Encore Performances

Possible vaccine for breast cancer found by Cleveland Clinic doctor

My nipples. Yes, both of them.

No I haven’t had them reconstructed, but try telling my brain that they ever disappeared into the little dish for the pathologist.

Dr D has explained the concept of ‘phantom nipple pain’, to be much like amputees who’ve lost a finger/hand/arm/foot/leg etc.

Immediately after the mastectomies my brain was absolutely certain my left nipple was still there. I experienced an intense, red hot poker kind of pain, very specific to where my nipple used to be. Even after the explanation that the nerves (angry at being cut) were still registering pain and my brain just wasn’t processing it all yet – I still had to peek inside my top to get a visual. Yep – gone! Definitely not there!

As my family will attest – these little episodes left me in stitches (okay bad pun, even after the stitches had dissolved I was still laughing!) at the strange sensation. It was only the left one though, never the right.

Until now. For some unknown reason, my right nipple (well, as far as my brain is concerned) has decided to make a comeback after this last surgery.

Weird. But funny.

We all know there are a multitude of research projects underway in laboratories around the world – ultimately a vaccine and cure for breast cancer is what many of them are aiming to achieve.

Just for a second – can you imagine the impact? HUGE.

Researchers must have reached some significant milestones before the media is interested in reporting on their work and there’s a lot of hype surrounding some work being done in the US.

An American team has spent the past eight years working on a potential vaccine for breast cancer and are documenting promising results in tests on animals. The next step is human trials.

While Doctors here are warning caution – that there’s years more research to be done and a long way to go before this could become common medical practice, it’s still something to hold out hope for.

I’ll post some links you may be interested in checking out.

I’ve just had my second follow-up appointment since the last op 12 days ago.

Andrea ever-so-professionally changed the dressings as we waited for Dr D to arrive.

I haven’t mentioned this on the blog yet as I’ve been trying to ignore it, but there’s a bit of rippling at the top of my left side, towards the centre. To me, it’s obvious. Today – it was to Dr D as well.

Again, he was visibly disappointed and admitted to being so. I am a bit too, but know now that’s he’s done everything he can to get these ‘boobs’ looking as good as possible. While there’s nothing that can be done surgically, he suggested that if it’s still obvious in a year or so I might consider going to see a Plastic Surgeon to talk about having some sort of filler injected.

We reasoned that this surgery was still worth it though – he’s achieved two of the main objectives; positioning the implants in closer thus giving me a bit of my body shape (as far as my torso goes) back, and making that big line across the top of my left side less visible.

So, after discussing pain relief, wound dressings, the big bra, driving, swimming etc. it came time to set the next appointment. I won’t go back for 3-6 months.

Heading back out into the world again (and slipping past a waiting room full of patients), my attempts to say thank you for all of his efforts and the girls for theirs just didn’t seem enough!

Definitely a few bottles of red owed I think.

People are often surprised at some of the basic things I’ve found difficult after each surgery, so I thought I’d list some for you.

For this op and the last reconstruction, the restriction of movement is definitely top of the list as far as frustration goes – one wrong move and my chest is burning with nerve pain as I try to hold back tears that seem to come from nowhere. It really stops me in my tracks.

Some of the other things are so simple they’re kinda funny;

• holding the phone up to my ear for more than a few minutes – amazing how quickly my (big strong) muscles tire,
• grabbing something from the fridge/pantry (& even soap/shampoo in the shower) – the essentials all have to be at waist-shoulder height (needless to say any chocolate etc. has been safely stored where I can’t reach it!),
• showering – making sure soap gets to all the right places can be tricky (ohh – & shampooing my hair resembles some sort of contortion act as a bring my head down to hand-height!),
• drying myself – getting a towel around my back (especially if it’s already wet and heavy) – not easy,
• sitting up straight for long periods of time – after a while the blood pumping to my chest region (particularly around the new scars) really starts to hurt in a way similar to one of those throbbing headaches,
• getting in to & out of the car – pushing and pulling of any nature, especially your full body weight, is out of the question.
• getting in to & out of bed – same as above, blood rushes and no twisting around or pushing/pulling to prop yourself up or help in any way,
• cutting up dinner – steak (no matter how tender) is off the menu for a while!
• lifting a full kettle of water – when anyone drops in for a cuppa it’s not BYO, but pour-your-own,
• this only applies to the first fortnight after surgery, but those compression stockings are bloody hard to get on at the best of times, let alone when you can’t reach forward very far and are a bit weak. Not having to wear these will mean I can have a bit of independence back, but for now I have to ask for help before and after (& okay sometimes during) every shower. Uurgh.
• Clothing – it has to button up down the front, or be something (like pants/a singlet top) that I can step into.

In short – when Dr D says ‘you should be right with everything straight in front of you’, he’s right.

It’s still early and I know from past experience that these things become less of an issue with each day. Thank goodness! ‘Patience & Tolerance!’

I’m not really -but you know the Matchbox 20 song!

I just can’t sleep – equal parts pain and nausea. I can’t think what’s making me feel sick, other than the pain. Vicious cycle huh?

