Saturday, 31 January 2015

The science edition of 100 reasons why I'm thankful I was diagnosed with cancer (Part 4)

It's been a while since I've written one of these! Truth is, I don't think there was a single moment in December when I was thankful I'd been diagnosed with cancer (I think if I'd tried to write this in December the post would have turned in to "100 reasons why I hate everything and really don't give a shit about whether I live or die"). January has been far less miserable, but very busy, what with being all chopped up and stuff.

But I have some things to add to my list now!

As a reminder (to myself more than anyone else) here's what I'd got so far:

1. My friends have been shining so brightly that they dazzle me every day.
2. I've made new friends who I would never have met if it weren't for cancer.
3. Experiencing the feeling you get as a result of random acts of kindness from strangers.
4. I'm learning to trust my own gut feeling.
5. I'm becoming less afraid of "What if?"
6. I've discovered that one person (me) can make a difference.
7. I bounce back a bit quicker.
8. I'm writing.
9. I get to reduce my risk of cancer.

(All my previous reasons to be thankful posts can be found here if you're interested.)

So... some more to add! This lot are all a bit sciencey. I have some non-sciencey ones to add too but I'll write them in a separate post.

10. I know my enemy now
This is linked to number 9 on the list. Before I was diagnosed, because of my family history of cancer, I went through genetic testing to check my BRCA1 and BRCA2 genes for mutations. Nada. I was diagnosed with cancer, and the genetics experts rolled their sleeves up and studied another load of my genes. Worth the time and effort! I have a mutation in my PALB2 gene. I'm the first PALB2 mutant to be found in Leicestershire! And I assume Rutland too! (By the way, it's pronounced Pal Bee 2, in case not knowing that kind of thing bothers you like it does me. The others are Bracka 1 and Bracka 2.) This is good news because knowledge is power. I've been officially informed my PALB2 mutation puts me at high risk of breast cancer (no shit, sherlocks!) but I will almost eliminate the risk of another breast cancer with the preventive surgery I'm having. I've been told it might increase my risk of ovarian cancer (more on that later) but I can have my ovaries out before they try and kill me, eliminating my risk of ovarian cancer too. I've been told it might slightly increase my risk of pancreatic cancer, but that's not certain, and if it does it isn't likely to be by enough for me to need to be worried about. So there are no new immediate implications, but in the future, as more is known about PALB2, myself and my doctors can respond accordingly if ever needed. This gives peace of mind. No longer am I blindfolded and in the dark, fighting an unknown enemy. The blindfold is off, the lights are on, got my armour, got my army.

11. Vindication. Mom, Nanny, May -  it wasn't our fault.
When you get cancer, you wonder why. When you get cancer, other people wonder why. What caused it? What did you do wrong? It's too late for me to apologise to my mom, but if she were still alive, she'd be getting a massive apology from me right now. After she was diagnosed with breast cancer, I judged her way too much. I would lecture her about what she was eating, tell her off if she had a drink, nag her to exercise more. (Yep - me. The one who responded to a cancer diagnosis by sitting on my arse eating and boozing for months on end. Hypocrite.) After I was diagnosed with cancer myself, even though it was clear there must be some sort of increase in risk because of a genetic factor, I still spent a lot of time looking back over my twenties and kicking myself. I drank too much. I ate too much chocolate. I didn't exercise enough. I microwaved things in plastic tubs. I lit too many scented candles. What about that time Nico got fleas and, freaked out by that advert that implies if your dog brings one flea in to the house, within 3 minutes there'll be millions of them breeding all over your bed and on your sofa, I treated the entire house to several cans of something that was clearly cancer in an aerosol can.
Now I know that my cancer, my mom's cancer, my nan's cancer, my great grandmother's cancer were all caused by the pathogenic mutation in our PALB2 gene. It wasn't our fault. It's nice to know that. It's good to finally have an answer.

12. I'm your new PALB2 advocate!
I might be the first PALB2 mutant discovered in Leicester but I won't be the last. And it's not just Leicester. At the moment, there isn't any routine testing for PALB2 mutations on the NHS like there is for BRCA1 and BRCA2 in high risk families. This means that not many PALB2 mutants will have been identified in the UK yet. But my fellow mutants are out there! Somewhere!
I'm nosey, I'm stubborn, and I'm a bit obsessive. I researched and read a lot about hereditary breast and ovarian cancer (HBOC) on the internet and in books, I did a course on cancer and genetics, I repeatedly grilled my genetics consultant. Ultimately I believe this saved my life. The understanding I had developed about HBOC meant that when I got a negative BRCA test result last May, it did not put my mind at ease. I still believed I was at high risk and two months later, when I noticed that subtle wonk in my nipple, I insisted on urgent referral for an ultrasound scan. Thank fuck I did.
Yesterday I went to see my genetics consultant. I enjoyed a smug "I told you so!" and he said it was all quite remarkable. Most people go for genetics counselling, get a negative test result, feel happier, and basically go away. He said he hadn't known what to do with me because I was the opposite - as things proceeded, I became unhappier and more concerned. He was then stunned when I was diagnosed with cancer so soon after that test result. That's (unsurprisingly) never happened before. Turns out this stresshead patient's gut feeling was right. I've gone from being the patient he didn't know what to do with, to the patient who he'd like to speak at some of his events later this year. Apparently I am a modern patient, who communicates and engages in a modern way! He'd like me to share my real life story, the patient's perspective on HBOC/cancer. I'm in! I want as many people as possible to know my story but especially those who have a significant family history of breast and ovarian cancer but no BRCA fault in the family. I want people to know that you can learn a lot yourself, the information is out there if you know where to look (and can get a bit of help at times to translate it). That information can help you to better understand what the experts are telling you and play a more proactive role in your own healthcare. I want people to know that it is important to be aware of the details of your family history of cancer. What happened in the generations before you is relevant to you.
And, in addition to this, over the coming years I will follow research and knowledge about PALB2, translate it in to plain English, and post it on the internet for others. You never know, it might be just what someone else like me is looking for and needs.

13. I get to contribute a little bit to science
Or, more accurately, my DNA and my tumour get to contribute a little bit to science. I understand there's a very clever man in Cambridge itching to get his hands on some of my actual cancer to have it studied. Exciting stuff! He wants to know things like what impact my funky PALB2 had on my BRCA1. I hope someone at Glenfield has kept a bit of my cancer somewhere and is willing to share it.
Also, my family history will now be included in data about PALB2 and I am so glad. At the moment the line is: a PALB2 mutation increases your risk of breast cancer but we aren't sure whether to suggest preventive surgery for that, and we think it might increase your risk of ovarian cancer but we aren't really sure yet if that's worth being worried about. Well, scientists, add my family to the list of PALB2 families where there's ovarian cancer, and where there's early onset breast cancer. I don't have a PhD in cancer genetics, but I am telling you with confidence, the mutation in my PALB2 increased my risk of breast cancer at an early age, and it increases my risk of ovarian cancer. The sooner the scientists have more data like the data from my family, the sooner they will be able to make more accurate estimations of risk, leading to appropriate recommendations for risk reduction in relevant families.

