Sunday 10 May 2015

EPILOGUE: A time to look back and then to look forward ...

There are many things in life that can change our outlook on the world; having children, losing a loved one … but facing a significant illness or injury must come pretty close to the top of that list.

Of course, that perspective change can be good or bad. For some, there might be an element of blame and recrimination. Why me? Why now? Why don’t people understand?

I know I’ve certainly had my moments of darkness since my diagnosis with breast cancer in January 2012 and some of them have been far from fleeting. I’ve never questioned the ‘why me?’ - (after all, ‘why not me?’) - but I have struggled with the perceived lack of understanding of my situation and what I’ve been through and the sense of isolation that I have felt.

There was a recent television advertising campaign for Macmillan Cancer Support. There were two versions, one with a man and one with a woman, but the message was the same. Essentially, they are stood on a barren, bleak landscape. The wind howls around them and they are all alone. Then they hear a voice calling their name – they turn – and you realise that they are in a hospital waiting room with a Macmillan support worker by their side. The strapline ends ‘no-one should face cancer alone’, or words to that effect.

When I first saw that advert, I cried. It encapsulated everything that I had felt, and had continued to feel, long after my treatment and reconstruction had ended. Cancer, among other life changing experiences, can leave you feeling very alone. You look fine, therefore you must be fine – right? Wrong.

The dark before the dawn
As my close friends will know, I have struggled for a very long time to come to terms with what I went through and what I have ‘lost’.

It was a very protracted chain of bereavements: loss of health; loss of independence; loss of hair and physical appearance; loss of confidence; loss of mobility; loss of my breast; loss of fertility; loss of my relationship … A complete loss of control and my sense of self. It was an enormous amount for one person to go through and then to try and just get ‘over’.

Obviously, some of those things I have since regained and some I will never get back. That’s just the way it is.

As a previously very confident, self-assured person, I found it very hard. I felt completely adrift and abandoned. The only person that had any real comprehension of what I been through, was no longer part of my life. I’d been through this enormous life-changing thing and no-one understood. I had no-one to confide in about how I felt. It was very lonely.

And I didn’t cope well. For a while I was a complete mess. Part of this, I have no doubt, can be attributed to the Tamoxifen that I will continue to take until I am at least 44, probably 49. It’s a wonderful drug but with horrible side effects. I haven’t suffered as badly as some, who give up and stop taking it, but the horrendous emotional slumps that I would experience were bordering on debilitating. I’d wake up – cry – go to work. Come home – cry – go to bed.

So you end up being prescribed more drugs to help ‘even’ your mood. It does improve things but has made my ageing and foggy-chemo-addled memory even worse than before!

I also had high expectations of myself. You expect to be the person that you used to be but, of course, you aren’t. When people talk about getting back to ‘normality’ what they actually mean is managing and getting used to the new status quo, rather than going back to where you were.

It’s about finding that place of acceptance and moving on. Cancer may have changed my life but it certainly has not ended it. It has made me stronger in many ways but still weaker and more vulnerable in others.

Time to recover
My Mum made a good point to me, some months ago. She said that up until about fifty years ago, when someone had suffered a serious illness, trauma or injury they would often be sent away to recuperate. They would be given time to adjust and rest.

In today’s busy world though, we don’t seem to give ourselves that space. We put pressure on ourselves to ‘suck it up’ and ‘get on with it’. I certainly did. And then got frustrated with myself when I would lose my footing and slip back down that dark emotional slope.

It’s recognised now that many cancer survivors (1 in 4) experience a type of Post Traumatic Stress Disorder. I’m not saying that is exactly what I had but I certainly felt very let down and angry: by my body, by some of the treatment decisions, by my ex-boyfriend, even by some of my own family …
Then there was the body confidence issue. Despite knowing that I’m still an attractive, slim size 8 (not bad, for 41!), I am also acutely aware that I now have a plastic tit and a tattooed nipple. For a long time, this held me back from wanting to start a new relationship.

What I should have done, much sooner, was (a) to stop being so hard on myself and (b) to talk to other people who had been through the same experience.

So it was in September 2014, after yet another public alcohol-fuelled emotional outburst in front of my friends (and a few strangers), that I set off to Leeds for a ‘Younger Womens’’ Breast Cancer Care workshop to talk to fellow cancer sufferers and survivors who, like me, were diagnosed under the age of 45.

