Watch and Wait

There’s only one thing (if you’re me!) to do when you’ve been given shite news…and that is HIT THE DRINK!!! Me and one of my besties hit Belfast hard a couple of weeks after my CA125 results to drown our sorrows and have a life-reaffirming day. I was determined to pack in as much living as I possibly could while I was waiting for my ct scan…plus I really do love cocktails and great craic with my mates! The Ovarian Ladies met up again – and it was great to catch up with them. ‘A’ was back on carbo/taxol as she had only got 4 months break after her chemo ended before her CA125 shot up again. She had been put on caelyx but a scan had shown it wasn’t working so she’d had to say turrah to her hair and hello to her wig again. Thankfully, this combo was doing the trick and she was in great form. ‘A2’ had recovered well from her second line of chemo (a “line” is the term used for a set of – usually 6 – chemos) and was looking and feeling well – seeing how well these ladies were coping during and after more chemo gave me a lot of hope for whatever was next for me. We all had a great afternoon as always…I always smile for the rest of the day after meeting up with these ladies – and that’s without any cocktails in me!!

The ct scan was booked for Valentine’s Day…so Neil took the day off and we planned to go for more cocktails afterwards. Unfortunately I ended up only having one with my meal after my scan as I was starving and feeling pretty grim after drinking that dirty dishwater…plus the nurse doing my scan said I’d need plenty of water, not alcohol, to flush the contrast agents out of my system. Bugger!

Around this time in mid-Feb, Target Ovarian Cancer shared my story to help raise awareness and I also did my first-ever blog for them about how much their Being Together Day had a positive impact on me. I was delighted to be able to do what I could to raise the profile of this “silent killer” and hope that all my hollering about the symptoms will have helped get at least one woman diagnosed earlier and have a much better prognosis than far too many of us with this disease. I also recorded a couple of videos for Action Cancer, talking about the symptoms of ovarian cancer in one (I shared this one on Mother’s Day in March 2017 – a fitting day to highlight the symptoms, plus it was Ovarian Cancer awareness month too) and the other video was about the Peer Mentoring service. It’s worth watching just to see how totally daft my hairdo now was – the chemo curls were getting too hard to control most days!!!

I had to wait just over 2 weeks for my scan results…so I hit Belfast again (sure I only live once!!) with another of my besties for more cocktails and a wee bit of retail therapy. Soon enough my appointment with my oncologist rolled around. Needless to say, me and Neil were a bag of nerves in that waiting room. I tried my best to keep my thoughts in check – I was pretty convinced I was having a recurrence – but there was a wee glimmer of hope that maybe, just maybe, something else had caused the jump in my CA125 numbers. That wee glimmer of hope disappeared when I was called in to see oncologist 2. I gave her a big hug as I knew how upset she had been losing J too and we had a wee chat about us ladies/eejits getting our tattoos and about how the Ovarian Ladies were making a big difference to each other’s lives and mental well-being. She was delighted with the Belfast Telegraph article and had proudly shown it off in the hospital the day it came out. She then turned the computer screen towards me and it was time to get down to business. She confirmed that, yes, I did have a couple of tiny spots of recurrent disease (awwww bollocks!!) – one was in a lymph node deep down in the left hand side of my groin and another in my peritoneum (the “packing tissue” which surrounds our abdominal organs)…she assured me that I wouldn’t even know they were there (I didn’t!) and that – as I had no symptoms – I wouldn’t be getting second-line chemo just yet. I was going on “watch and wait” where I’d have a scan every 3 months to keep an eye on what the shitty cancer was up to and I was also to keep an eye out for any symptoms in the meantime. I was disappointed and relieved all at the same time…my cancer had returned roughly 10 months after my treatment had finished BUT I had been given a 3 month reprieve at least before I needed further chemo. Neil wanted to know only one thing…should we book a holiday over Easter or wait until the summer? Oncologist 2 replied “Book one for Easter…and if all’s still well, book another one in the summer!”. Fecking good idea! My bloods were taken for another CA125 test (I never asked for the results, I had stopped wanting to know those numbers as they only added to my distress and anxiety) and me and Neil left to go and break the news to our family and friends.

Our kids took the news OK. There were a few tears but nowhere near the  weeping and wailing that had been done when I was first diagnosed. The rest of my family were bewildered by this watching and waiting business…if there were only 2 wee spots of disease, why couldn’t I be operated on to remove them? I tried to explain as best I could that these were the only 2 VISIBLE spots…chances were that there were other microscopic spots of disease still growing in there that wouldn’t be removed in an op…and an op might cause the microscopic cells to be spread about further and go buck daft! Plus, the whole point of watch and wait is to give the patient more time to enjoy their lives without the upset of more chemo…the oncologists are weighing up the quality of our lives…and if the patient doesn’t have any symptoms, then they are left alone and just kept a close eye on. I was happy enough with this decision…plus we now had an Easter holiday to get booked!!

I was back in work the next day to let my workmates know (I’d texted a few of them the day before to give them the heads up)…they were all disappointed for me but thankfully they’d all been expecting this news so were well-prepared for me walking in and needing all the hugs I could get! I was also just so relieved that I got to keep working away for another 3 months – that would take me up to the end May/start of June before my next scan and results. That’d be nearly a whole school year under my belt!

We took the kids out for a shopping spree in Belfast that Saturday and let Elliot loose in his favourite all-you-can-eat restaurant (I’m pretty sure that place suffered a loss in profits that day!). It was a lovely weekend, full of love and fun and – even though I knew my cancer was definitely back – I was now a lot calmer again as I knew what was going on inside me and that if I kept feeling OK, then that meant I was OK.

That week, I took a day off work and went along to Action Cancer’s Drop-in coffee morning, chatted away to some other cancer patients and my lovely mentor-trainer was relieved to see me. “You really are OK aren’t you?!” she said when we got a second to ourselves. “Yeah, I really am!” I said, smiling. “I’m too busy and determined to have a good time to spend a second moping about this recurrence. Whatever happens, happens and no amount of me gurning will change that!” When I got home I was delighted to see that not one but 2 of our Ovarian Ladies (Alison and A2)  were featured in that day’s Belfast Telegraph telling their stories. Us ladies really were on a mission to raise as much awareness as possible!

The following Saturday saw me and Neil sitting in our local travel agents booking our holiday. We didn’t want to go too far away and thought mainland Spain would be perfect. So we booked a week in Estepona on the Costa del Sol. Something for us to look forward to!! It was only just over 3 weeks away and I had plenty of other exciting things planned for the coming weeks to keep me busy until then!

I had a lovely Mother’s Day with Neil and the kids – we went out for a curry the night before and I spent the Sunday morning getting my usual breakfast in bed and then immersing my feet into my new foot spa – bliss! Father’s Days have been tough for the last few years since my dad died of cancer in 2013 (I’m actually sitting writing this on Father’s Day) and now I couldn’t help thinking if this was my last Mother’s Day I’d get to spend with my kids. I was learning that because of this shitty recurrence, special days like Mother’s Day would leave me feeling a little bit more fragile as I couldn’t help pondering my own existence and wondering how long I really do have left. Thankfully, I banished those thoughts as quickly as I could…that way madness truly does lie!!

For my next trick, me and one of my cocktail-guzzling besties had a fun few days lined up. First of all, we both went and got tattoos – I got my wrist done with my “Life is Sweet” tattoo (see the pic below), complete with a couple of cupcakes and plenty of teal in it! Another permanent reminder for me to look at every day and remember to enjoy every day! My mate got her foot tattooed and I’m afraid I laughed way too much every time the needle hit a nerve and she jumped! The finished tattoo was gorgeous though and worth all that pain! Her foot is very sexy now! (Not saying it wasn’t sexy before…it’s just much sexier now!!)

The same bestie has her birthday at the start of April so 4 of us had booked an overnight stay at Galgorm resort which has a fab thermal village and spa. Oh my word, it was fab!! Lots of drinkies, walking around in our swimsuits and dressing gowns supplied by the resort, yummy, yummy food, lots of lazing about on heated loungers and water beds and popping into a hydrotherapy pool, hot tubs, saunas, steam rooms and even a freezing cold ice room (great for my hot flushes!!) and because we stayed the night, we got to do it all over again the next day!! I came home feeling on top of the world!

