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I am 44 years old, Married to Sean for 19 years and have 3 lovely children Hope is 14, Jack is 10 and Joe is 5.

Tuesday, 27 June 2017

Noob

A couple of weeks ago I think I wrote; I'll see you on the other side. Well I am here, on the other side. 

As foreseen I've been to hell and back in the last fortnight. The expected tough parts have been just that...tough. With some added extras that have made it even tougher. 

I'm not even going to bore you with all the details, gory or otherwise, save for saying yet again I came across some incompetent, thoughtless medics who in the end I asked not to be allowed near me again. 

On the other hand I was cared for by some lovely, compassionate nurses; male and female, who were just fantastic. Nothing was too much trouble and they went that extra mile to make me feel ok whenever they could, physically and mentally e.g. toast and jam midnight feast 😋 My consultant is a lovely, caring softly spoken guy, not to mention a highly skilled micro surgeon, who came to see me everyday no matter what time he finished surgery. Which was 11.30pm one night and yes....he still came. 

The surgery was long and tough to wake up from. I always suffer badly from a sore throat after surgery but such a long one meant the tube to intubate me was down for several hours. The only 'perk' of this is eating scrambled egg, soup and jelly for the next few days! 

After 3 days on oxygen, first a mask then tube up my nose, it was so irritated and bleeding that I only lasted another day. I then battled to gets SATS over 90 at every set of observations, constantly being threatened with going back on it. So it was lots of deep breaths, wiggling the monitor etc and Bingo!

The surgery was 'successful' in that during 7 1/2 hours I was in theatre they removed belly tissue and skin known as 'the flap' (hence being cut from hip to hip....ouch). Removed the diseased breast and reconstructed my new boob (or as it's affectionally now known as Noob ;-) a great deal smaller (as requested!) I might add than the right one. Which will be operated on to be 'matched' in 3-6 months. In the meantime I've been given a soft prosthesis so I don't look lop sided! 

The most serious concern after this type of surgery is for the flap to fail.  If this is going to happen it usually does in the first 48 hours but you're closely monitored for a good 5 days. As they also reconnect the blood supply from the abdomen in Noob this is what usually fails...caused by clotting. Whilst in Critical Care they monitor Noob's temperature with a permanently connected sensor as well as manually taking it and checking appearance, together with obs every half hour for the first 24 then hourly for the next 24. Cue light on at each check, tight BP cuff, thermometer shoved in ear = zero sleep. But it's great to know how closely they keep an eye on you. 

Unfortunately it became clear quite quickly that Noob's skin wasn't healing as well as we'd hoped. I had a large blood blister drained a couple of days later and as time went on the area became necrotic, sadly the skin had not survived and had died. There were 2 options moving forward. Leave the necrotic area until it heals and quite literally drops off. This can take several weeks to happen and unfortunately time is not on my side. Any further active treatment needs to happen soon. This will be either more chemo and radiotherapy or 'just' radiotherapy. This is dependent on the pathology results from the surgery. These should be in this week and I'm hoping to receive these and the treatment plan next Monday

So the other option is to operate; debride (cut away) the dead tissue and tidy things up using a skin graft from my thigh. This will hopefully mean much quicker healing and my ability to move on to the next stage of treatment. This is the only option then for me so they planned it for this coming Thursday, 29th of June

So after a week seeing nothing more than the corner of a window and a fan in my face morning, noon and night to combat the heatwave - that I missed - I walked with my prosthetic leg and crutches out of the hospital. It may have been at snail's pace but it was upright and walking!!! Knowing it was only 6 days respite until Mr Akali sees me again ready for the following day's surgery. 

So we're in yet another 'limbo land' waiting for Noob Surgery Round 2, but enabling my stomach to start healing. So I need to focus on that and resting; which isn't hard as it REALLY hurts to move and use crutches and a wheelchair. I'm trying to manage on slow release morphine in the morning and evening, also regular codeine, paracetemol and ibuprofen. I'm still at that stage where I'm counting the hours and minutes until I can take the next meds. Hopefully when this surgery is out of the way I can return to this stage and even beyond it to steal myself for more 'therapy' - chemo, radio or otherwise. 










Sunday, 11 June 2017

Imminent Surgery


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. 









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.