If I had not been diagnosed with cancer, my PALB2 gene would not have been examined, and none of the things in this post would have happened/will happen. I am especially thankful for number 13. This might be the best thing of all to come from my own cancer diagnosis. Even if my cancer comes back and kills me, what the scientists learn from it might contribute to saving the lives of other people in the future. Wow. Just wow. Science = wow.

Saturday, 24 January 2015

Everything I've learned about... Mastectomy with LD Flap reconstruction

12 days ago I had a mastectomy with LD flap reconstruction. I thought it might be useful to others who will be having the same or similar surgery to make a note of some of the information I found out beforehand that was useful to me, and things that I discovered along the way!

The exact details of my surgery
I had a skin sparing mastectomy of my left breast (but lost the nipple - the cancer was right beneath it) and full axillary node clearance, with immediate reconstruction using LD Flap (Latissimus Dorsi) and an expander implant. This post is probably most useful to anyone having a skin sparing mastectomy with immediate LD Flap recon - whether or not you're having lymph nodes removed, and whether or not you are having an expander implant too (and probably whether or not you are keeping your nipple). But many bits of it might be useful to anyone having any kind of mastectomy or breast reconstruction.

Useful things to know in advance!

Don't worry
The first thing to know is, my personal experience of surgery was really good. Far less scary and painful than I imagined! I wrote about surgery and my time in hospital here. Have a read if you are anxious - hopefully it might help to put your mind at rest a bit.

My experience has been it's honestly not that bad. I imagined it to be horrendous. I thought I'd be in agony and unable to move, for at least a week. Not the case! I've been regularly taking painkillers, and they've been doing a great job. In hospital that was paracetamol, ibuprofen and codeine with occasional tramadol, and at home I am taking paracetamol, ibuprofen and occasional tramadol. For the first 16 hours or so after surgery I was hooked up to morphine on an IV - which meant I could get a little hit of morphine whenever I pressed the button they gave me. I say "whenever" - you can press it as much as you like but I think it only lets you actually have some every 5 minutes. I pressed the button 17 times and several of those were in the recovery room in the hour immediately after surgery when they kept encouraging me to! I just didn't really need it. (Partly I think because they give you some local anaesthetics just before you come round from surgery which numbs the area for a number of hours afterwards.)
The kind of pain I have had is mostly soreness. For the first 5 or 6 days a lot of the area under my arm and at the side of my chest was actually quite numb (On day 4 when the nurse removed one of my drains I couldn't even feel her touching my skin). Over the last few days the sensation has been coming back, and with that some additional soreness, but it's nothing terrible.
I had occasions with very sharp and intense pain in my back as a result of my back drain (more on that below) but these were very short, sharp bursts of pain where I think the drain may have been hitting a nerve. Not nice but only lasted a few seconds.

The underneath of the top half of my arm is sore to the touch - I asked my surgeon about it. It's because a main nerve that goes into your arm gets knocked about a bit during surgery (unavoidable). This will heal after time. (My friend Heather who has had this surgery said it lasted about a month. It's nothing unbearable, just a bit sore to touch.)
And then I have had random instances of sharp or shooting kinds of pains, and some aches - but again, nothing unbearable.
Overall, considering the surgery I have had, the pain has been far less than I ever expected it to be. Don't worry about pain!

Oh! PS - this is not pain but a strange feeling. You can feel after about a week like you are carrying a book under your arm. It's a strange feeling and hard to describe but once you get it you'll know what I mean. That's normal - something to do with a rearranged tendon and it goes away in time.

It's early days for me - I'm only day 12 post surgery, so I've only had one brief look at wounds before dressings have been put back on. But what I saw blew my mind! So neat!
Because I needed to lose my nipple, the surgeon cut around the areola and removed that section. So I will have a circular scar there. What he cut out has been replaced with skin from my back (attached underneath to blood vessels under my armpit, to keep it alive. Very clever stuff). It's looking pretty good! The skin from my back almost matches the skin from my front, so I expect a very neat scar, and can have a 3D nipple tattooed in the circle. It will never be quite the same as it was before, but honestly, it's pretty amazing. I've been taking any opportunity to whip it out and show my friends and they're all suitably impressed and amazed!
I also have a line scar in my armpit, around 5cm long I think  - this was needed for the axillary node clearance. If I didn't have lymph nodes removed I'm not sure whether the surgeon would have needed to go in here and whether there would be a scar at all.
And on my back I have a line scar which almost (not quite) follows where the back of my bra goes across my back (where the surgeon went in to access the latissimus dorsi muscle on my back, and where skin was taken to replace the nipple/areola area of my breast). This scar is about 15cm long.
As I said, it all looks incredibly neat. I don't feel upset about the wounds/scars in any way.
I also had 3 drains in (I'll come on to drains next) - one in my armpit, one at the side of my left breast and one in my back (at the side of my back). The tubes for drains are small, but I guess they might leave small scars (maybe like a chicken pox scar).

One thing a lot of people worry about, myself included, is having drains in. It's really not that bad! The drains are bottles that are attached to tubes that go into your body. You're likely to have them in for between 5-7 days. They are held in place by stitches (so you'd really need to tug very hard at them for them to have any chance of coming out). It's not pretty but for the sake of information, here's a photo of two of mine, fluid and all! (Ew!)

Don't worry when you start to see lumps in them too! Gross! But completely normal!

The drains generally didn't cause me any pain or discomfort, apart from sometimes the one in my back would shift a bit and that would HURT! But, I discovered that getting up and moving around fixed it, I guess it would readjust position, and pain would disappear again.

