Thursday 26 July 2012

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!


Tuesday 24 July 2012

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.

Sunday 22 July 2012

What Katie did next

The strain of putting a brave face on things finally broke me yesterday, in quite spectacular fashion.

Mr P. is very upset with me. He's a proud man and my very public and volatile meltdown was almost entirely directed at him. I was out of order.

But the fact is I am completely and utterly terrified. It only really dawned on me last night when someone asked: "So, what do they do if they still find cancerous cells after the mastectomy?" Er. I don't know. I'm not sure there is anything else.

Having emotive conversations like that when you've had a few drinks is never a good idea. Cancer has become my sword of Damocles, constantly hanging over me but not always fully acknowledged.

And that was the nub of it yesterday. I just don't feel I've been able to fully express how scared I now am, for fear of upsetting the people closest to me, particularly when they don't want to accept that - even if they get rid of all the cells - cancer, and its effects, will now always be part of my life.

I'm not a negative person but I am realistic. While I will always try to make the best of things and continue to live my life as fully as I can, I can't hold up a pretence of blithe optimism just to keep other people happy. That's not fair on me.

The fact is that certain changes to my body caused by the chemotherapy cannot be reversed. And worse, for the time being at least, I've still got cancer.

So let's be honest: that sucks.

Saturday 21 July 2012

The race isn't over yet

Just when it looked like we were winning, it turns out that the final hurdle is much higher than we thought.

Sadly cancerous cells were found in the 'margins' of the tissues that were removed last week and, after some discussion with the surgical team, I will now need to prepare for a mastectomy (and reconstruction).

This definitely seems the most sensible option, as a further lumpectomy and partial reconstruction are just not feasible.

Obviously I'm gutted. I'm still recovering from the lumpectomy and coming to terms with a wide assortment of other long term chemo related issues, and now I need to prepare for what will be major, and life changing, surgery.

I spent most of yesterday feeling pretty shellshocked. It's not that I couldn't take it in - I had prepared myself for the worst - but I just really didn't want to have to think, or talk, about it until I have all the facts available to me.

And that probably won't happen for another week or so, as I need appointments to see both the Breast Cancer Nurse and the Plastic Surgeon, as well as my Consultant. There's a lot to consider.

For example, will they use fat from my own body or an implant? The first is more natural but will leave other major scars - and might not even be possible, given my slim frame.

In order for them to judge this, I had to have some photos taken. That was surreal. I don't really know what I was expecting but going down to the hospital basement and having my boobs and bum photographed by a man with a digital camera, was quite odd.

Obviously, Mr P. was with me. Indeed, I think he took the news of my impending surgery almost harder than me. He had been so looking forward to, and needing, a "win" that he just wasn't prepared for the alternative. It was a very difficult day for both of us.

In normal circumstances then, we would probably have stayed in last night. But, no!, Mr P. is only appearing in a play this weekend and so I wanted to support him.

I'm glad I did too as it was a great show. It certainly did me good to get out and, I know I'm biased, but I thought Mr P. was excellent. I'm very proud of him. In so many ways.

Wednesday 18 July 2012

On the mend

A week on from the operation and the bruising and swelling is going down. I’m still looking pretty battered but I have been able to remove the protective dressings.

I’ve got steri-strip over the two wounds though, so I haven’t seen the extent of things, but I’m absolutely staggered that they both look so small.

My tumour was very high on my breast, almost over the bone, so I’d fully expected a prominent and visible scar. However, that isn’t the case! They’re very discreet about these things these days and, instead, they actually cut round the nipple and go in under the skin. It all looks very neat and tidy.

I have another incision at the side under my arm. This was where they did the biopsy to test my lymph node. Because of its position, this one is actually far more uncomfortable than the lumpectomy and has made my armpit and the underside of my upper arm really hurt. I’ve got painkillers though, and stretches to do, so I’m hoping this improves soon.

In the meantime, I also need to wear (and sleep in) really comfortable bras. And by comfortable, yes, I do mean soft, padded and not that attractive. I didn’t actually own any non-underwired bras so, before the operation, Mr P. had to go out and buy me some. Bless him, it’s the first time he’s bought me underwear and I’m not sure it’s what either of us would have had in mind ...

And so now I’m just killing time until Friday, when I’ll find out if they think they got everything. Fingers crossed!

Wednesday 11 July 2012

Goodbye and good riddance!

Yesterday, I finally saw the back of my tumour – at least, what was left of it!