It was amazing! Obviously very emotional too, but it was such a relief to finally talk to people that just ‘got’ it. We shared stories, a few tears, and reassured each other that we were not going through this alone. They are a fantastic bunch of ladies and I now follow their progress keenly via Facebook and blogs.

This event also co-incided with the restoration, finally, of my wavy mane of hair. It had been a slow process waiting for it to grow back to its former voluminous glory but, when the day finally arrived, I think it’s fair to say that my hairdresser was as excited as me!

Every time I go in to see her now, she always comments on how my hair has returned to exactly the way it was before treatment. It’s true it has – and I count my blessings, because not everyone who has been through chemotherapy treatment is that lucky.

It may sound shallow, but regaining your physical appearance is such an important part of your recovery. To look and feel like your old self, and regain a sense of confidence and control, is the ultimate well-being boost; and one that can’t be prescribed.

Ongoing treatment
There are occasional medical reviews in the form of blood and hormone tests via my GP but my hospital trips are now solely limited to my annual mammogram. I can get in touch with my Breast Care team should I have concerns but it is the ‘Marsden’s policy not to do formal check-ups. It’s certainly been nice to feel ‘finished’ and get off that appointment treadmill.

Nonetheless, I do/will need to go to hospital for other things. For example, because of my family history and recent chemotherapy treatment, I requested to have a bone density scan this year. An appointment was duly made at St Mary’s in Paddington and off I went …

Now, the Royal Marsden – while NHS funded - is a very well maintained, modern facility (albeit in a heritage building) in the heart of one of the most expensive parts of London. St Mary’s, is not.

The minute that I set foot in the hospital, went past the obligatory ‘League of Friends’/ Costa Coffee and onto the coloured floor lines that lead you to the relevant department, I had the screaming heebie-jeebies! It reminded me so much of those early days of diagnosis and treatment at Ealing Hospital – endless waits, needles, scans – that it made me feel physically sick. I came out, overwhelmed.

That’s not to infer that there’s anything wrong with the facilities at Ealing or Paddington (after all St Mary's recently welcomed Princess Charlotte), but it was the mental/emotional association that it elicited from me that I was not expecting.

Anyway, to cut a long story short, it turns out that I do have Osteopenia in my spine. This is the stage before Osteoporosis and I now need to take supplements to prevent further deterioration at this time. This bone-thinning may have already have started prior to chemo, but it won’t have helped. So, just glad that I kept asking for the scan as it is not an automatic process. I’d urge other ladies in their forties who have had chemotherapy to do the same.

What next?
But it’s not all creaky joints and middle-aged pill popping – oh, no! One thing that this whole experience has taught me is live for now. Live in the present and value who and what you have; you don’t know how long you may have them! I just don’t look that far ahead anymore.

Which is why, some of you will know, that I’ve been travelling a lot this year. I’d always wanted to go to Sri Lanka and so, in February, that’s exactly what I did! It was a brilliant experience with some wonderful people and memories.

I’ve also been travelling a lot with work. In the last year nine months, I have been to Cannes for a glamorous awards do, spent numerous days/weeks in Amsterdam, been on various off-site training courses, and just come back from a two-week stint in Asia. 

It’s been bloody hard work but I’ve made the most of my free time too: catching up with Mr P (who also happened to be in Hong Kong), getting to know my team in Kuala Lumpur and living the ‘Raffles’ high-life in Singapore with cocktails and afternoon tea. My life is really good.

Raffles Hotel, Singapore: Live for today! (Diet tomorrow ...)
So 2.5 years out of the remission gate, and 1 year after completing my reconstruction, and I’m feeling as much like my old self as I think I ever will. In the end, I just needed time. And I still do. I still occasionally find myself crying – I did writing this blog - but it’s OK. It’s normal.

I also need to remember to be ‘kind’ to myself. I work with some amazing, but much younger, colleagues and I do need to remind myself that I can’t physically or mentally keep up with them all the time. (But I can still out party them!)

Ch-ch-ch-changes …
I started this blog talking about changes. Change is a fact of life. Nothing stays the same. It’s not always a case of being better or worse, sometimes just different.

Sometimes too, things change for a time and then revert back – as they have for me. Certainly, I’m the closest to being back to the ‘old Kate’ than I have been since late 2011. I feel well, look well, and am loving the good health and independence that I have now regained.

And that’s a change that I can live with.

Keep well, everyone. Much love.
Kate xxx

Saturday 1 February 2014

"Tatt's all folks!"

Well, 2014 has already been full of surprises.