They go everywhere with you (obviously) so you need a bag to carry them in. My hospital provided bags for them. Here's a picture of me (looking very much like a cancer patient which I hate!) with my drain bags - you can't see properly but I needed two bags for three drain bottles.
If you're getting your own bag for your drains I would recommend getting something fairly small but which has a long enough handle that you can put it over your shoulder and across your body ideally. I also found the long handle made it easier to pick up - I could hook it over the side of my bed meaning I didn't need to bend down so much to reach and pick it up - very difficult to do in the first few days. I had to press the button to call for a nurse numerous times just to pass me the handles of my drain bags when they'd dropped to the floor!
Sitting and lying comfortably
You know what? It's not that bad! In hospital I found the hospital bed to be really comfortable. It was all sorts of adjustable, and each day when the bed was remade I seemed to have a different assortment of pillows. But I think the standard number I used was 2-3. The main thing that annoyed me was not being able to sleep on my side for a few days. (Sleeping on my back was fine, it didn't hurt my back wound at all, it's just that I'm normally a side sleeper).
One day I managed to roll on to my right side, but couldn't roll back again. My orange "Help!" button was behind me and I couldn't reach it. The Ward reception desk was right by my room but I was too embarrassed to call out. So I lay there for about an hour til I managed to roll over on to my back, at which point a nurse came in about lunch, and I started to cry, haha! Other than that though, I had no bed/pillow related issues.
Before I went in to hospital I had prepared my bed at home with every kind of pillow and cushioning I could think of. I had a wall of normal pillows at the back, a V pillow in the middle, and cushions to the side. I had been imagining myself needing to be propped very carefully all around by the softest stuff possible. By the time I was back home (day 5) I was lying on my back with my usual one pillow, sometimes venturing on to my right (non-surgery) side with my usual one pillow under my head and a heart cushion under my surgery arm (more on the heart cushion below). It's now 12 days after surgery and I can almost lie on my non surgery side although I'm avoiding it as much as possible. (I just miss it! It's my preferred side to sleep on!)

The heart cushion!
My friend Heather who had LD Flap recon recently gave me this heart cushion. She got it from the hospital where she had her operation. It wedges under your arm (the side you had surgery). I didn't use it in hospital and started to wonder why Heather had needed it - but with hindsight I realise that's because at that point that whole area was still pretty numb. As the feeling started to return, the pain went up a level. The heart cushion is brilliant for wedging under your arm when it's sore - not sure why but it really helps. It's also great for wedging under your arm when you want to lie on your other side - again not sure why but for me it just made it so much more comfortable and took away some pain. (I did a quick check and if you google something like "breast surgery heart cushion" you'll come up with various places selling them.) 

Clothes to wear
For a while after surgery you will have very restricted movement/use of your arm on the side where you had surgery. There are a couple of reasons for this. First of all, initially you just won't be able to move it much! It will be stiff, tight, sore. As that eases off, aside from careful exercises and movements, you shouldn't be using it very much - this is because you need to allow everything to heal and settle inside. That section of the inside of your body has been rearranged! It's held together internally all over the place by stitches. You need to be careful for a while, to allow the tissues to re-knit together in their new homes.
So plan on spending several weeks wearing tops that button up or zip up. You won't be pulling any t-shirts over your head in the early days! Button up PJs/nightshirts, button up shirts/cardigans, zip up hoodies. And possibly vest tops that you can step in to and pull up, rather than put over your head.
You don't need to get anything particularly oversize, as long as clothes aren't skin tight there will be enough room in them for dressings and drains - they really don't add much bulk at all. (I bought several things a size large and didn't need to.)
Hospitals tend to be pretty warm, so try and take pjs/nightshirts that are fairly thin and maybe some short sleeve options, rather than anything of a cosy, fleecy variety. (Especially if, like me, you are still getting chemo-induced hot flushes. I spent half my time in hospital hugging my chillow pillow!)
And don't worry about your clothes getting covered in blood and bodily fluids. I was convinced that with that amount of surgery my clothes would inevitably end up with gross stuff on them, that I'd be leaking and oozing all over the place. Not at all. (Literally, not at all.)
Oh and the big question.... what knickers do you wear for surgery? It probably doesn't matter! Due to the length of surgery they're likely to put a catheter in so you'll either be given paper hospital pants to wear, or whatever you are wearing will be taken off and given back to you after surgery in a little plastic bag! If in doubt, go with plain cotton ones!

I was told to get a non-wired, front fastening sports bra. The only non-wired front fastening sports bras I could find were proper sporty sports bras, high impact, restrictive (not quite gentle enough for immediately after an op). So on advice from the woman in M&S I got a 2 pack non-wired, medium impact sports bra which fastened at the back (with 3 widths) like a normal bra. These have done me just fine. (Image below is of what I bought, not just a random bra model!)

The first couple of days I didn't need to wear it, then the next few days in hospital I had the nurse help with doing it up/undoing it when they needed to do wound checks or I needed to wash. And then when you're home and have drains in you can either get someone to help you with it, or if there's no one to help, just pull it down to wash then pull it back up again - you'll be back in the hospital 2 or 3 days later for wound checks and dressing changes so can get help from a nurse again then. And once your drains are out it's easy to do it up at the front and then twizzle it round.
You have to wear it all the time (ALL the time) for weeks and weeks. To help support all that rearranged tissue while it knits back together in its new home. But the ones I bought have been comfy (I think cos they're non-wired).
Don't be fooled by things labelled "post-surgery bras". They aren't for supporting you immediately after surgery. They're the ones that have pockets for prostheses if you've had a mastectomy and no reconstruction.

You need to keep the wounds and dressings completely dry after surgery, so you can't shower. I'm currently day 12 after my operation and I think the dressings are coming off for good on day 19. I think it's then that I can have a shower. So be prepared to stand in front of a sink and wash with a flannel for 2-3 weeks. I also took baby wipes in to the hospital, although didn't really use them much as I was mobile and well enough to wash in front of the sink in the bathroom. I didn't bother washing my hair when I was in hospital (just kept the headscarf on) but I have been fine washing it in the sink myself since I got home.

Things to take in to hospital

I can't guarantee that I haven't forgotten anything! But here are some of the things I found it useful to have in hospital.

The obvious:
  • Toothbrush and toothpaste
  • Flannel
  • Shower gel/body wash
  • Facewash
  • If you use it, moisturiser
  • Handcream
  • Hairbrush (if you've not lost all your hair to chemo)
  • Knickers
  • If you wear them, glasses and case
  • Any medications you take
  • Phone and charger

The obvious but with notes:
  • Pyjamas or nightshirts. Make sure they are button up so can be put on and easily unbuttoned by nurses who will be doing regular wound checks. Also I'd recommend fairly thin/light material. Hospitals are warm!
  • Something else to wear if you want an alternative to sleepwear, eg button up shirt/t-shirt and a pair of joggers - make sure it's nothing you need to pull over your head.
  • Shampoo (suggest taking dry shampoo instead for the time in hospital)
  • Socks or bed socks (although you might not need them - not only are hospitals warm but you'll have those attractive knee high, white, preventing-DVT socks on too)
  • Slippers (ones you can easily get on your feet without needing to bend down in any way)
  • A book or two to read if you like to read (but no need to take in five like I did - I was sure I'd be bored and going stir crazy in a hospital bed for that many days but most of my time was taken up with sleeping, eating, visitors, observations/wound checks, and washing)
  • Small purse with a small amount of cash (I left my main purse and bank cards at home)

