Sunday, 19 January 2020

100 days and counting


Happy new year, it’s been a busy couple of months since the big remission news, so much has happened and there is still so much to do. They say that it’s easier to eat an elephant when it is broken into chunks - here are the chunks of everything that’s swilling around my brain:


66 days in remission
This is a tough feeling to describe. It’s almost impossible to believe that this time five years ago I was receiving an emergency chest-drain courtesy of an infection that had developed from the mastectomy. Fast-forward five years to today where we took Erica to rugby training, had a lovely coffee in the Ely sunshine and I went for a run around the gorgeous frozen fenland that surrounds our village.
 2020 Virgin Money London Marathon image 3
I always try to remember to be thankful for all of the second chances that I’ve been given. It’s great to be in remission but it is also a little scary. No longer will I have the six-monthly CT scans to search for any reoccurring cancer. From now on, scans will only be performed if I present with symptoms which puts the responsibility for spotting new symptoms squarely on my shoulders. Separating muscle aches from anything sinister is a challenge when you’re training for a marathon! Speaking of which…..
100 days till the marathon
Before you have the pedantic need to correct me, yes, it's actually 98 days until the marathon but that doesn't have quite the same ring to it.

I've never done a marathon (or even a half marathon) before and was massively overwhelmed until a lovely friend suggested that I watched "Brittany Runs a Marathon", a hilarious and motivating true story which is a must for anyone taking on a BHAG (Big Hairy Audacious Goal)

My plan is to train well enough to be able to enjoy the atmosphere of the day itself. I am staggered by how many people are planning to make the journey into London and cheer me on, this helps in the dark training days, speaking of which....
350km training complete
Who the bloody hell decided to put the London marathon at the end of April? Yes, it will probably be a lovely spring day for many participants and spectators but it requires training through the WINTER!

For anyone who hasn't noticed, winter is cold, dark and scary. A colleague at work suggested a brilliant AI app called "Train as One". It creates a bespoke training plan and adjusts it based on your performance.

However, over the last couple of weeks it has royally been doing my head in. It keeps on planning looooong and slooooow runs which I have to complete at night in the deserted and scary country lanes surrounding our village where I am constantly convinced that I am about to be murdered. I was about the chuck the whole plan in the bin until..... 
A surprise 1st place
I won a Park Run....!!!

Well, that's not strictly true, I came first place out of 19 other women in my age group. ParkRuns are awesome, a whopping 700 of them take place at 9am every Saturday morning all over the country. It's free to take part and they open to people of all abilities (which is probably why I won) take a look at this link to find your nearest event.
7 days sober
After winning my age category and knocking two whole minutes off my PB, it was no surprise that the likely accelerator was seven days of preceding sobriety. I had to face reality and have given up booze for the marathon.


Those of you who know me well are aware that this is a regular flip flop for me, I tend to quit for 3/4 of the year and then fall unceremoniously off the wagon again. Well, in the words of my fantastic dad "it's easy to quit, I've done it hundreds of times".
£675 raised
If giving up my beloved Rioja isn't enough of a reason to sponsor me then how about donating a little cash to get me through 26.2 miles (not counting the many hundreds of miles I will do in training).


We've raised £675 so far, Ocado have promised another £500. My folks and their lovely friends from our gorgeous Devonion community are working tirelessly to host fundraising dinners, sell greeting cards and generally motivate me to get my fat arse out of my warm bed at 4.30am to get out there and run my socks off.

If you are able to help us out then please do so through this link. Every single penny will go towards Breast Cancer Now who are working around the clock to develop all sorts of treatments and early diagnosis breakthroughs with the aim of stopping breast cancer in its tracks. 
For the doubters
There are people who say that I won't make it to the marathon. Unsurprisingly, they are the same people who disappeared when I was diagnosed.

Those who doubt make me more determined. I'd like to thank the doubters for making me stronger but I'm saving my energy for the real friends and family who have supported us all along.

We will show you!

#fightlikeagirl

Thursday, 14 November 2019

The results are in....

First of all, I have been blown-away by the messages of support, not just yesterday but throughout the last five years. Today I was given the news that my cancer is in remission and I can get on with my life. The cocktail of regular medication and injections will stay as long as I can tolerate them and we’re not yet allowed to speak of the condition being cured but I am happy to have made it this far.
 
