Living on borrowed time…

Standard

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!
img_2660

Advertisements

What price my life?

Standard

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!!

image

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’….

Standard

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!

What a difference a year makes…..

Standard

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

All change!

Standard

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!

Standard

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

The chemo fog is lifting…..

Standard

Image

Apologies for the lack of posting over the last couple of weeks – two contrasting reasons for my silence! In the run up to my second round of chemo on February 3rd I had an amazing week, full of energy, seeing friends, lots of medical appointments (both for me and my mum) and generally feeling great. In comparison the last week has been one of complete inertia and utter exhaustion! Although I had been warned about the cumulative effects of the chemo I really didn’t expect it to happen so much after round 2. It is also particularly cruel after having such a great week to be plunged into a pit of tiredness that seems never-ending.

BUT the fog is lifting and I’m just looking forward to the coming week where I will feel ‘normal’ before round 3 on February 24th, and I’m determined to be more realistic about the tiredness next time round. My oncologist has also given me the “you have an aggressive form of cancer and we are giving you the most aggressive treatment we can so you will get VERY tired” lecture so I realise I have to accept it and just let my body do what it needs to do. On a very positive note my dodgy boob is already responding to the chemo (oncologist said this might not happen until after round 2) but even after my first chemo the blisters have healed and the rash is receding which is fantastic. Am hoping that the internal effects of the chemo on my tumours will be just as impressive 🙂

Once again my friends are proving an endless source of love and support – messages, lifts to appointments, cooking fabulous meals for us, unexpected pressies, we are truly blessed to have such amazing people in our lives and I will never be able to thank them enough for everything they are doing to help Ray and I. One friend – Becci – has made the amazing commitment to run the St Albans 10K in my name for Macmillan Cancer Support on Mothers’ Day of all days when she should be enjoying some family time with her two little boys and hubby. This is an awe-inspiring effort and if you can support it in any way I would be so, so grateful: https://www.justgiving.com/Becci-Cussens1

One thing I have become aware of since my diagnosis in late November is that barely a day goes by without a story about cancer being in the news. From supposed miracle cures, to the latest research, to devastating personal accounts of cancer battles, usually with very sad outcomes. The statistics on cancer are stark, one in three people will get cancer, and one in eight women have breast cancer.

One of the latest stories that has caused much controversy is the campaign to raise awareness of pancreatic cancer by using terminally ill patients who proclaim they wish they had breast cancer/prostate cancer/testicular cancer instead http://www.bbc.co.uk/news/health-26064830. The adverts at first seem shocking but when you read the statistics who could blame someone with a 3% chance of surviving five years, wishing they had a form of the disease with an 85% survival rate? And who wouldn’t rather have a disease with obvious symptoms, rather than one that can be easily misdiagnosed or dismissed as ‘a bug’?

Personally I feel very lucky to have breast cancer – so much is known about it, so much money has been raised to invest in research and develop new treatments, and I am also so lucky that my GP referred me for investigations the first day she saw me. So often the prognosis is poor because of a delay in diagnosis and so if I can get one message across to people it is to push for a referral if you feel something isn’t right, and if you are a GP then PLEASE refer patients on as soon as possible. If you don’t understand or recognise something then refer it on, that’s what the experts are there for. From the day I saw my GP (a Friday at 4pm) it took just 18 days (12 working days) for me to be referred, seen at the specialist until, scanned and biopsied and to get the initial cancer diagnosis. Research shows this is not always the case http://www.bbc.co.uk/news/health-25274287 and my consultant praised my GP’s actions – so often he sees women who have been given 6, 7 or even 8 courses of antibiotics before referral. As patients we are utterly dependent on the medical professionals to act swiftly – I am very definitely one of the lucky ones.

On a brighter note I’m off to get my second wig trimmed this morning. Razberry Ice Gia (yes, it is spelt with a Z!) finally arrived after a month, but was worth the wait (see pic above). Loads of lovely highlights in it so I can be either Cassidy or Gia when going out. As my lovely friend Mags pointed out, Chestnut Cassidy is my 70s porn star name, while Razberry Ice Gia sounds much more like a rapper so my alter egos are a porn star or rap star – what a choice!