Ho ho NO!!!

Sooo…where was I?? Oh yeah…scan results time!! It was now fast approaching December 2017 but November had one final shocker of a blow to hit us Ovarian Ladies. I got news from ‘A’s lovely daughter that her amazing Mum had died. I was gutted but glad that ‘A’ was finally free from all the pain and that she had managed to hold on to see her son who had travelled over from Australia to see her. She was determined to die at home and that’s exactly what she did. All throughout her treatment she never once complained. Sure she was angry about never being able to have an operation and she hated her “bitch” of a cancer – many people have a nickname for their tumours and hers was called “the bitch”. Very fitting (I called my original 2 “the twins”…yeah, I’m warped!). Here in Northern Ireland, funerals normally take place 2-3 days later. I was gutted all over again as I couldn’t go to the funeral as I had to be at the City hospital for my results and my latest magnesium drip. With hindsight, I’m glad I didn’t go – I’ve actually never been to another funeral since J’s as it totally devastated me – I have admitted to myself that going to funerals – especially when they’re for my very dear friends who have lost their battle died of the same shitty disease that I have – just takes one hell of a toll on me mentally. I just can’t do it.

So December rolled around and with it my scan results date (plus another vomit-inducing dose of magnesium to look forward to). I popped into the Bridgewater Suite first to get my latest magnesium number – it had finally climbed back up to 0.6!! By this stage I’d discovered a good magnesium supplement that I was taking religiously every night. Whether it was that or the weekly infusions that were finally doing the trick I’ve no idea. It looked like I’d need another infusion so I was to return to get it after my results. So it was time for me to head to see my oncologist. I hardly dared to hope that I’d reach the no evidence of disease (NED) stage again. All I knew was that my CA125 numbers had still been dropping and my shoulder pain had never returned. I was hoping for the best and preparing for the worst.

It was Oncologist 2 I went in to see – with Neil fretting as much as I was. The results turned out to be not too hideous but not as good as I’d hoped. My CA125 had dropped to 34 – normal is under 35 – so my oncologist was delighted with this result. I wasn’t – my CA125 at its lowest had been 12 so that value gave me the head’s up for the next bit of news…the 4 wee buggers were still there. BUGGER YOU FECKING BUGGERS!! The good news was that they had all responded to the chemo and had shrunk significantly. So no NED but the chemo had worked up to a point. It was a disappointing result with a silver lining. The oncologist did give me some excellent news though – she was happy with my magnesium result and said I didn’t need an infusion that day. Woo-fecking-hoo!! I said my goodbyes, went and got another sample of blood taken for my CA125 (I have no idea to this day what my current value of this is – it’s a number I don’t like dwelling on and just adds to my general uneasiness) and then practically skipped back to the Bridgewater Suite to tell the nurses that they didn’t have my delightful company for the next couple of hours!

It was then time to get the feck out of Belfast and pass on my latest news to my nearest and dearest – most people picked up on the “chemo has worked” part of my message rather than the pisser part that the cancer was still there so I got lots of relieved messages back which made me realise that, yes, the news could have been much, much worse.

And just like that, my life started getting back onto an even keel again. What I’m about to say might not make much sense…but I have found that it was easier to deal with mentally – knowing that I still had cancer inside me – rather than being put back in an anxious tailspin waiting and wondering when and where the wee fecker would pop up next. I have had to get my head around LIVING WITH CANCER and for the most part, that’s exactly what I’ve done. Sure, I have days where I do nothing but worry about what the wee buggers are doing inside me…but in between the 3-monthly scans, I generally cope pretty well and I know a huge part of that is thanks to my support network – my hubby, my kids, my rocks (sometimes rockets when we’ve had too much prosecco – you know who you are!!), my job and all my great friends there and – last but by no means least! – my ovarian ladies and fellow cancer buddies – both here in Northern Ireland and my online pals. I’ve said it before but it’s worth repeating – nobody gets cancer peeps better than other cancer peeps and I am so glad that I’ve made so many firm, loving friendships with so many amazing people. Give yourselves great big hugs from me!

Sooo…it was back to working nearly a whole week at a time – bar the hour or so I’d need to disappear to get my PICC line cleaned and checked by the district nurses and my bloods taken for my magnesium levels and then the day a week I’d have to go up to the City hospital for my magnesium results and the dreaded drips. It was so much easier this time to cope at work because I’d kept going into work during my chemo. I wasn’t as badly affected by fatigue and was nowhere near as weak as I wasn’t recovering from a big op this time. Sure, I’d had 7 shades of shit knocked out of me (sometimes literally – remember all that sharting??!!) but I was being my usual belligerent bugger and carrying on regardless.

My Macmillan social worker had referred me on to the Cancer Fund for Children as requested and they had kindly asked me if I’d like to bring a pal with me for a lovely pampering experience. I took Alison along to Daisy Lodge down in the Mournes (one of my favourite places and the views at Daisy Lodge are amazing) where we were completely spoilt. I had a lovely foot and leg massage and even had my wig cut into a slightly choppier do rather than the sleek bob – there is nothing sleek about me normally! We had the most relaxing yoga session and even made wee Christmas decorations. Oh and the food!! The food was all cooked in the on-site kitchen and it was delicious! But the best bit was meeting fellow cancer peeps. There weren’t many of us down there as the weather was pretty grim which meant some people had cancelled. It meant that those of us there were thrown together in such a relaxed, beautiful place and it was easy to just start chatting and not stop!! Having cancer is a double-edged sword – it can build barriers between the person who has cancer and some of their friends and family but when we meet other people with cancer, any barriers that might have been there come crashing down and we can start chatting straight away…finding out what cancer each of us has, what treatment we’ve had, what stage of regrowth our hair is at, enjoying hot flushes together – you name it, we talk about it and we hardly have time to draw breath!! It was a very special experience. Any families affected by cancer please do get in touch with Cancer Fund for Children – I can highly recommend it and am so grateful to my kids’ teacher for suggesting the charity to me! It is for all kids affected by cancer – both those who have cancer themselves or who have a parent who has cancer.

The next day I was back up at the City with Alison again for my latest magnesium drip. I was in for pleasant surprise – my magnesium was holding steady at 0.6 so I didn’t need a drip and my oncologist was happy that it was stabilising so I could get my PICC line out!! About fecking time and a very Merry Christmas to me!! If anyone doesn’t know what a PICC line looks like, have a wee nosey at the pics. I have to be a wee bit different as per fecking usual and have mine anchored to my arm by something called a stat-lock as the usual device is embedded in your arm and contains nickel – something else I’m allergic to besides carboplatin chemo!! Thankfully I remembered that allergy before I got my first line put in back in 2015. Phew! It’s pretty self-explanatory that there’s a before and after pic of my arm there!

