Living on borrowed time…

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Three years ago yesterday (November 26, 2013) I was diagnosed with breast cancer. On June 2, 2014, it was confirmed that I actually had Secondary Breast Cancer (SBC), where the breast cancer had spread, for me to my lungs and spine.
The reality is that I already had secondaries when I was first diagnosed (known as the double whammy), but I’m glad I didn’t know that at the time. I really don’t think I could have coped with the information. For me the primary diagnosis was enough of a shock and enough to process and come to terms with.
I admit to being completely ignorant about Secondary Breast Cancer, mainly because it simply isn’t talked about. The pink, fluffy impression of breast cancer fundraising and awareness infers it can be cured. For 70% of women and men diagnosed with primary breast cancer that will be the case, but 30% us will develop Secondary Breast Cancer which will kill us. It cannot be cured and we are all on treatment for life – however long that may be – eventually becoming one of the 12,000 people who die of SBC in the UK each year. That’s 33 people, each and every day.
It’s difficult to get accurate statistics about SBC because many hospitals and trusts (including my own) do not keep proper records, even though they are supposed to. But, from what we do know, only 22% of SBC patients live beyond five years, and the average life expectancy of someone with SBC is three years. I was diagnosed three years ago yesterday, a very poignant landmark day for me.
From here on in I really do feel I am living on borrowed time – but you can rest assured I intend to pack a lot of living into each day!
I chronicle what we (me and my lovely hubby Ray) get up to on Facebook and have finally stopped feeling guilty about the holidays we go on, the day trips we make, the weekend breaks we take, and the fun we have.
I’ve always been hyper-organised, planning ahead and making the most of deals and offers, and for a while the cancer took that away from me. I felt I couldn’t plan because I simply didn’t know what might happen. Would I feel too ill? Would I have to cancel? Would we lose money?
Now I just go for it. I try to book hotels which only require a small deposit, or which can be cancelled near to the arrival date if necessary. I also book in advance to get cheap flights which wouldn’t be worth claiming for on the insurance if we did have to cancel.
I’m not allowed to do long-haul flights or any more cruises, so feel incredibly grateful to have seen as much of the world as I have. We have just about persuaded my oncologist to allow us to do a driving holiday (Ray would love to drive through France to Spain and Italy). Instead of plotting a route to see famous landmarks Ray’s working on an itinerary that passes major hospitals in case I need treatment urgently!! If my oncologist is happy with the plan we might get to go on an “awfully big adventure.” 😃
People make comments: “Ooh…you’re always away! When’s your next holiday? You two certainly get about!” At first I felt embarrassed and guilty but now I simply reply that I’ve got a lot of living and holidays to pack in to a limited time – so there. It usually shuts them up!
I continue to work as a PR Consultant for around five days a month (to help pay for all the fun things we do) and am involved in various charity endeavours.
My dream is to win the lottery, not have to work at all, and dedicate all my spare time to awareness and advocacy around Secondary Breast Cancer for the charity Second Hope, as well as continuing to support the Relay For Life Aylesbury. I’ve also been interviewed by the Public Affairs team at Breast Cancer Now and may be used in future campaigns around the availability of Kadcyla through the Cancer Drugs Fund.
In terms of my medical journey I realise I haven’t updated this blog for several months – huge apologies – but I’m going to make it my New Year’s resolution to post an update (even just a short one) each month. It certainly hasn’t been because things have been quiet recently! I know many of you keep track of me on Facebook, and I can’t thank you enough for the lovely messages and comments you send, but for those who don’t know the latest, here goes …
After the hiccup with the scan reading in April (which said there was significant growth in one of my lung tumours, when it was actually 1.5mm so could be classed as a possible error in reading) I’ve continued on the Kadcyla chemo every three weeks.

Unfortunately my scans in July showed another growth in the size of the same lung tumour (in my right lung) which couldn’t be dismissed. One more millimetre and I’d have had to stop the Kadcyla which has done an amazing job healing my spine (there is no evidence of active disease in the three affected vertebrae at the moment) and kept the left lung tumour stable for 18 months.
We had a few weeks of agony investigating and being assessed for a very new clinical trial at Oxford (SYD 985 – so new it doesn’t have a name!) It’s still phase 1 so VERY early stage and only 33 people worldwide have been given the drug so far (one of whom died due to the side effects ☹️. The downside would have been the very severe side effects, so much so that the Doctor leading the trial said he’d be loath to put me on it because I am actually incredibly well and the drug would make me very ill!
Biopsies were sent to the US for assessment regardless, but during the waiting period the clinical trial doctor suggested to my oncologist that I might be a good candidate for Thermal Ablation on my lung tumour.

To cut a long story short that is exactly what happened and on September 22nd I spent the night in the Churchill Hospital in Oxford having my right lung tumour ‘cooked’. Under general anaesthetic I had metal rods inserted through my ribcage into my lung, piercing the tumour. The rods were then heated up to the temperature of a boiling kettle, cooking the tumour until it was destroyed.

