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.

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.

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.

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!

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 ... ;-)

Scream if you want to go faster

I was woken up yesterday by Simon Le Bon trilling in my ear: "I'm on a ride and I want to get off. But they won't slow down the roundabout." You're not wrong, mate.

I hate fairgrounds at the best of times but this last seven months has felt like being on one long roller coaster.

Anyway, we jump on again next Wednesday when I see the Plastic Surgeon. He/she will take me through the different mastectomy options, and their respective pros and cons, and then I need to decide what I want to do.

In the meantime, people have been keeping me distracted - inviting me out or popping round - I really am so lucky to have so many brilliant and supportive friends.

Mr P. and I even went to see the Olympic torch on Tuesday as it came through Ealing. I'm glad I went and survived the inevitable ill-tempered scrum to take photos, but part of me still feels a bit 'bah humbug' about it all.

However we, or rather Mr P., do have tickets to the quarter and semi finals of the men's football at Wembley. I will go to one match with him and Mrs P. (his Mum, not a secret wife!) will go to the other.

Maybe I'll finally have caught Olympic fever by then ... So let the games begin!

Again.

It's good to talk

After the drama of Saturday evening, things have been subdued.

On the plus side, Mr P. is still speaking to me but it has highlighted that we both need some kind of external emotional outlet that meets our different expectations.

For his part, I know he needs to feel that things will at some point improve. It’s emotionally draining for him to shoulder the burden of supporting me while also being crushed time after time with bad news. He has his own personal challenges and disappointments to face, quite aside from my issues.

Consequently he gets frustrated with me mithering on about my lack of hair and the ongoing side-effects and treatments because, to him, a lot of this is transitory.

But for me, it isn’t. Even when treatment is finished, I know that this experience will be far from over. I will have to live with the physical and emotional effects for the rest of my life. Not to mention the spectre of cancer coming back.

So, yes, I do moan about my cosmetic appearance and want my hair and eyelashes to come back, because I am impatient and I at least want to feel myself on the outside – even if I can’t on the inside.

But I also understand that by me constantly fixating on these superficial things, Mr P. thinks I’m being pessimistic and negative. It’s wearing for him, not to mention relentlessly depressing.

Of course, these things are just window dressing and what I really want to be able to say freely is “I’m scared. I might die. I’m only 39 and yet, I’m bald, barren (probably) and soon to be boobless ... so please don’t tell me my glass is always half-empty. I don’t even feel like I’ve got a glass. And when I do, someone comes along and knocks it out of my hand.”

In many ways, it’s like I'm back to square one - I just feel so frustrated by the situation. My lymph nodes seem clear, so had I had a mastectomy in February then I might not have needed chemo. Or at the very least we would have had time to explore the fertility options beforehand. I feel cheated and let down.

So in essence, what I’m feeling is grief – for what I’ve already lost, and what I am still yet to lose.

And that being the case, I’ve decided to seek some counselling. After phoning Macmillan Cancer Support yesterday, they gave me the details of the Mulberry Centre in Isleworth which I have visited today. Like Maggie’s Centre in Hammersmith they have a range of support services for those living with cancer (and their carers) and I have registered to get on the waiting list for someone to talk to. Hopefully I will able to see someone before the end of August.

In the meantime, I will also try to make use of some of their other group activities and talk to other people in the same position. I think it will do me good - and hopefully, in turn, Mr P. too.