It will be impossible to thank every single person who helped me to get to this point, you know who you are and you know how much it means - from my amazing friend Pip who dashed over to the cancer centre with her babies so that she could attend the appointment with me, to Michelle, the radiologist who waited for my appointment to be over so that she could give me a hug and say goodbye. 
 
 
Now what?! In typical de Louvois fashion I am marking the occasion with a bang. I wanted to do something positive with this experience and to help other women who may be embarking on this journey themselves. I also want to do everything I can to ensure that our beautiful daughter never has to face this wretched disease. I can do this by raising cash and spreading the word so I am delighted to announce that I have secured a place in the 2020 London Marathon, running for Breast Cancer Now.
 
As many of you know, I fell in love with running during my treatment as I could do it at my own pace and it provided me with a daily challenge. I want to continue running, to push myself to get better and to raise vital funds for breast cancer research. If you would like to sponsor me, you can find my fundraising page here. There is no pressure at all, just continuing to read the blog and sharing it with women who are being ignored by their GP’s is enough for me, if this collection of ramblings saves at least one life then I am a happy girl.
 
 
 
So all in all, thanks for your support and apologies in advance for the sweaty next chapter.
 
#fightlikeagirl

Wednesday, 13 November 2019

The Remission Scan

Well, here we are! I have been watching the flashing cursor for the last 20 minutes drawing a total blank. I’d forgotten just how much I loved writing this blog and, in turn, have forgotten how to write it. Here’s a recap for those of you who may be new to this hub of narcissism and also for those of you with a short memory. In true transformation-leadership style, I have created a timeline to support the narrative.

In a nutshell, I found a lump in September 2014, fought tooth and nail to be taken seriously, eventually got a diagnosis on new years eve and then jumped on the bandwagon of modern science; six operations, six months of chemo, 40 rounds of radiotherapy, six months of bisphosphonate infusions and hormone therapy, topped-off with a chemically induced menopause.



I am immensely happy with the reconstruction, it’s given me a new lease of life both in terms of confidence and the discovery of dormant cancer cells that the surgery uncovered. Once the shock of the recurrence receded, I was lucky enough to be offered state-of-the-art precision radiotherapy at Addenbrooke's hospital which blasted the little bastards whilst avoiding my heart and lungs.

This journey has been tough. When I look back at the blog I cringe at just how much I was trying to put on a brave face over the fear and the pain. It’s been tough on my marriage, my family, my friendships and on my career. We have all had to work really hard to keep this together but I’m confident that we will come through and we’ll be stronger for it.

 
 
So here we are, I've been having CT scans every six months to check on progress. Today's scan marks five years since diagnosis and, if clear, moves me into the remission category. Every scan is terrifying, they remind you just how complacent you have become with the second chance that you've been offered and just how much you desperately want to live. 

This moment felt like a fitting way to move this blog onto the next chapter and to offer a reminder for all of us to be grateful for the life that we have. Cancer is an expert at providing perspective. I’m sitting in a cafe with the familiar feeling of dread, psyching myself-up to walk over to the shiny-new specialist cancer centre in Newmarket, don the gown and get this done.

Promise to update with the results tomorrow - prayers of all denominations gratefully received.

Thank you x
#fightlikeagirl

Thursday, 15 December 2016

The one where cancer tries to ruin Christmas

The last seven days have been the most sobering reminder yet of just how much can change in a week.

Since my last update I'm pleased to report that I've been recovering really well (aside from the norovirus) and continue to be astounded by the results of my surgery. With this in mind I went along to my follow-up appointment with Prof. Malata so that he could take a look at the scars and tell me off again for doing too much moving around.

The appointment went really well and as he cleaned-up I made the fateful mistake of commenting on the wonderful end this has been to my cancer journey..... as soon as I saw him exchange worried looks with the nurse and sit down my heart went into my mouth. I heard him say "we found some more cancer" and remember nothing else. I went into a wild panic and just wanted to just wake up from this nightmare, how the hell can it be back? I've done everything I can to keep it at bay, it's Christmas, what am I going to tell Nathan, Erica, my family?

He explained that he'd opened-up my ribcage to locate the blood vessels for the reconstruction and noticed a swollen lymph node which he removed and sent for testing - the results of which came back as cancerous. He then explained that I'd need a scan to identify whether or not the cancer is spreading to the rest of my body and to allow the team to agree a treatment plan.