It was now full-steam ahead to Christmas and my birthday – I made it to the grand old age of 45!! Yippee! Unluckily for me, I had caught a stinking cold AND I had given myself a fat lip the night before my birthday when I fell asleep reading my tablet in bed and it fell on my face! It takes a special kind of stupid to manage that manoeuvre!! There was nothing else for it than to go out and drown my sorrows and spice things up with a yummy curry and lots of booze! My nearest and dearest joined me – Neil and our kids, my Mum, bro Davy and his better half Robyn and their wee boy Logan plus my 2 blood-runner pals Alison and Helen. Prosecco, an Irish coffee and a hot toddy (whiskey, boiled water, plus honey, cinnamon sticks and cloves – yummy and great for colds!) when I got home all meant that I woke up the next day with a mild hangover but feeling much better stinky-cold-wise. My day got worse when I got the news that I just knew was coming…’A2′ had died. Our wee group of ladies had now lost both ‘A’ and ‘A2’ in a matter of weeks. It was hard news to take – my heart went out to the families whose Christmases would never be the same again and, like with ‘A’, I was glad ‘A2’ was at peace but just gutted that this bastard cancer had robbed another fun-loving, passionate, vibrant woman of her life.

Christmas was a lovely, relaxed affair. Christmas Eve saw Neil and the kids all gathered on the floor all x-boxing together while I captured the moment for posterity. See the pic! They’re a sociable-looking lot aren’t they! The main thing for us all was that I’d successfully made it through another round of chemo and had lived to see another birthday and Christmas. These big events are so much more precious and special to us cancer peeps. We treasure them but can’t help wondering if this is our last birthday/Christmas/holiday. It requires giving ourselves a damn good shake and just enjoying the fun times when they come along. Nobody knows what is around the next corner, whether they have cancer or not. Us cancer peeps just feel things extra deeply. I compare it to taking my rose-tinted specs off – I’m seeing life in its most raw and beautiful state and can grasp how fragile and special it really is.

Neil had had his usual meltdown of what to get me for my birthday and Christmas and I’d made things even more difficult than usual by not giving him big hints on the Amazon wishlist by saying there was nothing I wanted or needed and to just go ahead and surprise me. He managed just fine and I was very happy with all my surprises. There were a few wee hiccups caused by my increasingly fecked-up chemo brain. One of Neil’s shirts was the wrong size…as was one of Elliot’s t-shirts…and I unwrapped a box of chocolates going “Oh! Great minds!! You might find something very similar in a mo Thea!”…only to find out a mo later that I’d used the wrong fecking wrapping paper and I’d unwrapped Thea’s fecking chocolates!! Whoops! Good job Neil’s always in charge of the Christmas cooking innit!!

The rest of the day was a relaxing success. Yummy food, the obligatory game of Monopoly (we used Elliot’s new Game of Thrones version – I still was the first one to be bankrupt, I nearly always am!) and lots of bucks fizz! The next day we went up to Davy and Robyn’s for more of the same and I had a couple of mates round that night for more games and watching Elliot kill Neil over and over and over again on the Xbox. Ahhh, good times!!

The next day saw us drop the dogs off for a wee overnight break at the local kennels while we escaped for a wee break back to Daisy Lodge. Neil and the kids were gobsmacked by the location and the sheer awesomeness of our rooms and of course the yummy food! It meant that I was unable to go to ‘A2”s funeral. Again, I had mixed emotions about this – but me and ‘A2′ had chatted on several occasions about how badly going to our chemo buddies’ funerals had affected us so I knew that if anyone could understand me not being there, it would be ‘A2’ herself. Instead, I made the most of being in those beautiful surroundings with my wee family and again got chatting to another couple of families who had either the mum or dad with a cancer diagnosis. When Daisy Lodge has events on, they always tailor it so that the families there always have the parents with cancer there together OR the kids with cancer there together.

Back home, we another big event to look forward to – New Years Eve round at Alison’s house. Certain events leading up to the night (death of the 2 ‘A’s being major ones for me) meant that the night was a huge success as the adults there got…a wee bit merry shall we say?? Neil was the only slightly sensible adult by the end of the night…Helen was squishing me to death with gigantic hugs declaring her undying love for me, Alison was ensuring our glasses were never allowed to run dry and was the hostess with the mostest playing all our music requests and I was doing my Single Ladies dance routine with Alison’s daughter as I’d had to come up with a routine to it for her group at Girl Guides a few years ago – Beyonce has nothing to fear, her choreography skills are still unmatched!! I’d also be highly put out when a song came on that I couldn’t stand (according to Neil my music taste is a bit limited…I argue that nope, I just don’t like shit music) and could be heard guldering “wank!!” when a rave song was played and then when “You’re beautiful” came on I was muttering “James Blunt…rhymes with….!!!” You can fill in the blanks!! One thing that is definitely not limited is my colourful vocabulary!!! I was back in a much happier state by the end of the night/middle of the morning. I just hope my singing Duran Duran all the way home didn’t break any windows or mirrors, waken sleeping babies, set car alarms off or make dogs howl the house down. I apologise profusely and can only try and reassure folk that the same thing won’t happen this New Year!! Aye right!! The hangover the next day was totally worth it – it was such a memorable (albeit a little bit blurry at times!) night…good friends and our families all getting together for a right good laugh with plenty of craic. A couple of the less messy pics are included here! It was a solid 2-fingered salute to the back of another mixed bag of a year and a big “c’mon let’s see what you can hit me with!” invitation to 2018 to hit me with its best shot.

Big hugs,

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End of the (second) line

It’s about time I did another blog innit…so here goes! It was now mid October 2017 and I headed up with my other “blood runner” pal Helen (she’s a healthcare assistant about to start her nursing degree and has had breast cancer so another ideal companion). It was the day of the bad hurricane when schools were shut and everyone was battening down their hatches. I had to hold onto my wig tightly so it didn’t blow away which had me and Helen giggling! I got my bloods taken and we were sitting chatting when something caught my eye…I was getting waved at by a couple of ladies tucked away in the corner! It was Shauna and her Mum Mary! I almost didn’t recognise Shauna…she’d started chemo so had lost her hair and was modelling a lovely scarf. It was so good to see her again! She was slowly adjusting to her rubbish diagnosis and we had a 2-way conversation (4 way if you include Mary and Helen!) this time rather than me blethering and them listening. All too soon we were summoned for our results and said our goodbyes. Thankfully my bloods were good enough for my last chemo on Wednesday and my magnesium was holding steady too so I didn’t need a drip that day. A lot of chemos were being cancelled because of the storm so me and Helen headed home for a yummy meal at a local restaurant…and then we got kicked out of there at 3pm because they were shutting early too! We decided to risk a wee drive along the coast (we like to live dangerously!) and quickly realised that it really was a wee bit windy when we saw the fallen branches and waves crashing over the railings. Oops! We turned tail and Helen dropped me home. We found out later that a concert we’d wanted to go to had been cancelled too…we hadn’t got tickets because I wasn’t fit to go anyway so we were relieved we weren’t missing out.

I was back in work the next day for my last wee bout of working before my chemo and the crappy week that followed. Soon enough I was back up at the Cancer Centre for my last looooong day wired up to the toxins. It really did turn out to be a really loooong day as the drip machine kept throwing beepy strops while I was getting the taxol so it took well over 4 hours rather than the usual 3. I got an unexpected phonecall in the middle of my chemo from a teacher at Thea and Elliots’ school. He was wanting to give me the heads up about another brilliant local charity called Cancer Fund for Children who have been fantastic with him and his family. I promised him I’d look into what the charity could do for my family and thanked him so much for thinking of me. It’s lovely when people reach out to support others and it gave me a big lift.