Two years on: CANCER HAS F*CKED OFF!
25 January 2014
Two years ago - 25 January 2012 - I was diagnosed with invasive ductal carcinoma. I wish I could say the time's flown by (it hasn't!) but I certainly couldn't have managed without the on-going support of my lovely friends.

Fortunately, I'm now at the end of the process. My hospital-based treatment is finished and I have an Open Access follow-up appointment on 13 February. These won't be regular appointments but I have been assigned a Macmillan One-to-One Support Worker who has been in touch and who I can contact, should I need her.

I had also been given a date for my nipple tattoo, Monday 10 March, the final stage in a very protracted reconstruction process. However, not one to miss out on the opportunity to party, I decided that it would be nice to celebrate the two year milestone with some of my oldest friends.

Shortly after I was diagnosed in 2012, I travelled home to the Midlands to see them. We had a great (and very snowy) night and I know they have followed my progress keenly. So how better to mark the completion of my surgery and one year in remission than with beer, kebabs and the raucous ex-members of Lichfield Youth Theatre?

Imagine my additional delight then, to receive a call from the Royal Marsden the day before my trip to tell me that they had a cancellation on Monday 27 January and did I want to come in for my tattoo six weeks earlier? Er, yes please! 

I was beyond happy at this news but also quite emotional. I'd waited such a long time for my reconstruction to be complete that the thought of it all finally being over, almost exactly two years after it began, left me quite weepy. After all, I had cancer for eight months but the reconstruction has taken another sixteen! It's been an exhausting process.

But it is now done. :-)

Except, there is an addendum to this story. Obviously, there was another person who travelled much of this journey with me ... Mr P. Even though we are no longer together, I hadn't appreciated just how much he needed closure from the experience too. Only he really saw what I went through and the impact that it had (for both of us) and that is something that we will always share.

He's a good man and a very caring man, and that's why he wanted to come with me on Monday for that final procedure ... Ultimately I said no - as I didn't think it was appropriate - but to come out of the Tube station and to see him waiting for me, to walk me to the hospital, was the sweetest and most lovely surprise!  And while he didn't join me on the appointment, we did go out later for dinner to celebrate.

So that's that. Cancer has f*cked off  and I couldn't be more delighted. The experience has changed me in so many ways but I also hope it has enriched me. I'm certainly far more pragmatic than I used to be because I've learned that some things just DON'T matter. Focus on the important stuff and count your blessings every day.

I also couldn't have done it without the support of my friends and loved ones. You have been awesome! I really am so very, very lucky. I know lots of people don't have that support and I am truly blessed.

And lastly, this blog. I've found capturing my thoughts and feelings tremendously cathartic. I can look back over the last two years - the good, the bad, the funny - and really feel proud of how far I've come.

I hope you've all found it useful too? Your comments and emails have really meant a lot to me.

I do still hope to post from time to time as I move forward on this cancer-free path and I will still do my bit to support and raise money for the various cancer charities. I'm signed up for the Moonwalk in May and I'm sure I may yet get more of you to join me ... ;-)

But for now, thank you for reading, and thank you all so much for your support.

All my love
Kate x

Sunday 8 December 2013

It's beginning to look a lot like Christmas ...

Well, it's been quite a year. I know it isn't quite over yet but 2013, while not as intense as 2012, has brought its fair share of challenges.

But I'm ending the year in a positive frame of mind. I've got a great new job with lovely colleagues, some cracking new boobs and even my hair is getting back to its voluminous former glory. As soon as I can get a date for my cosmetic tattoo, I can put the last two years well and truly behind me.

And that's important because there does need to be an end point; a line that can be drawn where you can say "that was then, this is now." I want to move forward.

Celebratory Cherry Bakewells:
It just seemed appropriate!
I finally had my last operation - the nipple reconstruction - on 5th November. My friend June kindly came with me and then we went home and celebrated ... with tea and cake!

And as always, the Marsden has done a great job. They have basically created a faux nipple out of the scar tissue arising from the earlier mastectomy and nipple removal. It's all very clever. It's a relatively new technique as before they would use bone or some other material to create the protrusion.

It's healed brilliantly too. All I need now is for the skin to be coloured and have been referred for a tattoo date - hopefully sometime in early 2014.

So in the meantime, I'm enjoying my renewed physical confidence and the various seasonal festivities. I've even just appeared in a pantomime - oh, yes, I have! - complete with some very bad jokes and some very bad singing (mine!).

