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.

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Homeward Bound!

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I never expected to be posting from my hospital bed but here I am, two days after my mastectomy, all set to go home later today.
Am amazed how well I feel – even a few hours after the op I was alert and (quite frankly) relieved to be alive! I’d never had a general anaesthetic so was incredibly anxious (to the point I left my Will strategically positioned at home!) in case something went wrong.

I had two drains in the wound to start off with – entertainingly disguised in doggie poop scoop bags so we could carry them easily when going to the loo – but one came out yesterday and the other is being taken out today before I’m discharged.

The lovely ladies in my ‘Breastfriends’ support group all said the op was a ‘walk in the park’ in comparison with the chemo and, even at this early stage, I have to agree. The chemo did get progressively worse (as expected) and I was blighted terribly by infections because my immune system was so compromised. It felt like a huge milestone to complete the six rounds and my ‘reward’ was a lovely week away – 2 nights in Southampton and 4 on the Isle of Wight. We were incredibly lucky with the weather and my energy levels improved as the week went on.

I persuaded Ray to park me on a bench on the Monday so he could go for a push along the coast as I was still too tired to do much, but by the Tuesday I was walking a fair distance – though I still needed a nap before dinner!

Next stage will be radiotherapy in about six weeks, after my wound has healed.

I did speak too soon about my toenails – in the end I lost two of them and am also losing one thumbnail too. But I have sprouted some fluffy hair (Ray calls it ‘peach fuzz’ as it’s not the real thing yet) and there are little black dots where I think my eyelashes are trying to break back through!

Hopefully my posts will be a bit more regular now the worst side effects of the chemo have subsided and I have more energy and am more alert.

Have been overwhelmed by all the lovely texts, emails, Facebook messages and calls – thanks to you all – I’m a very lucky girl!

Am posting this (hopefully) from my phone and if it works there should be a photo of me on the Isle of Wight – taken at a distance with me wearing sunglasses as I still looked shocking at that point – the post chemo pallor was not a good look!

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The end of phase one of my journey….

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I’ve just checked back and can’t believe I haven’t posted since March 17th – serious rap on the knuckles for me!

It’s been a spell punctuated by lots of highs and a few lows – namely three different infections and three lots of antibiotics, the final one of which (where I had a staggeringly high white blood cell count) followed hot on the heels of my fifth round of chemo and first round of Herceptin and resulted in me not bouncing back as normal and being very debilitated for the best part of two weeks – not fun 😦

I was also prescribed codeine for pain at one point but we discovered, within 6 hours, that I can’t take codeine. SERIOUS bout of vomiting ensued, far worse than anything I’ve suffered with the chemo (you get the idea). Am actually glad it happened now as I they would have given me it after my operation so at least I can forewarn them not to – or they (and I!) will suffer the severe consequences!!

BUT (like Tigger!) I have now bounced back, just in time for my sixth and FINAL round of chemo TODAY. I had an echocardiogram yesterday to check if my heart had been damaged at all by the first round of Herceptin I had earlier in the month (it’s a possible side effect of the wonder drug) and it hasn’t so I’ll also be having that today too. It means a long day at the chemo unit (am expecting between 4-5 hours) but it’s very civilised and I’ll be sitting with my feet up being waited on (drinks, lunch etc), and I might squeeze in a little nap too 🙂

The last two rounds, and today, are a different type of chemo drug to the first three rounds and have brought with them different side effects. I didn’t read all the possibles (just in case they became self-fulfilling prophesies) but went with the flow and checked things out as they happened. Most common (which I have had, progressively worse each time) is the aching limbs and back pain, like you’re coming down with the flu where everything aches from your ankles to your eyeballs. Last time round I slept for around 20 hours out of 24 on 3 days the tiredness was so crushing too. Others have been:
· Painfully dry and sore mouth and complete loss of appetite and sense of taste
· Water and gunky eyes which I literally have to peel open in the morning
· Deterioration in eyesight (temporary I am reliably informed) – Ray keeps catching me squinting at the telly and I’ve caught myself moving things close or further away to read them (the old adage: “it’s not new glasses I need but longer/shorter arms!!)
· Weird things happening with my smell. Certain body and foot creams have been ditched as I can’t bear them, poor Ray has been banned from wearing one aftershave and I can’t cook broccoli (for which Ray is NOT disappointed). I love it normally and would happily eat it every day. Ray – not such a fan!
· Toenails going black! Thankfully I have kept them, and my fingernails, painted all the way through treatment so at least they are hidden from view. Some patients’ nails actually come off but it looks like I’ll hang on to mine, even if they are an iffy colour underneath!
· My eyelashes have pretty much gone. Think I now have three left on my right eyelid and about five on my left. Have lost quite a lot of my eyebrows too but they were thick to start off with so don’t look bad. I’ve tried some stick on eyelashes (both individuals ones you insert and complete lashes) but I looked like Daisy the pantomime cow so will probably give them a miss. Hopefully all my hair will start growing back in about a month – am very interested to see what comes first!