Yet again I didn’t fancy the hospital food…I really didn’t fancy any food by this stage. The nausea from the cisplatin was pretty constant by this stage…it was so bad that I’d finally stopped piling on the pounds. I was still bloated with the classic steroid moon-face but my appetite had definitely been beaten into submission. I nibbled on some sandwiches and crisps and nodded off a couple of times but it still felt like forever before I was finally getting my antisickness jag in my arm and being sent on my way. Just like the end of my last set of chemos, I left with a whimper rather than a bang. It had been a long day and I just wanted to get the next week over with so that I could start to recover. It was the usual lying on the sofa, trying not to overdo the dulcolax (I succeeded – no sharts! Yay!!) and eating my way through Robyn’s yummy chocolate treats again…one of the only things I could stomach (honest!!) along with my daily dose of tuna, cheese, mayo and pasta. I dug as deep as I could to get through the really rough days, hoping that I wouldn’t be needing more chemo any time soon and had my usual vomathon on the Monday morning. I was summoned up to the City that Monday again to get my magnesium checked and Neil took me that day. I was waiting for the results when I spied a familiar face – it was ‘A”s hubby! I really wasn’t with it as I introduced him to Neil forgetting that they had already met 2 years ago and sat with us ladies getting our chemos for all those months! What was he doing here? Where was ‘A’?? Turned out she was in a bed bay right next door getting her ascites drained…her bitch of a cancer was making it’s presence felt in a big way now. I asked her hubby if I could pop my head in to see her and he said she’d love to see me…so I got up and went and peeked round the curtain while saying “Cooo-eee! Fancy seeing you here!” It was so good to see her! She was shocked and surprised to see me but boy did we have a lovely big hug! I explained I was up getting my magnesium checked and I could see fine rightly why she was there – her tummy was all swollen with the shitty ascites. I’ve said it before but it’s worth repeating…I really fecking hate this bastarding cancer (sometimes a really good swear really does help!). We had a wee chat but I couldn’t stay for long in case my name got called and ‘A’ was about to get her drain put in. We said our goodbyes and promised we’d be in touch. It wasn’t much longer when I got the news that my magnesium was as pants as ever and I’d be needing another barf-inducing drip (good job I had kept my PICC line in I guess). I was resigned to needing these drips now for the foreseeable future and I was soon back in the Bridgewater Suite getting my drip. I ended up chatting to lady beside me. She had been diagnosed with ovarian cancer – stage 3b – 8 whole years ago!! I was gobsmacked – it gave me a lot of hope that ladies can and do live with this shitty cancer for a lot longer than ever predicted. She was getting magnesium too so we had plenty in common to chat about. It certainly helped pass the time and this time I made sure to ask for an antisickness jag in my arm to avoid the usual head-down-the-toilet later. I certainly tucked into my dinner feeling great back at home…but by 10.30pm I had assumed my position at the toilet saying turrah to my meal! I went off an awful lot of food for months after throwing it back up again but at least I was feeling better each time by the morning. Half term break was fast approaching so I had decided to just stay off work and recover. I really should have hit the town trick or treating, I sure did a good impression of Uncle Fester from the Addams Family…or yer wee girl from The Exorcist if I’d had a magnesium drip!

Half term was pretty quiet apart from a trip up to Belfast for Alison’s son’s birthday in an all-you-can-eat restaurant. Always great value for money when Elliot goes! We had a good giggle and Elliot was being his usual wee eejit…sitting doing Spock’s hand gesture not very subtly at a girl who – I have to be honest – was doing her best at trying to look like an alien. The more I chittered at him, the more he giggled and kept doing it!! Aarrggh!!

The next time I was up at the City for my magnesium drip, I mentioned to my Macmillan social worker about the Cancer Fund for Children so she said she’d do a referral for me. I also asked her to pass my mobile on to Shauna – I was always too busy chatting to her to remember to swap numbers plus yeah, fecking chemobrain!! I was getting used to these weekly drips now and the realisation that nothing stopped me chucking my guts up every night after having them. What started to concern me was that I was scheduled to have my next ct scan on the same day straight after my magnesium drip. There was no way I could drink the dirty dishwater on an empty stomach after the magnesium so everything was tweaked around so that I had my scan first. Another long day at the City – Helen had gone with me and I was put in a different ward in the Cancer Centre for my drip. I got a lovely big comfy seat and Helen sat in a smaller but still comfy-looking seat beside me. It wasn’t long before we had both conked out!! Bear in mind that we are both usually BIG talkers – it really had been a long day! Needless to say I had my usual barf when I got home. A barf a week I could cope with. The chemo-induced nausea had thankfully really eased by then and I was starting to enjoy food again.

Julie had been keeping us ovarian ladies up to date with how ‘A2’ was doing. Me and one of the ladies, Ruth, decided to be very independant and arranged to get trains up to Belfast to go and see A2 in hospital. We met up and took a wee walk up to the Ulster museum to see the lovely poppy display cascading down the side of the building – see the pic of us pair. Then we went for a lovely lunch and a cocktail for Dutch courage! We managed brilliantly to get a bus to the hospital and found the ward A2 was in no problem. Now it was deep breath time as we popped our heads in to see how she was. Her hubby and one of her daughters were in with her so it was big hugs all round. She was looking not too bad at all thank goodness but was having problems managing her pain. It was lovely to see her but heart breaking too as we knew she was too weak for any chemo and it was all about trying to keep her pain-free now. We had a good chat with her but were very conscious of not wanting to wear her out so when a nurse came in to check on her, we said our goodbyes and headed back to get our trains home. We were both so glad we’d gone together and very proud of ourselves for managing to plan the day to perfection!

Another big event happened while I was waiting for my scan results. Thea (after weeks of indecision) finally decided that she was going to go to her school year’s formal. A hasty panic-buying stint in Debenhams for a dress, shoes and clutch bag was very successful and thankfully I have a fantastic hairdresser who worked her magic on Thea’s hair and a fab friend who did her makeup. Both of these ladies are absolute stars so I arranged for bouquets of flowers to be delivered to them both while they were glamming Thea up. It was lovely being there to see them getting their bouquets! They certainly deserved them as when they were finished Thea looked so stunning! The pic below is of her all ready to head out. She had a great night too. She’s growing up way too quickly!

By this stage, I was back in work every day, except for Magnesium Mondays and popping out to the district nurses on a Friday to get my PICC line cleaned and checked. They also started doing my bloods for my magnesium so I didn’t have to wait quite so long on a Monday as they had my magnesium results ready and waiting. By this stage on a Monday, I was seeing Shauna regularly when she was up to get her blood checks (and we’d finally swapped numbers yay!!) and another ovarian lady – Margaret – was starting her second line chemo so it was great catching up with her too. One day, Shauna left her seat beside me to head home and another lady – Rhona – jumped into it. “I couldn’t help overhearing you chatting so I hope you don’t mind me wanting to talk to you…” she said. Of course I didn’t mind! It also shows how loud I fecking am if she had heard me! We had a great wee yarn – even though it was another devastating diagnosis of ovarian cancer I was hearing about – and added each other on Facebook and I added her to our wee secret group of ovarian ladies. Margaret did a sterling job of recruiting new ladies to the group too. Her and Shauna had yet to meet so I texted them both to say to look out for each other on their chemo day. Thankfully they found each other and Margaret added Shauna to our group too.