I really had to get my arse in gear and get packing as our holiday was fast approaching. I was excited and nervous about getting on a plane again…last time I’d flown all my symptoms had hit me like a ton of bricks. What if the same thing happened again?? Thankfully, I needn’t have worried and we had a great week. We didn’t do too much – went shopping into Estepona and Marbella on a couple of days but mostly stayed in and around our apartment. The pool was fecking freezing as it was only April but I still managed to do plenty of handstands in it (my favourite holiday pastime – yep, I am that big an eejit!). By the end of the holiday, I was getting pretty morose as I couldn’t help thinking that this might be the last foreign holiday I got to go on…even though I managed to stay upbeat most days, thoughts like this are sometimes unavoidable when you’ve got an incurable cancer diagnosis. I just had to keep shaking those dark thoughts off and concentrate on the fun I was having with my wee family!

So the pics this time are of me enjoying a gorgeous pear martini on one of my cocktail sessions in Belfast, a selection of our holiday pics (including my mad chemo curls in all their glory in one pic and Elliot using a fountain to good “artistic effect” in another pic – look closely and you’ll see what I mean!!) and my “Life is Sweet” tattoo…the nurse who usually does my scans these days knows exactly who I am just from that tattoo!

Big hugs,

Carol xxx

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No hope

I carried on working away and feeling better all the time in the lead up to Christmas. I was much fitter this year compared to the year before and happily decorated the trees with Neil and the kids and got all my Christmas presents bought and wrapped with no problems. Neil of course did the usual panicking over what to buy me for my birthday and Christmas so I helped him out by picking a lovely jewellery set by Coeur de Lion. It means heart of a lion so very apt for us cancer peeps!

I had a great birthday celebrating being another year older (but still no wiser!) with my family and friends and a few days later had a lovely, quiet Christmas Day with my wee family. I spent a lot of time thinking about all I had come through that year…all the lovely new friends I had made and the friends I had heart-breakingly lost. By this stage in my life, I was taking nothing for granted and didn’t look too far into the future, preferring to stick to the present and taking things a day at a time. I was relieved that I wasn’t facing a Big Op in the New Year unlike this time the year before and was full of hope for 2017.

As per normal I went out with friends on Boxing night and felt very sorry for myself the next day. I got my brown envelope in (Merry fecking Christmas to me!!) to get my bloods done for my CA125 test so I got my bloods taken in between Christmas and the New Year. I also felt very sorry for myself on New Years Day after another good night saying turrah to 2016 with great friends. I was back at work a couple of days later and getting geared up for the school’s open night that Thursday and trying to stay on top of the anxiety I was full of waiting for the phone call from my new CNS…which was also happening on that Thursday. The phone call was due some time that afternoon so I scuttled about sorting out interesting slides for the kids to look at using some microscopes, making up colourful liquids and sorting out all the chemicals we’d need to put on a good show. My workmates at school knew I was going to be getting the call and my boss (the head of the science department) was always popping in to see how I was doing. Waiting for these phone calls is indescribably tough…all you can really do is hope for the best whilst preparing for the worst. Every minute felt like an hour and I took my phone everywhere I went. Please don’t phone when I’m on the fecking loo!!!

As it turned out, I was in my prep room when the call came through. I steeled myself as I slid my finger over the green answer icon. The new CNS introduced herself and asked how I was feeling…I replied I was feeling great but obviously nervous! She put me out of my misery…or rather in one short sentence she added another big pile of stinking misery on top!!!

CNS: “Your CA125 result is now 80.”

Me (starting to sob): “What??!! Did you say 18 or 80???”

CNS: “80”

Me: “………..” Let’s just say I completely broke down at this news. My CNS tried to console me by saying that all sorts of things can cause the old CA125 to rise…things like a bit of inflammation or an infection so I wasn’t to panic as she would get a scan organised and get me booked in to see one of my oncologists when the results were in. I thanked her (I never forget my manners!) in between sobs, hung up the phone and just collapsed in a heap gurning my eyes out. My first time getting a phone review and it was a fecking disaster! My lovely boss must have popped in while I was on the phone and heard as much as he needed to hear because he was back in a minute or 2 after I got off the phone. He came round to stand beside me and just hugged me while I sat on my seat gurning and saying “It’s gone up to f…f…fecking 80…”. He asked if I’d phoned Neil yet and I shook my head. Awww feck!!! Did I have to go and piss all over my hubby and kids’ lives all over again??? My boss left me to ring Neil at work…he answered straight away and knew the minute I said “Hi…” that all wasn’t well. “What’s wrong?” He said and I proceeded to dissolve down the phone to him. He was in meetings the rest of the day that he couldn’t escape from but I assured him I’d be OK at work…I still had loads of organising for that night to do and I was meant to be going to a meeting later on about open night. When I got off the phone to Neil, I called one of my work besties and gurned down the phone to her. She was round like a shot and even though she was left reeling at my news, she soon had me sitting in her office with a cup of tea that I was hiccoughing into. She managed to get me pulled together enough that we both made it to the meeting. I was a sorry sight (my waterproof mascara ain’t THAT waterproof!!) and kept thinking I was going to burst again. Word hadn’t got out yet but I’m sure my distress was written loud and clear on my face as I got a lot of sympathetic looks from a lot of the teachers. When the meeting was over, the principal came over and once he’d heard my news, he was adamant that I should go home and not worry about open night. That didn’t compute with the belligerent bugger that is me and I assured him I’d still come in. I needed something to take my mind off all this crap so what better way than by watching pupils doing flame tests and popping hydrogen gas all night.

I went home to get freshened up, have something to eat and to tell the kids my crappy news. I played it down that it could mean the cancer was back but I know they knew this news wasn’t good…they took the news like the little troopers I know and love with all my heart. I then went back into work with my game face on and smiled and chatted to the parents and the kids for the 2 hours of open night and melted standing by a bunsen burner in my lab coat and steamed-up safety glasses (those rooms get so stuffy when they’re so packed with people!). It was just the tonic I needed…but I crashed hard when I got home. Underneath all the wishy-washy smiles and fake-positivity I knew that my CA125 was a good cancer marker and that this rise could only mean one thing…that the shitty buggery bastard of a cancer was back. It felt like, in the deepest, darkest corner of my mind, I had had a little flame burning brightly representing my hope that I had been cured…and it had just been blown out, or more likely the cancer had just pissed all over it. I was under no illusions that if it was back that I was now incurable (I really had given myself an education since I’d finished treatment!). I was descending into a dark hole and I didn’t know how I was going to climb out of it.

I went back into work the next day and got loads of hugs which always help (never underestimate the power of big hugs!!). I had a lot of tidying up to do from open night so I got stuck into that and it helped me to stop focusing on the phone call from the day before. The day passed in a blur…when I got home, I couldn’t help sinking into what I can only describe as a deep depression. I was staring death in the face and I saw my life grinding to a halt much sooner than I’d ever anticipated. I was scared, I was distraught and I was alone…even though my friends and family were already rallying around. I broke the news to the ovarian ladies, my peer mentor pals and many other friends. The many messages of support did help but I wallowed in my depression for the whole weekend. I tried but I’m pretty sure I failed miserably interacting with Neil and the kids that weekend…my only recollections of that weekend are black, dark thoughts. How the hell did I manage to pull myself out of that black hole?????

By coming up with another motto that I have lived by (and shared with many others!) ever since! Wanna hear it? OK!!

Why worry about dying while I’m still living?!” 

Remember what I said way back in my first post about my gob and my mind being my strengths? Well, this one sentence that I came up with has made the biggest difference to the way I live my life! I can honestly say those words have saved me from inhabiting a very dark world…I finally had pulled myself together again!! It dawned on me that I really couldn’t afford to waste my more-precious-than-ever time thinking about nothing but my demise. Imagine how totally fecked off I’d be on my death bed knowing how much time I’d spent wallowing in this cancer crap!! Miraculously, I’d just talked myself out of a very dark place…I still visit this place every once in a while but I sure don’t pitch a tent and live there. My little flame of hope had been relit…now it burned not for a cure but for my life well-lived. To hell with this fecking cancer!!

