That was the week that was ...

It’s been an eventful seven days, so let’s start at the beginning.

As you all know by now, I have visited a LOT of hospitals (NHS and private) but King Edward VII in Marylebone is definitely a cut above: it’s certainly the only one where a doorman in a top hat has greeted me like I was arriving at The Ritz.

It was clear to see why it’s the hospital of choice for the Royal Family. The staff are incredibly courteous and attentive and the food … my God, it’s like eating in a restaurant.

The operation itself (because sadly I hadn’t just visited on a mid-week City break) also went very well and the external scarring is amazingly minimal considering the extent of the surgery.

They just made tiny little cuts across my pelvis and in my navel and pulled everything out from below. I actually thought I’d be quite sore ‘downstairs’ but not in the slightest. I clearly have the most expert of surgeons. He must have whisked it all out through my lady-parts like a magician removing a table-cloth.

In the end, I only stayed in hospital the one night. I could’ve stayed two but I was making such good progress – standing up, walking OK (albeit very gingerly) – that I decided to come home. However, I did make sure I had my 3-course dinner first …

The real discomfort of the first few days was from (i) bruising and cuts to the abdominal muscle – a bit like I’d done too many sit ups – and (ii) the effect of the CO2 they pump in to inflate your abdomen during laparoscopic surgery and the anaesthetic/painkillers.

The CO2 irritates your diaphragm which then, weirdly, causes horrible shoulder pain. The more you move, the worse it gets and you just have to wait for it to leave your system – which can take a couple of days. The painkillers and anaesthetic also slow your digestion to a grinding halt, which is bloody uncomfortable as well as anti-social: I felt like a bruised and bloated balloon slowly deflating and leaking gas …

I was also bored. Really bored. I was uncomfortable, incredibly tired and couldn’t settle to anything – so reading or watching television was only in short bursts. I’d wake up early, potter about and then need a nap … like a small child or a pensioner.

Thankfully, that has now passed and I was looking forward to enjoying some alfresco catch-ups with friends in the garden under the gazebo. Except … I wasn’t the only victim of wind last weekend.

Sadly, the inclement weather saw the ‘Winey House’ break free of its moorings and take off like a big sail across the garden; its mangled frame, snapped.

Fortunately, help was at hand. My friend JR came round with a couple of assistants. JR might only be (almost) five but he was very quick to cast his critical eye over the situation and direct his father in the deployment of power tools.

I was very grateful for his expertise and for the cold instruction to purchase “better” garden games … although the Space Hopper that lives in the shed did meet with approval.

Which brings me to yesterday. I’d received a call on Monday from my consultant’s secretary to say that my biopsy results were in and that he had a cancellation if I’d like to come to the consulting rooms and see him in person. Obviously, I said yes.

Unfortunately, it wasn’t good news. But it wasn’t the worst news either.

The biopsy results confirmed that the atypical complex hyperplasia was not limited to the earlier polyp and was extensive inside my womb lining. In short, the diagnosis was Stage 1 endometrial cancer.

Fortunately, this early diagnosis – based on there being no indication that the cells had yet invaded other parts of the reproductive or lymphatic system – means that I don’t need to have any further immediate treatment, like radiotherapy. I’ve already had everything removed.

However, just to be on the safe side I will have a CT scan of my complete torso in a few weeks’ time and will be monitored closely with regular check-ups.

There are some other genetic and hormone test results pending too. There is an outside chance that I might have a rare genetic abnormality called Lynch Syndrome, which is evidenced in a strong familial tendency towards certain cancers - including womb cancer and bowel cancer (from which my Dad died).

It’s possible, I suppose. However, I suspect it’s more likely to be that bitch Oestrogen again. I’m finding her ominous presence quite wearing now: like a ninja assassin constantly lurking in the shadows.

Nonetheless, while I’m very upset to receive my second cancer diagnosis in nine years (and still under the age of 50), I still feel incredibly fortunate. Fortunate that I got referred quickly at new year and fortunate that I had the private medical cover in place to expedite surgery.

If I’d waited those extra two months to get surgery on the NHS (as I was no longer priority, as they didn’t think additional abnormalities would be found beyond the polyp), who knows what the outcome might have been? It’s a sobering thought.

See you later, ovulater ...

Tomorrow I’ll say goodbye to my entire reproductive system.

It’s a been a busy and unsettling few weeks but I now have a much better understanding of what needs to happen and the impact it might have.