The ovarian ladies met up in mid November – only me, Margaret and Dorothy were able to come for the meal and a good old yarn but ‘A’ did manage to join us for some big hugs. I can’t lie, we saw a big change in ‘A’…her face was very pale and drawn and her tummy was very bloated with ascites. We were all so pleased to see her but we knew – as did she – that we probably wouldn’t see her again. My last-surviving original chemo buddy was dying. Devastating.

My all-important end-of-chemo scan results were now fast approaching. Was I going to hear the magic phrase “NED” (no evidence of disease) again?? Sure I’ll just end this latest post here on a cliffhanger and hopefully not take quite as long doing the next blog post!!

Big hugs,

Carol xxx

 

 

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More hiccups (and barfing!!)

It was now the last week of September and on the Monday, me and Alison headed up to the City for my latest blood tests. As soon as I entered the Bridgewater Suite, I spied a familiar face…’A2′ was sitting waiting to see our oncologist as she was hoping to start third line chemo asap. She wasn’t long back from a holiday to New York but was hospitalised just a few days after she had got home as she was in extreme pain. It’s fair to say she wasn’t in great shape – a far cry from the stoic, determined lady I knew and loved. I got my bloods taken and then proceeded to wait for the results. A2 went in to see the oncologist and didn’t come back out for ages. When she finally reappeared, she said that she was being given steroids for the week to build her strength up to hopefully start chemo the following week. I gave her a great big hug and we promised we’d stay in touch.

While I was still waiting for my results, I spotted another young woman sitting close to me and Alison. She was so upset and I started chittering quietly to Alison “I’m gonna have to open my gob here!” (I have been told since that my chittering didn’t go unnoticed and she was hoping I’d stay quiet – she knows me better now!!). I just knew in my gut that she’d had an ovarian cancer diagnosis (it’s not a great stretch as Mondays and Tuesdays are mostly ovarian and breast cancer patient days) so I spoke to the lady sitting beside her (I rightly assumed this was her Mum) and said my usual chat-up line…

Me: “Soooo what’s she in for?”

The Mum: “Ovarian…”

Me: (to myself “I fecking knew it!!”) Out loud…”Same here! And here I am 2 years down the line!”

I wanted to give this devastated family (her sister was there too) some much-needed HOPE – it is us cancer peeps’ secret weapon. Without it, we are sunk. Shauna (yep it’s you as if you didn’t know!!) was still too upset to really take in anything I was saying but her lovely Mum and sister listened to all I had to say (they had only just met me so don’t judge them – plus I was steroid-free at the time!)…I didn’t have anything that amazeballs to say, just that I was living proof that the treatment did work and Shauna could and would make it through. Her story is all the more upsetting as she had initially been told she had a different, completely curable cancer…she was then dealt the devastating blow that nope, it was actually stage 4 ovarian cancer. It’s hard enough when we’re told we have cancer but to be told that…no wonder she was fecking gutted! We were soon both summoned for our blood results and went our separate ways. My bloods were fine and the CA125 marker was still coming down so it was all systems go for chemo on the Wednesday. Oh happy happy joy joy boke boke!

I had my usual Tuesday in work ducking and diving away from the pupils before Wednesday morning dawned and I found myself back in the Cancer Centre for chemo number 5 (sounds a lot shitter than “Mambo Number 5″ doesn’t it!). All went swimmingly…I peed in the jug, I drank as much as I could stomach, all was grand for the cisplatin AND I had the presence of mind to ask for an extra anti-sickness jag in the arm before I left! This jag made all the difference and I was able to get home without needing my plastic pharmacy bag to vomit into…not that it mattered so much as Neil had taken no chances and had taken my car that day!! Cheeky bugger! It had still been a long day – not quite 12 hours from start to finish – but we made it home before my fave chippy had shut so I got to tuck in to some chips when I got home. I’d kind of gone off the hospital food (and doughnuts and the M&S fruit) since my vomathon so the chips went down a treat! The antisickness jag had the added bonus of making me sleepy so it wasn’t long before I headed off to bed for a decent night’s sleep. I remembered to only take one dulcolax that night (so hopefully no more sharting in the morning!) so my wee head might have been addled with all the drugs in me but I still had some sense lurking in me somewhere!

This time around in the days after chemo, I didn’t shart (woohoo!) and I didn’t get as severely down and depressed – I was still fecking miserable and nauseous and felt like hammered shit BUT I knew that I would soon be feeling better again. It was during my crappy days that Target Ovarian Cancer released their latest Pathfinder survey results. Julie (who was still going through her third line chemo) was able to go along to Stormont (where our local politicians are meant to work representing their constituents – I’m not even going to start on that sorry state of affairs!) where Target presented their findings. I was still feeling too yucky to go so I readily agreed to a phone interview instead with the Belfast Telegraph highlighting the lack of symptom awareness and how vital it is to know the symptoms – the article is the bottom pic below. They agreed to use an old pic of me from the tattoo article they’d done that previous November when I explained I was in too sorry a state to even try and get presentable for a photo! The article appeared the following week when I was beginning to turn a corner again. I was sick as normal on the Monday after chemo…but only in the morning and was feeling much better by the evening. So it was back to my usual routine of seeing Robyn and her wee Logie Bear on the Tuesday and back to work on the Wednesday. Yay for normality!! And boo for shit news!! It was around this time that I learned that things had gone from bad to worse for ‘A2’. She hadn’t been able to start her third line chemo as she’d been readmitted to hospital. An MRI scan had found the cancer had spread to her brain and she had suffered a couple of mini strokes. Things were looking dire for her and my heart broke. ‘A’ was also not doing great. The Letrozole wasn’t working for her so it was stopped. It didn’t take long for the ascites to make its presence known again but she was nothing if not determined to keep on living her life on her terms. How I hate this fucking cancer bringing such lovely and much-loved ladies to their knees. Between us, the NI ovarian ladies kept each other informed and were there to console and comfort ‘A’ and ‘A2’ and each other. We were already a tight-knit bunch (even though we’d only known each other for a year and a half at the time) but this brought us even closer as we all shared the pain and heartache.

On the Thursday, there was a change to the routine as I had been told to go back to the City as they wanted to do my bloods to check my magnesium levels. So up I dutifully went with Alison again. I got my bloods taken relatively quickly and then the waiting began…I wasn’t even sure if I had to stick around for the results so I asked and was told yes, just in case my magnesium levels weren’t great. It took nearly 2 hours before a lovely nurse came to find me and informed me that my magnesium level was at a very low 0.33 (at that stage I didn’t know that was crazily low) so they were organising a drip for me…excuse me??!! This wasn’t part of my plan for the day! Me and Alison were for going out to lunch fer feck’s sake!! Nope, the drip would be made up asap and they would then administer it over 2 hours. There was only one response I could manage when I heard this…”Ooh bollocks!” I exclaimed to the poor nurse. She assured me that I’d be hooked up as soon as possible but she knew I was peed off, not like me at all but I don’t like shitty surprises dumped on me!