I went into work on Monday back to my usual smiley self…I wasn’t faking my smile, I was genuinely happy to still be working away and feeling good. This is what living is about!! Smile and laugh and love as much as you bloody well can because it could all be over in an instant! I still had a ct scan and the results to look forward to but with my renewed hope and love for life, I felt ready to tackle anything.

This pic is my Christmas pressie in 2016 from one of my lovely teacher pals. How awesome is that! I sure needed to re-read those words a few short weeks later. Never lose sight of your hope or your love folks!

Big hugs,

Carol xxx

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Hope

With my CA125 levels dropping to 12, I was breathing easy and determined to enjoy the next 3 months or so before my next blood test. The Ovarian Ladies met up over the summer again (with Christine and A2 joining us this time) and there were a number of us who had held events to raise money for various cancer charities…but we hadn’t raised much awareness yet for the symptoms of ovarian cancer. That all changed when we were having one of our daily chats in our wee group on messenger…I had to go and be a very bad influence!! The subject of me getting my tattoo cropped up and one of the ladies commented that she wouldn’t mind getting inked but that she didn’t know what. After a wee bit of googling, I posted a pic of the word HOPE incorporating a teal ribbon in the word (teal is the colour of our ovarian cancer ribbon). Quite a few of the ladies ooohed and aaahhhed over it and a plan quickly formed…we could get tattooed, raise money and raise awareness!! Brilliant!! This was no big deal to me as I’ve got a number of tattoos…but the 3 ladies who agreed to my madcap scheme had never been tattooed before. This was a big deal to them!! We set up a justgiving page to raise money for Target Ovarian Cancer and the money started rolling in. Once that happened the ladies realised there was no backing out now!!! Ooops!!! We set a date for late October to get the tattoos done. I arranged it with my favourite tattooists and my contact at Target Ovarian Cancer got in touch with the Belfast Telegraph and they agreed to cover the story.

In the meantime, I was settling back into work, so relieved that I was able to keep on working until Christmas at least. I was getting stronger and was coping fine…I still crashed when I got home from fatigue…the main problem was putting up with my fecking chemobrain!!! For those unfamiliar with the term, chemobrain refers to the jangled mess of a brain us cancer peeps are left with after having had chemotherapy. Who knows what those nasty toxins do to our neural network…all I know is that I STILL forget what I was saying mid-sentence (anyone who knows me knows that I am always saying “…what was I saying again???…”) and if that’s not fecking infuriating enough I can literally forget the names of common objects…I am surrounded by the fecking things in my prep room at school but I have been known to forget the words “bottle” and “jar” (pointing at these things in utter frustration!!). The best example I have of this phenomenon is when I went into my teacher mate’s classroom…I just looked at her and sighed…she knew in that one gesture what was coming. “What’s the matter Carol?” I sighed again and said “I’m looking for that…thing…it’s about this big…”(gesturing)”…and you put paper in it and it seals it in plastic…”. “You’re looking for the laminator Carol…”. YES!! Yes I fecking am!!! Chemobrain in a nutshell for you ladies and gents!!

I was also struggling with something else. So the chemo (namely the taxol) had made me lose my hair but by this stage I had had it dyed (you have to wait 6 months before you can dye your hair) and it was growing well…and…it was kinking and curling the more it grew. I’d had wavy hair before but nothing like this!!! The longer it got, the more tricks I had to pull with my hair straighteners and hair clay/paste/whatever the feck would tame the madness!!! Another thing the chemo had changed beyond recognition!! Not that I was complaining that much as the nasty chemo had also blasted my nastier cancer to smithereens. Every cloud as I say!!

Despite the hair and the brain (the numb feet, tingly hands and all the aches in my body had eased greatly thanks to the complementary therapy) I was feeling and looking more like myself than I had done for a very long time. I was throwing myself into living and trying to keep the dark thoughts of recurrence at bay (sometimes that was easier said than done). I did get a huge dose of much-needed hope from a chat with my hairdresser. I knew her mum had had ovarian cancer…what I hadn’t known was that her mum had advanced ovarian cancer…but that was 10 years ago and she has NEVER had a recurrence!! This was music to my ears and I left that day on cloud 9 with a great big goofy smile on my face and a kink/curl free hairdo!!

I also had more medical appointments with a hormone replacement therapy  (hrt) consultant and a genetic counsellor.  I didn’t think I would be allowed hrt as a lot of ovarian cancers are oestrogen receptive (the hormone oestrogen “feeds” the cancer) to some extent. Sure enough, the consultant had my histology notes in front of her and there in a box was typed “ER+”. So definitely no hrt for me!! As you were hot flushes! My other concern was osteoporosis (another issue for many post-menopausal women…an even bigger issue for woman who are plunged into surgical-menopause unnaturally young) so the consultant organised a bone scan for me which was carried out a few weeks later at the Musgrave hospital. Thankfully my bones were normal (about the only fecking thing normal about me!) but a blood test revealed I was vitamin D deficient (show me someone in Northern Ireland who ISN’T vitamin D deficient!!!) so I have been taking vitamin D supplements ever since to hopefully stop me developing osteoporosis.

I was referred to the genetic counsellor to see if I had either of the BRCA1 or 2 genetic mutations (most often associated with Angelina Jolie). If a woman has this mutation, it increases her risk of developing breast or ovarian cancer significantly…a man also has an increased risk of developing breast cancer. It involves a detailed look at your family tree and it was decided there was enough evidence of cancer on my dad’s side of the family to warrant a sample of my blood being taken for testing. The results took a while to come back and the genetic counsellor rang me when they were in and said that I didn’t have the BRCA genetic mutation. I was relieved to hear this as, if I’d had it, the chances of either or both of my kids inheriting it from me were 50/50…plus my siblings and their kids too…and my cousins and their kids. A great big can of worms being opened had been avoided. So you can imagine my shock when the official letter arrived and it said that I was still deemed a “moderate” risk of developing breast cancer! I discussed this with one of my GPs and asked about being put into the screening program…but because I wasn’t 50, that wasn’t possible. So I added being screened by Action Cancer (ladies in NI please use this unique service to have regular mammograms if you fall outside the age brackets for screening) every 2 years to my list of things to do. I’ll just add that recently I met with a breast cancer consultant who took a look at my letter from my genetic counsellor and said that my risk of developing breast cancer is moderate to HIGH (oh fer feck’s sake gimme a break!!) and she has now added me to her list for yearly mammograms. Great!! So much more research is needed to look into genetic links to cancer…for now I don’t have a recognised genetic mutation but I’m pretty sure there will many more family links and mutated genes discovered in the future.

The day arrived that we were getting our tattoos. I had had a photographer round at my house taking some shots for the newspaper article a day or 2 beforehand and I had done an interview over the phone as well and had told the reporter about our wee group of ladies and how we’d come up with this tattoo idea. We met up in a local restaurant in Larne and lined our stomachs while I tried to say that a tattoo would be wee buns compared to the pain we had already experienced! Unfortunately Pauline (beside me in the pic below) had a chest infection so her daughter stepped up to get one for her mum. Ruth (centre right) and Alison (far right) had picked out the designs they wanted and had decided to get their inside wrists tattooed. My one remaining wrist (I have 2 wrists of course but one already has ink on it) was already promised to another tattoo I was planning to get so I went for getting an ankle bracelet design.

We met the photographer at the tattooists and we got stuck in to being pierced multiple times by the ink guns while trying to smile at the photographer. It certainly made for a memorable afternoon! When we were all done, the fab tattooists waived our bill…they had just inked us for free!!!(This was on top of them giving me the voucher for my raffle and tattooing my mate who won the prize – she chose a really gorgeous tree of life) I was an emotional blethering eejit (otherwise known as a gobshite in these parts!!), Ruth and Pauline’s daughter were all chuffed with themselves…meanwhile Alison was buzzing as much as a tattoo gun and wanting to get another one right there and then!! “You might have walked in here as ladies…but you ain’t walking out of here as ladies…” my charming tattooist said to the others (I assumed he wasn’t talking to old, unladylike, tattooed me!!).