My thoughts and feelings on having a total hysterectomy continue to fluctuate. For the most part, I think I’m quite dispassionate … I don’t really know how to feel. In other moments, though – less frequent, thankfully – I do allow myself a little cry. All perfectly normal and understandable, I know.

The isolating nature of our current Covid situation has obviously not helped. There is a real lack of direct access to advice, materials etc. and so I’ve had to hunt it down for myself. The Royal College of Obstetricians and Gynaecologists have some useful resources, as do the Cancer Research and Macmillan websites.

However, by far the best site I’ve found is a US website and forum called ‘The Hyster Sisters’. It’s great. You register and put in your operation date and that puts you in a cohort of other ladies facing similar treatment and gives a ready support network. There are practical tips and videos too on how to prepare for the operation and what to expect post-surgery.

Forewarned is forearmed

Acting on the insights I have gained, I have:

• Cleaned the whole flat. That won’t happen again for quite some weeks … operation or no operation.
• Done a Tesco “big shop”. In particular, I’ve bought peppermint tea, chewing gum and dried figs … those painkillers can be ‘binding’.
• Stocked up the freezer with home-made meals.
• Moved everything I might need to access (clothes, toiletries, kitchen utensils etc) to within easy reach – i.e. no stretching or bending.
• Bought a step to help me get in and out the bath/shower.
• Bought a ‘litter-picker’ (extendable grabber) to pick up things I might drop and a long-handled dust-pan and brush. [Still not sure what I’m going to do about cat sick :-/ ]
• Prepared my ‘recovery spaces’ – i.e. my lounge and bedroom – with plenty of cushions and pillows.
• Made sure a few friends have keys to the flat, in case of emergency.
• Cut the grass. This clearly wasn’t essential but, if I hadn’t, by the time I’d managed to get out there again Chris Packham would have been out there with a pair of binoculars.
• Put up the ‘pop up’* gazebo. This definitely was essential. From 29 March, we (hopefully) will be able to meet groups of up to six people outside in the garden. We don’t want rain in our wine.

*The term ‘pop-up’ is clearly misleading. It did not ‘pop up’. It took a lot of WD-40, swearing and kicking. And now it is up, with the sides on – like a big white Wendy House – it looks like a crime scene tent from Silent Witness.

What happens next?

Obviously, a lot still needs to happen. Not least the operation itself but also some serious conversations about how my hormones should be managed to negate any future cancer-related issues.

So I’ve been in touch with The Royal Marsden’s breast cancer team and told them about my situation and given them the details of my gynaecology team at Queen Charlotte’s so that they can assess (based on upcoming histology/biopsy results) what drugs, if any, I should be on moving forward.

This might seem strange to people – especially those living outside a metropolitan area - that I’ve had to personally tell each respective hospital about my previous relevant treatment at the other. But the National Health Service, while a fantastic institution, is not actually ‘national’. In West London, for example, within just a few miles there are at least four different NHS Trusts – all with their own databases, patient records/numbers. It's certainly not joined up.

Nonetheless, I can’t fault the responsiveness and skill of the teams by which I’ve been treated. While I’ve opted to go private for this particular operation (to shorten my wait time), my surgeon is the same as for my polypectomy in February on the NHS.

What will be different will be the glamour of the surroundings. I’m going to be treated at King Edward VII Hospital in Marylebone, 'London's foremost private hospital' according to its website claim, which has only just said goodbye to Prince Phillip after his recent ill-health. So if it’s good enough for royalty then it’s good enough for me … and I’ve already been online to check out the sample room service menu!

I will keep you all informed on my progress and I continue to be truly overwhelmed by all your support. I've been incredibly touched by all the lovely messages (and gifts!) that I have received. Your good wishes really do mean a lot to me.

Kate x

Cancer Wars: Episode 2021 - The Oestrogen Strikes Back

After nine years of relative good health and prosperity, there has been an ominous disturbance in the life-force ...

Well, hello again. I’d rather hoped that I wouldn’t ever need to revisit this blog but it is the easiest way to keep everyone up-to-date. So apologies that this is a long post and apologies too to those hearing this news for the first time.

Firstly, let me be clear. I don’t have breast cancer again ... but my oestrogen has been trying very hard to ‘pursue other opportunities’. It has been a long and protracted journey but I’ll try to recap as succinctly as I can.