It felt like forever before I was wired up to the magnesium drip. At least I was back in the Bridgewater Suite with other patients for company. As soon as I was settled, Alison headed off to get our lunch sorted out from the shop downstairs. It was now mid-afternoon and we were both starving. I tucked into a sarnie and crisps (see the middle pic below – I was just about able to smile again, through a gobful of food no less!) but was in a pretty shitty mood still, not so much for me but because I felt like I was making Alison lose out on her day off! She reassured me over and over again that she was fine (any wonder I love this girl to bits!) and she was fascinated watching all the comings and goings and all the patients wired up to their drips. As I said quite a few blog posts back, Alison is a nurse at the Royal Hospital for Sick Children so she is well used to a hospital setting but seeing so many people needing blood tests and chemo has been an eye-opener for even her. The sheer numbers of cancer patients is alarming these days and rising all the time. She was also able to see first hand how I wasn’t so unique in my attitude to dealing with a cancer diagnosis and chemo. She enjoyed the camaraderie and “all in this shit together” attitude  that many of us cancer peeps share. It sure does help pass the time…and so we were eventually hitting the rush hour traffic in Belfast and gradually making our way home. After some big hugs in the car and thanking her profusely again, I was back in my front door…still mildly peed off and starting to feel really “off”. I’m not sure what meal I ate that evening…but I do remember it coming back with some projectile force into my toilet a short time later!! What the feck was this fresh hell?? I was sick on and off the rest of the evening. I thought I was unlucky enough to have caught a tummy bug so I was soon tucked up in bed ready for a night of vomiting. I can’t remember how many times I was sick during the night but I do remember feeling heaps better again in the morning – so much so that I headed back into work! I really am a bit of a loony bin I know…but work really does ground me and gives me something else to focus my attention on rather than this cancer crap floating around my brain all the time. Of course my lovely Head of Science boss was appalled that I was in (he has since learnt that I’m a thran bugger when I want to be and sometimes there’s no turning me. Sorry Sir!!).

I worked happily away that Friday and the following Monday to Wednesday. Then it was back up to the hospital on the Thursday for another magnesium check which resulted in another 2 hour drip! Alison came with me again and this time we got chatting to a lovely couple. The wife was starting chemo for lung cancer and was taking it all in her stride. Her hubby was an absolute sweetheart who was just totally devoted to his wife. He would have done anything to have been rigged up to the chemo instead of her and he made me and Alison well up several times. It was a really heartbreaking but heartwarming experience all rolled into one.

That evening, I got that old, familiar feeling and ended up saying turrah to my dinner again. This time I realised that this was no coincidence – was the magnesium making me throw up now? I was already coping with a truck-load of nausea from the cisplatin…was I now gonna barf every time I needed a magnesium infusion? Un-fecking-believable! Thankfully, like the week before, I felt fine on the Friday so I popped into work again. When me and the kids got home after school, Elliot was buzzing. Along with one of his school friends, he had given a presentation to their year group nominating Friends of the Cancer Centre to be their charity of the year. Out of the four nominated charities, they had won by an overwhelming majority! He was so chuffed with his wee self and I was a very proud Mum. Having seen what the charity provides for the City hospital, it’s a charity I hold dear to my heart.

With the extra two hospital visits for the magnesium infusions, time had whooshed past even faster than normal. I was heading up the following Monday for my latest bloods leading up to my sixth and final chemo. Thank feck!!

I’ve already explained the bottom 2 pics. The top one is of me with my adorable nephew Logan. I’ll admit that only one of us is a natural redhead!!

Big hugs,

Carol xxx

 

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Hitting THE WALL

Collage 2018-07-27 23_34_16It’s weird…the further through this “journey” (on a fecking rollercoaster!) that I write about, the more foggy my memories get. This is particularly true when it comes to writing about my next set of chemos last September. It was such a hard time I think I’ve tried to erase it from my wee chemobrain! I’ll give it my best shot…here goes…

After all the sharty madness and extreme nausea from my first dose of cisplatin, it’s fair to say that I REALLY wasn’t looking forward to my next super-long day wired up to the toxic drips.

On the Monday, I went up for my usual bloods at a crazy-early time in the morning. I was too early to see ‘A’ and really nervous as my ct scan results would be in. I was seen by a registrar who was formal but nice. I warmed to him when he told me that my scan results showed that the chemo was hitting the wee buggers and they were all shrinking! Phew! I was so relieved and it made the thought of the chemo on Wednesday that bit easier to bear. That evening, I texted A to see how she had got on with her latest scan results. The news wasn’t good…in fact it was shit. The weekly taxol wasn’t working so she was out of options chemo-wise. They were now looking at giving her Letrozole to try and inhibit the oestrogen hormone which her cancer may have been receptive to. I was gutted for her but hopeful that the Letrozole would work. It was hard sharing my decent news with her but, as with all the ladies I’ve been lucky enough to meet online and in person, she was delighted for me. Other people’s good news really does give us a much-needed lift…it’s fair to say that us ladies are heavily invested in each other’s emotional and physical well-being.

I went back into work on the Tuesday with Elliot for one last day before another week of nausea and feeling rotten (preferably without any sharting!). Then it was back up to the City hospital for 8am on the Wednesday for another long day of chemo. At least this time I knew what to expect and was soon peeing into my jug and drinking as much as I could. I’d brought a book with me to read…not just any book but a book sent to me by Fi Munro – her book based on and named after her blog Love, Life and Mermaid Tails. She was wanting pics of people reading it here, there and everywhere so I got Neil to take a pic of me to send to her. Reading her words – particularly describing getting chemo and the awful side-effects really resonated with me and it sure helped pass the time. Neil did his usual disappearing act and came back with loads of yummy fruit and an even yummier doughnut. I was ravenous and grazed on whatever food was put in front of me. My fluid charts were grand so I had the usual bags of fluids before and after the cisplatin. A lovely nurse popped in with a questionnaire about  hospital experiences asking would I mind filling it in. I wasn’t going anywhere for quite a while so was happy to put pen to paper. Turns out the steroids don’t only affect my gob!! I wrote fecking essays for every answer and filled in every spare space on the pages! I pitied the person having to read my waffling but at least I’d finally tired myself out and slept for a while. Everything went like clockwork that day and it was looking very promising that we’d be escaping earlier than we’d been expecting. I really needed to learn to stop building my hopes up!! I had just been disconnected from the drip line when I started feeling really quite grim…which quickly turned into feeling bloody awful. I legged it to the bathroom without a moment to spare…unfortunately I didn’t have time to make it to the loo and just hurled into the sink…and I heaved and I hurled some more! Goodbye nice hospital dinner, farewell gorgeous doughnut, turrah mango and pineapple!!! When I got a short respite, I managed to crouch in front of the loo (the sink was a yucky mess by then) before carrying on retching. I thought it was never going to end!! When I finally stopped, I surveyed the damage. Oooh it was bad!! I was mortified that I’d done a stellar job of blocking the sink…I sheepishly emerged from the loo and popped into the corridor to find a nurse to tell her. I offered to clean up the mess myself but of course she wouldn’t hear of it (I wish I could have found the cleaner who would have to tackle that sink – they deserve a medal!). So after more sheepish apologising, I got my bag of drugs for the coming days and headed off to the car with Neil. We’d still made it out by 7.30pm which wasn’t bad going at all.