The article appeared the following week…my grumpy bake (Northern Irish for face/mouth…normally used when you’re told to “Shut your bake!!”) even made the front cover…have a good look at that pic below. Does that face look like it’s celebrating anything???? The article was really good. Sure, there was the odd misquote but on the whole it captured my story really well…and that was the problem. Turns out the whole article was about me and to the casual reader, it looked like the other ladies were just joining in for the craic. There was no mention of us being part of a wee support group or that the other ladies had all been diagnosed with ovarian cancer too. I was delighted on the one hand that we had raised much-needed awareness but I was gutted that the other ladies hadn’t been able to tell their stories too. Thankfully they were all very understanding and we realised that the journalists were trying to get a good story for the readers. As long as the message about being aware of the symptoms got out there, that’s what mattered most to us (still not sure of the symptoms? Go look at my Support and Symptom Awareness page). Plus there was the fact that we’d raised a fantastic £1300 for Target Ovarian Cancer!!! Thank you all who supported us!! Did I mention we got free tattoos as well? I did??? Well, that’s worth mentioning again surely!!!

The following week, I got my second “gig” with my Target Ovarian Cancer spokeswoman’s hat on. The charity’s latest survey’s findings were being published and the results were far from reassuring…it was plain to see that so much more work needed to be done to alert women to the symptoms of this “silent killer”. It goes without saying that GPs need to be aware of the symptoms too…but every GP will not come across that many women with ovarian cancer…on average they might see only 2 or 3 in their whole working lifetime. So it’s vital that any woman -who realises she has one or more symptoms of ovarian cancer that is persistent (it doesn’t come and go over the course of 2-3 weeks) – gets herself booked in to see her GP as soon as possible and ask for a CA125 blood test AND an ultrasound scan (to back up the CA125 test, as it can sometimes be unreliable as a cancer marker) to get ovarian cancer ruled out FIRST! (I’m getting on my soapbox here, can you tell??) Too many times women are sent away from their GPs with tablets for IBS, or told it’s the menopause, or even worse, they’re depressed!! That means by the time the cancer is found it has had a great opportunity to spread and become the deadly killer that it is known to be. I consider myself “lucky” as it was only my second visit to a GP with my symptoms that led to me being red flagged and on course to being diagnosed…but I was still diagnosed at a late, advanced stage. There’s no 2 ways about it, ovarian cancer (like too many other cancers) is a sneaky bastard and creeps up on you without you even realising it’s there until it’s almost too late. Awareness will save lives…I truly believe this.

So anyway…what was I saying again?? Oh yeah, my second stint of raising awareness for Target Ovarian Cancer! This involved me being interviewed on Downtown Radio (a local radio station here in NI) while Target’s survey findings were being discussed. I was so far removed from my comfort zone doing this (yes, I am a gobshite and a daft eejit…but only when I am either off my head on steroids/prosecco or feeling confident and comfortable with the people I’m with). My biggest fear is standing up and talking in front of an audience. It just goes to show how much I want to raise awareness that I have pretty much conquered that fear now!! At least this didn’t involve me standing up (I sat on a stool in my prep room at work waiting for the call to come through) and I couldn’t see my audience. I was still nervous and crapping myself (you’ve seen how much I eff and blind in these blogs, right??!!)…what if I swore live on air???

Thankfully I held it together and was able to describe my own experiences  from getting the symptoms on holiday in Egypt and thinking I’d picked up a bad bacterial infection to being knocked over sideways finding out I had in fact got advanced ovarian cancer. And all without even one swear word slipping out…PHEW!!

I’ve already talked about the pics…my front page grumpy bake…the newly-tattooed ladies (l-r: me, Pauline, Ruth and Alison)…and our tattoos!! That is not a badly mangled wrist and hand in the middle, that’s my ankle and foot!!

Big hugs,

Carol xxx

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Summer Lovin’

Early July saw me, Neil and the kids boarding a boat bound for Bonnie Scotland…and driving for hours down to England. We stopped off in Carlisle for the first 2 nights, spent the day in a very foggy, rainy Lake District (but Elliot was happy as he got to steer a boat around Lake Windemere) and met up with 3 of my mates from uni that night. We hadn’t seen each other for 21 years so we had a fair bit of catching up to do! It’s fair to say I’d changed the most out of us all…but I’d had dodgier haircuts back in the 90s! We chatted the evening and night away and they all stayed over at the same hotel so we did more chatting the next morning! It was so good to see them after all that time…I sure hope I’ll get to see them again in the not-too distant future!

We then ventured further south to stay in High Wycombe – where I’d come to live and work after uni for 8 years. Neil’s from nearby Hemel Hempstead so we were able to catch up with his family at Whipsnade Zoo…not saying that they can be found in the zoo, just that’s where we met up with them…honest!!

I managed to walk around the zoo (coz luckily you can drive around most of it!!) with no problems…I wish I could say the same on the days we ventured into London. We had tickets for the London Eye and the queues and the heat and the waiting to get on it was exhausting! By this stage, I was looking slightly more normal (think of a greying, slightly chunky Sue Perkins…or my Mum for those that know her!!) so I wasn’t silently screaming “Please let me sit down, I’m a cancer patient for feck’s sake!” to folk around me. I still had a tiny bit of pride that hadn’t been kicked into touch so I dug deep and acted as normally as I looked, even though standing waiting for anything is something I really can’t do for long as I soon begin to tire and ache! I soon found places to sit so I would frequently disappear for a few minutes to sit down and reappear to find the queue had moved forward by 0.01 nanometers! This is why I prefer sunny, relaxing beach holidays!! We finally got to board and thank feck there were seats!! By that stage I was “Feck the views, sitting down is what I want!” but I wasn’t able to stay seated for long because the views were pretty awesome. We went back into London another day to go round Harrods (we bought some yummy baklava in there that didn’t break the bank) and to go round some of the museums. Unfortunately for Elliot, the security is pretty tight in the Natural History museum…

Museum security guard: “Any sharp objects in your bag?”

Elliot: “Maaaayyybbeee??”

Oh feckity feck what had he got in his bag??!!! Turns out it was a Swiss army knife he’d used when he was last camping with Neil!! With the knife stowed away safely with security, we headed off for another exhausting walk. By the time we were back in the Underground (with Elliot’s weapon back in his bag), it was rush hour (or maybe it’s just always crazily busy) and getting a seat was impossible. Again, I wished my cancer diagnosis was more visible so that some kind soul would give me a seat. No such luck so I didn’t get to sit down until we were well out of London.

There was one place I was more than happy walking around…the Harry Potter studios! Our wee family are Potterheads and it really was magic seeing so many props, sets, clothes, the Great Hall, Diagon Alley, the Knight bus, the Hogwarts Express and so much more! Goes without saying that we spent a small fortune in the souvenir shop!

We also met up with some more lovely friends at the pub attached to the hotel we were staying at. It was soooo good to see everyone and catch up after so many years (me and Neil had moved over to Northern Ireland in 2003 when Thea was nearly 1) but the pub was so warm I kept having hot flushes the whole night…thank you surgical menopause!! I was melting!!

On the way back up north, we stopped over for the last night in the Peak District. Once again, the only views we had were foggy, damp ones but we were in a quaint wee hotel and after a walk around the village, we were more than happy to have a quiet night eating and drinking in the bar. The next morning saw us heading back to the boat again. The holiday had whistled past…it had been very tiring at times but we certainly had made some very happy memories.

Back home, I was determined to build up my strength a good bit more and would go into work every day for the rest of the summer so that I could hit the ground running when I returned full time on the 1st of September. A lovely young school leaver (miss your wee face!!) had been filling in while I’d been off sick and I sure hadn’t wanted to just come back and oust her from a job I wasn’t fit to do…so it worked out really well that she was going to head off to uni in September so I aimed to be fit for then. We worked so well together that summer and got a lot done, things I couldn’t have attempted on my own. Working in a school when there’s no teachers or pupils about is so much easier!! (But I do miss my teacher mates!!)

Neil and I debated squeezing another (sunny, beachy!!) holiday in during August but never got round to booking anything. I wanted to get out there and grab life by the balls and make more memories but Neil was way more cautious and worried about me being far from home. So soon enough, September rolled around and it was time to say turrah to my lovely wee workmate and pick up the slack on my own again. So of course 2 nights before I was due to go back to work, I got a tummy bug (no kidney bowls in my house…helllloooo toilet!!) and was wiped clean out!! Typical!! But of course I was determined not to miss my first day back and managed OK…although I did come home and crash for the rest of the day. Fatigue can be a real problem for many of us cancer peeps and it’s hard to cope with and get on top of. Thankfully, little by little, I did start to get stronger and slightly fitter again. I started going to yoga with my workmate which really helped me physically and mentally. I always felt so chilled out afterwards, it’s awesome!

