Sunday, 11 June 2017
It's been a while folks! Chemo 6 really knocked me for six and it's taken some coming round from. Not to mention a tonne of marking, half term holiday with the annual jaunt to Wales and another gazillion hospital visits.
When 6 rounds of chemotherapy have been completed there is a 4-6 week window in which they have to do the mastectomy for optimum results. And so commences chapter and verse as to what will happen next, so buckle up!
I have managed (very unlike me!) where this cancer diagnosis is concerned, to step away from Mr Google for the most part. Usually when someone says 'don't do....'; like a rebellious school child it's the first thing I do! The oncologist telling me 'Whatever happens don't google Triple Negative Breast Cancer as there are so many horror stories' quite honestly scared me silly. I did eventually read up on the facts about it but on the advice of a fellow #cancerbuddy I stuck to the main sites (Good tip Mrs Thorpe ;-)
I read the details about the raft of side effects the different chemo drugs could cause. Nausea. Check. Vomiting. Check. Bone,muscle and joint pain. Check. Rigid, brittle and discoloured nails. Check. Neuropathy. Check. Bloating. Check. Reflux. Check. Hair loss. Check. No periods (probably an induced premature menopause) Check. Nasty taste in mouth. Check. Tinnitus. Check. Constipation. Check. Loss of taste. Check. Diarrhoea. Check. Sweats. Check. Breathlessness. Check. Dizziness. Check. Hearing loss. Check. Mouth ulcers. Check. Weight gain. Check. Hot flushes. Check. Brain fog. Check. Chemo cough. Check. Yes all of those side effects...and more.
And the third thing I read about; in fact researched quite extensively, were the different types of reconstruction that are available.
Some of them involve the surgeons relocating muscle to recreate the breast that has been removed. All the surgeons do different types of reconstruction. The surgeon who I've had since the beginning uses the latissimus dorsi muscle to reconstruct http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/lat-dorsi
The head plastic surgeon at Leeds offers another procedure using stomach muscle to reconstruct called The TRAM Flap http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/tram
I do want a tissue reconstruction if possible, but why would I want them to use muscle that I need elsewhere?? Back muscle I particularly need for using crutches or a wheelchair and for when I can return to swimming.
They can also reconstruct using an implant, which I know many have successfully. I'm not keen though on setting myself up for more surgery in the future when needing to have it replaced. I have had sooooo many opertions now I am quite frankly sick of them.
The DIEP Flap surgery seemed a sensible route to go down. I have always been partial to carrying a little extra (sometimes a lot!) around the midrif so growing a new boob there seemed a no-brainer!
One surgeon does the mastectomy and a specialist microsurgeon removes a flap of skin and tissue (including blood supply) from the abdomen and somehow reconstructs a breast. I will lose my nipple but they 'create' the new area where it will be located from the abdominal skin and will also reconstruct this at a later date using sewing techniques and tattooing. All quite amazing really and complicated and I won't lie; very very scary.
I won't subject you to photographs but below is a diagram of the area they remove and then what the finished result should appear like....in theory.
You can read more about it here https://www.microsurgeon.org/diepbreastreconstruction
Despite this technique being carried out regularly since 1991 there aren't a huge number of oncoplastic breast microsurgeons who have the skills to do it. Unfortunately for me the chap who has been doing so at Leeds Teaching Hospitals is leaving. So I would be faced with accepting the Dorsi or TRAM flap options. So unfortunately I have become one of these patients who faces a postcode lottery of treatment options. As I'm a suitable candidate for it, if I lived in Hull or York, I would be offered it as a matter of course.
