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!

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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.

All change!

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Well, the eagle-eyed among you will have spotted a slight change in the title of my blog which gives you an indication of what this post is going to be about. There’s no easy way to say it so am just going to plough on and those of you who have I have spoken to or see in the last week or so can pretty much skip right to the end!

I’ve recovered incredibly well from my op but we had a bit of news shortly before my surgery, which has taken a little time to get our heads around.

When I was initially diagnosed in November I was told there were ‘indeterminate’ spots on my lungs, as well as the breast cancer. The spots may or may not have been cancerous (apparently lots of us have completely harmless spots and marks on our lungs) but if they were then the chemo would treat them.

The recent scans show those spots have now been ‘resolved’ – ie they were cancer and the chemo has had a positive effect on them. Unfortunately the scans also show cancer in three vertebrae in my spine. These were not present on the bone scan in November and my oncologist believes they were simply too small at that stage to show up on the scan.

They cannot ‘cure’ the cancer in my spine, it is something I will live with, hopefully for years, and there are new treatments coming on stream all the time. I’d already started to have Herceptin every three weeks (because I had protein cells in my cancer which was making it divide and spread more rapidly) and was due to have this for a year. I will now be having it every three weeks indefinitely as it will treat the cancer in my spine. I am also having another drug, Zomata, every three weeks to help strengthen my bones and push calcium into them as the cancer weakens them and could cause fractures, and am also taking high doses of calcium in tablet form each day. As and when the Herceptin/Zomata combination stops being effective there is a raft of other treatments to try and, as I am becoming more and more aware, there are new developments every day where cancer treatments are concerned.

I’ll start having the radiotherapy for the breast cancer in a few weeks time as planned, and they may use radiotherapy on my spine in the future too. Have also been warned that the cancer spots in my lungs will come back at some point and that will mean more chemo. Not something I will look forward to, but it could be years before that happens (fingers crossed!)

It’s been a monumental shift in mindset from thinking by the end of this year I’ll be cancer free, to accepting that I will be living with it permanently, but I am absolutely fine – my outlook is that it could have been worse, as this is not a terminal diagnosis. I’ve also met a couple of ladies locally who are in a similar position – both with secondaries in their spine – and they are fighting on, after 5 and 8 years respectively.

The news has obviously crystallized issues such as work/life balance in my mind and I have made the decision I will not be returning to my previous full-time job, as I need a more flexible and less stressful lifestyle, plus I’ll be having blood tests and treatment every three weeks. I hope to continue to work for Communications Management a few days a month as an Associate, as well as securing my own clients – and I might even do some radio, 15+ years after being behind the microphone!

So there are exciting – and scary times ahead but, as Joseph Campbell said:
“We must be willing to get rid of the life we planned so as to have the life that is waiting for us.”

First thing on the agenda is the Relay for Life this weekend which Ray and I are taking part in, raising money for Cancer Research UK. If anyone would like to sponsor us then please follow the link below. We are so grateful for any amount, however small, but are also conscious that many people sponsored my lovely friend Becci when she ran the Macmillan 10K in my name so please don’t feel obliged to donate again!
http://relay.cancerresearchuk.org/site/TR/RelayForLife/General?px=1072432&pg=personal&fr_id=1363

More will follow soon but until then thanks to everyone for their on-going support.

From hibernation to heavenly cupcakes!

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HUGE apologies again for the lack of posting – I am still alive and well!!

My life is definitely split into very different phases during the three week treatment regime I’m under – a third of the time I am too exhausted to do very much (including posting blogs and answering emails), part of the time I am having treatment, medical appointments and tests, and the remainder I am enjoying feeling well and busy doing everything that has piled up in the preceding days, seeing friends and family, and spending quality time with my hubby, so I don’t get the chance to update then either!

BUT, here I am on the morning of chemo round 4 (of six) so I am half way through the first phase of treatment and boy, was the tiredness worse again this time. The chemo itself was a breeze, had the 9am slot at the chemo unit and was done and dusted in 1hr 45 mins – on the two previous occasions we’d been there between 4.5-5 hours! The remainder of that day I was fine and the Tuesday I was on my post-chemo high with so much anti-sickness meds in my system I felt I could take on the world. I knew this would not last and sure enough, by the Wednesday lunchtime, I could feel myself tumbling into the pit of chemo exhaustion in which I languish for around a week. Poor Ray got to see what I am like when he is at work on days 3-10 after treatment that first weekend (some days I make it out of bed to get dressed 10 minutes before he arrives home!). On the Saturday we went out for lunch with plans for a wander round a garden centre. I made it through lunch – just, without landing face first on my plate, but we then headed home where Ray packed me off to bed at 2pm, waking me at 6pm. I had not stirred and was totally unaware how much time had passed – exactly what I am like when he is at work. On the weekends of rounds 1 and 2 I had been tired but nothing like this time – it’s just the cumulative effects of the chemo in my system – so goodness knows what I will be like this time!