The less obvious:
  • Lip balm (you'll have dry lips after general anaesthetic)
  • Small pack of boiled sweets (you'll have a dry mouth and possibly a bit of a sore throat after general anaesthetic. They really help.)
  • Earphones or headphones (if you plan on listening to your own music or watching TV in the hospital)
  • Earplugs (I didn't need these this time as I had my own room - but if you are going to be in a bay on a Ward apparently they are a must)
  • Eyemask (again, I didn't need it this time as I had my own room so could control the lighting in the room myself, but if you're in a bay on a Ward this will help you sleep)
  • A light bag with long straps for your drains (eg canvas shopping bag. But it might be worth checking first with your hospital if they will give you any specially made drain bags)
  • A compact mirror (handy for if you don't want to get out of bed to go to the bathroom mirror)
  • Chillow pillow (are you getting hot flushes because of chemo? If so and you haven't got one, I recommend! Shop around online. And if you have got one, definitely take it in with you.)

Care in the few weeks after surgery

I live alone so I arranged to have my friends take it in turns to come and stay and help me out. You need help for two main reasons:
  1. In the early days there's a lot you can't do. You're likely to go home with a drain or two attached to you which restricts mobility. And you basically need to rest as much as possible and not use the surgery side arm for anything much at all. No lifting a kettle with it! No opening heavy doors with it! No bending, reaching, or stretching in to awkward positions with it to get things/plug stuff in etc
  2. As you become more mobile and have less pain, you still shouldn't do much with that arm. Your external wounds heal more quickly than your internal wounds. You've had bits of you rearranged internally! Muscle has been moved from the back to the front of your body, it's been stitched up a lot inside, delicate work has been done to attach blood vessels. You need to rest and be gentle to allow all that to heal and for the tissues to knit together in their new homes. Do too much and you risk damaging the very careful work the surgeon has done inside.
This is what I have in place and it's working very well for me!
  • Days 1-5: I was in hospital.
  • Days 6-14: I have had a rota of friends staying with me, doing pretty much everything for me. They're cooking and washing up, sorting out my washing, doing my shopping, hoovering, making me cups of tea, occasionally taking me to the hospital for check ups and so on! I've gushed about my friends lots in this blog already because they are amazing, I already knew that, but there's some of them that I now owe big time! I feel guilty, sitting on my sofa, while someone else does all this for me. But I need to be careful and let the surgery heal. And so far, so good.
  • Days 15-22: I've got friends stopping by around lunchtime and teatime, to do cooking and washing up, and odd jobs like clothes washing. I'll be ok in between times to sort breakfast, make cups of tea etc.
  • After that - I'll see how I am. I expect to be fine with cooking and washing up and clothes washing, I will need to ask for occasional help over the next few weeks with heavier housework (or just not do it).

Beyond Week 2!

An update from me 4 weeks after surgery....
I'm still off work and at home but I can do a lot more for myself now, as long as I'm careful. I'm still avoiding lifting anything heavy - I notice it feels wrong if I try (for example I tried to lift a carrier bag with 12 small tins of dog food in it yesterday - I just put it straight down again as I could feel the strain!). I can cook and wash up as long as I avoid any big or heavy pans.
The dressings all came off after three weeks so I can bath and shower - it feels great! I'm using Sanex Zero as it has no perfume or anything like that. And I'm now covering myself in e45 cream as often as I can where the surgery was - ready for radiotherapy.
I did stop taking painkillers after the first couple of weeks but my surgeon has told me to keep taking them for a while as I'm still sore especially with certain kinds of movement (eg leaning/bending down, walking out and about). And I'm VERY tired! I am sleeping A LOT. I was a bit worried about this ("do I have post cancer fatigue? eurgh that's the last thing I want!") til my surgeon lectured me about how young people are always too impatient with recovery from surgery. He reminded me it's major surgery - my body is used to being fit and healthy, not dealing with such a large amount of healing - the external wounds are the tip of the iceberg, there's a lot of healing taking place inside right now. Plus I had chemo before. He said give myself a break, take the painkillers and rest for some more weeks. He said it won't feel completely "normal" for 4-5 months.
The wounds are now scars and they look great - they've healed really well and are very neat. I'm happy!
I'm still in button up clothes, and I'm still taking up offers of help with shopping, cooking and cleaning from my friends, and I'm resting as much as I can.... but I feel like I'm getting a bit better every day. I hope it continues and I'm back to normal life soon!


If you have any questions please leave a comment below and I will respond as soon as I can

Friday, 23 January 2015

Slice, slice, slice, chop, chop, chop and.... Tadaaaaahhhhh!

Went to see my surgeon Mr Krupa today.

This is the man who gave me my official cancer diagnosis last July but with reassurance that everything was going to be ok. He's the man who operated on me on Monday last week to remove the cancer. And he's the man who gave me my post-surgery pathology results today. Here they are!...

About the cancer

He removed ten lymph nodes and they've been studied by a pathologist (clever lab rat). Only the first two had cancer in. This is brilliant news! It means that the cancer has almost certainly not spread anywhere else in my body. The lymph nodes are in a chain and cancer travels through them in order. It had made it to the first and second but no further than that. Huzzah!

The pathologist also studied the breast tissue that was removed including what was left of the cancer. The cancer had not completed disappeared, but did have a very good response to chemo. Importantly there were at least 10mm margins around all of the cancer. This doesn't sound like much but turns out is excellent. "Clear margins" - ie enough healthy tissue around a tumour that they feel happy all cancer has been removed, are margins of 2mm. So a minimum of 10mm is great.

What all this means is it's no longer definite that I'll be having radiotherapy. They will discuss this next week at the multidisciplinary team meeting - this is the team of people in charge of my treatment (including Mr Krupa, my Breast Care Nurse, my oncologist, the therapeutic radiographer). When I say it is no longer definite that I will be having radiotherapy what I mean is I am definitely having radiotherapy still, because I want full on belt and braces treatment, blast, blast, blast. Mr Krupa told me to keep an open mind but I'd made my feelings clear and I reckon he's got my back in the MDT meeting next week.

About the recovery from surgery

All going well peeps! Wounds have been healing spectacularly, and Mr Krupa is a perfectionist meaning that everything he's done is really, really neat. The scars are going to be so thin and tiny. I'm so impressed! Worth those 8 hours under general anaesthetic. The only thing is I have a seroma on my back (this was almost certainly going to happen). It's a load of fluid under the skin by my back wound. I couldn't even tell, I've not had any issues, but according to my friend Lucy I have a patch of my back which is swollen and wobbles like jelly/a hot water bottle. If it doesn't go down they may need to stick a needle in my back next week and let it ooze out. Lush. I'll make sure to get a photo for the blog if that happens.