And I'm still very grateful for all the experiences that I've had because they have given me a much clearer perspective on things.

In short, some things just don't matter. So pick your battles and don't sweat the small stuff. Focus on the people and things that make a difference and enjoy the good times while they're there. x

PANTOSTEIN: And yes, that's me at the front playing a power-crazed vampire!

Wednesday 9 October 2013

The things they don't tell you ...

It's Breast Cancer Awareness month again, so I thought I'd share some experiences that they just don't warn you about!

OK, yes, I'm know - I'm lucky. I've been through all the shit stuff (as documented here!) and come out the other side. I'm one year in remission. Things could be a lot worse.

However, I am also in almost constant discomfort and pain. My chest, on both sides but mostly on the mastectomy site, is at best subject to a dull ache and, at worst, is so painful that it wakes me up at night.

It can be excruciating; sharp stabbing pains and muscle spasms across my chest, coupled with stiffness in the underside of my arms. It's not nice and, sadly, seems to be getting worse.

Obviously, I've been worried. I'd been trying to contact my Breast Care Nurses but with no success, so finally resorted to consulting my good friend 'Google'.

And there I found it: Post Mastectomy Pain Syndrome (PMPS).

Apparently it is very, very common. Between 25 - 50% of women who have had breast cancer operations report some level of pain two to three years later. Indeed, one in five women still report pain 10 years later, indicating that PMPS isn’t necessarily something that will go away.

So how come it was never mentioned as a risk? Not to me and apparently not to thousands of other women?

The main reason, I think, is because they don’t really know what causes it. Of course, there are a variety of suggestions: cut nerves rejoining; muscle damage; the body still trying to communicate with the missing tissue (like with amputees) ... But they just don't know.

The most likely reason is the severing of the intercostobrachial nerves, which run through the axillary (arm-pit) region into the arm.

I certainly think this might be my problem, particularly as I also experience pain (albeit to a much lesser degree) on my left-side where essentially I just had a 'boob job'. They did though partially place the implant under the pectoral muscle (as they have wholly done on the right) and that causes constant strain across the front of my chest, my arm-pit and down the underside of my bicep.

Consequently, I have to be very careful. My mastectomy was on the right and, being right-handed, just routine tasks like chopping vegetables can cause the muscles to tighten uncomfortably.

Journeys on public transport, while never fun, can also be difficult; having to reach up and extend my arm to hold on, as well as the fear of being knocked.

Latterly, when I was still with Mr P., this used to cause problems. I don't think he ever fully comprehended the on-going pain and discomfort that I suffered, because why would he? Indeed, why would anybody? It's a very abstract thing to try and understand - particularly when it is so variable.

But, despite the discomfort, just understanding that this is a very real side effect of my treatment that affects many, many people has actually made me feel a little better.

I just wish that the surgeons and Breast Cancer charities were honest enough to flag it as a possible outcome instead of just letting us find out for ourselves.

Sunday 8 September 2013

LATEST SCORE: Katie 1 - Cancer 0

As of this week, I'm officially one year in remission!
This is obviously a good place to be. I'd hoped for my final reconstruction op to have been completed too but an administrative cock-up at the hospital has pushed it back another two months until the beginning of November. Grrr.
This was particularly annoying as it was only after I'd been in for my pre-op assessment at the end of August that they realised that my surgeon would be on holiday on 5 September - the operation date that I'd had since July.
Initially, I was VERY upset at having to wait another two months. While I know that priority must be given to those at immediate risk from cancer, I am still living with the effects and - more than anything - I really wanted the whole process to be finished. Now, allowing for the post surgical cosmetic treatments that need to be applied, it's quite possible that completion will not be until January 2014, two years after my cancer diagnosis.
However, we are where we are, so I'm taking the opportunity to celebrate the good stuff:
  • I'm one year in remission
  • I feel very well
  • I have a lovely full head of hair
  • My new boobs look great!

So while last the few months may have been a bit crap, I am still very lucky; I must never lose sight of that ...

I am a WINNER!

Celebrating at Lichfield Proms in the Park!

Thursday 1 August 2013

Life begins ...

Well, after a promising start, 2013 has definitely taken a slip towards the complete and utter shite!
30 June: Naughty and Forty!
Celebrating with my twin, Clare

The first half of the year had ended positively: a successful implant reconstruction, my 40th birthday celebrations, and new jobs for both me and Mr P. It was all looking rosy.