It was an incredibly straightforward procedure and the Oxford team, who will be monitoring me and carrying out my scans every three months, have said that as soon as the right lung tumour starts to grow they will carry out ablation on it too. This means that I can stay on the Kadcyla until there is progression in my spine, or any new tumours pop up – hopefully not for a very long time!
I didn’t expect there to be any real benefits from the ablation – apart for killing off the tumour – but I have had more energy, mentally have felt brighter, and don’t get breathless when walking longer distances. Ray had become an expert at spotting benches so I could have a little rest, but I rarely need to stop nowadays which is fantastic.
As I write we’re on a flight coming back from Lanzarote, where we’ve enjoyed 10 days of beautiful warmth and sunshine. And yes, before you ask, I do have other trips planned! Four days in Germany on a girly trip to visit the Christmas markets (flights cost £60 return as were booked in April!), an overnight stay in Scunthorpe (ooh the glamour!) to visit my brother and his family to exchange pressies, and then five nights in a lovely Brighton hotel, including New Year – paid for by Tesco Clubcard vouchers 😊
I’ve bought my 2017 diary and we’re already starting to fill it with plans, working around my treatment schedule and hospital appointments as best we can.
Reality hits tomorrow when we get home as next week is a real ‘fun-packed’ extravaganza. Monday – blood test and flu jab; Tuesday – chemo at Stoke Mandeville Hospital; Wednesday – bone scan at Wycombe Hospital, Thursday – Living with Secondary Breast Cancer day in Oxford. Will be balancing it with some Christmas shopping in Wycombe during our three free hours. I have to be injected at 10am and then go back at 1pm for the scan. It’s then coffee with a friend on Friday and a spa day on Saturday.
Life is for living and that’s what I do – and would heartily recommend you all to do the same!
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Cancerversaries, Scanxiety and Bouncebackability…..

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It’s been five months since I last posted and wow, what a rollercoaster of a time it has been – especially the last month.

Part of my silence has been down to the fact that I have always struggled with winter (even in my pre-cancer life) – the short days, long, dark nights, and lack of sunlight. It effects my mood tremendously and this winter has been so much worse than before, coupled with the increasing fatigue from regular treatment. Basically I have been a real misery and it’s taken lots of rest – and giving myself a good talking to on several occasions – to pull me out of this pit of depression when, quite frankly, I could easily have just pulled the covers over my head and gone into hibernation, for weeks (maybe I was a tortoise or hedgehog in a previous life?!)

My scan results before Christmas showed I was stable – brilliant news – and I then enjoyed a fantastic four-night, girly break to Gran Canaria where my bestie Vicky ensured I was thoroughly pampered and spoiled. Spa treatments every day, fabulous food, the plushest of hotels and wonderful nights out (a moonlight cinema where we cuddled under duvets to watch James Bond and a hilarious night out at a Drag Show where we interacted – to everyone’s amusement – with the performers on stage). Was it any wonder depression hit when landing to freezing temperatures after four days in the sun?!

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The winter period is also hard as I’m constantly reminded of my ‘Cancerversaries’: notably the anniversary of my initial diagnosis (November 26, 2013), and my six rounds of chemo regime which started on January 13, 2014. My Timehop pops up with of me updating everyone on my progress two years ago. It also reminds me of how life has changed. A year ago, before the progression, I was smugly posting about going to aquafit four times a week and loving it. Now my exercise options are VERY limited – though I have bought a fitness tracker to monitor my steps – I just need to work out how to set it up before the humiliation begins. Rest assured I will not be posting my efforts on Facebook this time round!

The last few months have also crystallised for me the fragility of my situation. I am so incredibly lucky not to suffer any pain (yet), unlike many of the ladies I know through two online forums specifically for those of us with Secondary Breast Cancer. They are such an amazing bunch of inspirational, courageous women and we call on each other day and night (there is always someone online during the wee, small hours, part of the WAC -Wide Awake Club). We share our hopes, fears, and are constantly posting questions – the knowledge we’ve all amassed and readily share is phenomenal. We also have occasional face-to-face get togethers where we put faces to names, eat, drink and laugh – boy do we laugh!

We forge strong and deep friendships quickly and can ‘talk’ about the most personal of issues and distressing of situations because we don’t have the luxury of time. There is no ‘slow burn’ to our friendships. We cut to the chase. We are brutally honest. We can talk about the things we don’t want to share with friends or family. This does, however, have a massive downside and it’s something we have suffered far too often over the last few months. When one of our members dies it is a horrible reminder of what is to come. During December and the first half of January we lost 16 members. A staggering number but a reflection of how people fight to reach milestone events – in this case Christmas and New Year. Some make it, others don’t. It’s also frightening how quickly someone can deteriorate and we have lost many more members since January, three in the last week alone, including a mum of four young boys. These losses are a constant reminder of the reality of Secondary Breast Cancer where the average life expectancy is three years, with only around 22% surviving five years.

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Someone who opened millions of people’s eyes to the reality of SBC was Holley Kitchin a ‘Cancer Lifer’ from the US who posted a powerful video online last year. Through Facebook, Twitter and You Tube her video was watched by millions of people, educating and highlighting what living with SBC really means. Holley died in January, aged 42, just days before her younger son’s fifth birthday – a day she fought so hard to reach. Her video is still available at https://www.youtube.com/watch?v=QDQ0FjP7J-c

We have also lost two close friends to other cancers over the last few months as well, one in December and one earlier in April, while another is going through the diagnosis process as I write. It simply seems never-ending.

The last three months have been physically a bit draining too. On top of the ‘normal’ fatigue I’ve had a chest infection (antibiotics and inhaler needed), a gum infection (antibiotics), and then last week I had to have the offending tooth taken out (two more lots of antibiotics!). As a precaution I won’t be having my Denosumab bone-strengthening injection for eight weeks. Denosumab can cause osteonecrosis of the jaw (ONJ). This is a severe bone disease (osteonecrosis) that basically causes the jaw to disintegrate and die. I know one lady who has had to have so many parts of her jaw removed she has lost eight teeth. As removing the tooth impacts the jaw the medics want my mouth to heal completely before I re-start that aspect my treatment. Needless to say I’m very happy to go along with them!