I now just have to stay at home for at least 4 weeks being really bloody careful and keeping out of trouble. Luckily for me, trouble includes things like cooking and washing up. As well as the outside wounds that I have from surgery, there's a lot going on inside - I've had muscles and tendons and blood vessels rearranged and stitched up internally. I need to allow all those internal wounds to heal properly. Do too much now, things come apart inside, and I will upset Mr Krupa (and have to go back in to surgery) and that's the last thing I want to do. So I sit on my arse for a bit longer while my friends run round for me on demand. Nice!

And then what?

Radiotherapy. (There WILL be radiotherapy!). Preventive surgery (breast cancer ) by removing and reconstructing the other breast. Preventive surgery (ovarian cancer) by removing ovaries. Starting on drugs, hopefully tamoxifen, to reduce risk of recurrence of this cancer (for 5-10 years). Going back to the Genetics Clinic to discuss my exciting new Mutant status and whether that needs any further action. Recovering from everything that's happened to date. There's still a lot to be done. But.... it doesn't quite seem so scary any more at least.

What have we learned from this, kids?

The NHS is incredible, it saves lives, and it does it in the most wonderful way. I cannot speak highly enough about the care I have received to date. Simple as that. Don't vote Tory :-) 

Lots of love!
Sarah xx

Here is me outside the hospital today. I wanted to jump up and down with my arms in the air. Unfortunately I'm not allowed to jump up and down and I can't get my left arm in the air. So this had to do!

Tuesday, 20 January 2015

Updated with responses from Jodie Marsh: This woman with breast cancer has a few things to say about Page 3

Yesterday was supposedly #BlueMonday - the most miserable day of the year. But it wasn't a Blue Monday for me. I went for a check up at my hospital, following breast surgery on Monday last week.

My left breast has cancer and it had to go, so following a gruelling 18 weeks of chemotherapy, on Monday last week I had a skin sparing mastectomy, and reconstruction using muscle from my back (Latissimus Dorsi) and an expander implant. I was under general anaesthetic for 8 hours, and in hospital for 4 nights.

Yesterday's hospital appointment was to check my wounds, replace my dressings and remove the drains coming out of my breast and back. Healing and recovery all appears to be going very well so far, and I was over the moon.

Then last night the news hit that The Sun appears to have made a decision to axe the use of topless models on Page 3. Those of you that know me know that I am a strong supporter of the No More Page 3 campaign and have previously written an Open Letter to The Sun (the perspective of a 33 year old woman with breast cancer on the use of topless Page 3 models for the #CheckEmTuesday campaign) as well as some follow ups (they can all be found here if you're interested.) So I was even more over the moon when I heard this news. There'll still be women in just bras and knickers on Page 3 so it's not job done for the campaign, but it is a significant milestone step.

So I tweeted a happy tweet!

It got retweeted a bunch of times, including by @NoMorePage3 and so I got the inevitable stream of tweets/Facebook comments from, putting it nicely, idiots. ("Get a life", "Oi, get ya baps out", "You'd look better topless. Just saying", followed by a retweet with the addition "You wouldn't.") Someone called Megan was so mean to me that her tweet was removed and her account temporarily suspended by Twitter (her account is now back but protected so only followers can see tweets). I never saw whatever it was she put to get reported and suspended but I guess it wasn't very nice! For the record, I don't care. I genuinely don't care what people on the internet who don't know me, but who will campaign for Page 3, say to me. I've got bigger things to worry about - I have cancer!

Anyway, today there's obviously loads of discussion about Page 3. I wanted to make some points from my own perspective. This doesn't cover anywhere near everything there is to be said about Page 3/No More Page 3 - it's just some observations from a 33 year old woman with breast cancer, who had a mastectomy and reconstruction a week ago, and who, to prevent future risk of cancer will be having the other, "non-cancer" ,breast removed later this year once cancer treatment has finished.

I'm not jealous or insecure
First of all, I'm not jealous of other women's breasts. Speak out against the sexualisation and objectification of women in the media and you are quickly labelled things like "whiny, jealous bint." Today Jodie Marsh, who is speaking out against the No More Page 3 campaign, is saying women who have been campaigning against Page 3 are jealous and insecure.

(By the way, the campaign isn't trying to ban anything.)

No, I'm not jealous, or insecure. The only strong feeling I have about my own breasts right now is the desire to stop them from killing me. That's why I'm happy for a surgeon to take a knife to them. Clearly Jodie loves her breasts, and has a lot of money and a career because of them, but I'd hazard a guess that if she was diagnosed with breast cancer herself (and I obviously hope she never has to go through that), that given the choice between life and death, she'd have hers lopped off too. No, for me this isn't about jealousy or insecurity. It's about physical, as well as mental health...

What matters about breasts is that they are healthy
Remember this from the Sun last year?

The Sun tried to tell us that "Scientists say the perfect boob is all to do with the "nipple meridian" - the amount of breast above and below the areola"

Erm, no. The "perfect boob" is one that is healthy. Take it from me, that's all there is to it. If you haven't got breast cancer then you've got perfect boobs.

Topless Page 3 images have a negative impact on women's self esteem and mental health, which in turn can have a negative impact on physical health
This is true in lots of ways. I am going to address one in particular here. When I wrote my original open letter to The Sun, I was contacted by women who thanked me for speaking out, because years and years of Page 3 images in The Sun had made them feel that insecure about their own bodies that they had either delayed or avoided going to see a doctor about a concern such as a lump, due to embarrassment about removing their clothes to be examined by a male doctor. Or, they had found going to a doctor to have breasts examined an embarrassing, uncomfortable or even traumatic experience. As in the example above, The Sun is telling women on a daily basis that their breasts and bodies should be a certain way (based entirely on how they look) and if they aren't then there is something wrong with them.

Using topless Page 3 models for a breast cancer awareness campaign was unnecessary
The Sun tried to use breast cancer awareness to justify the use of topless Page 3 models. I asked numerous times, why can't The Sun raise awareness of breast cancer without topless models (like all the major charities and our own NHS do), and despite receiving a response from their Head of PR, Dylan Sharpe, I never actually got an answer. Because there is no answer. You don't need photos of glamour models to raise awareness of breast cancer.