It was an early start at the hospital but it was good to know that I was second in theatre and so wouldn’t be kept hanging around. By 8.30am, I had already seen the anaesthetist, the surgical team, signed my consent form and had things written and drawn on me in felt-tip pen. (See pic. below)
I then got sent for an ultrasound scan and a ‘localisation wire’. I had thought that this would be like the marker that had been inserted previously but, no, it really was a piece of wire.  A long piece inserted in my chest and left dangling in a 6 inch coil in front of my tit. I have no idea why it had to be so long and hang externally but there you go ...
They also had a little scribble on me in felt-tip pen and sent me for a mammogram. Now, mammograms aren’t that comfortable at the best of times but imagine having one with a piece of blood-covered wire sticking out your chest. It was an experience.
In the thick of all this, was Mr P. He watched as they inserted the wire, vociferously corrected them when they called him my ‘husband’(!) and then – bizarrely – helped the mammogram operator work the machine. He came away very pleased with himself.
By the time I got back to the ward and got my gown on, they had called me to theatre. This was the point when I started to shake.
Mr P. came down with me and wanted to stay as they put me to sleep but this wasn’t allowed. So as I lay on the trolley, I could feel my legs trembling. The anaesthetist was very nice though and after I explained (and he saw) how damaged my veins have been from the chemotherapy he inserted a small children’s cannula instead of the usual size. And that’s one of the last things I remember ...  
About 2.5 hours later, I woke up in recovery. I lay there for about an hour and then got wheeled back up to the ward where Mr P. and my lunch were waiting for me. I have never been so grateful for a ham sandwich and a cup of tea! In fact, I think I knocked back about four cups before being escorted, with wobbly anaesthetic legs, to the bathroom.
At this point, I still wasn’t sure the extent of the surgery. I knew that they were doing a biopsy of my lymph node but I had no idea if anything had been found and if they had taken more than one node. However, the ward nurses were able to confirm that it was good news: the lymph node tested contained no cancer. Either it had never spread or the chemo had seen it off.
This was such good news that Mr P. and I did get a bit emotional. Obviously, I can’t be sure that I’m out of the woods until next Friday (20th) when I’ll hear whether the ‘margins’ around the tissue taken were clear, but we’re remaining hopeful.
I have to say, that all the medical staff at the ‘Marsden were lovely. It’s obviously a really well-resourced hospital which I know isn’t the case for all NHS facilities. I knew I was in good hands.
And, as always, I’m really grateful to Mr P. for supporting me at every stage.  Even though he does get up to ridiculous mischief – like putting surgical socks on his head – it really does help to lighten the mood.
So for now, I’m back at his house where he’s taking very good care of me.  My chest is obviously very sore and swollen but not nearly as uncomfortable as I thought it would be. I’ve got exercises to do too, which I have started, and a substantial supply of painkillers.
It’s really just a case of resting and being patient. I’ll know the full picture soon enough, but it’s looking positive.
Not entirely sure why this was necessary ... ?!

Monday 9 July 2012

Get ready, get set ...

Blimey. Can't believe we're nearly there. Tomorrow I'll finally have my operation.

I'm really very nervous. I've never had an operation before but the hospital has provided a lot of information to prepare me.

On Friday, Mr P. and I went for a 'pre-surgery assessment'. I had some blood taken, had my weight and height measured and met with the physiotherapist who gave me lots of information and exercises to get the strength back in my pectoral and shoulder muscle post op.

We also saw the 'day ward' where I'll be for much of tomorrow. That is, before and after having a 'marker' put in my chest - yes, another one! - and being sent off for surgery. And, of course, while we waited for the nurse, Mr P. was up to his old tricks; rummaging under the bed for latex gloves and performing a Marcel Marceau mime routine behind the curtain ...

Then today, we were back for the dye injection. It's not really dye at all but a clear radioactive fluid that they inject into the lymphatic system to allow them to x-ray and see which lymph nodes they want to test. So, apart from a sharp needle in the nipple and having to lie still for 15 minutes, it was quite straightforward. I've had so many painful procedures and scans that it felt pretty routine.

From there, my boob and I were free to go. Free to have its last supper (by 12 midnight) and its last drink (by 6.30am). We've got to be at the hospital at 7.30am, so it's an early start. It's a day procedure so I'll be prepped and chipped by 10am and hopefully operated on by lunchtime.

Because it's general anaesthetic though, I'm not allowed to leave on my own and must be supervised for 24 hours by a 'responsible' adult ... I'm not sure I know many of those, so Mr P. please step forward! ;-)

Thursday 5 July 2012

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!

Tuesday 3 July 2012

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.