The other side effects have not been too bad. My mouth gets sore and dry and I can’t face hot drinks so drink squash for about 10 days, my eyebrows have thinned out a bit but it’s not noticeable as they were fairly bushy to start with (no threading or waxing of those needed in the near future!) but I have lost a lot of my eyelashes. If only every other one or two had come out it would be easier to mask but no, I have gaps then lashes, gaps then lashes! With careful application of mascara, plus amazing stuff like mascara that adds extra fibres, I can get away with it – not sure how much longer for though. I’ll then be resorted to the stick on variety!!

For the next three treatments I may have to cope with other, new side effects as well as the tiredness as I now swap to a different chemo drug – Docetaxel. I won’t go into details about the possible side effects as I am convincing myself I will not get them (fingers and everything else crossed!) but to be on the safe side have made sure we have plenty of Immodium and painkillers on standby!!

I learned at my follow-up appointment after round 2 that my cancer is HER2 positive which means my cancer cells have too much of a protein called human epidermal growth factor receptor 2 (HER2) on the surface, which stimulates the cancer cells so they divide and grow.

The ‘wonder drug’ Herceptin is a targeted treatment which locks on to the HER2 protein, blocks the receptor and stops the cells from dividing and growing so, from next month, I’ll be having that by drip every three weeks for a year. Because my veins are so poor they will be leaving my PICC line in to administer the Herceptin so Penny (nickname for my line) and I are destined to be inseparable for months to come!

The key side effect of Herceptin is possible heart damage so I’ll also be having regular echocardiograph tests to check its function. Have had the first, a pre-treatment, base-line check and my heart is great (always good and reassuring to know!), I have another booked for April 27th, three weeks after the first treatment, and will then have one every three months. Good news is if it does cause a problem, research shows the heart recovers and you can continue with the Herceptin after a short break. At £22,000 per year for the drug I am certainly getting my money’s worth out of the NHS!!

I also learned at my check up on Wednesday I have lost 8kg in weight (1st 3lbs!!). I am ‘eating clean’ pretty much and following regimes developed by two women (Professor Jane Plant and Bernadette Bohan) who have both had breast cancer and developed diets they believe helped them combat the disease. One in particular is based on research into why there is such a low incidence of both breast and prostate cancer in Asian countries and one of the key determinates seems to be diet. Lots of fresh fruit and vegetables and very little dairy so that’s what I am doing. Eating well to help my body fight the disease which is also helping me lose weight (despite all the lunches I’m having on my good week!)

It’s amazing how quickly your tastes change. When my mum’s hospital appointment last week was delayed by almost two hours I was ravenous so went to the Costa Coffee in Stoke Mandeville Hospital. Had absolutely no desire for the cakes, pastries or sandwiches I would normally have plumped for and instead picked the carrot and cucumber batons and humous!

I knew I had lost weight (can feel it) and thought it was around 12lbs, which is what my scales were showing – and had been for several days – so when I stepped on them again on Thursday and they still showed 12 I moved them down the hall slightly – down by 14lbs – another few feet and it was 15lbs. Any further and I would have had to open the back door and head out into the garden so have decided they are not a reliable indicator and I’ll stick to the super-duper, highly calibrated hospital scales!

Over the last three weeks I’ve also joined a support group in Aylesbury for women with breast cancer, and survivors. WOW – what an amazing group of women the Breast Friends ladies are. Everyone has a very different story of symptoms, diagnosis, treatment regime and recovery and the openness and positivity with which everyone is or has faced their battle is awe-inspiring. Will be getting involved with the group using my professional skills, raising funds – and taking part in – the Aylesbury Relay for Life in aid of Cancer Research UK in July (see http://www.relayforlifeaylesbury.org/) and also drawing on them for support over the next few months.