In other ‘medical’ news this month my PICC line worked its way out so I no longer have to shower and bath with my arm in a protective bag and I will be able to swim again (and, more importantly, go in spa pools!) after the rest of my treatment (operation and radiotherapy). The plan was to leave the PICC line in for as long as possible as I’ll be having the Herceptin every three weeks for a year, but even having it in for three rounds of chemo has protected my veins and the nurses are able to administer it through the veins in my hands which is great.

The stupidity of what most of us nickname ‘chemo brain’ – basically the capacity to forget even the simplest things – continues. I am never without a notepad or Dictaphone to help remember things – quite simply if it’s not written down then it’s not going to happen! And I’ve gone from someone who could remember names, addresses, phone numbers and all manner of random information to staring blankly at people, scrabbling around for a hint of what they are called and what we were talking about. Things slip from my mind like water through my fingers, catching me completely blank mid-sentence, such a strange sensation for someone who was previously reasonably quick-witted and informed! I also do stupid things – or forget to do things completely. A classic this month was popping into Aylesbury to go to the bank, parked, had appointment and walking back to car I was very proud I had at least 20 minutes left on my ‘ticket’ (normally I’m racing back, thinking up excuse for warden on route in case I’ve gone a minute over and he’s hovering by my car like a vulture) when I realised I hadn’t actually BOUGHT a ticket, even though I’d parked right next to the machine – duhhh! Thankfully I hadn’t been spotted and made my escape, penalty free!

As in previous weeks I’ve made the most of my good spells and have seen lots of friends and done lots of lovely things. The biggest highlight was my amazing friend Becci running the Macmillan St Albans 10k on Mothers’ Day in my name, raising £1,190 which (along with the Gift Aid) pays for a Macmillan nurse for over a week. She was awesome and is pictured with her two little boys after completing the run in 57mins and 54 secs – she was SO determined to do it in under an hour!

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Ray and I also had a lovely long weekend at the coast (Hayling Island, Bosham, Worthing, Eastbourne etc) and caught up with one of his mates from basketball playing days AND Gary’s gorgeous two dogs Oz and Bailey which cemented my dream of later in the year getting another dog. We so miss Charlie, who we lost four years ago at 12½, so watch this space – after treatment ends this may turn into a doggie blog!!

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Last week was supposed to be my ‘good week’ before today’s treatment and while we did manage lunch with friends on Monday, we had to ditch plans for a concert in London on Tuesday night, I just wasn’t fit enough for that, and I was SO determined to make it up to Manchester on Wednesday I forfeited Kenny G so I could make it ‘oop north’ for a night to see my gorgeous friend Debs for an overnight spa break, my glamorous little sis Caz who joined us for dinner, and the amazing Colette who took a day off work just so we could have lunch. It was the first time I’d been on a train since before Christmas and the furthest I’ve been without Ray since treatment started. Prior to that everywhere I have been and everyone I have seen as been within a 1hr drive of home. My life has become geographically and psychologically reduced on a massive scale as I’ve focussed on chemo treatments and been restricted by risk of infection, but those days are nearly over – woop! Woop!

In terms of what comes next I have a battery of tests and scans over the next few weeks and will then have a radical mastectomy either the last week in May or first week in June. After my wound has healed (around six weeks) I’ll start a month long course of radiotherapy which means driving to Oxford each day, Monday to Friday. Am not worried about any of that as the worst part – the chemo – is almost over 🙂

Ray and I are squeezing a holiday in before my operation. Not quite as glamorous as our 24-night anniversary cruise last year but two nights in Southampton and then four nights on the Isle of Wight. We’ve only ever been there on day trips but absolutely love it and I’m trying to convince Ray that it’s like going abroad as we have to get a boat to get there!!

More soon – I won’t leave it so long I promise! xxx

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

The chemo fog is lifting…..

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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!  

Hair today…gone tomorrow!

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It’s 4.30am and I’m wide awake so thought I’d make constructive use of my time with a little update as yesterday was such a momentous day – the ceremonial shaving of my head!
For the last few days I’ve been shedding hair, leaving it everywhere in my wake – the car, a friend’s sofa, the stuff was literally dropping out at will – a very bizarre experience!

I felt anxious the couple of hours before but once actually sat in the big, black chair was strangely calm – the bottle of bubbly we went armed with helped! I had a couple of sneaky looks while Jason worked his magic with the clippers but for the most part kept my eyes closed and indulged in lots of inane chatter – distraction therapy.

As my short but very thick tresses fell away Jason said: “You’ve got a lovely shaped head under here.” What praise – I felt strangely proud and, on viewing my new, bald, noddle have to agree with him. No lumps or bumps, a nice rounded shape, could be an awful lot worse!

The general consensus is that darker hair makes me look younger (I’ve been going lighter over the last few years to cover the grey but will definitely go dark again when my hair grows back) and I adore my Chestnut Cassidy wig. So glad I splashed out and bought her as the NHS ones ordered for me to try have still not arrived. It was fate – Cassidy and I are meant to be together 🙂

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Chemo round 1 – done and dusted!

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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!!