Everyone who has read previous posts will know how grateful I am to the amazing medical team I have looking after me. Everyone in the chemo unit is fantastic, my GP incredibly supportive and most of us are secretly in love with our consultant oncologist (the lovely Dr E) – a man who goes the extra 10 miles when looking after his patients. He’s called me at 8.40pm to give me a blood test result which let me fly off on holiday; we all know our appointments will be running late, but it’s because he spends so much time with each of us; when another oncologist called in sick he saw both lists of patients, and we just know that whatever he suggests it’s because he thinks it’s absolutely the best course of action and it’s what he would do for his own relatives. (This is always a really good question to remember if you’re being bombarded with treatment choices. Ask the consultant what he/she would do if it was there mum, wife, sister or daughter!)

When ordering my latest scans he already knew he wouldn’t be at Stoke Mandeville the week of my results but he wanted me to know that if the results weren’t good he already had a plan of campaign in place. This involved applying for a place on a clinical trial in Birmingham because, as soon as there is deterioration in my condition, funding for my Kadcyla treatment through the Cancer Drugs Fund stops and we have to look at other options. In a way knowing that this was the plan made waiting for the results even worse – almost like because I knew about Plan B, it would become a self-fulfilling prophesy (little did I realise what was to come!!).

Along with Cancerversary, Scanxiety is another new word I’ve come to know well over the last couple of years – and it only gets worse as time goes on. No matter how many scans you have (in my case a CT scan every 10-12 weeks, a bone scan every 6-9 months, and a heart echo thrown in every three months for good measure) it doesn’t get easier. Each one could be ‘the one’ that shows a deterioration. So there you have it: Scanxiety: the anxiety associated with cancer-detecting scans.

When we arrived to get my results last month the first thing we learned was that the CT scan report had not been done yet – even though it had been requested for that day. But the bone scan results (which we got at 10am) showed amazing healing in my spine, so good there is No Evidence of Disease (NED). There will still be cancer cells there but they are so small they can’t be detected. This was unbelievable news and we left the appointment on cloud nine, believing (as did my oncologist’s registrar) that it should bode well for my lungs too as they have remained stable on the Kadcyla for 11 months.

To say the proverbial rung was pulled out from under us at 4pm when the registrar called with the CT result was the biggest understatement. The report said that the two lung tumours had both increased in size, one ‘significantly’. The rug was pulled, we were flung across the room and hit the wall at top speed.

There then followed 10 days of hell. My Kadcyla was stopper. An application for a clinical trial in Birmingham was made. My oncologist requested a more detailed scan report explain the actual tumour growth measurements and we did everything we could to find out as much as we could about the NALA study, which I was put forward for, and any and all other treatment options.

I was mentally preparing myself for a much harsher treatment regime in the knowledge that another drug had failed. My options when Kadcyla fails are limited. It is considered a very ‘doable’ chemo and I have responded far better than many other people with very few side effects. Whatever comes next will be far harsher and far more debilitating. There was no guarantee I would get on the trial so we did lots of research into trial drugs which aren’t available on the NHS but could be paid for privately. How much do they cost? How many months/years would our savings pay for? Our list of questions was endless.

In the end our research, my oncologist’s time and effort, and the tears we shed were all unnecessary. He had secured me a place on the NALA study in Swindon (the Birmingham trial is not up and running yet) but the revised CT scan report, which came through the morning of my appointment, showed that there had NOT been significant growth in tumour size. It was only a 1.5mm increase in size, within the margin of error for readings, and not enough for me to have to stop the Kadcyla. That would only happen if the tumours had grown by 5mm or more!

So I am now back on track with my Kadcyla every three weeks, will have more scans in May and hopefully that treatment pattern will continue for many months to come.

A complaint letter has gone to the hospital, urging that measurements are included in all scans as a matter of protocol so even if someone mistakenly uses a word like ‘significantly’ in future, it will then be qualified by actual size, which can tell a very different story. As we can personally attest, the use of the word ‘significantly’ was utterly shattering, not only for us but for family and friends too. It opens the door to a journey I know I will have to make at some point – but I’m not ready to walk down that road yet!

Cancer is a draining condition which screws with you physically, mentally and emotionally. Your confidence is shattered. You feel incapable of making the smallest of decisions and for months when your life is on hold while you are poisoned by chemo, scarred by surgery, and burned by radiotherapy. But you can come out the other side – battered and shattered – but stronger than you ever believed possible.

Living with cancer has made me realise how much my confidence and self-esteem is and was wrapped up in my work. Returning to my previous role in a consultancy after my secondary diagnosis was simply not possible as then support and flexibility simply wasn’t available so I work for myself now. I can’t deny it has been an almighty struggle at times because my confidence was (and sometimes still is) so low. I’m therefore incredibly grateful to my lovely, lovely key client (you know who you are SEM) for sticking with me over the last 18 months, for giving me a contract when you really didn’t know if I would be up to the job, and for being so understanding when each new curve ball has come flying in my direction.

By keeping my brain active and working in the field I passionately believe in – education – also helps define me. Not only is it vital financially but it means I’m not just a cancer patient.

It is so easy to become overwhelmed with the illness. It is the first thing I think about when I wake up. Do I have any hospital appointments today? Is it bloods? Scan? Treatment? Results? Lymphodema massage? Do I need to start taking prunes and Fybogel today because anti-sickness medication makes me constipated? (Oh yes – I even put that in my diary or now I will suffer the consequences!) It is always there at the back of my mind – and often at the forefront too, affecting our choices. When can we go away, where, how long for?