At that time of night, it takes about half an hour or so to drive home. We weren’t even halfway when a familiar feeling started forming in my gut…oh feckity feck seriously??!! HOW was there anything left to boke out??!! I tried to keep calm and take some deep breaths, thinking if we could just get off the motorway, we could pull into the car park of a nearby hotel and I could water (more likely burn with my bile) some plants. No chance, my stomach was churning and the boke was for erupting. I had a moment of clarity and tipped all my meds out of the (very strong) plastic, blue pharmacy bag. Just in time I got my gob into it and started hurling again. Neil was very relieved as we’d taken his car that day…heaven forbid I spew all over it! I finally quit boking again and we made it home where I collapsed in a heap. I honestly can’t remember if I ate anything that night…I was starving but also sooo nauseous. With hindsight, I should have asked for an antisickness jag or extra meds before attempting to travel home…but I just wanted out of there after my vomathon in the sink!

The steroids didn’t stand a chance of keeping me awake that night and when I awoke the next day I had my usual rash on my face and was still feeling like shit. I knocked my ondansetron, emend and antihistamines into me and headed off downstairs…in my thick-as-pigshit state the night before (and because I hadn’t crapped for a day or so) I had taken 2 dulcolax again (I really don’t learn!!)…so I was soon scuttling back upstairs chittering under my breath for being a “stupid fecking bitch” because I had gone and shit myself again! To be fair, I hadn’t been firing on all cylinders the night before…but I sure hadn’t needed THAT cylinder of mine firing up and out the next day!! Thankfully I got a much-needed break from my over-performing body orifices and didn’t shart or puke for the rest of the day. Halle-fecking-luyah! I just lay on the sofa in a semi-comatose state and let the rest of the day drift past. Friday passed in a similar (non-sharty and non-pukey) way and I was beginning to feel relieved. Then Saturday hit and it hit HARD. To this day, I can still remember just how low I was…I hit rock bottom and couldn’t see a way out. I ached all over and my mind was just one big grey cloud. I said to Neil that that was it, I wasn’t prepared to put myself through this shit anymore, I was sooo done with chemo and its crappy side effects. Just like a marathon runner, I had hit The Wall. Unlike a marathon runner, I had no fuel left in my tank (literally by then!) and had become a shadow of my former self…I could hardly look at anyone let alone talk to them. I couldn’t laugh at myself and all my boking and sharting. It was and still is the closest I had come to just saying “Feck this shit! I’d rather die!”. Chemo really can mess with your head, no two ways about it. I sat on the sofa and dug as deep as I could just to get through the weekend. My temperature was fine, my rash cleared up and the vomiting was under control…and yet I still felt like hammered shite. Just to spice things up a bit more, I started puking again on Monday…oooh for feck’s sake gimme a break! There wasn’t much food I fancied eating – my diet was consisting of my sis-in-law Robyn’s choccie treats and pasta with cheese, mayo and tuna all washed down with ginger beer or weak tea. I finally started feeling more human (except for a bout of morning sickness) on the Tuesday and managed to get dressed and go and see Robyn. It felt so good getting out of the house again and gradually my depressing mood lifted. Craving more normality, I went back into work on the Wednesday. All the pupils were back in school now so I kept a very low profile and scuttled about when they were all in class. I carried on making it into work each day and gradually my strength returned, my mood vastly improved, the vomiting stopped (but the nausea remained) and I realised I could and would keep on having my chemo. My better days were here again!

As a treat, I had booked for me, Neil and the kids to head down to Castle Ward for a Winterfell festival (some scenes from Game of Thrones have been filmed there) – we were all really looking forward to it. It was a huge event, people had travelled from all over to go to it…unfortunately there were nowhere near enough toilets, there were few places to sit down (a fecking necessity for me at the time!), the queues for food and drink were ridiculous and the weather wasn’t on its best behaviour. We were all pretty miserable sheltering in an open shed housing some ancient farming equipment while the rain pelted down. We stuck it for as long as we (meaning me) could before trudging back to the car. We passed the actor who had played Meryn Trant (I managed to resist trying to gouge his eyes out – a reference to the show before you all think I’d gone completely cuckoo!) and had seen a couple of the dogs who had played Summer and Shaggydog on the show (thankfully both still very much alive in real life!) and had had a chat with a blacksmith while he made an arrowhead (much to Elliot’s delight – he’s determined to make his own forge in another year or two!) so the day wasn’t a complete let down…but it had given me an insight into just how much effort people with disabilities have to go to to try and go to these events and how little thought or effort is made by the organisers of such events to ensure that disabled people can attend without encountering serious problems.

Just like that (imagine me clicking my fingers there!) chemo 5 was fast approaching…if felt like I was only just getting over the last chemo when it was time for the next one to knock me down and out again. Thank feck I only had 2 left!!

Only the one pic of me from this time (I was becoming pretty anti-photos by now as all the steroids and crazy amounts of fluids being pumped into me were giving me a huge moonface) reading Fi’s book during chemo…and a couple of little quotes for your enjoyment! Til the next time!

Big hugs,

Carol xxx

Sharts!!!!

Sooo…let’s ignore that title for a wee while (there are plenty of you who have a fair idea of what’s to come in this blog post…some are even looking forward to it!!) and let me take you back to the 10th August 2017 when I found myself heading into the Cancer Centre at the City hospital for an 8.30am start. I had no idea what lay ahead for me that day, as per normal I avoided Googling…the less I knew about cisplatin, the better. Chemo is chemo to me so surely there wasn’t going to be much of a difference, right??!!

Oh how fecking wrong I was! Gone was me sitting in a chemo bay chatting to whoever would listen to me…I was escorted to my own private wee room where I got comfy on the bed while Neil rejoiced at the much comfier visitor’s chair he could sit in. Then I got shown a sheet of paper with columns for fluids in and fluids out and was shown the plastic jug I’d have to pee in to measure the fluids out!! I would have to monitor these fluids because if it looked like my kidneys weren’t coping, there’d be no cisplatin for me that day. No pressure then! I was soon filled with my antisickness tablets, steroids and antihistamines and the taxol drip was put up and off it went. So far all so very familiar. I made sure I was drinking plenty and I tried very hard for the nerdy scientist in me not to come out when I was checking the volume of pee in the jug. Reading above or below the meniscus in these cases really doesn’t matter Carol you freak!! I was more sleepy than I normally am on the steroids…probably a combination of being on a higher dose of antihistamines “just in case” and also the lack of folk to talk to. The nurses as always were lovely but as I’ve seen too many times, they are too busy to stop and chat to us patients…but they still manage to put us at our ease with friendly smiles and gentle care.