The first time I set foot outside at school to start doing my lunch duty again, I had to pinch myself that I was really back at work, back doing the job I loved. I was due to see one of my oncologists the following week for my 3 monthly check (which was running late) and I was petrified that I was about to have the rug pulled from under me. I had a new appreciation for life and what it meant to be alive. I woke up every morning and my immediate thoughts were of J and B and C, all lovely ladies who weren’t here to enjoy whatever the day would bring and I would vow to make the most of each day (not always possible when your kids are chittering about whose turn it is to empty and fill the dishwasher…but I try!!). My new motto was “Life is too short to be miserable” and I was determined to heed it. Please don’t let that big bad bastard of a cancer be back and take over my life again!!!

The following week saw me sitting practically shaking waiting in the oncology waiting room. Our wee ovarian ladies group was slowly but surely growing in numbers and I met a recent addition to the group up there. I’d found her as she was following Fi Munro’s new Facebook page and commented on something to do with the drug avastin (which Fi was getting to keep her cancer at bay now her chemo had finished) and how it’s not available here in Northern Ireland (as well as other drugs and clinical trials…we really are the poor, forgotten relation over here). She’d been diagnosed at the same stage as me 3 months later than me in December 2015 and was up getting her end of treatment scan results. She was a year or so younger than me, another example that ovarian cancer does NOT just strike post-menopausal women. We had arranged to go for a coffee after we got our appointments over with. I saw oncologist 2 and gave her a big hug as I knew she’d been J’s oncologist (J never saw oncologist 1 for whatever reason) and had also been pretty devastated by J’s death (repeat after me…we are not numbers to these people). She had a good feel around my abdominal area saying that everything felt good (if a bit wobbly – my observation, not hers!) but admitted that if anything were growing in there, it would be too small for her to feel probably. Great!! We both agreed that I would be OK the next time to get my bloods taken at my GP’s surgery and then get a phone call from my CNS with the results. I then got my bloods taken for my CA125 test. I was told that if they were fine I wouldn’t hear from my CNS…so I would be on tenterhooks waiting for a phone call NOT to happen. I left feeling slightly more at ease but realising I was in for a few fretful weeks. Christine (I have cleared it with the ladies that they are happy to be named!!) and I then went for our coffee (her results were great – NED for her too, phew!!) and got chatting while our hubbies disappeared for a bit. 2 women talking about our bowels, ovaries and hot flushes is probably too much for any man to stomach!

Whereas I had been told that I had quite possibly been cured by my surgeon, Christine was told that, on average, the crappy cancer will recurr after 18 months. This made us both shudder! Again, I’m not a fan of any prognosis, especially one involving time-frames. It just gives us cancer peeps a date to gnaw and worry away at the back of our minds while we try and go on living, every day being a day closer to that dreaded date. Some people might not mind knowing, or want to be told everything they possibly can, but I sure don’t think it helps us mentally. We had a great chat and Christine was looking forward to meeting the rest of the ladies on our next wee day out.

There then followed a rough couple of weeks, trying to keep a lid on the old anxiety over these CA125 results. I had to go in to see my GP for something (no idea what…chemo brain!) and had learnt that my GP would have my results. I plucked up the courage to ask the receptionist to look up my results and nearly collapsed when she said my CA125 was down to 12!!! (It had dropped to 15 at the end of my treatment). Yippee!! I was good for another 3 months…roll on Christmas!!!…but not too quickly!!

The pics are of Granny (OK, OK, it’s me!!) and the kids in front of the Hogwarts model, Sue Perkins (yeah, again, it’s really me) going shopping (on Platform 9 3/4…not that anyone can tell from that angle!!) Plus my new first after-chemo haircut…a wee mohawk!…and the happy Barehams having a meal with my uni mates.

Big hugs,

Carol xxx

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ONWARDS…

The morning after the night before, I felt like I’d been run over by a bus that had then reversed and gone over me again! Let’s just say I took things very easy that day…I hadn’t danced and partied that hard for a very long time! I kept myself busy by counting all the money raised…it was up to over £1700!! I was stunned and amazed and so very grateful to all my fab pals for rallying round and digging so deep. The money was still rolling in over the next week or so and hit £1970!! After a couple of last minute donations, I had £2000 to hand over to the Friends of the Cancer Centre. What a fantastic amount!! Thank you everyone for your support (I know a lot of you are reading this – hopefully I won’t make anyone cry reading this post!!). It meant a lot then and still means a lot today.

It was also around April/May time in 2016 that I stumbled across someone else who has helped me heaps and I’m now so glad to call a very dear friend. I was now following Target Ovarian Cancer on Facebook and they posted a blog by Fi Munro (I could call her “F” but I’ve checked I can name her!!) who was writing about how she’d been diagnosed with Stage 4 (the crappiest of crap stages) ovarian cancer at the very young age of 30. I had soon read all her blog posts, detailing how she had had to endure an ectopic pregnancy followed by months of missed opportunities to get her cancer diagnosed. I was distraught reading about how she was never going to be able to have a much longed-for child (another example of just how shit and devastating this cancer can be) and knew I just had to open my gob…or in this case reach out by typing a few wee lines of text on one of her blog posts. She was facing her Big Op…more accurately her Humongous Op!…and I wanted her to know that, even though it was going to be tough, it was do-able as I was living proof! I followed all her progress and recovery and was on hand to talk her through the tough-going post-surgery chemos. It was the start of a beautiful friendship and much-needed support for both of us and showed that distance is no object…it really does help knowing that you have someone to turn to who knows what you’re going through even if you can only give each other virtual hugs! It goes without saying that she’s been a huge influence on me finally trying this blogging malarky myself! The title of this post is a word Fi’s much-loved and much-missed chemo buddy used to say to her all the time…it’s a very powerful word and does help you to refocus and push on through whatever tough times you’re facing.

Which brings me to me trying to move ONWARDS after the shockingly shit time after J died. I was very lucky that by now I had built up quite a fab support network with the “ovarian ladies”, my Action Cancer Peer Mentor pals, the fab Fi and of course all my friends and family. By this stage, I had realised that I coped best when I got to talk about my hopes, my fears and my grief and I have been very blessed having so many people in my life I can turn to.

It is actually very hard to move onwards though…another thing that isn’t talked about anywhere near enough is the crippling fear that the cancer could/might/will come back. Its like a constant little niggling doubt just sitting jiggling away in the back of your brain. Unfortunately for me, I was in the process of giving myself an education about this shitty cancer and reading all the info I could (NOT Googling…stick to trustworthy sites – see my recommended links page). This meant that I unwittingly came across another woman’s story. She was diagnosed at stage 3c (same as me) and she quoted the statistics of how likely she was to have a recurrence (the proper term for the cancer rearing its ugly head again!) and went on to say how she HAD recurred. My blood ran cold at the statistics staring me in the face…I had done so well up until now avoiding these shitty figures!! But once seen, it can’t be unseen (you’ll notice I’m NOT quoting ANY statistics and I never will!!) and I struggled getting the stats out of my head. I went around telling anyone who would listen “….but there’s a high chance this will come back…” not to try and get sympathy but to try and give my nearest and dearest a heads up so that they weren’t knocked sideways IF I had a recurrence. I tried to focus on the fact that there was a percentage of women who didn’t have a recurrence and reminded myself of my surgeon’s words about “either a complete cure or a long time before anything comes back.” These were tricky times and I’d be lying if I said my mental health didn’t take a battering. Learning to adjust to the “new normal”, the rather odd-looking stranger with the ultra-short hairdo staring back at me in the mirror was tough. Worrying constantly about every stab or niggley pain meaning that the shitty cancer was back. Getting out of bed bent over like a 90-year-old, crawling around work when I used to stomp about the place, needing to sit down and have another fecking wee rest because of the fatigue and trying to get used to having a hot flush spring on me at any given moment…it was all just so EXHAUSTING!! I was so glad to have my family to fall back on and many of my friends still there to talk to and support me…if any of you reading this have a friend/family member who has finished treatment for cancer and you’re thinking “Sure that’s them cured now, I’ll just give them some peace for a while…” please just check up on them, they will really appreciate it! Anyone who has had a brush with cancer – be it a year or 20 years ago – will still suffer from flashbacks and the fear of it returning, believe me.