And then came, July ... I hadn't been able to complete the fertility saving / IVF treatment in April/May but the opportunity arose again and I gave it a go. It was a pretty intensive process, getting scanned and injecting myself three times a day for a week. I had to come off my Tamoxifen and because of my 'severely diminished ovarian function' I was on the maximum dose of hormones.

Anyway, to cut a very long story short, it didn't work; my egg cupboards proved to be pretty bare and the three they did manage to extract were well past their use by date.

Consequently they didn't fertilize. They have offered me the chance to try again, this time injecting directly into the egg, but I really don't see the point because (a) it will cost nearly £5k with very little chance of increased success and (b) Mr P and I split up this week.

So, yes, in the month that I realise that chemotherapy (and age!) has left me pretty much barren, I also now find myself facing a single life again.

Forty is most definitely NOT feeling fabulous!

However, I do accept that you can't keep doing the same things and expecting things to be different; you have to make change for other changes to come.

I'm trying to view it not as an ending but a new beginning ... A chance for two ugly ducklings to spread their wings and transform into swans. I know that's all a bit wanky but something really needed to give.

The last 18 months have been very difficult for both of us with our day-to-day lives becoming completely dominated by my cancer treatment and his unhappy job situation.

It's been relentless with very little room for lightheartedness or fun. That takes its toll and I do think we both need time to refocus on who we are and what we want as individuals. I think it's been so long since either of us truly felt like our former outgoing, fun-loving selves that we have lost sight of our priorities or why we got together at all.

We used to have such good fun together; we'd laugh and laugh ... But when we didn't - my God! - and that's where the damage has been done.

I'm an eternal optimist and so haven't completely given up hope that we might be able to resolve things but for now we must take separate paths.

It feels like a very daunting and lonely journey after everything else that I've been through, but come what may, I feel very fortunate to have had Mr P. in my life

"Don't cry because it's over, smile because it happened" (Dr Seuss)

Sunday 19 May 2013

Getting it off your chest

Jolie: Considered the odds
and made an informed choice
Breast cancer treatments, and specifically mastectomies, have been in the press a lot this week.

It was prompted by Angelina Jolie's very well-written piece in the New York Times, in which she explained her decision to have preventative surgery after discovering that she had one of the BRCA genes that give a much heightened chance of developing breast and ovarian cancer.

However, as she also points out - and which has largely been missed in the wider reporting of this story - the genetic BRCA cases account for a tiny proportion of breast cancer diagnoses as a whole.

So while it is true that carrying the BRCA gene increases your risk to between 50-90% chance of developing one of the several different breast cancer diseases, the vast majority of breast cancers are random and sporadic and down to sheer (bad) luck.

Angelina's piece is very honest and does allude to the complexity of the surgery and the mental and physical impact that mastectomy can have. It is not a straightforward process; it is protracted, painful and, while the cosmetic outcomes can be very good, your breasts will never look or feel the way that they did.

Indeed, they could look better! Mine probably do. But I would be lying if I said the implants feel natural under my skin and I'm not conscious of them every single day. Of course, not everyone has implant reconstruction and many use their own fat and body tissue. This probably feels quite different to implants but it is still a very complicated and uncomfortable process.

Which is why I get REALLY annoyed when people make mastectomies sound like they're simple or straightforward. It's bloody insulting. Especially when, like mine, it was a life or death necessity not a choice.

Heaton: Shut yer cakehole
Take, for example, Michelle-Liberty-X-Heaton. I really do wish that woman would shut her big shiny face. And, yes, I know she's had a preventative double mastectomy; we ALL know, it's all she ever talks about. She's become a cancer-free-rent-a-quote, resurrecting her flagging career by constantly harping on about her, and others', 'media mastectomies'.

And was it really necessary to give interviews from her hospital bed, bleating on about how easy it all was? Maybe it was for you, love, but I'm nine months in and still not finished! She seriously gets on my tits ... Grrr.

*deep breaths*

On the plus side, however, it does allow the breast cancer charities to stay in the public eye; they just need to ensure that the information given remains realistic and objective.

One in eight women will get diagnosed with breast cancer and the vast majority of cases will have no genetic link. So stay vigilant and check. I would never have thought I could get breast cancer at 38, but I did, and I'm hearing more and more cases of women in their 20s and 30s.

That's not to scaremonger but please be aware that the risk is there and that you don't need to have a family link for breast cancer to occur. Once diagnosed though, the treatments are good ... and you might even get a perky new pair out of it!