I won’t share the gore of my symptoms but late in 2017 I visited Queen Charlotte’s hospital and a large polyp was removed from my womb. It was a tense few weeks waiting for the biopsy results but thankfully it was benign. I was told that, while it could’ve happened anyway, it was most likely caused by the Tamoxifen that I had taken for five years following my diagnosis with invasive oestrogen responsive breast cancer.

Now the next bit is my stupid fault but also, I feel, partly the fault of the Royal Marsden for not having regular check-in touch points with ‘survivors’. Once your treatment ends, you do not have annual consultations to discuss progress or concerns, you are merely dispatched with a leaflet and an answerphone number.

Now, Tamoxifen does a good job of preventing breast cancer but it has other side effects. Yes, the worst of those is its potential to cause womb cancer but it affects your mood and physical responses in other ways. I was also frankly sick of taking it and being reminded every-single-bloody-day that my tit had tried to kill me. So I stopped taking it.

If I’d been having regular consultations with someone they would’ve told me that this was a stupid thing to do. However, I’d been left to my own devices. I couldn’t even tell you when I stopped. I think it was during 2019 ... I’d come back from India with what turned out to be dreadful whooping cough that lasted over six months and - combined with all that - I fell out the habit of taking it ...

 

** COMFORT BREAK: maybe get yourself a cup of tea ... there’s quite a bit more to explain. **

Roll forward to 2020, the year that we will all remember for all the wrong and terrible reasons. Locked down in our homes for months on end, days and weeks became as one and we lost all sense of time.

So when my symptoms started and for how long I’d had them before I finally contacted my GP in early December, I really couldn’t say.

[And, on the subject of contacting the GP, that deserves a separate little side rant of its own. Why - when you are forced to submit your ‘request’ via an online portal - does it only allow you to type and submit said request in core working hours? It’s not a ‘live chat’ function, it’s an email. The internet works 24 hours a day! FFS ... #shakesfist]

Anyway, fast forward a few weeks to New Years’ Eve. My symptoms by this point were horrendous. I’d been to my Mum’s for Christmas (support bubble, before I am judged!) and I’d been very unwell. I came back to London and found myself awaiting an internal scan at Ealing Hospital (ugh).

Previous readers of this blog will know that I am not a fan of Ealing Hospital. It’s where I was diagnosed with breast cancer. The staff seem very nice but it’s a depressing, under-resourced shithole and my visit on NYE offered nothing to reverse this opinion.

Upshot is they found another enormous lump in my womb. A whopper. I was urgently referred at frightening speed back to Queen Charlotte’s rapid diagnostic unit for more scans and in the space of just a week found myself undergoing surgery (8 Jan).

Well not quite ... they did try to remove it but I was bleeding so heavily internally (sorry, TMI?) that they couldn’t complete the procedure or all the biopsies.

So the saga continued for several more weeks. I FINALLY had the lump removed on 3 February and then I had the tense wait for biopsy results.

• The prognosis: complex atypical endometrial hyperplasia. The cells were not yet cancerous (thank god) but were definitely ‘on the turn’. In fact, my surgeon told me after the fact that the lump was so abnormal that he ‘definitely thought’ it was malignant, so was very pleased it wasn’t ... Me too, mate. Me too. :-/

• The treatment: total hysterectomy with bilateral salpingo oophorectomy. Basically that’s the full engine and all the connecting pipes: uterus, cervix, ovaries and Fallopian tubes. We can’t risk there being any more rogue delinquent cells in there.

Wow. Bet you weren’t expecting that, eh? I certainly wasn’t. :-(

What next?  

So, 2021 has clearly not been great for me. I’m now preparing for another major operation and trying to get my head around the wider implications of that surgery as well as the management of my hormone levels and the risk of potential breast cancer.

Oestrogen is clearly not my friend. In fact, she’s a spiteful little bitch. She’s already decimated one of my tits and clearly been wreaking havoc in my lady parts ... she needs to f*ck off.

So I’ll leave it there for now. I will post again about my operation which, having expedited it with my work health insurance, is scheduled for 23 March.

Finally, I know I appear to make light of these things (with ‘pragmatic resilience’ as one of my friends kindly observed) but these have been, and obviously continue to be, challenging and deeply upsetting times - especially when I can’t even get a hug!

So thank you to all of my lovely friends who continue to be so supportive: sending flowers, leaving cake on my doorstep and just listening to my concerns. While I still have some way to travel, I know I never take that journey alone.

Watch this space!

Kate xx

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

"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

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!

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.