I’ve come to realise that I also perform better if I’m around other people when I’m working – it keeps me on track – rather than hiding away at home where there are simply too many distractions. Huge thanks must therefore also go to my friend Karen who has offered me a desk in her new office, where I go and annoy her and her team a couple of times a week. Just being with people in a work environment boosts my confidence and lifts my mood, so much so I even spent a couple of hours ‘in the office’ before I went for my chemo last week. How’s that for dedication?!

So there we are. If you’ve made it to the end of the missive then congratulations, go have a drink, you certainly deserve it. Those of you on Facebook will know that the last few months have not been all doom and gloom. I love life and intend to be around as long as possible to enjoy every minute of it. I am cheerful and I do post about the good times, of which there are many. I’m the epitome of bouncebackability 🙂

If I’m quiet for a few days I’m probably just sleeping – something I’ve become an expert at – but also something I’ve come to understand and accept that sometimes it’s just what my body needs.

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What price my life?

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I’ll start by giving you all a laugh with these photos that hubby Ray took when we were on holiday in Majorca in September. A very sudden – and dramatic – downpour gave me the opportunity to dance in the rain!

I took full advantage of the deluge without thinking what I would look like, in my sack cloth of a dress which I only tend to wear at breakfast on hols, without my fake boob, and I’m not convinced my hair had seen a brush that morning either. Definitely a case of striking while the iron was hot!!

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When I last posted I was a ‘Stable Mabel’ – and I still am as I haven’t had my next round of scans yet. They’ll be in two weeks time with the results before Christmas. I’ve no idea what they will be – I feel fine – apart from the obligatory tiredness – but, as I’ve learnt over the last few months, that means nothing with this condition. Pain can also mean the drugs are working – but a lack of pain doesn’t mean they’re not. We hope for the best but expect the worst. Not a fun way to exist but the most sensible mindset.

We’re currently coming to the end of a lovely week in Lanzarote. We’re making the most of the time while I’m well with regular short breaks (basically every three rounds of treatment and a set of stable scans) which my oncologist is happy to sanction – as long as my blood test just before travel shows I’m strong enough to go. Not much has changed with what we do on holiday. I need to have more breaks when we go out for walks (I can spot a bench at 50 paces!) and sometimes I do have to give in and get a taxi back to the hotel but only after I’ve done a good long walk and am too tired or too breathless. I’m not proud or stubborn and know my limitations so hop in a cab to ensure I can make the most of life.

September was lovely, with our trip to Majorca, but October was a bit of a struggle. Physically I wasn’t great with a cold and then a urinary tract infection, which are more difficult to shake when on chemo and your immune system is shot, and I’ve learned that feeling physically unwell makes it much harder to cope psychologically.

I also had to contend with a change in some side effects from the chemo. A pattern had developed where I pretty much knew to expect around four days of diarrhoea starting three days after my treatment so could plan my diary accordingly. But, just when you think there’s a pattern you get thrown a curve ball – and mine was a nasty case of vomiting and nausea which hit the day after my last treatment. The actual sickness was confined to the first day (but happened in a theatre car park – fortunately it was dark and wet so my misdemeanour wasn’t witnessed by anyone and the evidence was washed away!) but the nausea last for about five days. My lovely oncologist has prescribed IV anti-sickness drugs for next week’s round of treatment so hopefully that will do the trick.

I also spent a lot of October feeling very angry about things – not a healthy place to be mentally, but fortunately I see an amazing counsellor who helps me work through things.

October is a hard month for many of us with Secondary Breast Cancer (SBC) as it’s breast cancer awareness month so everything is pink and fluffy – not descriptions anyone with SBC would use to describe how they feel much of the time. The emphasis is raising funds for research into breast cancer but a miniscule amount (around 3%) is spent on SBC. Given that 30% of women with breast cancer will develop SBC, from which they will die, it seems very unbalanced.

A number of campaigns also annoyed me last month. A posh clothing chain launched a jumper to raise money for Breast Cancer Care emblazoned with the word Lucky on it.  Even women without breast cancer were questioning the logic in it – “Oh, yes. I’m lucky not to have breast cancer” etc etc.

M&S launched a gorgeous range of underwear, again raising money for BCC. The promotion inferred the range was for post surgery patients but on investigation only one bra is suitable for those who’ve had a mastectomy, and it wasn’t available when the promotion started! They coupled that with the social media campaign #showyourstrap, encouraging women to take pictures of their bra straps and donate money to BCC. Again, it beggars belief who comes up with these ideas and it was countered head on by the Young Women’s Breast Cancer Network who launched #showyourscar, with members posting images of their mastectomy scars, illustrating the reality of breast cancer.

And finally, during October, many of us were campaigning for Kadcyla (and other drugs) to be kept available on the Cancer Drugs Fund list. The threat was it would be removed from November 4th and no longer be available to new patients. Those of us already being treated would not be affected but we were fighting for future sufferers. A petition was successful, a new agreement on price was agreed and Kadcyla will remain on the list – though it will not be available routinely on the NHS, and is not available in Scotland, Wales or Northern Ireland, so the fight for wider access continues.

Kadcyla is an amazingly effective drug – but it comes with a hefty price tag from Roche, the pharmaceutical company which created it. £90,000 per year is the price which is bandied about – though we know that’s not the price that’s been agreed with NICE, it likely to be nearer half that. I’m sure people who read about the drug will wonder how Roche can justify charging so much. It does help explain their £9billion profits last year!

It’s hard to read the media reports about it too as Kadcyla is deemed an ‘end of life’ drug, prolonging life when all other options have been exhausted. The average is 9.6 months but that is massively unrepresentative of reality as many women are treated successfully with Kadcyla for many months, even years.