A fellow Peer Mentor at one of our training days gave me some much-needed advice. She had lymphedema in her arm caused by the surgery she’d had for breast cancer. She informed me that Action Cancer (and Macmillan) offer 6 free sessions of complementary therapy and her arm had improved greatly since she’d been. I booked my first appointment online and off I went, not sure what to expect as I’d never had any complementary therapy before, but willing to give it a go! The first session was all about my needs…what were my areas of concern that I needed the lovely therapist to hone in on. By the time we’d finished the questions, I couldn’t wait to get started! I kept myself busy going into work for my cuppas and chats, getting my tattoo finished and soon enough my next appointment rolled around.

My therapist suggested she do something called the “Emmett technique” on me. This would act as a reset button on my joints. She carefully selected each joint…wrists, elbows, ankles, hips, the lot!…and pressed down on them with decreasing pressure 3 times. Oh my word!!! The hour was up in no time and I felt like I was drunk! What sort of mad voodoo was this?? I felt amazing! The therapist left me to come round for a few minutes and I drove home feeling like I was floating on air! The proof would be the next day when I creaked my way out of bed…feck me!…if I wasn’t walking taller and straighter with no aches!! Now I really couldn’t wait until the next session!! No wonder it is called complementary therapy…it won’t change how your cancer treatments work or don’t work but it really does give us cancer peeps a much-needed boost! Seriously book your free sessions!!

At my next session, I chose to have a back massage. It was utter bliss! Be warned though cancer peeps that we can’t just rock up to any spa for treatment – the therapists must be trained to be able to offer treatments such as massages to us. I opted for a head massage the next time (again, oooohhh sooooo niiiiccce!) but it was the next treatment I went for – reflexology – that really opened my eyes ( my eyes actually rolled practically as soon as my feet were touched!) to the sheer indulgence of complementary therapy. It was amazing!! I felt completely relaxed, all my problems seemed to melt away and I walked out of there feeling like I was wearing sponges on my feet rather than the usual bricks (my feet were still suffering badly from the chemo…they were very tingly and numb). There was just one problem…the therapist picked up on an issue with my lungs (oh feck here we go!! Just how does she do that by rubbing my feet??) but she soon deduced that it was due to me talking too much!! Me???!!! Surely not!!! I went for my final session and chose the reflexology again and soon realised that – just like L’Oreal always say – I am fecking worth it!! So I found a local complementary therapist (yoo hoo!!) who I have been going to on a regular basis ever since. She has also helped me enormously mentally and is another big reason why I am now blogging! My mental and physical health have both  improved so much thanks to complementary therapy and it has certainly helped me to move ONWARDS!!

With the summer hols fast approaching, it was time to make another decision…where to go on holiday??! I LOVE my holidays in the sun (which is a a rare sight in the sky here in Northern Ireland!) but me and Neil were both dubious about me travelling too far from home and the City hospital…so we opted to go to England for just over a week and catch up with lots of friends over there. I’ll save all that excitement for the next post!

These pics are pretty self-explanatory…me presenting the cheque to Friends of the Cancer Centre and my finished tattoo!! It’s a dragon’s eye (Neil’s born in the year of the dragon) peeking out of lots of feminine flowers (to show that even without my ovaries I’m still feminine…coz nothing says feminine quite like a huge tattoo!!)…including the very apt lotus flower and a butterfly. I call it “Hidden Strength”.

Big hugs,

Carol xxx

The best news and the worst news

So…where do I even begin with this post?? It’s such a hard one to write but it will give you all the exact reason why raising awareness of this shitty cancer means EVERYTHING to me…

By this time it was early April 2016 and I had started wearing my wig more as I was venturing back into school more and more for cuppas and chats with my lovely workmates. I really needed to do this for 2 reasons…to help me recover physically from the treatment and Big Op AND to get me out of the house, away from fecking Jeremy Kyle…to help me heal mentally as well. To say my mind was in overdrive a lot of the time is putting it mildly. Trying to second-guess those scan results, wondering if every ache and twinge was this shitty cancer rearing its ugly head again was enough to put my head clean away! So the craic I got at work was sooo needed! I wasn’t ready to start working again so I was extremely grateful that I could come in and spend time in the school I love. That’s why the wig went on…I didn’t want to scare the pupils!!

I was keeping in contact with J and A loads…especially J as she was starting her clinical trial now. She was having to spend her first night on the trial in the Cancer Centre at the City hospital to make sure everything was going OK and then she was going to get to go home. We were attempting to arrange to go out for a meal with our hubbies and kids once things settled down…but unfortunately J was readmitted to hospital within a day or 2 to be kept a close eye on.

I started my training to become a Peer Mentor for Action Cancer too. I met the amazing J2 (from the Being Together Day) as she was in my training group too! There were 9 of us being trained and it soon struck me how bang on the money they were recruiting us lot. We all had plenty to say and the craic was mighty! Our poor trainer hardly got a word in edgeways!! The course was meant to be 3 sessions but because we all talked so much, we needed an extra date to complete the training! Not that any of us were complaining as we all got on brilliantly and many firm friendships have been made since those fun days. In case you’re wondering what a Peer Mentor is, they fill the gap between a counsellor and a friend and can understand cancer peeps better than most as they have/had cancer themselves.

It was on one of these training days that I popped in afterwards to see J in hospital. She was with her mum and dad so after giving them all big hugs, her folks left us to it. She was looking great and was rocking a cute wee hat rather than her lovely, long, dark wig. We compared hair regrowth (both coming along great and actually not looking too daft with our buzzcuts!) and had such a great wee chat. She was explaining that her trial was aiming to cut off the blood supplies to her tumours so it was a race against the clock as one tumour was starting to cause a bowel blockage and she was now struggling to keep food down. She was on fortifying shakes to help her stay as healthy as possible and was still hopeful that the trial drugs would soon work their magic…and I was hopeful right along with her. I gave her a great big hug and said that I hoped the next time I saw her would be when she was back home.

I was due to go up and get my scan results in a couple of weeks time (I was trying to console myself that I’d have been seen more urgently if there was bad news) and in the meantime I was busy organising a Fundraiser for Friends of the Cancer Centre at our local Boat Club and trying to get the Ovarian Ladies meeting up for the first time. I was popping into a lot of the local shops on the Main Street in Larne (with an official letter from Friends of the Cancer Centre so I didn’t look like a complete eejit/chancer!!) and was overwhelmed by the generosity of our local business owners. My tattooist also gave me the star prize…a tattoo voucher which everyone wanted to win! I had a hard time holding back the tears in several shops…I learnt that sadly too many people all have their cancer burdens to bear. I set the date for the do for the Saturday 28th May.

I was still holding out hope that J would get well enough to join the Ovarian Ladies at our first meeting so delayed setting a date until she was feeling better. My scan results date was fast approaching now so my scanxiety was sky high…and then I got a text from J that made me go cold all over…she had had to come off the trial as her bowel blockage was causing major problems. NO!!! NO!!! NOOOO!!!!!! I just couldn’t take the news in…not the lovely, giggly, gorgeous J!! The young mum, the loving wife, the much-loved daughter. I felt the pain in every bone in my body and was heart-sore. I said I’d pop in and see her when I was up getting my scan results, there was no chance of her getting better now, or getting out of the Cancer Centre.

The day of the results arrived and I was a bag of nerves. Neil came with me and he was unusually quiet too (I know when he’s worried coz he stops ripping the piss out of me). We sat and held hands in the waiting area until I was summoned to the consultation room. We were met by a different consultant – another woman – who asked me how I was feeling (nervous/bricking myself/climbing the fecking walls????) before she announced that my scan showed No Evidence of Disease!!! (NED for short) Halle-fecking-luyah!! I dissolved in my seat and nearly slid to the floor. “Does that mean I’m in remission?” I tentatively asked. “We tend to talk more in terms of NED these days…” she explained “but, yes, that’s what it means.” I couldn’t take it in, I just sat and grinned as she explained what happened next…I’d be getting blood checks every 3 months to check my CA125 levels. I could either be reviewed by one of my oncologists (which tended to run later than 3 months) or get a blood sample taken at my GP’s surgery and get the results phoned through to me about a week later. I opted to see an oncologist as I figured I would cope better face-to-face for the first check up. She made a note of this and – after a nurse taking some blood for my current CA125 reading – I was leaving in a much better frame of mind than when I’d walked in, as was Neil.