Page 3 could be used for better things
At the moment it seems that topless images on Page 3 are being replaced with images of women in bras and knickers (which kind of defeats the argument that now that Page 3 doesn't have topless models, women have lost jobs. Surely not? Surely for now they'll be doing the same job but just with a bra on?). From my point of view this is still unacceptable. It is still just using the most important page of the newspaper (Dylan Sharpe himself told me it was the most important page of any newspaper) to objectify women. If The Sun really wants to make a change, why not use Page 3 to focus positive things, to celebrate women for a wide range of achievements, to promote better health, to inspire, to campaign (for example, Jodie Marsh herself speaks out about issues like Female Genital Mutilation - wouldn't it be great if things like this were getting the publicity they need on Page 3 rather than young women in their underwear, there for no other reason than to look "attractive" (I put that in ""s as it's a very narrow definition of attractive that Page 3 represents. Young, slim, large breasts, usually white.)

Anyway, there is so much more to be said about Page 3, but I will leave it here for now myself, as I just wanted to make a few key points about health.

Update 21st January 2015

I tweeted a link to this post to Jodie Marsh to ask her what her thoughts were. I got some replies. Here's a copy of the tweets in our conversation and also with my friend Louise.

I honestly don't know if Jodie avoids questions / points (not just mine, but other people's too, as well as the basics of the No More Page 3 campaign) or whether she doesn't understand them. But anyway, here you go....

Monday, 19 January 2015

Surgery, Ward 23a, Guardian Angels, and Disgusting Drains


After just 4 nights in hospital I'm back home. Here's what I've been up to over the last week. It's a long post! I've done a blow by blow account  of anything I can remember- mostly for the benefit of anyone who might be having the same surgery as me and wonders what it'll be like.

(The surgery I have had is skin sparing mastectomy with LD Flap reconstruction, plus expander implant, and axillary node clearance.)

Monday morning at 7am I turned up to my ward at the hospital and got checked in to my room. Yep, I was really chuffed to have my own room with ensuite bathroom for my first ever hospital stay. To be honest I'd say my room was nicer than any Travelodge/Ibis/Premier Inn I've ever stayed in. I could make the bed go up and down and stuff with the press of a button, and with the press of another button I had someone arrive immediately to do anything I asked! The bed was comfy and the little wheely adjustable table next to it is a lazy person's dream.

I was bricking it though! At about 7.30 the nurse came round with some paperwork and I asked if she knew what time I'd be going down for surgery. 8.15! I was my surgeon's only patient that day. No real time to get too anxious then. (Or upset about the "Nil by mouth" thing and lack of morning cup of tea.)

Next in was the anaesthetist who was a fully fledged scaremongering arsehole of the highest order. His opening question, with a scowl, was "You do understand that this is major surgery you're having don't you?"
"Erm, yes."
"This isn't to be taken lightly and I need to be sure that you understand that it's Very Major Surgery that you're having."
"Erm, yes. But I've got cancer, so I don't really have a choice!"
"Well you do have a choice. You could just have a mastectomy which would only mean 2-3 hours under general anaesthetic. Not many women have the LD Flap. That's going to be 6, 7 even 8 hours of anaesthetic which increases morbidity. This is a long and major surgery."
"Erm, well, yes, that's the surgery I'm having."
"Ok, well then I will need to insert an arterial line in order to monitor your heart beat by beat because of the risks associated with being under anaesthetic for so long."
etc etc etc.
Miserable git.

Next in was my awesome surgeon, all smiles. "How are you? Are you ready?!"
"The anaesthetist was just in here going on about morbidity!" I look him dead in the eye and get lots of reassurance to not worry, everything is fine, it's going to be ace.

(I remembered the message I got from my friend Lianne the night before:
"I'm going to break from the pack here, and instead of wishing you luck (as you clearly have plenty already bestowed by all these lovely wishes) I'm going to wish the surgeon luck. I'm going to wish that tomorrow he has one of those awesome days at work where you're so damn good at what you do that you feel like a rockstar. I wish for him to get a good night's sleep tonight so he'll be sharp as a razor tomorrow and for everything to go perfectly during the surgery so that by the time he's done, you'll be good as new. I'm sure you're in very capable hands and are as well prepared as anyone can be....")

I then stood in my knickers in front of him, a registrar and my friend, while he drew all over me in marker pen. Measuring, drawing, taking photos. Measuring, drawing, more drawing, more drawing, photos. Reassurance that everywhere he was drawing was not everywhere he was slicing. More drawing, more photos. Any questions? Yes, how long will the surgery take? About 6 hours, but no rush, there are no other patients and he will take his time as much as he needs. Any more questions? No. Big smile, shake of my hand, see you in there!

I then had to get in the bed and was wheeled through the hospital to the little room before theatre. The one where you get knocked out. The anaesthetist stuck a cannula in me, which promptly burst the vein. Yeah, fuck you anaesthetist, my chemo-wrecked vein doesn't like you either! Another cannula stuck in which seemed ok, and on went the oxygen mask, and in went the drugs. Think of something nice. Oh shit, I can't think of anything nice! Didn't matter, I was gone.

Woke up in the recovery room (a big room with space for about 6-8 beds, where they monitor you for a while immediately after surgery). The anaesthetist walks by and smugly (definitely smug) tells me I was in surgery for 8 hours. Because of the anaesthetic induced grogginess I couldn't answer back, but I figured who cares, he kept me asleep for the scary bits and kept me alive. He did his job! My surgeon stopped by to tell me he'd had one of those awesome days at work where you're so damn good at what you do that you feel like a rock star (or words to that effect). All had gone well and he'd done everything he said he would. I was refusing the morphine at that point and he told me to not try and be brave about pain, just press the magic button as much as I needed. He left and all the women in the recovery room spent a good 10 minutes gushing about how lovely he is. I was still too groggy from the anaesthetic to join in, but I agreed wholeheartedly!

Then back to my room! I had my two friends Rachel and Marta visiting that evening, and was sat up, chatting to them, drinking tea and eating biscuits. I felt ok! I was hooked up to a lot of things though. I had a catheter in, (another lazy person's dream! Wish I could have one for at home haha!) I had 3 drains attached to me (draining the gunk from my 3 wound sites - armpit, breast and back). I had oxygen (the little pipes that stick up your nose rather than a full mask). Each of my calves had a kind of sleeve thing round them, attached to a machine which inflated and deflated them (like the sleeve used for checking blood pressure). That was to reduce my risk of blood clot as there's a history of them in my family too. I had the blood pressure/heart monitor things on, and the cannula in, attached to fluids and morphine for if I pressed the button. I noticed from the stab wounds and bruising on my arm that another couple of veins must have burst from cannulas. Chemo! It wrecks them!