I’ve been on Kadcyla for 7 months already and don’t have any intention of going anywhere soon – and I hope no one begrudges me the funding for the drug which is keeping me alive and well enough to work, care for my family, spend time with friends and make the most of my precious life.

I’m living life to the full, albeit with a price tag around my neck – a very expensive one!

I’m a ‘Stable Mabel’….

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I’ll cut to the chase as it’s been weeks since I posted and obviously things weren’t great when I last updated you all.

As many of you know through Facebook, text, or email the bone scan and CT scan results I got two weeks ago were as good as they possibly could be and I have joined the ‘Stable Mabel’ club – the moniker we proudly proclaim on the Secondary Breast Cancer online forum I’m a member of when nothing changes.

For anyone living with Secondary Breast Cancer (SBC) remaining stable is as good as it gets. That’s all we want (and if by some miracle there is a drug that improves things, even a tiny bit, for any one of us, we all celebrate – wildly). But we know that we are not going to be cured. I am not going to beat cancer. I am going to be living with it until it kills me (that, or I get run over by a bus!)

So for me to be a Stable Mabel really is as good as it gets – and I can’t tell you how happy that makes me J

Going forward my treatment remains the same. Three more rounds of the wonder drug Kadcyla (a combination of Herceptin and chemo) – once every three weeks, plus my bone strengthening injection (Denosumab) every four weeks, and then another set of scans.

Before each injection and infusion I have a blood test the day before to check various things – my liver function because the Denosumab can damage the liver, my white count in case it’s too low to have the Kadcyla, and then there’s the echo of my heart every 12 weeks because the Kadcyla can damage my heart, and a dental check every 12 weeks because the Denosumab can cause my jawbone to disintegrate and teeth to fall out. Throw in other appointments – oncology consultant and then the scans after every three cycles of Kadcyla and I’m at the hospital most weeks at least once. But I am not complaining. I have the most amazing team looking after me and for that I am immensely grateful.

I can’t pretend the last month has been easy by any stretch of the imagination. In fact I think it’s been the hardest since this whole journey began in November 2014.

Four weeks ago today I lost someone who had become an incredibly close friend over the 16 months I had known her. We met when I joined the local breast cancer support group and from the first moment I was in awe of Julie’s courage and beauty (inside and out). She had already been through some much but in November last year Julie was also diagnosed with SBC and we became a lifeline for each other – crying, laughing and often just ranting at the unfairness of it all. We got each other through the toughest of times and all I wanted for her was to have as much time as possible with her lovely husband and three wonderful children (4, 9 and 11).

Julie had such plans for the summer holidays, for forthcoming birthdays, and for Christmas, knowing after her latest scans and diagnosis in February that these would probably be her last. She was doing well, on an oral chemo, but kept getting dreadful headaches which nothing could touch. Nothing showed up on brain scans (the greatest fear for anyone with SBC) but Julie collapsed, was put on life support and died suddenly. I am so glad I got to see her in intensive care the night before because, quite honestly, if I hadn’t I don’t think I would have believed it and would have found it even harder to cope than I have. We went from bantering on text about when she was escaping from hospital on the Thursday, to her being on life support on the Saturday.

I am so sad and angry that my lovely friend didn’t get to do all the things she had planned – and also didn’t get the time to leave everything as she wanted for her hubby and children.

She gave me a cushion the last time I saw her which says “When it rains look for rainbows and when it’s dark look for stars.” I will and I’ll know she’s watching over us all and that she’s one of those shining stars. I’ll treasure our friendship forever and try to be as positive as Julie always was.

Julie’s death, the side effects of my treatment (mainly chronic tiredness and fluey symptoms), and one of my occasional spells of depression have made this last few weeks incredibly hard, both for me and my amazing husband who is, as always, an absolute bl**dy saint.

I gather my energy, plaster on a smile (and a bucketful of make-up) and get on with things but he is the one that lives with the reality of the situation. Of me in pieces when I get home (or even just into the car and we’re alone) when the mask slips and I dissolve into a weeping wreck. I tell him often how much I love him but am just putting it out here too. This is not just my fight, it is his too and I couldn’t hope to have anyone better or stronger in my corner.

As time goes on I realise that my life now is going to be punctuated by love and loss. Not only have I lost Julie but two other members of the local support group who also had SBC have also died over the last four months. There were four of us and now there is just me. Three ladies from the online forum have also died in the same period.

My new diagnosis has also meant changes to how we plan our lives. Anyone who knows us knows we would have holidays planned and booked years in advance (mainly to get accessible accommodation). We did have great plans for an amazing holiday to Australia at the end of this year but we have had to cancel that, losing money in the process, because I am no longer allowed to fly long haul. It’s just short flights for me from now on – a maximum of four hours – because of the progression in my lung. Long haul means higher altitude and increased cabin pressure which puts me at more risk of lung problems and DVT.

I also need to stop buying tickets for things because I have learned that I am often not well enough to go to things (I’ll watch on the telly instead!) and, because of the three monthly scan cycle, we have to work any potential holidays into that as my oncologist wants me to have had a stable set of scans and three cycles of Kadcyla before any foreign travel. Lastminute.com is going to be coming into its own!

I was so fed up of a diary with so many things crossed out (including Australia) that I have bought a new 18-month academic one and am only writing in things for the coming 3 months in pen. Everything else goes in pencil until nearer the date and if we can’t do it, it gets rubbed out, rather than remaining with lines through as a permanent reminder of something we’ve had to give up!

Apologies for this being a bit of a ‘down’ post – thank your lucky stars I didn’t try writing anything two weeks ago! I’m as well as I can be, it’s been a struggle over the last few weeks, but I’m thinking positive and focussing on the future (well the next three months at least!)