Never one to rest on my laurels (apart from days 3-10 when I am asleep!) I am also joining the Bucks Cancer Patient Partnership Group which works with the PCT to improve cancer services across the county.

As I was clambering out of my pit of exhaustion my lovely fiend Vicky (personal chef who also provides amazing soups and foods for my rough spells) took me to a cup-caking decorating class which was great fun and meant 2 hours absorbed in something completely new. I was pretty impressed with my creations (see pic below) and they went down well with Ray’s colleagues when he took them into work the following day. I have now become obsessed with cake decorating, have bought lots of piping bags, nozzles and decorations and am going to thoroughly enjoy practicing more elaborate creations (one I get a food mixer so I can make proper butter icing!)

During my good week I am also overcome with a need to tidy things – cupboards, drawers, wardrobes etc. It’s like the nesting pregnant women go through before giving birth but I get a short hit every three weeks – almost like I need to make sure the house is tidy before my tired spell. Quite why it meant I tidied the kitchen cupboards at 7am one morning last week I don’t know, and last night at 11pm when I was checking we had enough over the counter meds to combat the possible different round of side effects I ended up emptying the contents of our medicine drawer onto the bed and clearing that out too. Just as well as I don’t think a throat spray which expired on 2010 would be any use to anyone!

During my good spell Ray and I have had two lovely weekend day trips out – to Southend (we so love the sea) and Bourton-on- the Water on Saturday. So good to just get away and be ‘normal’ for a few hours (well, as normal as we’re ever going to be anyway!).  Those of you who know us well know how important holidays are to us and as we can’t book anything at the moment (have had to cancel the two things we did have scheduled for this year) just getting away for a day is wonderful. I do wish there weren’t so many blooming holiday adverts on the telly at the moment though – I have serious holiday envy!!

Last Monday I spent the day with a friend who owns her own company helping her with some PR. How strange it felt to be in an office, chatting about issues, ideas, and giving my view on things – got the brain cells working and reassured me I can still cut it in the work environment! It’s only been nine weeks since I went on sick leave and some time (usually when I’m at the bottom of the pit of exhaustion) I do wonder how/if I’ll ever get back to work. But once the tiredness lifts I’m fine and helping Karen out last week made me realise this is all a temporary blip and by the Autumn I’ll be fit and rearing to go again.

Over the last week have also caught up with lots of friends – from my days on the Bucks Herald 25 years ago (eek!), to my days in radio with both FOX FM and MIX 96, and my current role. I am blessed with wonderful friends and family who are keeping me going through this journey – and I’m also grateful to the new friends I am making on the way.

If you haven’t already had a look then do please check out my amazing friend Becci’s fundraising page. She is running the St Albans 10K in my name for Macmillan Cancer Support and it would be fantastic to give HER as much support as possible too: https://www.justgiving.com/Becci-Cussens1

I’m all set for today. I had my pre-chemo glass of champagne last night – one of a few rituals I have adopted for this part of my treatment. The others are very simple:

  • I wear a beautiful necklace given to me on my birthday by my friend Mags the day I went on sick leave last month
  • I wear a specific pair of earrings
  • I carry my Guardian Angel from Vicky (chef and cake decorator partner in crime!)
  • And take a fleecy pink blanket for the hours in the unit when I’m sitting with my feet up being waited on by the lovely volunteers who bring us drinks, lunch (and in my case mop up after I spill my tea!)

No, I do not wear a pair of lucky knickers – that really would be far too organized! My plain, black, Bridget Jones style passion killers have served me well so far J

Thanks to all of you who read this and the lovely comments you leave. Apologies if I have not been in touch by email, text or phone to reply personally but this cancer treatment business is soooo time consuming!! I get such a buzz when I see someone has taken the time to comment so please realise how grateful I am – you are all lovely people and I am blessed to have you in my life.

Will sign off now and update later in the month. If you have made it to the end of this massive missive you deserve a medal! When advising clients on blogging I have always said ‘little and often’ is best – think I need to take some of my own advice on this occasion 🙂

I feel I should have a sign to hang out now for the coming 10 days – “Fiona is hibernating but will resurface around March 27th!”

Will leave you with this great article from the LA Times (published in January) which is so good and applicable in so many situations – not just a medical diagnosis – but relationship break up, redundancy, basically any life crisis that befalls anyone: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407. Let’s all learn to ‘dump out’!    Image