I'm not resentful of this, although I felt backed into a corner, being forced to accept that if I wanted an abdominal tissue reconstruction of any kind, even the TRAM flap I would need to undergo 3 lots of surgery (mastectomy, reconstruction and the other side done to match). The guilt you're left with, rather than just concentrating on getting rid of the cancer, that you also want a reconstruction; a 'cosmetic' procedure, is huge. But come on I've already lost about 1/4 of my body due a cancer misdiagnosis, why wouldn't I want it? As I am likely to need radiotherapy after the surgery the powers that be at Leeds, quote 'flatly refuse' to do abdominal reconstructions before radiotherapy. I was left with no choice but to look elsewhere. I do feel I should have been presented with these choices as opposed to me doing all the research, especially given the tight time frame.
To be honest I felt about as low as I could at this point. I could see no end to this nightmare. The treatment stretching before me, well into 2018. Whilst trying to recover from my 6th chemo and receiving the news that I would need to reapply for the lecturing role for September AND now this. So apologies if you were one of the people who asked me how I was or said 'Hi are you ok?' Or 'Hi, you alright?' in the playground at school, the supermarket or the corridor at work and I couldn't even bring myself to answer.
Synchronicity had me in touch with the friend of 3 people I already knew. Carolyn is also being treated for breast cancer but in York. We were in regular contact and it just so happened she is also opting for the DIEP flap surgery. Thankfully she saw a surgeon in Hull who, as eluded to already, was happy to reconstruct at the time of mastectomy i.e. without removing any muscle. This fab lady gave me a head start I needed of knowing who to see in Yorkshire. I could have requested to be referred on the NHS but by this time I was 2 weeks into the 'magic window', so the reality is I would have had to have the mastectomy at Leeds and gone to Hull afterwards.
Thankfully this time being back in touch with Mr Google I found Mr Akali also consults privately at Hull Spire. Thanks to my lovely Dad I've always had medical insurance since he worked at Unilever all those years ago (in fact I'm still under their group number!!) AXA PPP gave me the go ahead to see him and off we went.
He said I was a candidate for DIEP Flap reconstruction at the time of mastectomy and said if I wanted to go down this route he could do it on June 15th. He explained to us that more recent large scale studies (which of course with access to zillions of journals at work I've been able to verify - shout if you want any links to read) have only showed minor issues, if any, with having radiotherapy and a number of his patients have had it. This was later confirmed at Leeds when I questioned it. Sadly it seems this 'current thinking' has not been taken on board yet here if women want abdominal reconstructions at the time of mastectomy.
After an agonising wait my insurance thankfully authorised the surgery plus the follow up surgery to the right side (in 3-6 months time) plus nipple reconstruction and tattooing etc
I can't express my relief, which has meant I was able to relocate my mojo and find the motivation to get up in the mornings again. I feel like a different person. I now can see a possible end to this treatment by the turn of the year (maybe with some more minor procedures to be completed in 2018).
I can't say I'll be skipping off to Hull on Thursday morning; who would, faced with 8 hours of surgery, a couple of days in HDU and 6-8 weeks recovery BUT I feel I'm on the right path for me to get rid of this cancer and move forward. I am quite honestly petrified and dreading it but to coin one of my most used phrases recently 'needs must'. It means 1 major surgery not 2 and hopefully ticking off another step on this hideous journey.
The next step in early July will be hearing what further active treatment I need. Possibly another 2 cycles of chemo and as mentioned, radiotherapy. We will see what the pathologist has to say following surgery and the outcome of the subsequent MDT (multi disciplinary team) meeting at Leeds but we will cross those bridges when we get to them.
Understandably my faith in pathologists is not great; as 2 were previously responsible for my cancer misdiagnosis in 1992 but I will find myself at their mercy once again. Thankfully as a result of public enquiries, such as the one I was caught up in and much better practice the MDT including numerous different professionals caring for us then discuss these results and make decisions as to the next step in our treatment regimes.
I feel like I'm on a rollercoaster (I've never liked them) and can't get off. I am not brave or inspirational as I'm regularly told, I have no choice but to continue on this journey and am merely keeping on keeping on. Thanks to all those who are on it with me and those who've climbed aboard since it started.