As many of you know, metastatic breast cancer has a poor survival rate and I spent the entire journey home wondering how I was going to start a new job in the midst of cancer treatment with no idea how I was going to contribute to the mortgage. Weirdly enough, the prospect of dying didn't really phase me that much, the prospect of leaving Nathan and Erica in limbo was terrifying.

When I got home I broke the news to Nathan and only then did I give myself the opportunity to cry (wailing banshee is probably a better description), that evening was Erica's nativity performance in Ely Cathedral and we prayed our hearts out throughout. The next morning I talked to my oncologist and we agreed the arrangements for the scan.

By Tuesday the following week, Mum and I made our way to Cromwell hospital in London for the PET CT scan - it's an incredible piece of medical wizardry - they starve you for 12 hours then inject you with glucose and radioactive isotopes, because cancer cells feed on the glucose first, they are the ones that show up on the scan, the whole process takes around 90 minutes and I didn't stop praying throughout!

Anybody who has been through cancer will tell you that the next bit is the absolute worst..... the waiting. The thing I find hardest is the knowledge that someone has seen your result and the longer it goes the more you convince yourself that it's a much bigger treatment plan. To take my mind off it I went for dinner the following day with my awesome Mummy friends and our sprogs after the Cathedral carol service (filled with more praying). They did such a good job of distracting me that I forgot about the results..... until I checked my phone...... six missed calls, five from Nathan and one from my oncologist...... another heart in mouth moment. I found a quiet corner and phoned Nathan, as soon as he started to reprimand me for ignoring the phone I knew that it was good news, he'd stalked Dr Russell all day and had tracked him down late in the evening to receive the news that the scan showed NO EVIDENCE OF DISEASE!!!!!!

The rest is a blur as my friends and I ordered wine and didn't stop drinking! I am sitting at the breakfast table with a very sore head and a refreshed perspective on life. What if Prof. Malata hadn't spotted that rogue lymph? What if I hadn't stopped drinking? None of this can be fate, can it? Is anyone really ever this lucky?

What I know for sure is that I'm going to celebrate Christmas like I never have before and can't wait to spend it with my amazing family and friends who have lived this with me everyday and never left my side.

Please go and give your loved-ones a massive hug, life is precious.

#fightlikeagirl

Sunday, 4 December 2016

The fourth (and final) operation

It's been twelve days since I went under the knife and I'm happy to report that all appears to be well. We arrived at the hospital for our 7am intake and, judging by the heaving waiting rooms, expected to spend the next couple of hours making polite conversation but was told "lucky you, you're first in"...... cue pang of dread followed by inevitable exchange of looks with Nathan where we silently agreed "let's get this done".

Within minutes I was lying in theatre being prepped by the team, I was astounded to see just how many people were involved in the procedure (I counted at least twelve) and was told that one team would be working on my stomach while another worked on the breast, I felt a flicker of guilt as I considered how much this must be costing our NHS but remembered that cancer chose me, not the other way around and this is the final step towards normality. Unfortunately, due to my relentless treatment, it took six attempts to find a healthy vein - a process that was mimicked by the quickening blood-pressure monitor but eventually we were ready to rock & roll. I remember some debate about Percy Pigs as the mask was placed over my mouth and then was out.

Eight hours later I was fighting with the recovery team to remove the layers of blankets and bring me a sick bowl... the morphine (as always) had made me wretchedly ill and the recovery process required a constant body temperature so I was burning up and felt awful. Thankfully the brilliant recovery team were able to calm me down and took me up to the ward where a room full of Doctors were waiting.... less to see how I was.... more to see my new body! Their reaction immediately made me feel better, Professor Malata is a legend throughout the British medical establishment and it turns out that people are always keen to see his work!

Although I was lucky enough to be allocated my own room, I quickly came to realise why.... the room had to be maintained at a constant 38.5 degrees (100 to my American friends) so that the blood circulation can be optimised underneath a stifling cotton wool wrap, binder and blankets. I honestly can't remember the last time I've felt that uncomfortable and the addition of four drains and a catheter on top of menopausal hot flashes added to the ordeal.

Thankfully I had a care team that figured me out very quickly, they realised that I needed targets and immediately negotiated them with me..... catheter out on day two, drains day three and home on day four as long as I promise not to argue with the physiotherapist. The beauty of this approach was that it gave me something to look forward to every day and although each milestone was full of pain and tears, the achievement of each brought me closer and closer to the end of this ordeal.

