’m not counting my chickens just yet!

Tuesday 7 August 2012

Plan B

I worked out today that it's 28 weeks since I was first diagnosed. Sadly cancer still hasn't f*cked off but at least we do have the secondary option of mastectomy.

I'm certainly now feeling much more 'practical' about it all and that things are finally moving forward again. That wasn't the case a few weeks ago. In fact, I was very frustrated. Knowing that I had a big decision to make but not having any access to the information or people that could help me make that choice was very distressing.

In particular, I was very disappointed with my breast care nurses not picking up the phone or returning calls. This was not the support that I had been led to expect. I was left feeling very let down and cast adrift at what is a very uncertain and upsetting time.

Basically, I was told on 20th July that there were two main mastectomy options: a DIEP flap, that is, one using your own tissue (usually from your stomach, like a tummy tuck); or an implant (of which there are various sorts).

However trying to find out more detail about both, while not knowing if I was even eligible for the DIEP or when someone would tell me, was excruciating.

Anyway, I eventually got to see a plastic surgeon to discuss a DIEP on 1 August. I say eventually because I had to chase for the appointment and then the surgeon was an hour late despite our appointment being the first of the morning!

And then, not a sniff of an apology ...

Well, Mr P. wasn't having that! He'd already collared the breast care nurse about her poor response and wasn't going to let a tardy Harley Street specialist off scott free. The bloke looked visibly shocked to be asked so directly 'So, what was the hold up?' and, coupled with a firm handshake and a hard stare from an imposing Mr P., was left so unsettled and shaken that he had to leave the room to compose himself. Awkward!

But also quite right too. There hadn't been any appointments before ours but instead of being there at 9am at the start of the clinic, as we were, he turned up at 10am. We know, because we heard the receptionist say so. And I know these things happen but to not even apologise or acknowledge the fact that he was an hour late arriving at clinic was pretty outrageous.

Anyway, ticking off over - the meeting was quite productive. I've decided, on the plastic surgeon's recommendation, to have an implant - which may, or may not be permanent.

He thinks that I might just have enough tissue on my stomach to do a tissue reconstruction but - given that I may yet need radiotherapy and radiotherapy can shrink the new breast tissue - they think it best to save my tummy for now, given that I don't have 'surplus'!

However, I can still have the tissue reconstruction at a later date, should I want one. It could even be years from now (as implants do need to be replaced). Obviously both types of reconstruction have benefits and risks - and a failure rate of about 1%. But at least I have some flexibility should I need it.

So, I won't be seeing the plastic surgeon again - which I think he's probably quite relieved about! Instead my implant will be done by my original breast surgeon Mr Gui who is, apparently, an expert in this type of reconstruction.

And we shall see him tomorrow to discuss the next steps which should, hopefully, include an operation date. My appointment is a 10.45am but I think I might take the precaution of packing some sandwiches ... ;-)