Tuesday, 2 May 2017

It's time to dust myself off and move on

As many of you will know, the close-shave re-occurrence that raised its ugly head in December was treated four weeks later with innovative tomotherapy at my local NHS hospital in Cambridge. The cancer cells were found close to my heart and lungs so could not be treated using conventional radiotherapy but I was really lucky to have the benefit of this pioneering technology as very few machines are in operation in the UK. I'd had my fingers burnt by BUPA in the past so made sure that I phoned them to let them know what was happening. The insurance policy allows patients to claim for treatment that they were unable to have in a private facility so I marked the end of the treatment with a phone call to make the claim.

Everything went swimmingly, the funds were paid a couple of days later and I carried on being grateful for my abundance of good luck... until last week. I received a phone call from BUPA explaining, in essence, that someone had ticked the wrong box on my paperwork and that I needed to repay them the cash. I was told that although I'd received the treatment at my local NHS hospital I had been listed as a private patient and it was easier for them to claim the payment back from me than to try and pursue the NHS for their expenses.... needless to say, I was fuming and went for a run around Clumber Park after work to expel my frustration.

The anger propelled my pace and set me up for an impressive lap time... until my phone ran out of battery... I cursed and started to listen to the pattern of my steps in time with the "we're with you every step of the way" BUPA commercial which was running around in my head with the addition of my own lines "until we need to trip you up" and then ... BAM..... I was lying face down on the path crying into my bleeding hands staring at the rock that had tripped me up and feeling rotten about my life.

Then I heard it.
The voice in my head.
God only knows who it was but I will never, ever forget it.
She said "You're lucky to be alive. Stop crying, dust yourself off and move on."

I thought about the lifelong memories that I made with my sister at Friday's Ed Sheeran concert, I cried in her arms as he sang "Bloodstream" as that was the song that got me through chemo but now it's time to dust myself off and move on.

Every now and then we all need little reminders of just how lucky we are, it's not what happens to us that defines us - it's what we become.


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.


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


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.


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.


Monday, 19 September 2016

The one where everything changes......... and doesn't

Please forgive the "Schrodinger’s cat" title and my inexcusable tardiness for which I will, as always, attempt to make an excuse. Lots has changed in the months following my last update and I’ll begin with the obvious.

As many of you know, I’ve been persevering with an Exec. MBA at the University of Exeter for around the last three years. It was a fantastic experience and the qualification offers real-world grounding to people who care about the legacy that they leave behind more than the personal gain that they accumulate. I was forced to take a six month break to battle the cancer jabberwocky but soon got back up to full steam and handed in my final consulting project on Friday (I’m keeping my fingers crossed for a distinction but am cutting that characteristically fine).

I'm not afraid to admit that the celebrations to mark this achievement saw me fall off the wagon in spectacular style (thanks sis!) but I'm now well and truly back-on and ready to roll.

The rather frustrating question I endure now is…… "So what happens now?". Truth is, I have no idea. I think I’m suffering from post-MBA blues (I Googled it, it’s a thing) as I guess I expected everything to change in an instant, it’s a bit like finishing cancer treatment - you expect to feel ecstatic but instead you feel defeated and drained. 

I keep on reminding myself that eighteen months ago I would gladly have swapped a mustard-gas chemo infusion for the post MBA blues and that’s exactly what I need…. some perspective.

Last week I was offered a date for my reconstructive surgery so, all being well, I’ll go under the knife on 21st November for DIEP flap reconstruction. It’s a pretty brutal procedure for which I will be at the pleasure of the NHS for the best part of two weeks but in a rather twisted way, I’m actually looking forward to it. I’ve stalked and snared one of the most respected breast surgeons in the world and get a tummy-tuck for good measure so can spend the next couple of weeks stuffing my face as I'm "growing a new boob" as a lovely fellow survivor so beautifully puts it. 

This will be the first procedure that I’ll undergo which is not directly attacking the cancer, it’s going to give me a much-needed slice of normality and I can’t wait to see the results. 

I promise to get back to blogging now that my commute has been reclaimed by Candy Crush and free newspapers - many of you know, those are two things that won’t hold my attention for long. 

Thanks for being so understanding & please keep donating to Breast Cancer Now - it really does make a difference


Sunday, 5 June 2016

The one where I go back for more chemo......

I'm not exactly sure how to start this post, it's been a whirlwind month to say the least made up of some exhilarating and debilitating moments.

Those of you who are on Facebook would have been inundated by my celebrity-filled showcasing and I was hoping to use this update to share with you some of the official photos and videos from the M&S Summer Ball but alas they have not yet had the PR seal of approval (which makes them even more intriguing). I promise to share them with you in an update as soon as I have them, but in the meantime, I can very proudly say that I never expected cancer to enable me to tick dinner with David Gandy off my bucket list!

As you will remember from my last update, since our house move I now have a new medical team at the Nuffield in Cambridge so I've spent the last couple of weeks endlessly reviewing my histology and pathology reports with teams of boffins. Even though the tedious experience may have surfaced some zesty memories, the invaluable second opinions have resulted in my inclusion onto a brand new treatment plan. I now understand that my sobriety makes me a good candidate for clinical trials (good advice for anyone in a similar predicament), add to that an uncompromising Oncologist and you have a winning formula (we hope)!

For the next two years I will be having Zometa which is effectively a mild chemotherapy and is administered in the same way. Fortunately this time I won't lose my hair, but, as I experienced shortly after the first round, Zometa has some pretty unpleasant side effects and I retreated to my chemo-cave cared for by my long-suffering family as I willed the pain and sickness to pass. Why would I put myself through it? It's ok to think that, I thought it too as I curled-up in agony refusing painkillers as they would just make the vomiting worse. As you will remember from previous posts, for many women diagnosed with stage III breast cancer, there is a good chance it will return and spread to your lungs, liver, brain and bones. If it spreads to your bones there is a zero survival rate. However, some new and very compelling research has found that the use of bisphosphonates to protect the bones from reoccurring cancer increases survival rates significantly and in the words of Dr Russell "My job is to keep you alive until a cure is found".

As is always the case with cancer, all is not rosy. The treatment is most successful in post-menopausal women. Sparing you the gory details I was most pleased to discover that my reproductive system had survived the chemothery and had started working again, however, in order for the Zometa to work it all needs to be shut down so that means 6 months of Zoladex pellets injected directly into my stomach and if that doesn't work then the whole lot will be surgically removed....classy!

I'm starting to come to terms with the new regime and although it may sound odd, cancer treatment is easier after the first round as most of the stress is the unknown, now I know what I've signed up for, the pragmatic Helen will make a plan to deal with the symptoms each time around because spending time with my family is worth the pain and sickness.

I'll finish with a brilliant video that was shown on the night of the M&S Summer Ball, it features all of the other gorgeous women from our "Magnificent Seven" campaign. I warn you that it's not an easy watch but compel you to do something positive after watching it.

Please donate money to fund the research that will STOP this from happening..... TODAY.