By Friday I was on my way home with instructions to wear a victorian-grade binder for the next three months in order to keep everything in place. I've had one visit back to the dressings clinic for the change and had my first view of the results which are impossible to do justice with words (and I'm not posting photos just yet!) all that remains to say is that I've been left with a beautifully flat stomach and a breast that is no longer square or full of pain. Despite being fresh out of surgery, my chest is less painful than it was before I went under the knife (unfortunately the same can't be said for my tummy, it feels like someone has stitched the top and bottom halves together and is pulling the strings constantly). Take it from me, tummy tucks are NOT fun!

None of the recovery would be possible without the incredible support of family and friends, Mum has been here to take Erica to school, nourish us all and relieve my cabin fever, Nathan has put up with my constant moaning and so many of you have brought gifts, cooked meals, sent flowers and cards.... such thoughtfulness that makes the end of this journey even sweeter.

Thank you for all of your support, it's been epic

#fightlikeagirl






Sunday, 20 November 2016

The one where I get a new knocker....


Well tomorrow is the big day. I've spent the evening playing the human canvas as Professor Malata sketched out his plans for tomorrow's operation. I'll never cease to be amazed by the skill and dedication of Prof. Malata and his team, it may sound like a cliche but he is an artist as well as a surgeon and firmly believe that I am in the best possible hands.


Nathan and I spent the weekend distracting ourselves from the inevitable by falling off the wagon at a beautiful converted castle just outside Bath. Whilst the rugby formed a necessary part of the itenary, the antique shopping culminated in the purchase of a lovely new knocker for our front door - the irony of which was lost on us at the time but makes so much sense now........ so we thought a picture of my pre-surgery markings next to my other new knocker would provide temporary solace from the nerves!

We've also spent the last couple of weeks converting the cellar of our house (previously a pub/ Post Office) and have had dealings with a multitude of tradespeople, as I sat in the consulting room with Nathan sketching out the plans with the surgical team it felt very much like our cellar renovation... Nathan even managed to convince them to remove my old chest port scar as part of the job.....!

So the plan is to re-open the mastectomy scar, remove my temporary expander and replace it with fat and skin from my stomach. The team will re-attach the blood vessels and create, to all intents and purposes, a breast that will look almost identical to the other but will be made entirely of stomach fat. The beady-eyed amongst you will recognise this as a tummy-tuck and boob job in one, some have even gone so far as to call the surgery "cosmetic" and I can assure you that nothing can be further from the truth.... first off I did not choose to have my breast hacked off- that was deemed necessary to save my life, secondly although it has been fun to grow a new boob over the last couple of months (I had to 'fatten-up' for surgery "Bridget Jones" style), I hate putting on weight and the process has made me pretty damn miserable.

I can't wait for it all to be over and start preparing for my summer bikini body. I'll keep you posted but will likely be unable to type for the next couple of weeks so have downloaded multiple box sets to keep me entertained.

Thank you for all of your support throughout this journey, you have no idea how much it means.

#fightlikeagirl



Wednesday, 9 November 2016

Make it happen

Two years ago today, a rancid collection of tumorous cells were dividing at a rate of knots and attacking my lymphatic system as Nathan and I tried, in vain, to get the doctors to take us seriously. At this point I'd seen two GP's and a specialist private consultant - although I was persistently patronised and fobbed-off at every appointment, I steadfastly refused to give up. I'd found the lump in September but it would take until 30th December to finally get a diagnosis.

The very thought of that makes me feel physically sick with a mix of rage and relief. My story is one of survival through tenacity and determination but sadly there are so many who don't get that chance. As I count down the days to my reconstructive surgery and what I hope will mark the end of my surgical marathon, I look back on the last 18 months and still genuinely believe that it happened to somebody else. I don't see myself as a cancer survivor, I don't want people to wear ribbons for me or share infuriating Facebook posts about how much they hate cancer, I want people to learn from my experience - Doctors are not infallible and you owe it to your family to make a nuisance of yourself until you get to the right outcome.


Although I would never, ever want to go through this experience again, I can't help thinking that cancer has changed me for the better. I have finished a Masters, won an industry award and bagged myself an awesome new job. Some may say it's coincidence, others may consider it karma, I think it's a louder inner-voice. I am no longer willing to compromise on what's important as life is too damn short. 


So if you're debating whether or not to make that next career move or you're worried about upsetting the doctor who isn't taking you seriously, just remember how fragile life can be and who is counting on you to make it happen.

#fightlikeagirl