Cancerversaries, Scanxiety and Bouncebackability…..

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?!

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.

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 🙂
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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.

What price my life?

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!!

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!

From hibernation to heavenly cupcakes!

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 27^th, 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 (1^st 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 27^th!”

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’!   

The chemo fog is lifting…..

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!  

Chemo round 1 – done and dusted!

Well it’s two weeks today since I had my first round of chemo – and this time next week I’ll be preparing for round two. It’s felt like a long two weeks – mainly because I’m living with so much uncertainty and am in a constant state of alert about how I’m feeling, what side effects I’m suffering, am I so unwell I need to get checked out by the chemo unit, what’s my temperature etc etc

The list of possible side effects is vast, so vast I chose not to read about them all in detail, instead checking things out as they crop up. I never read the possible side effects of medication either – am a great believer these things can become self-fulfilling prophesies so it’s better to be mildly ignorant rather than to start imaging you are suffering from all manner of things! I was incredibly lucky and, while suffering from mild nausea for some of the time, I was only sick once, and that was early in week one. I did get a very sore mouth with a couple of ulcers, but that passed off last Thursday, and a very odd tingling sensation in my arms and legs, but again that was temporary.

I did have to pay a little visit to the chemo unit last Thursday as I developed some strange spots on my right arm and right breast (as if I haven’t got enough going on there!) – very inflamed looking skin with spots with a nasty looking yellow head on them. Two nurses and a doctor had a look and remained perplexed – it could be the chemo toxins being expelled from my body, but they hadn’t seen anything like it before so I was despatched home having had my temperature taken (the key indicator something is wrong) and told to ‘come back if they get worse’. Have just noticed two more on my arm today so just as well I’m seeing my oncologist this morning for a check up!

Ray was all for taking photos of the spots so we could plot their progress. He’s becoming quite the amateur photographer, taking pix of my dodgy boob so we can see how the rash and blisters are (hopefully) reducing as the treatment goes on. These pix are then downloaded from the camera immediately and hidden in a folder on my laptop so as not to frighten anyone! I also had photos taken at the Medical Imaging department at Stoke Mandeville in December. The photographer was lovely (a lady thank goodness) and she had me standing in front of a huge white screen just like a commercial photographer’s studio, topless, while she snapped away at different angles. Not quite my Gok Wan ‘How to look good naked’ moment!! 

The key side effect I suffered was tiredness, which left me so frustrated and also hugely guilty. Poor Ray would get in from work and I would literally have done absolutely nothing some days – even last Wednesday I didn’t get out of bed until 3pm! But, after much lecturing from both he and my mum, I accept it’s my body’s way of recovering and I just have to ‘go with the flow’. No one is expecting me to be doing loads of stuff, just because I’m at home and not working, it just seemed never-ending at the time. BUT the chemo fog began to lift late Thursday and on Friday I woke up before my alarm, and lay there fantasizing about a cup of tea. Since the chemo I was completely off tea and coffee, drinking lemon and ginger to combat the nausea and lots of cold squashes. That cup of tea on Friday morning was like nectar! I was also like a different person. My energy levels had soared, my head was clear and I felt normal – and boy did I make the most of it! Popped to Homebase and bought a load of half price plants and created a three tier, cascading display out of an old vegetable rack to brighten up the garden, got my car cleaned inside and out, booked a last minute manicure (chemo shatters your nails so mine were splitting and flaking but are now a short but cheery ‘pink bikini’ colour) and dyed my hair a mucky brown colour so we can both get used to me being darker when my alter ego Chestnut Cassidy makes her first appearance tomorrow when I get my head shaved.

I had been told I would start losing my hair on day 16 after chemo (so Wednesday 29th) but I starting shedding on Friday. Looked down in the evening I realised my top was covered in hair. It also comes out when I brush, or run my hands through it, and I’m shedding like a cat so I know I have made the right decision to get it shaved, it’s driving me mad! One thing I have decided is that whatever colour it grows back in, I’ll be going dark. After about three years of progressively going lighter to cover the grey, wearing the wig, and dying my hair darker again, actually makes me look younger so I’ll be staying dark. It’s not only my head where I’m losing my hair – suffice to say I won’t be needing a bikini line wax anytime soon!

As I was feeling so well on Friday I also did a ring round of hotels and booked a last minute overnight deal at a gorgeous hotel in Southampton for Saturday night – dinner, bed and breakfast for 2 for £99! I would never have believed on Wednesday I would feel well enough to contemplate anything like that so it was fantastic. Those who know me know I am the consummate planner, booking holidays, weekends away, and tickets for events months (sometimes more than a year!) in advance so not being able to plan anything is quite a challenge but now I have a clearer idea of the likely pattern it is fantastic. I know I will have really good weeks, so can ‘plan’ – a little bit anyway. My life is so much more than being a cancer patient so I still plan to take advantage of offers and opportunities as they arise!

Psychologically it’s been very strange to get used to not working. From the day I left university in July 1989 I’ve been continuously employed, with only holidays and the usual ‘normal’ illnesses. When I was first diagnosed I had hoped and planned to work on my good weeks because I absolutely love my job, my colleagues and my clients. Unfortunately it became clear pretty quickly that suggestion wasn’t going to work for my company and, after I’d used up my sick leave, I would then move on to the basic Statutory Sick Pay, so the decision was taken out of my hands. Dropping from a good salary to £86.70 a week is a terrifying prospect at any time but when you’re also faced with a potentially life-threatening disease it’s utterly devastating. Fortunately we have savings, and an amazingly generous family who are supporting us, so I can focus on my treatment and recovery.

Friends and family continue to be amazing and I am just so sorry that things will get worse before they get better and I will need their love and support so much over the coming months. I have a band of personal chefs making us lovely food, and receive a constant stream of texts, emails, and cards wishing me well and sharing daft jokes and photos. Keep ’em coming!!