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.
Wednesday 9 October 2013
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!
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)
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 |
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 |
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!
Friday 10 May 2013
The icing on the cake
Saw one of my breast surgeons at the 'Marsden today and she was very pleased with my "excellent result". So pleased, in fact, that she dragged in another colleague to have a look.
To be fair, my boobs do look great. Far more balanced in shape than I had anticipated and quite natural in texture due to the earlier fat transfer.
The next and final stage is nipple reconstruction. A lot of people don't bother with this but I really don't need to decide until I go back again for my review in eight weeks.
Nipple-wise, they can either create one out of scar tissue or mould a prosthetic one that you stick on with skin glue, presumably for special occasions ...
The argument for creating one from scar tissue is (a) it's permanent and (b) it looks realistic "from a distance". Now, call me old fashioned, but I generally only display my nipples in close proximity, so I'm not sure that this is a massive selling point. However, it would be nice to complete the process and feel that I'm finally finished.
Mr P. and I still wanted to mark the occasion though. And so we did, with coffee and cake ... OK, quite a few cakes, care of the Hummingbird Bakery.
It was also an important day for another reason. Eight years ago today, I lost my lovely Dad to bowel cancer. It simultaneously feels like both a short time and a long time, but I think of him often.
So here's to you, Dad. Thumbs up! x
Mr P: Boobs and cake. What's not to like? |
The next and final stage is nipple reconstruction. A lot of people don't bother with this but I really don't need to decide until I go back again for my review in eight weeks.
Nipple-wise, they can either create one out of scar tissue or mould a prosthetic one that you stick on with skin glue, presumably for special occasions ...
The argument for creating one from scar tissue is (a) it's permanent and (b) it looks realistic "from a distance". Now, call me old fashioned, but I generally only display my nipples in close proximity, so I'm not sure that this is a massive selling point. However, it would be nice to complete the process and feel that I'm finally finished.
Mr P. and I still wanted to mark the occasion though. And so we did, with coffee and cake ... OK, quite a few cakes, care of the Hummingbird Bakery.
It was also an important day for another reason. Eight years ago today, I lost my lovely Dad to bowel cancer. It simultaneously feels like both a short time and a long time, but I think of him often.
So here's to you, Dad. Thumbs up! x
Friday 3 May 2013
"I must, I must, I must improve my bust!"
And I finally have! Yesterday, I was back for surgery at the 'Marsden for the fourth time in less than 10 months to get my implants. Even one of the day ward nurses commented: "I recognise you. You've been here loads!"
It's true I have. Never mind the surgery but all the assessment, review, counselling and nursing consultations have been pretty numerous.
It was quite nice though to see my surgical team again, Gerald Gui and Ana Agusti, who have looked after my case for exactly a year. They also brought another member of the team in pre-op to assess my 'breast volume'.
I thought this was quite funny and asked him, "so doctor, your job is to look at naked breasts and guess what size they are?" He looked a bit embarrassed and then, when Mr P. asked for a business card, the poor bloke didn't know what to say!
However, he obviously judged well because I'm very pleased with both the sizing match and the symmetry in my clothes. I really don't think anyone else would know the difference but it does mean that I don't have to pad out 'lefty' any more and can start wearing my nice bras again instead of mastectomy ones.
I'm still very taped up and sore. The left hand side is particularly painful as I hadn't had surgery there before, but both sides are very tender. I can lift my arms up above my head but can't reach up yet so will definitely need next week off work to recover before I brave the Tube for my post-op assessment next Friday (10th).
Anyway, Mr P is staying with me today to help me do things and the weekend will see my boobs' first outing (not literally) at a big family gathering in Oxford, with all of Mr P's extended clan.
It's going to be quite a celebration.
It's true I have. Never mind the surgery but all the assessment, review, counselling and nursing consultations have been pretty numerous.
It was quite nice though to see my surgical team again, Gerald Gui and Ana Agusti, who have looked after my case for exactly a year. They also brought another member of the team in pre-op to assess my 'breast volume'.
I thought this was quite funny and asked him, "so doctor, your job is to look at naked breasts and guess what size they are?" He looked a bit embarrassed and then, when Mr P. asked for a business card, the poor bloke didn't know what to say!
It's been a right old 'Carry On' but Mr P and I are pleased with the outcome |
That said, I have received a few texts from people asking how it went, including a very direct one: "Let's see 'em then!" All in good time, ladies, all in good time ... ;-)
I'm still very taped up and sore. The left hand side is particularly painful as I hadn't had surgery there before, but both sides are very tender. I can lift my arms up above my head but can't reach up yet so will definitely need next week off work to recover before I brave the Tube for my post-op assessment next Friday (10th).
Anyway, Mr P is staying with me today to help me do things and the weekend will see my boobs' first outing (not literally) at a big family gathering in Oxford, with all of Mr P's extended clan.
It's going to be quite a celebration.
Thursday 25 April 2013
Positive moves
Three weeks into my new job and I feel like I've been there three months; it's certainly been a baptism of fire!
Given that I hadn't worked (at least, not properly) since January 2012, I was amazed how quickly and easily I jumped straight back into things; writing plans, managing staff and fielding calls from aggressive international media. And that was just my second day!
So while it has been tiring, and stressful, it has also been enormously confidence boosting. I took this new role because I felt I needed a fresh start, an opportunity to reinvigorate myself both personally and professionally. And that's exactly what I got.
For the first time, in many years, I feel like the old Kate. While I loved my old company and all my colleagues, this change was much needed. I had become lazy and complacent and had forgotten how much I could love my work, and be bloody GOOD at it!
Of course, next week I will also have another big change: my new boobs. Finally! After eight months of discomfort and 'tissue expansion', I will have my fourth operation and get my permanent implant. 'Lefty' is going to get a makeover too, or augmentation, so that I get an (almost) matching pair.
And lastly, fertility. The NHS have confirmed funding and I'll be undergoing 'fertility preservation' in the next week or two. There are no guarantees of success, given the changes caused by my chemotherapy treatment but, just to have the opportunity to try, feels a very positive step.
My life is good. :-)
Given that I hadn't worked (at least, not properly) since January 2012, I was amazed how quickly and easily I jumped straight back into things; writing plans, managing staff and fielding calls from aggressive international media. And that was just my second day!
So while it has been tiring, and stressful, it has also been enormously confidence boosting. I took this new role because I felt I needed a fresh start, an opportunity to reinvigorate myself both personally and professionally. And that's exactly what I got.
For the first time, in many years, I feel like the old Kate. While I loved my old company and all my colleagues, this change was much needed. I had become lazy and complacent and had forgotten how much I could love my work, and be bloody GOOD at it!
Next week: A nice new pair |
And lastly, fertility. The NHS have confirmed funding and I'll be undergoing 'fertility preservation' in the next week or two. There are no guarantees of success, given the changes caused by my chemotherapy treatment but, just to have the opportunity to try, feels a very positive step.
My life is good. :-)
Subscribe to:
Posts (Atom)