I now had to summon all my strength to go and see J. Neil waited out in the waiting area and off I went. I was steeling myself for what I would see…and I felt awful for getting such good news when J was lying in this same building dying from the same shit disease. I popped my head through her door and my heart nearly stopped…J was looking so much more gaunt apart from her swollen tummy (that’ll be the ascites making its presence known again). I spared a glance at her lovely hubby sitting in the chair and the look on his face and tears in his eyes said more than I needed to know. I felt myself welling up but slapped my most idiotic smile on my face that I could muster and turned to J and told her I was relieved to see her looking as good as she was. I told her my news and she was genuinely delighted for me (I have since discovered just how precious good news is…it gives us all hope). We were sitting chatting, mostly about my upcoming fundraiser, meeting J2 (who J had been in contact with on messenger), my training with Action Cancer and what nutty things were going on in school. Her Professor (not the one who I had shocked, but the one who had seen me many months before with my old bowel problems) popped in to see her and J told him my great news. Again, he was chuffed for me and I was totally humbled and thanked him so very much. It was obvious how much he cared for J and was hurting every bit as much as me and her hubby were. We are not just numbers people!! Every single person who I have encountered in the NHS from the healthcare assistants to the nurses to the oncologists and the surgeons are doing their damnedest to keep us alive. They deserve nothing but our utmost respect and gratitude. How they keep doing their jobs at times I really have no idea…they are the brave ones!! I chatted on with J for a wee while longer but was conscious that she was exhausted and needed the rest more than chatting away to me. I gave her a gentle big hug and a great big hug to her hubby too. My heart was breaking into tiny pieces for J and her family and it certainly made me appreciate my good news all the more. I just wished with all my heart she had got the same good news.

When me and Neil got home, we told the kids my news and seeing their reactions got me smiling again. Neil could see I seriously needed cheering up so he said he’d take us all out for a meal to celebrate…I really was turning into a bloke without my ovaries as the way to my heart was certainly through my stomach these days! We had a lovely evening and it was just what I needed to cheer me up…but always lurking under the surface were my thoughts of J.

The next couple of weeks passed in a blur of tattooing, Peer Mentor training, and getting ready for my fundraiser. I kept in touch with J but her texts were getting shorter and fewer. She was needing to get her ascites drained frequently and getting weaker by the day. I was also updating A on how J was and together we helped each other with our hearts breaking. With the realisation that J was never going to make it to an Ovarian Ladies meeting, I booked a table for us at the Dunsilly hotel in Antrim the Saturday before my fundraiser. I picked one of the ladies up in Carrickfergus and we chatted the whole way to the hotel like a couple of reunited old friends. There were 7 of us there that day and it was such an uplifting, funny and happy day! We never stopped talking! A joined us as did another non-Facebooker and from that day onwards, the support and love we have given each other is priceless. A2 and J2 couldn’t join us that day as A2 was recovering from her latest chemo for her recurrence (oh yes! The cancer that “always comes back”) and J2 turns out to be a galavanter extraordinaire!! (Those of you reading who know who J2 is will know how true this is. She really does embrace her life to the full!) It really was a fantastic afternoon, spent with women who really “got” you (and all the bowel madness!!) and all sharing the same hopes, dreams and terrifying fears. I chuckled away as “R” (the last lady who I had talked to at the Being Together Day) was telling us about how her anxiety went through the roof when she lost her aromatherapy stick – given to her to ease her fecking anxiety!! We all left that day feeling so happy. I grinned the rest of the evening away, happy that this cancer “warrior” had found her tribe.

And boy, did I need that tribe as I got word on the Monday from J’s hubby that she had taken a turn for the worse. I was heart sore for that wee family and wished there was something…anything…I could do. Feeling so helpless and powerless Sucks. Hard.

The news I was dreading came that Wednesday 25th May 2016. J had died. Heartbroken, I sobbed reading the message again and again, not wanting to believe the words I was reading. The funeral was scheduled for the Saturday 28th – the day of my fundraiser. I arranged with my nurse pal bestie for her to take the kids and start setting up the Boat Club so that me and Neil could go to the funeral.

Let me just say that I haven’t had the strength to go to another funeral since J’s. I started crying as soon as I got into the church and was handed the funeral order of service with J’s happy, smiling face on the front…and I couldn’t stop crying. My heart broke when I saw J’s hubby and her 2 kids coming into the church. Cancer, you utter, utter bastard. How dare you tear families lives apart like this?? For the first time ever, I wondered “Why me??”. Why was I the only one out of us 4 chemo buddies to have got good news? (A’s cancer had shrunk right down but the “bitch” – her word – was still there). I have since discovered that “survivor’s guilt” is a real thing that is rarely discussed as it is a difficult subject…it’s like “please feel sorry for me because I’m still alive!”. I know, makes no sense.

I knew nobody at the funeral apart from J’s hubby and parents…but I had done a bit of Facebook stalking (my bad!!) and knew what the guy whose wife had worked with J (and he worked with my nurse bestie) looked like. I gurnily and snottilly introduced myself and Neil to them and us ladies gave each other great big hugs and sobbed together. It was a huge funeral and Neil nearly embarrassed the pair of us when his phone started playing the Muppets theme tune in the middle of the graveyard. One of our Muppet kids was ringing him. He sprinted off leaving me to my gurning and when he came back told me the agenda for the evening. We realised that there was no way we were going to get near J’s hubby or parents so we decided we’d better head back for the fundraiser. How I was meant to doll myself up and straighten myself out for the night I had no idea…but when I got down to the Boat Club and saw my friend and our kids and all the work they had put in, I was back to being my belligerent bugger self and was determined to put on a smile and party hard.

Seeing all my beloved friends from my workmates, to my besties from near and far, my PTA pals and my friends who have known me since my school days all come out in force to support me was mind blowing. The drink was soon flowing and the money rolling in and I was in the thick of it all…drinking, dancing my legs off (while my daughter giggled away recording me!!), taking the mic to do the raffle and just having an amazing night. Then my mates told me they’d counted all the money so far and it was nearly £1400!! I was gobsmacked and took to the mic again to thank everyone so much as it was even more important to me now, giving back to the place where J had spent her last few weeks. My voice broke while I was saying this and I had another wee gurn…and that’s the way that rest of the night went…chat…drink…dance…gurn! It was one of the best days coupled with one of the worst and a day I will never forget no matter how bad my chemobrain is!!

To cheer us all up…the pics are of me “washing my hair” in the sink!! Out celebrating my results with an Irish coffee, rocking the buzzcut look when it finally got too warm to wear my wig and my wee family at the fundraiser. Thanks for reading folks…that’s the toughest one done you’ll be pleased to hear! If I can save another family from this heartache by talking about my bowel habits then I’ll do whatever it takes.

Big hugs,

Carol xxx

 

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Being Together

So my last chemo was over but I still had to go through my bad days and the usual Bowel Watch. This time, my bowels were already not great before I even had my chemo, so to prevent a stay in hospital, I had taken my Dulcolax on the Tuesday evening and when it didn’t appear to be working, I decided I needed more help. I phoned my GP’s surgery and spoke to a receptionist about getting an enema. She told me there were 2 types I could get…”Just get me the one that looks most like a rocket!” I said (oh jeez, I never learn!!) and told her Neil would come and get it shortly.

Neil went and picked my “rocket” up a wee while later…oh feck!!!…it looked HUGE!! And very rocket-like!! I think this was possibly the same thing I’d been given for my pre-op bowel prep!! Neither me or Neil was looking forward to using this fecking rocket (coz poor Neil would have to do the dreadful deed with this bad boy!!) so we put it off for as long as possible. Neil took Elliot to his rugby practice and the deal was if I hadn’t “gone” by the time they got back then we’d use it! I spent the next hour glancing up at the bad boy and that must have been enough to do the trick. Neil came home to the happy news that just the thought of the enema had made me shit myself!! I’m not sure who was more relieved!!