Thanks as always for your amazing comments and messages and apologies to those of you who have been in touch and who have haven’t replied to yet. It’s been tough but I’m getting there and will be respond.

How I feel pretty much all of the time!

How I feel pretty much all of the time!

Appearances can be deceptive….

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I’ve been meaning to update this for weeks (OK months) but, quite frankly, life has been getting in the way. Until the end of March I was busy getting on with life – working two days a week for my lovely PR clients; exercising regularly (I love Aquafit!) and generally enjoying life to the full.

Ray decided to take early retirement in March so we can spend as much time as possible together, doing all the things we planned to do ‘in the future’. My future is now and we can’t put things off so we went in to full-on planning mode with trips to Guernsey and Majorca to see friends booked, and then a mammoth 7 week trip ‘Down Under’ planned for December/January with Hong Kong, LA and San Francisco thrown in for good measure (with permission to skip one Herceptin treatment). 

We enjoyed a fantastic cruise at the end of March and then on April 14th our world came crashing down – again.

Routine scans which I’d had before we went away show the Herceptin alone is not holding the cancer at bay. Despite looking great (as you can see from the photo above!) and feeling really well (apart from the tiredness that goes with the territory) two of the three vertebrae in my spine have deteriorated, there is a new cancerous nodule on my lung and two other ‘areas of concern’ – my right shoulder blade and an area between two of my ribs.

To say the rug was pulled out from under us is an understatement. Not only was it pulled out, but it sent me somersaulting across the floor and crashing into a wall. We were – and still are – in shock. We are not naive and knew that at some point the Herceptin would stop being effective but simply didn’t expect it to be this soon. I have met and read about ladies who’ve been on Herceptin for years (in one case 11!) so to be on it for less than 12 months is a massive blow.

Fortunately for me there is a Plan B. Thanks to the Cancer Drugs Fund I have been granted funding for Kadcyla – the ‘cruise missile’ of cancer drugs for HER2 positive advanced breast cancer and so, three weeks on, I am back in the chemo unit, hooked up, and visualising the Kadcyla, travelling through my system and seeking out the evil cells before obliterating them! 

Kadcyla is Herceptin with chemo embedded in it and so there could be a range of side effects – but then again there might not be so I’ve avoided reading the three pages provided and will simply wait and see what happens. I’m also being given a different, better, bone strengthener, Denosumab, today and that too can cause side effects so it’s a bit of a lottery as to which I might get and what might have caused it! (You can read more about Kadcyla here: http://www.breakthrough.org.uk/blog/kadcyla-patients-need-better-access-life-extending-drugs-1)

As with last year’s chemo I do have to be careful about the risk of infection as that can impact on my blood count and determine if I can continue treatment. Sadly this means no more Aquafit (or swimming, jacuzzis, hot tubs etc). I’ll also be getting some advice next week from my oncologist about what exercise I can do, because of my spine, but I think I will be pretty much restricted to walking, and not much else.

Kadcyla is hugely expensive (£90,000 for 14 months’ treatment) so I am incredibly grateful to get the funding form the Cancer Drugs Fund. It’s not licensed by NICE yet as there is a battle between the pharmaceutical company and NICE about the price and the perceived cost/benefit analysis. Kadcyla only went into clinical trials in around 2011, with the aim of extending life for a number of months. It’s actually been hugely successful with ladies surviving on it for a number of years – working and living ‘normal’ lives (as normal as they get at this stage anyway!) 

So, although it’s been a case of one step forward and about ten back, I’ve here, with the best possible drug regime and care, and the love and support of amazing friends and family. 

Our plans for this year continue. Australia has a slight question mark hanging over it as it will very much depend on how I respond, what the scans show, and whether I’m allowed a break in treatment.

Three weeks in from the new diagnosis it still seems unreal. I haven’t had any pain at all so it makes it harder to accept. I know I should be grateful for that, but my body is literally dying from the inside, and there are no visible signs. 

I am bouncing back and thinking positive but will readily admit that this time round I’ve felt very, very angry, and upset. Ray and I have cried together – and separately – but ultimately are so lucky to have each other. We laugh a lot too, something I hope we never lose.

Thanks to everyone who has been in touch over the last three weeks – and apologies if I haven’t replied yet. This being ‘ill’ business is so time consuming! We’re hugely grateful for your love and support.

What a difference a year makes…..

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As Christmas and New Year draw closer I’ve been reflecting on the last 12 months and how much life has changed.

This time of year will now always be punctuated by ‘anniversary’ reminders – it was a year ago on November 26th I got my diagnosis, a year today (December 23rd) I saw my oncologist for the first time, and January 13th (three weeks today) since I had my first round of chemo. It’s somehow fitting that I’m starting this, on my phone, while in the chemo unit having my regular Herceptin and Zometa treatment. I come every three weeks and it’s now like home from home. I know all the staff, they know me, the volunteers know how I take my tea, and we all laugh our way through these regular treatment sessions, making the best of the situation.

My latest MRI and CT scans are good – or as good as they can be. There’s no deterioration in my condition so I stay on the current treatment regime. I’ve read about a lady who’s just had her 180th round of Herceptin (I’m on number 13) and she is still going strong – 10.5 years after being diagnosed with secondary breast cancer. That gives me hope, as do the ladies I’ve met at a group in Oxford specifically for those living with secondary breast cancer. Again the longest surviving member is about 11 years post diagnosis, having had pretty much every targeted treatment there is, clinical trials and a couple of near death experiences. It gives me determination and hope to meet these amazing women, but also a reality check as to what the future holds.