When my taxol drip had finished, my fluid chart was looked at and as plenty had gone in and out, I was deemed OK for cisplatin. First of all I needed another drip – a saline solution with added magnesium and potassium in it to keep my kidneys working and to replenish these metals that might be depleted by the chemo (cisplatin really was turning out to be a completely different beast compared to the carboplatin!). This drip was set to run for 2 hours (so add that on to the 3+ hours that the taxol had already taken!). Thankfully I no longer had to keep peeing into the jug so I nodded off while Neil took the opportunity to go shopping for some food that I fancied (melon, pineapple and grapes as it happened…and maybe some chocolate!). Once that drip had finished, it was time for the cisplatin – another 2 hour infusion (yeah, this was a looooooo…oooo…oooong day!!!). Thank feck I’d brought my tablet with me and could play some games on it. The hospital wifi wasn’t behaving so killing time on Facebook etc was a no-go, waaah!! I was a bit nervous about the cisplatin in case I took another reaction but it was fine. Once it was finally over though I had to have ANOTHER FECKING 2 HOUR INFUSION!!!! Oh feckity feck, seriously?? So I lay on as more saline solution was pumped into me!!! For anyone not paying attention   3 + 2 + 2 + 2 = 9 fecking hours! That doesn’t include the length of time it takes waiting for the chemo to be made up and delivered, waiting for the toxic bags to be completely empty, all the line flushes and drip changes AND all the times the drip machine throws its head up and has a wee beepy wobble for no good reason! So it was after 9pm that me and Neil finally walked back out of the hospital.  Over 12 fecking hours! No wonder I’d been given a bed! Also, when I say “walk”, I mean Neil walked while I wobbled and sloshed my way to the car. I had blown up like a balloon…good job I wore comfy, elasticated trousers! I felt like if someone had stuck a pin in me I would have just leaked icky toxins all over the place. Neil helpfully told me that I’d had over 6 litres of fluid pumped into me…just call me Mr Blobby coz that’s what I felt like! We’d even missed my favourite chippy so I was starving and didn’t fancy Mum’s shepherds pie (sorry Mum – blame my crap chemomouth and fussy taste buds). The only positive I could cling to was that I was now 3 chemos down and only had 3 more of these crazily long days to get through.

I slept pretty well that night considering how much I had slept during the day and I woke up the next day feeling not too hideous. I had more antisickness tablets to take (another heads up that this cisplatin was a tough cookie) – my usual ondansetron plus I had to take one Emend/Aprepitant capsule for the next 2 days AND I could top up with cyclizine tablets too if I needed to. I duly knocked the ondansetron, Emend and steroids in me and tootled off downstairs to see my babysitter (Mum) and Elliot (Thea is a night owl so she doesn’t usually appear before midday during the school hols…and I’d more important things to be concerned about than her vampirism!). At this point, I need to point out that I had also taken my 2 x dulcolax tablets the night before (as well as my usual 2 x ducosate!) to stop the usual bowel issues. I didn’t have to wait long to see/feel/smell the error of my ways…I went into the kitchen to stick the kettle on and started to chat to Elliot…

Me: “Hi…” pause “…am I…am I…shitting myself??!!” as I felt this warm, fluidy sensation in my underwear (sorry if this is tmi…I plan on blogging the best and the worst experiences living with ovarian cancer!!!).

Elliot: “….” Let’s face it, what kid knows how to answer this question, even my wee “has an answer for everything” son!! He just looked at me as if I’d grown another head (rather than the tail I seemed to be growing in my knickers!! Sorry tmi again!!).

Me: (Horrible truth dawning on me) “I AM!!! I AM SHITTING MYSELF!!!” And with that I legged it back up the stairs to the loo to deal with my butt explosion!! I wish I could say that that was my only shart (now the title of this post makes sense!) of the day…but my bowels had other ideas. I guess all those extra fluids the day before had loosened me right up!! At least I wasn’t constipated though eh??!! Every cloud!!

I also wish I could say that my sharting was the only lousy side-effect from this chemo but oh nooo! I coped OK for the first couple of days and then the slump days hit…and they hit HARD! The nausea was horrendous and I could hardly face eating (the only things I could eat where Robyn’s yummy choccy treats – she was a star and made a batch for me for after every chemo!) and I could hardly drink either…a bit of a problem when I need to drink to flush the nasty toxins out of my body! I could just about stomach ginger beer and very weak tea…and I could never finish a cupful. Mentally I slumped as well, like never before. Over the weekend I just sat in my butt-shaped space on the sofa and existed…I sure wasn’t living or interacting with anyone very much. I had to just remind myself that better days would be on the way soon enough and to just get through these days as best I could. By the Monday, I was hoping I was over the worst but that’s when the nausea switched to full-on vomiting! Thankfully it was only a couple of times that day and I was able to get to either a sink or the loo in time. By this stage I had given up trying to second guess what I was gonna do next! So Monday was a write-off too. Thankfully by the Tuesday I was back to just feeling nauseous and I managed to get showered and dressed (yeah, I really was to be avoided the first 5 days after chemo…I was doing well if I had a wash down and brushed my teeth, plus there might have been a hint of eau de poo about me…no-one was bonkers enough to tell me though!!) and headed up to see my bro Davy and Robyn. This became another little ritual I started after each chemo…my first day venturing back out into the world would always be up to see them and if I could do that, then I knew I could try going to work the next day. And that’s exactly what I would do on the Wednesday, a week after my chemo, I was back in work with Elliot by my side helping me get a bit more cleaning and sorting done. After the madness of sharting, puking, hardly eating or drinking, the depression and the seemingly endless pj days, I was finally back in work and able to look forward to some better days! Hoo-fecking-ray! I was still feeling quite nauseous but thanks to the steroids I was getting my appetite back…eating was the only thing curing my nausea so of course I ate LOADS! The next few weeks in August were spent mostly working, eating, visiting Davy and Robyn and other lovely friends, avoiding the (seldom seen) sunshine – chemo and steroids make our skin super-sensitive to sunlight – dragging my carcass and kids shopping for their school uniforms and generally being as big a lazy ass as I possibly could be! The best news was I got an extra week off treatment thanks to the August bank holiday. By that stage all my teacher pals were back at work so it was great catching up with them…it also meant that the pupils would soon be back too with all their germs. One of the district nurses doing my PICC line thought I shouldn’t be working when the kids were all back at school but my thinking is that my own 2 kids are mixing with 700-odd kids every day too so if there’s a bug going round, it’ll make its way into our house anyway! Plus I’m not teaching classes and can hide away in my prep room and just keep washing my hands before I eat. As I’ve said before, carrying on working during treatment is a personal choice and not possible for everyone…I wanted to keep working and was lucky I could. It really helped me regarding fatigue, neuropathy (tingling, numb hands and feet) and kept me much more mentally stable than I would have been. I was also still seeing my lovely complementary therapist who was giving me light reflexology on my feet which kept me ticking over nicely mentally and physically too. All of these things meant I was ready to face the next chemo feeling pretty good. Surely it couldn’t knock seven shades of shit (literally!) out of me again…could it??

It’s pretty obvious why the pic of Arnie’s included…the other pic is of the lovely, amazing Ovarian Ladies who met up just before I had this chemo. Us ladies keep each other sane through some very difficult times and we can talk about anything – including my sharts!! Love you ladies!

Big hugs,

Carol xxx

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(Ovar) Reaction!!!