I got over the rough days and then tried to readjust to, well, living again. It was weird not getting any brown envelopes in the post with my next dates for blood tests and chemo. When I was going through treatment, it was like I was living in a very protective, safe bubble…and that bubble had now just burst and I was having to fend for myself again. I didn’t know whether I still had cancer inside me (there was no word yet of my end-of-treatment ct scan and results) and I can only describe how I felt at times as being something like PTSD (Post Traumatic Stress Disorder)…when I looked back on all that I had been through it really was like “What the FECK just happened there??!!”.  I kept in touch with J, A and B. Me and J were both looking forward to the Target Ovarian Cancer Being Together Day in Belfast and were hoping A might be able to join us…but she was still recovering from her last chemo so was going to give it a miss. B wasn’t feeling well at all…the cancer was causing her a lot of grief and pain. My heart went out to her so much.

I took my fab nurse pal with me to the Being Together Day. I chuckled as one of the Target ladies tried to give her the cancer patient folder (she has a lovely short hairdo while I wore my wig and my beanie hat – as seen in the pic). It was so good to see J and her mum, it was the first time we had been anywhere together outside of the City hospital and boy did it feel good!

My mate spotted another familiar face from her work who was there with her daughter and the 6 of us were soon chatting away like old friends. J was telling us all about her hopes of being deemed suitable for a clinical trial and was full of hope and I was so full of hope for her too. She just needed to get over all the chemo she had had and was hoping she’d start the trial in April. There were 4 different workshops and we could pick 2 to go to. I went to a Mindfulness one first which was so relaxing and amazing I nearly nodded off I was so chilled out! We then had a break for lunch and more chatting before heading back into the conference suite for an excellent speech by a fellow ovarian lady (I’ll call her “A2”) and an “Ask the Experts” session involving our CNS, J’s surgeon and a clinical trial expert. During this session, another younger lady questioned the experts and both me and J sat up to get a good look at who had spoken – she seemed so knowledgable and was another lady who was way too young to have this shitty disease (I’ll call her “J2”). The question I’d submitted when I registered to go was one of the ones selected to be asked. It was along the lines of how us patients – the vast majority being diagnosed at advanced stages of this disease – could help get women diagnosed at earlier stages in the future. The answer was…raise awareness of the symptoms that we had known nothing about before we were diagnosed…alert women to the signs we had missed so that they can hopefully be diagnosed at a much earlier stage. That lit a small fire in me that has only burned brighter and hotter ever since.

Our second workshop was all about raising awareness and support. Me and J had both picked this and were able to sit together at one of several tables to chat and discuss the topic with other ladies. By the end of this session I had written down a couple of ladies names to find on Facebook and was all on-board the awareness-raising train and wanting to form a group for OC ladies here in Northern Ireland. I ticked the boxes in the questionnaire that I would be happy to tell my story to Target Ovarian Cancer and that I’d like to join their secret Facebook support group. At the end of the day, me and J were standing in the foyer and were lucky enough to get chatting to A2 who I also added to my list of names to add on Facebook and she also gave me the name of the young woman who made me and J sit up and take notice during the Ask the Experts session. J and her Mum then left to head home while me and my mate kept chatting away…well, my mate was mostly listening to me prattle on! Another lady came over to join me and A2 and I added her name to my list of ladies…and in that moment our little group of “Ovarian Ladies” was born.

I kept on blethering to my (very-tolerant!!) friend the whole way home. I was buzzing!! Instead of being a day where I was petrified of being told shocking statistics, I had left feeling empowered and full of a determination I had never felt before. It was a day that has shaped everything I have done ever since.

Within a few days, me and J were friends on Facebook with A2, J2 and several other ladies. I started a group private message with them all and we were soon all chatting away to each other pretty much every day. We were all keen to get together to meet up and chat…but we were dotted all over Northern Ireland so we’d have to choose somewhere that was as central as we could get. I was also conscious of the fact that J was about to embark on a clinical trial and I wanted her to be fit and well enough to join us.

With chemo finally over, I was able to go to a fantastic event called Look Good Feel Better. Every session before then had clashed with my chemo so I was looking forward to this treat. It was held in Antrim…and my mind kept the name of a hotel I passed on the way as being a potential meeting point for us Ovarian Ladies. I had a wonderful afternoon being given a bag full to the brim of make-up and beauty products (all free and for me to keep!!) and shown how to draw my eyebrows on more professionally than I had been up until then. There were several beauticians there who had given up their time free of charge who helped us ladies give ourselves a much-needed makeover. I chuckled when I pulled a mascara out of the bag…the beautician working on me told me that I might be surprised to find I still had a few eyelashes to put mascara on. Oh yes!! Gobsmackingly I had one whole eyelash to coat in mascara!! I certainly walked out of there feeling much better and looking better than I had going in. These sessions are run all over the UK and I would highly recommend all cancer ladies to go along to one.

My brown envelope finally arrived for me to have my ct scan and results appointments. It was squeaky bum time!! It was a couple of weeks before the date of my scan and I’d waited for the 4 weeks since the end of chemo so I  walked into my local tattooists for my first stint in the chair to get my rather large new tattoo. A lot of people thought why the hell would I willingly put myself through a ton more pain after all I had just been through…but this was pain on my terms and my own way to reclaim my body… my personal “EFF YOU!!” to the shitty cancer. It felt sore but good. I sent the exclusive pics to C (who me and J had kept in contact with from chemo 6) who was thrilled to see them. Getting a tattoo was on her bucket list which was looking more unlikely every day as her chemos had stopped working. She was only 40 and was a single mum to a 10 year old son. I was facing dark days with the knowledge that B and C were losing their battle with cancer dying of this shitty disease and was full of uncertainty with my own ct scan looming. I had kept my PICC line in for the scan, as that was a needle pain that I wasn’t so keen on, so it was arranged that, after the scan, I was to go up to the Bridgewater Suite to get it removed. The scan was the usual drinking the stinky drink, going in and out of the giant doughnut and feeling like I’d peed myself. I was more worried about how sore it was going to be getting my PICC line out!

When I got up to the Bridgewater Suite, the first face I clapped eyes on was J! She was surrounded by nurses who were all making such a lovely fuss of her. She was getting all sorts of tests done to make sure she was fit to start her trial. She was looking great and we were delighted to see each other. We chatted for a bit before J was taken off for her tests so me and Neil went and sat down in the waiting area. A short time later I saw another familiar face which made my heart break…it was B being wheeled in lying on a bed. She was now in a hospice and had been brought up to get her ascites (fluid that fills the abdominal cavity and causes our tummies to get very bloated and painful) drained. I went over to her and held onto her hands as tightly as I dared. She was looking so frail and weak and her daughter looked shattered. My heart went out to her. It was only months since she had lost her dad to this disease and now she was having to watch her mum die from cancer too. What can you say at times like this?? Sometimes hugs can say more than words so I gave them both big hugs and said I was thinking of them and that I was only a text or a call away.

I was called in to get my PICC line out and my dread grew again. This was bound to hurt wasn’t it?? My CNS happened to be there so I was excitedly showing her and the nurse how my tattoo was coming along…and then in the next breath I was sitting quaking at the thought of pain. My CNS laughed at my daftness…”If you can handle getting that tattoo done, you’ll be grand Carol” she said and she was right. One light tug and the line was out! It was a weird feeling as I’d become quite attached to it! I had a short chat with my CNS afterwards, talking about how I was going to begin training as a Peer Mentor for Action Cancer soon (it had been suggested to me by my Macmillan social worker who thought my gob might as well be put to good use!) which she thought was a great idea. Action Cancer is a local charity here in Northern Ireland which offers all sorts of help, treatments, counciling and a mammogram screening service.

While I was waiting for my scan results, I got the news I was dreading…B had died. Me, J and A were all so upset and feeling very vulnerable having the same crappy cancer. To make matters worse, a few days after we’d heard about B, me and J got more upsetting news that C had died too. Our hearts broke all over again…especially as a young boy had been robbed of his mummy by this shitty disease. Cancer, you bastard!!

Next, it was time for me to get my all-important ct scan results and J to start her trial…but I’ll save that for my next post.

Big hugs,

Carol xxx