I am struggling to accept the tiredness that comes with my situation – I look OK so why don’t I feel better? It’s par for the course and a result of three things:
1) the treatment to date – chemotherapy (which poisons your body), radiotherapy (which burns it with radioactive beams), surgery (a major shock to the system as well as the general anaesthetic);
2) the ongoing treatment which has a range of side effects from aching joints, fatigue, depression to cold symptoms and weight loss or gain (you can guess which way the pendulum swung with me!)
3) and living with the secondary diagnosis which is a psychological drain – you can never be sure how well you are going to be for how long. Planning becomes a challenge. I’m wary of planning too much in case the situation changes, but that feeling competes with a desire to do as much as possible and visit as many places as possible, as soon as possible, while I still can.

Since my last post the main change has been me returning to work, but as an independent PR consultant working from home. I’m planning to work a maximum of 3 days a week so in the New Year need to be disciplined and organised – that’s one of my New Year resolutions! I even went to see an accountant last week so I get on top of my invoicing and expenses. Bless him, he had to draw a diagram to help me understand tax self-assessment and the fact you pay in arrears and advance – I did explain words are my strength, not numbers!

The other changes recently are physical – I now have very curly hair! It’s got a mind of it’s own and Ray says it’s like waking up with a different woman every day, we never know what it’s going to do from one day to the next. I’m also the proud owner of a weighted fake boob and, two weeks on, I still get a thrill when I look down, or glance in a mirror, to see ‘matching mounds’. Since my op in June I’ve been lop-sided and pretty much stuck to wearing a range of loose-fitting tops. I was issued with a ‘softie’ fake boob but it was so light it ended up six inches higher, creeping out of my top so, on the few occasions I wore it, it usually got whipped out and stuffed in my handbag! Various of us who underwent surgery around the same time were advised to weight them down with different things – buttons and marbles among the suggestions – but I imagined walking along clunking so gave that idea a miss. The proper prosthesis is weighted so stays in place and looks great, a huge relief as I decided early on not to undergo reconstruction. Psychologically I don’t have a problem with having a boob missing, and the reconstruction is a far longer and more complex operation with two wound sites, so I didn’t seriously consider it.

I’ve unfortunately developed lymphodaema – not uncommon in breast cancer patients who have also had lymph nodes removed as the lymph doesn’t drain properly. I now boast a right upper arm which is 8cm bigger than the left, more solid, and gives me a painful tingling sensation down my arm into my fingers. I’m doing self massage on a regular basis, wear a compression sleeve every day and Ray wraps special tape around my arm and bank to try to encourage the lymph fluid to drain into different nodes but it’s a very slow process and there’s guarantee it will work. One alternative is a pioneering microsurgery operation where the lymph glands and nearby veins are severed and stitched together – if I win the lottery I might consider it as it’s only available privately at the moment 🙂

I look back at photos from last year and feel like a different person. So much has happened. I look different, feel different, and am constantly having to revise my expectations and ambitions – something I’m not good at yet, but I’m getting there! I’ve also met some incredible people through my treatment – amazing medical professionals, and many, many lovely patients, and cancer survivors, who make this crazy, challenging journey an easier path to navigate.

My thanks to you all for keeping up to date with me on here, and for all your lovely messages. Wishing you all the happiest Christmas and New Year possible, and apologies to those who received an email earlier today regarding an update. I tried to save this blog post half way through writing but managed to publish it instead (numbers and IT are not my strong point!) Hopefully this version makes more sense 🙂 xxx

The gift that keeps on giving…..

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My wrists have been well and truly slapped (self flagellation rules!) because it’s been so long since I updated my blog. Huge apologies, and thanks too for all the comments, and messages, my last post prompted.

I’m not going to pretend the last few weeks have been easy, they haven’t, and that’s one of the reasons there’s been a gap in posting. I’ve had a bit of a low spell and found it hard to summon up the energy or inclination to write and also, quite frankly, didn’t want to inflict my misery on anyone else!

Before succumbing to my spell of being ‘down in the dumps’ I had some amazing experiences over the summer, the highlight of which was a reunion in the North East where a gang of 14 us who were at senior school together got together in a seaside village. I hadn’t seen any of them (bar one) since leaving school 26 years ago so I was incredibly nervous, but it was fantastic. I had such a good time and felt so relaxed and comfortable (or maybe that was just the wine!) that I ditched my wig at some point in the evening. It re-appeared in a photo on someone else’s head – but neither of us remember that, so it’s fair to say a good time was had by all, and plans are already afoot to make it an annual event 🙂

Another highlight of the summer was the Relay for Life in Aylesbury – a 24 hour fundraising event – which I bored you all about on Facebook (including the photo of me in the Superman Onesie!) but we revealed last week that the 2014 fundraising total was a staggering £103,166.42. Thirty-two teams with more than 500 members raised funds both via the Relay itself, and also through other events over the year, with all money going to Cancer Research UK. I helped out with publicity this year and am now on the committee for 2015 so I will be boring you even more in the months to come!

There have also been many lovely days out – a Saturday in Regents Park with my sister-in-law, an overnight seaside stay with Ray’s cousin and his wife, and a brilliant day in Southend to scatter my dear mum and dad-in-laws ashes, full of love and laughter as they were reunited. Tom has been in various places over the last 13 years – buried in the garden, a plant pot, and latterly kept in a wardrobe – but following Jean’s death in May we took both sets of ashes, mixed together, to their favourite place, scattered them off the end of the pier and then had a fish and chips at Clarke’s and a Rossi’s ice cream. A perfect send off to one of the sweetest, kindest couples I know.