Overnight, I was monitored every half an hour or so. Blood pressure, heart rate, breathing, fluid in drains, wound sites, etc, by a fantastic nurse called Isabel. As far as I'm concerned she is an angel from heaven. It's a weird feeling, being on your own in hospital after surgery (major surgery remember), hooked up to all those machines, realising you are very vulnerable and entirely dependent on care from others. But I felt so safe and looked after. Maybe it was a bit of the morphine as well, but I felt very happy and well, and will always remember Isabel as my angel that night!

First thing in the morning the ward doctor does his rounds with his minions. They checked my wounds. Fine. They checked how I felt. Fine. They checked how much of the morphine I'd had. Barely any. So they took it off me! Dammit! I did not make the most of that at all! Catheter out (doesn't hurt), oxygen removed, leg squeezy machine thing disconnected, and help from a nurse to get to the bathroom and get washed and into my own pjs. I had visits in the day from my friends, and my amazing surgeon Mr Krupa. When Mr Krupa was there I went dizzy and nearly fainted and had to lie down. That was because of the anaesthetic I'm sure, not because I was swooning. The nurses were blown away by how lively I was. But then that evening when Marta visited, I went dizzy again, and had to lie down. I promptly fell asleep and pretty much stayed that way until gone 3pm the next day, aside from when wonderful Isabel would come in through the night to do my observations.

(Me, totally hamming up my Cancer Patient status, with headscarf,
Generic Cancer Face, and drains in bag)

Mostly asleep! Then my friends Helen and Lisa visited in the evening. Helen escorted me for a walk round the hospital so I could find one of the machines to buy a card to watch the TV in my room. (Rip off! £10 for 24 hours TV! Although I did watch Bridesmaids in bed that night with a packet of crisps and some chocolate which I thoroughly enjoyed). Throughout the night Isabel kept an eye on me. Lovely, lovely Isabel, making sure I'm alive and my wounds aren't oozing throughout the night!

Woken up in the morning with a visit from my best surgeon Mr Krupa! He gave the go ahead for the big microfoam stuff covering my dressings to be removed. This was done by another amazing nurse called Helen later on. (She was my daytime guardian angel/supplier of drugs!) I was blown away. Underneath all that padded microfoam stuff were the tiniest dressings! I've had (major!) surgery to my breast, armpit and back and I've basically got a few plasters on haha! The stitches are under dressings at the mo but I can now see the space where my nipple once was, replaced by skin from my back, which is alive and well thanks to being attached to blood vessels under my arm. What Mr Krupa has done is bloody incredible. It's insane.
I was visited by a hospital volunteer who gave me hand and arm massages! And in the evening I had visits from my friends Emily, Charlotte and Kate. I took great pleasure in showing off my new, nippleless boob and the gunk in my drains, and we had to keep my door shut tight so as not to disturb the rest of the Ward with our endless roaring of laughter.
And that was my last night being looked after by Isabel (not that she needed to do much more than a few observations and bring me some painkillers in the night) because....

I was sent home! Mr Krupa visited me first thing in the morning and said I could go home, and that before I did I could have the drain from under my arm removed (not painful). So armed with an enormous carrier bag of various painkillers, antibiotics and things like that, but with only two drains I left the ward.

(My drains... Ewwww!)

I really didn't expect this but I was sad to leave the hospital. I'd had such a nice stay there, I was so well looked after, by the most incredible team of doctors and nurses (not just Mr Krupa, Helen and Isabel! Everyone was amazing.) I could have happily stayed another week. It's really nice to have had such a great experience. Before this I had been hating hospitals with a passion for a long time, associating them with death, chemo and misery.

So that's it! The major surgery and hospital stay - done! I'll be back lots over the next few weeks for wound checks, dressing changes, drain removals etc. But the scary bit, which turned out to not be scary at all, is all done.

Sunday, 11 January 2015

The night before surgery



This is it. The night before surgery. It's fair to say one is shitting one's pants.

There's a bunch of stuff I want to say here before I let them at me with the knife....

Thank you NHS!
First of all, in advance, and for the record, a massive thank you to the NHS and its wonderful staff who will be looking after me over the next week. Throughout all of my cancer treatment to date I have had nothing but good experiences of the NHS. My life is being saved, and not only that but I am being treated by all NHS staff involved with so much care, kindness, compassion and reassurance. I'm so, so grateful. I've heard only great things about the staff on the ward who will be taking care of me after surgery - I will probably be in hospital for 5 or 6 nights. It makes me feel much less anxious about what is about to be my first ever stay in hospital. The man who gave me my official cancer diagnosis almost 6 months ago is the man who'll be doing my surgery tomorrow and I trust him 100% - to get rid of the cancer, to get rid of the bits at risk of cancer, and to fix me up again real nice! 

I'm lucky to be living in the UK where I have access to such fantastic doctors and treatments through our life saving National Health Service. The way the Tories are systematically dismantling it both breaks my heart and makes me very angry. I hope they don't win the election in May because if they do, within the next 5 years the NHS I, and you, know and depend on will be gone forever. (Peeps, please use your vote in May and use it wisely.)

Thank you to my friends
A massive thank you again to my wonderful friends. I've been made to feel very special this week. Thank you for the messages, the cards and flowers, the food and drinks. A special thank you to Rosie and Amy for the incredibly thoughtful surgery/hospital/recovery survival packs they put together for me. I'm really touched!

Thank you in advance to the team of my friends who are looking after me after surgery. Charlotte, Emily, Helen, Lucy, Marta, Rachel. Again, it makes me feel so much less anxious about all of this knowing you'll be around! And thank you to Glen who will be taking care of Bonnie while I've got dog-unfriendly drains hanging out of me, just waiting to leak disgusting bodily fluids all over the place.

Thank you to my fellow YBCN superwomen
It's thanks to all of you that I will be turning up to the hospital knowing what to expect and being prepared. I'll have the right knickers, and the right bras! I'm ready for the sauna of a side room they're putting me in and have appropriate things to wear to keep the sweating-like-a-pig to a minimum. I've got custard creams and squash, earplugs and an eye mask, a bag for my drains and some dry shampoo. Packing my bag made me feel like I was going on a very strange holiday! It's nice to know that I've got the right stuff, based on your experience and wisdom.

