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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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.