So – seeing as it’s 10 days now since my last op, the heavy duty pain relief has ceased. I’ve come downstairs popped two Panadol and two ginger tablets to try and settle my stomach. With a chest full of stitches, the last thing I wanna be doing is vomiting. Come to think of it – coughing and sneezing are also pretty high on that list, so keeping warm is also a priority.

That’s a saying I heard repeatedly as a child and one my Mum actually hasn’t had to use all that much during my little ride.

Almost by default (you know – having to endure a range of procedures which often involve long, sometimes painful waiting periods), I’ve become a lot more patient in certain circumstances. Like when Paul’s driving and we get a red light now, I just shrug my shoulders as steam blows out his ears. I just don’t care, it’s no big deal. (Truth be told I’ve actually found his impatience stresses me out more than the situation.) Another example is when Mum’s had a bad day and the issues come spewing out of her mouth as she walks in the door. Although irritating, fortunately none of them are overly life-altering. So again – I just shrug my shoulders. Not being rude – but those little things, just don’t matter in the big scheme of things.

As far as my tolerance goes, well it has changed too. To put it bluntly – I’m far less tolerant of things that don’t work for me. If a shop assistant is rude, or say we go to eat somewhere and I don’t love the look of something on the menu – I just walk. No offence intended, I just make that decision and act on it, rather than being polite and staying because I feel obliged to. It’s just – bye! On a positive – I’m far more tolerant of people whose individual situation might dictate their behaviour. I’ve found myself stopping to really listen and give consideration to what the reasons behind certain actions may be.

This experience has most definitely brought to light some different examples of patience and tolerance.

Seems I got a bit excited. The bra was yet to come.

Later that evening Dr D popped in to check on things (looking like he could do with a very strong coffee to get through the final surgery he had to perform for the day..I mean that in the nicest possible way of course!). He seemed surprised that I’d been up and showered and sternly instructed the nurse to ensure the waterproof dressing was put in place asap (oops..).

He put some big strips of supportive tape along the outside edge of my right breast, pulling things into the centre rather firmly. As Dr D flew back to the operating theatre, the nurse taped up the other side and helped me get into the zip & buckle up bra.

It was getting late. I was left with my oxygen, push button pain relief and a flimsy curtain separating me from my not-so-well-mannered neighbour who moaned throughout the night. Ohh – she also felt it necessary to make demands on the nurses each time they popped in for the two-hourly obs ‘get me morphine’ she bellowed….. It was a long, looong night.

Yep, next week will be round five.
Explaining this could be rather detailed – but in short, these implants are coming out and new ones are going in. In fact, the consent form says ‘remove and replace implants’.
I’ve been in two minds about this for a while now. As you may recall my ‘adjustment’ to this new body hasn’t been as smooth as I would like. Not long after the reconstruction Dr D cottoned on to this and said we could go back in and try and refine things. I very quickly snapped no, that I’d had enough surgery and I just needed to let my head catch up with what the body has been through. I’m almost ashamed to admit that unfortunately (not for a lack of trying), that hasn’t happened over the past few months.

A recent appointment brought the issues to the surface. Try as I might to just suck it up and well, not love – but just feel good about things, I couldn’t. Don’t get me wrong – I’m incredibly grateful to be here and on most days view my scars almost as kind of battle wounds, that through them – I’ve been given the best chance at a long and healthy future. It’s actually not the scars. The position, shape, ripples, distortion and an unsightly divet of my new ‘breast mounds’ are taking some getting used to. (This all sounds so much worse than it is!) Most of the time I’m okay, but occasionally it all is too much. The disbelief I feel is enormous.

I’d been keeping my mouth shut, so as not to offend Dr D. This was his work – he’s worked so hard to re-build me and here I was not handling the end result. How dare I? What an ungrateful sod.

He’s most perceptive and as I removed my gown he started with ‘we can do this, this and this….’ I was so relieved, I got a bit emotional and nearly cried (after all of this – it’s the first time I’d come close and I didn’t want him or Andrea to see me cry!). In a very business-like manner we talked about the ‘tweaking’ as he called it.

On leaving, Dr D reinforced that it’s okay, they often do revisions of reconstruction and that if I don’t tell him – he doesn’t know.

So – he knows. I feel like the weight of the world has been lifted and am now ready to focus on fine-tuning.

Today, marks a year since I sat in Dr D’s rooms and heard the term DCIS for the first time.

That’s the day my life changed forever (the significant changes to my body of course came later, another bizarre kind of anniversary to mark).

No shock, no fear, no grief, no sadness – just relief he was detailing what could be done to prevent it from progressing to the next stage and determination to get the process underway. Boy, did I feel lucky.

The sadness and at times disbelief is only just starting to seep in. What a year?!

For as long as I live I think April 23 – date of diagnosis, May 20 – date of bilateral mastectomy (plus to a lesser degree the surrounding dates on which I had the lumpectomies, partial mastectomy and later the reconstruction) will always hold a bit of a heavy, painful weight. It thankfully will be balanced by the gratefulness I feel to be here.

Thanks again, to everyone involved. Happy Anniversary.