It's a bit exciting!
I feel like getting tomorrow done is another massive milestone. Cancer treatment is a long slog. I like to think chemo is the worst (cos that's the bit I've done) and that this first surgery is the second worst (cos that's the next bit that's about to be done). After that there is still 3 weeks of radiotherapy (but my ''cancer friends" who've done it already assure me that's a piece of piss), and then later this year I'll be having more surgery (preventive - lob off t'other boob and replace it with a nice, safe, cancer-risk-free implant) and more surgery (chop out those evil ovaries). But those surgeries in theory are much nicer and easier than the one I'm having tomorrow. (Did I share the gory details of that already? I can't remember. If you don't like weird/gross stuff don't read this next bit. My surgeon is scooping out all the tissue under the skin of my cancery boob and then taking some muscle from my back and swinging it round to my front to replace the tissue removed. Then he's taking out 20-30 of the lymph nodes under my arm. Clever stuff.)  I'll also be on some sort of drugs for the next ten years to hopefullyfingerscrossedtouchwood stop the cancer returning.

Sooooo.... there's still a bunch of stuff to go. BUT! It's a bit exciting now because once I am recovered from this surgery I can get some semblance of normality back. I can go back to work! In the office! Genuinely excited! I can start running again and finally join the running club. I can go back to my book group (I love what the organiser said to me in an email the other day about me going back as soon as I'm well because "we need all the verbal contributors we can get. It's no fun arguing with myself." Haha! I do enjoy the arguments.) And so on, and so on. No more waiting for Week 3. Every week can be a Week 3. CAN'T WAIT.

Wish me luck!
So, this is it! See you on the other side peeps.


Friday, 9 January 2015

Being human

The human body - a summary!

Please stop for a moment and think about this....

Most of the time you probably think of yourself as the person you are - your name, your background, your personality, your interests, your loves, your fears, the things you do. Containing all of that in one package is your human body. Most of the time you take most of what your human body does for granted. You have no real idea about all of the things that are going on in your body at any given moment that keep you alive and functioning.

The instruction manual for your human body is your genome. Your genome is made of 3 billion DNA "base pairs" - or, 4 letter chemical codes. Around 3% of these chemical codes spell out genes. You have around 24,000 genes. Scientists are learning lots about what these different genes each do to make your human body live and function. (And from what I can tell they have not yet worked out what on earth the other 97% of your 3 billion chemical codes are doing.)

When I stop and actually think about these numbers, I realise how incredible the letter I got in the post yesterday from Leicester's Department of Clinical Genetics really is.

Dear Sarah, ...

"...As you are aware we have carried out further tests into the cause of your breast cancer and your wider family history of breast and ovarian cancer. We have now received the results which has identified a significant alteration in the PALB2 gene...."

This is BONKERS! To try and find the cause of my breast cancer (and the breast and ovarian cancers in my family), clever scientists out there have been scrutinising 97 of my genes that are considered to be relevant to breast cancer risk. And they've found it, in the gene called PALB2.

Just to put this in to perspective again...

In amongst the 3 billion DNA base pairs that make up my genome, based on previous studies and research, scientists identified 97 sets of DNA base pairs (genes) to look at. One of them was the PALB2 gene which itself is made up of 38,195 base pairs of DNA (ie, 38,195 pairs of 4 letter chemical codes). That's where they found the error that caused me to have breast cancer at age 33. Think of it as going in to the British Library, being told that somewhere in one of the books is a typo, and that you have to try and find it. You're given a few clues to narrow down which sections it would be best to search in although no guarantees they are the right sections. Needle. Haystack.


So, what's wrong with me?!

Lots, haha! But focussing on the genetics... We already knew there was something genetically wrong with me that increased my risk of breast and ovarian cancer. The family history plus my own diagnosis at such a young age made that obvious. What's changed is that they now know exactly what kind of defective mutant I am, and from what I can tell, this is good news. Knowledge is power.

Your body is made up of trillions of cells, and all sort of things go wrong with many of those cells every day. Certain genes, like PALB2, play a part in spotting when that happens and fixing it, preventing a cancerous tumour from developing. (A cancerous tumour starts with one single cell that is faulty. A cell that should have, for example, been the cell of a milk duct, becomes an out of control monster, no longer concerned with it's job of being a milk duct cell, but only with dividing and multiplying in to new monster cells, that divide and multiply in to new monster cells and so on and so on, taking over the space in your body and preventing other cells from doing their own jobs of keeping you alive and functioning well).

So, one of my genes, PALB2, is not doing it's job properly. One day, somewhere in my body, one single cell got all messed up, and became faulty. Instead of being spotted and then repaired or killed off, it was ignored or got missed, and was able to divide in to two new messed up cells. Those two new messed up cells each divided in to two more new messed up cells, and so it went on until there were enough messed up cells there to form a tumour.

What now?

The error in my PALB2 gene caused my breast cancer. That error in that gene is still there in all the cells in my body, and could cause another, new breast cancer and possibly an ovarian cancer too in the future. So I go on ahead as planned with preventive surgeries, knowing that this is the absolute right move. To put it bluntly, my surgeon is removing all breast tissue from my body and reconstructing with muscle from my back, and implants. Fake boobs, but ones that won't be on a mission to kill me. And the ovaries will be chopped out soon too. It doesn't mean I am completely risk free - it's not possible for the surgeon to guarantee every breast cell has been removed, but my risk of a new breast cancer or ovarian cancer will be very low, and lower than the population risk (ie the risk of any random woman in the population who has no family history or genetic error).

Medically, other than that I'm not yet sure - I need appointments with the Genetics Clinic, my oncologist etc. But this information might help them to give me better targeted drugs to reduce the risk of recurrence of the cancer I already had, and I wouldn't be surprised if I am asked to be included in various genetics studies and things.

But there is another thing.... I KNEW there was something genetically wrong in my family and I KNEW it wasn't BRCA1 or BRCA2 but I KNEW I was at high risk. I bloody knew it, and I was right. (I always am. Sometimes people think I am not right, but I am always proven right in the end my friends, always. True.) I know lots and lots of young women in a similar position to me - breast cancer diagnoses but no BRCA fault. No BRCA fault is not necessarily good news  and does not necessarily mean a cancer was "just one of those random things" - you can still be at high risk from a fault in another gene such as PALB2 and I am living proof of that. I intend to advocate for women and families at risk of hereditary breast and ovarian cancer (HBOC) where no BRCA fault has been identified. I am going to advocate for these women to have access to increased surveillance, and preventive options such as surgery. It can mean the difference between life and death.

I would love to hear from you if:
  • If you have a PALB2 mutation too! I don't know anyone else with one yet!
  • If you have a strong family history of breast and ovarian cancer but, after genetic testing, have no BRCA1, BRCA2 (or other such as P53, CHEK2) mutation identifiable in your family.
My own cancer treatment is my priority for now, but as soon as I can I will be collating information about PALB2 and translating it in to plain English, for myself and for anyone else who'd find it useful.

And tonight I am going out with a friend and I am going to have a drink and make a toast to SCIENCE!

Incredible. Just incredible.