In terms of treatment my Herceptin and Zometa infusions have carried on every three weeks, as they will do indefinitely, and I’ve also had 15 sessions of radiotherapy. I was lucky to have the 8.30am slot most mornings which meant an early start to get over to Oxford, but at least I got a parking space. By the time I came out at 9am there were often three cars queuing up for an empty space and I know ladies with later appointments who had to go an hour early to make sure they got parked in time for their session.

The treatment itself was downright strange, lying on a metal table (calling it a bed would have exaggerated its size and comfort), topless, with my arms above my head, balanced in arm and wrist cuffs. If I’d seen this anywhere other than a hospital I’d have thought it some bizarre S&M contraption!

At a planning meeting I was ‘marked up’ with three tiny tattoos – one on my chest and one on each side – and these were used to line me up on the machine each day. The lining up involved lots of manoeuvring me by pulling a pillowcase underneath me back and forwards, and a fair bit of prodding and poking of flesh to get the tattoo dots lined up for the lasers. The zapping itself is over in a matter of minutes and then you jump down, slap on cream or gel and carry on with the rest of your day.

The main side effect of radiotherapy is the skin burning, something that continues for 2-3 weeks after treatment finishes (basically you continue to cook!) I had 15 strong sessions as I’ve decided against reconstruction, whereas those considering further surgery have 25. I also had a special pad (a bolus) on my chest during radiotherapy as the cancer had been in the skin as well as the tumours and the bolus ensures the skin is completely zapped.
I religiously applied Aloe Vera gel to my skin for the two weeks before treatment, and since finishing on August 26th, but as the radiotherapy continued to work I developed a horribly burned patch of skin under my arm which, quite frankly, made me really miserable. The pain was worse than anything I felt after surgery, and proved really difficult to heal. I now realise due to the position and shape of the burn that I missed that patch with the gel, not knowing the treatment was going to affect that area 😦

After various (conflicting) suggestions from nurses and doctors which all failed to help I returned to slapping on loads of my trusty Aloe Vera, topping with a non-adhesive dressing and then wearing a vest style top with sanitary pads tucked in to keep it protected without having to use tape (which was tried earlier in the week by the medics and only resulted in taking more skin off – which led to more blisters!) Thankfully this approach has led to a massive improvement in the last few days and meant we have been able to escape on holiday, something that looked in doubt at one point.

My hair has started to sprout and I even had to have a tiny bit trimmed off the sides this week. I’ve also had it tinted a brownish shade because I hated the dirty grey that was growing through. Hair everywhere else has started to grow too – it feels like my body is coming back to life after a period of hibernation, though some side effects are still much in evidence:
1) I’m still suffering from chemo brain – although my memory is improving thanks to supplements I’m taking
2) the Herceptin causes puffy hands and feet so I’ve had to have my wedding and engagement rings increased by three sizes (and that’s my good side!) and am limited to a small selection of shoes that still fit
3) I’m plagued by pins and needles in my left arm and hand much of the time and
4) have a swollen, wobbly midriff, even though I’ve lost weight from other places!

When my hair started to grow I also developed a covering of fine, downy hair on my face. Thank goodness for Google – this is entirely normal apparently – and I escaped lightly as some women develop it on their hands and chest too! The Herceptin has also given me aching joints (drinking Aloe Vera gel with glucosamine and chondrition has helped tremendously) but over all I’ve come to the conclusion that cancer treatments really are a gift that keeps on giving!!

Towards the end of my radiotherapy, and for 2-3 weeks after, I was very emotional and ‘down in the dumps’ and I realise now it was a combination of many things. I recovered well from the mastectomy but the reality of the incurable diagnosis really hit home. Physically the radiotherapy was tiring – mainly the travelling backward and forward to Oxford each day (Ray, bless him took unpaid leave to drive me to 8 out of the 15 sessions), and it all also coincided with my contract finishing at work. Even though I’d been on sick leave since January 13th, I’d kept in touch with colleagues, checked my work email, responded to appeals for ideas on projects, and generally kept myself ‘in the loop’. The decision not to return is entirely mine due to my prognosis, but not to be employed was a very strange feeling as I’ve never been out of work since the day I left university 26 years ago. It really shook my confidence (daft I know) as the future is bright and exciting – more of which will be revealed next month!

As I type this I’m actually sitting on a plane, headed for Lanzarote, for what I KNOW will be a magical 10 days with my beloved Ray. He deserves this holiday so much, having been an absolute saint over the last 10 months. When my raw, blistering skin was at its worst last week we really did think we might have to cancel but we’re here, on the plane, and it is the most fantastic feeling 🙂 It will also be the longest time in months with no medical appointments – a real novelty – and I won’t dwell on the fact that just a few hours after we land I’ll at the GPs for blood tests prior to my next round of Herceptin and Zometa the following day (then my next CT, wound aspiration, prosthesis fitting, and echocardiogram in the space of three weeks!)

Most of you know how much we love the island and we’re returning to Bungalows Nautilus for what will be our 9th (we think) visit. We love going to new places but staying there is like home from home and we can relax from the moment we arrive. I’ll sign off now as we’ve just been told to buckle-up for landing and promise not to leave it so long before posting again (I seem to remember I might have said that before!) I’ve read a book recently written by an American lady with breast cancer who blogged EVERY day – often very short updates – to let everyone how she was. Be thankful I haven’t inflicted that level of contact on you – you really would have got fed up with me very quickly!

PS – technology prevented me from posting this until now, one day into our holiday, so I can tell you it’s everything we hoped for and more. It’s 11.40pm, I’m sitting outside, enjoying the moment, revelling in the fact we have another whole nine days before we fly home. Life is good.