Apologies folks for the delay in blogging! A girl’s entitled to a lovely, relaxing, fecking HOT holiday in Cyprus with my wee fambam. I’ll get round to blogging about that eventually but for now let’s get back to what was going on this time last year…and after my bloods being grand on the Monday and me catching up with ‘A’ who was up for her bloods and weekly taxol (I remember now that A got her chemo on the same day as her bloods, that’s why she wasn’t in the bay with me…thanks chemobrain, I’ve outsmarted ya!), I went back up on the Tuesday for round 2 of this lot of chemo. It didn’t take long for the toxic taxol to be pumping through my PICC line so I settled in for the long haul and got chatting to another couple of ladies who both had ovarian cancer too. This is where chemobrain fecks things up in my head again…I know that I had one of the ovarian ladies visit me…I think this time it was the lovely Margaret who I first met way back at the Target Ovarian Cancer Being Together Day in Belfast who was up getting her latest results (she was on watch and wait)…but she might have visited me during the last chemo and it was Christine who visited me this time! Feck my head is mush isn’t it!! What is definite is that my day was made that little bit easier by my lovely visitor and all the chatting we did. Soon enough, it was time for the carbo to be started. Carbo is administered a lot faster than the taxol (3-4 hours for the taxol, half an hour for the carbo)…and things started going tits up within the first 10 minutes I was getting it. I started feeling really weird and it felt like there was a ball of the chemo forming at the top of my abdomen. I hit the alarm button and sent Neil out into the corridor to get a nurse ASAP. He was back within seconds with a lovely nurse hot on his heels. She took one look at me and stopped my chemo then asked another nurse to go fetch the Dr on duty. The blue curtains were then pulled round me (never a good sign) and the Dr appeared. I was rigged up to equipment to check my vitals…my blood pressure and heart rate were climbing alarmingly while my oxygen levels were dropping. What the feck??!! And just to top things off I started feeling sick. The nurse went to reach for a kidney bowel “Nope, those things are useless, get me a bucket!!” I managed to squeak – even in my confused state I had the presence of mind to make sure I didn’t boke all over myself and every one around me! An empty sharps bucket was quickly shoved under my chin and I started hurling into it while the remaining chemo was disconnected from my PICC line and the nurse got busy shoving more antihistamines and steroids into it instead. I was given an antisickness jag (once I’d stopped boking – without making any mess hooray!) and was given an oxygen line to shove up my nose. Soon enough, I was starting to stabilise…completely flummoxed as to what the hell had just happened until I looked down at the inside of my forearms and there was a red rash. I’d had a nasty allergic reaction to the carbo! This is what the Dr and nurse had already realised (turns out reactions are not an uncommon occurance) and they sure got me ship-shape extremely quickly. Now the question was…could I finish the carbo dose? The Dr decided against it as I was choc-full of drugs by now and he wanted to talk it over with my oncologists…plus there was the very real risk I’d just react again and end up staying in hospital for the night. So, after getting my blue bag from the pharmacy filled with the usual goodies, me and Neil were finally on our way home. We stopped off at a chippy to get something to eat (I was starving – the steroids were certainly working!) and then I was happily sinking onto my sofa filling my Mum and kids in on all the madness. My Mum had made another shepherd’s pie but I was happier with my chips. She’d also brought down some awesome choccie treats that my sis-in-law Robyn had made (see the pic below – yummy!! They became a post-chemo staple for me…don’t judge me, blame the steroids!!!). “So what happens now?” my Mum asked. “I’ll be discussed by the Dr and my oncologists and they’ll decide whether to continue on the carbo…but with either a reduced dose or a longer administration time…or I’ll be put on cisplatin – an older form of platinum chemo.” I replied. By now my body was ready for bed while my mind was ready to PAR-TAY!!! Oooh this was going to be an interesting night! My Mum headed home as she’d be back tomorrow for her usual babysitting and I headed to bed to attempt to sleep. Nope…my mind just wouldn’t shut down and I was still farting about on my phone at 4am. Good job I’d nothing planned for the next day!

I was up at a respectable early hour feeling not to bad at all and without my usual post chemo rash all over my face…was it all the extra drugs hoofed into me or was it the lack of carbo in my system? Who knows!! All I know is that I had the mildest “slump days” after this chemo than I’d ever had before or since! My bowels behaved (thank you Dulcolax!) and I enjoyed feeling a lot better than I normally did. I was back in work the following Tuesday with my right hand man Elliot to do a bit more cleaning and checking the science equipment.

I had a few exciting days coming up, the first of which was a get-together with the lovely ladies from my peer mentor group and our fab leader/trainer…who had unfortunately by then left her job. So our leader became our friend! It was so good to see them all, especially Julie as she had started back on her third line of chemo at the Christie hospital in Manchester the day after I started my second line…it was all a bit sudden but we were keeping each other company through it comparing notes on how awesome we were if we’d managed to brush our teeth on the crappy slump days! One of the mentors had contacted the Culloden Spa as they had recently got qualified complementary therapists who were trained to practice on cancer peeps. She explained how we were peer mentors and in exchange for us writing a review, we got a spa treatment and afternoon tea at a discounted rate! It was a fabulous, blissful afternoon. I was being plagued by hot flushes/chemo sweats so I ended up whipping my wig off and letting the air at my bald head. I was in good company with these ladies who had been there, done that, so none of them batted an eyelid…and thankfully none of the other people at the spa did either. Julie tried my wig on and agreed that it was a lot less scratchy than most wigs. We laughed and chatted the afternoon away and the mentor who organised it surprised us all with lovely sparkley bracelets. That’s them all twinkling away in the other pic! I’ve said it before but it’s worth repeating…if there’s one thing us cancer peeps should do, it’s finding and befriending other cancer peeps. Nobody else can begin to understand the sheer terror and utter joy that being a cancer peep brings. Just knowing that we’re not alone in this dodgy, leaking boat makes a huge, positive difference to our mental health. It’s the main reason I am coping as well as I am to this very day…so all you lovely cancer peeps give yourselves a great big hug from me…whether you have met me in person (oooh you lucky things hahaha!!) or we only communicate via social media in any of the fantastic groups I’m a part of…we are all in this shit together and we all help each other so much! Thank you each and every one of you for helping me to have come so far with my mental health still intact (some people will no doubt argue that I’m just mental, never mind the health part!!) the friendship and love we have for each other is priceless.

Speaking of love…my next big day out was fast approaching – one of my besties at work was getting married! It was taking place during my good week…so by the time I was getting all dolled up for the big day, I’d had a phone call from my CNS to say that I was off the carbo because of the severity of my reaction and I was to get cisplatin instead. I’d also had a ct scan to make sure that the chemo was doing its job. So having a lovely day at my mate’s wedding was just the tonic I needed. It was a perfect day…the mother of the bride is another work bestie (I’m lucky having so many work besties – another group of people who never fail to have me smiling and laughing) and both her and the bride looked beautiful. The speeches, especially the awesome rendition of “Ice, Ice Baby” by the bride’s wee sis are burned into my happy memories forever! Those lovely days set me up for the VERY hard days to come. The Monday after the wedding found me back up at the Bridgewater Suite getting my bloods done again. A was there again for her weekly taxol. She was due to be scanned in a few weeks time to check and see if her chemo was working. My scan results weren’t back yet but my oncologist had some great news for me…my CA125 had dropped from over 1000 to 300-odd! “I wasn’t even going to ask about those numbers…” I said. “Well, I thought you’d want to know this.” Oncologist 1 replied. You’re darn-tooting right I wanted to know that! It gave me some much-needed hope that the treatment was knocking seven shades of shit out of the crappy cancer again! The next day, I was to go to the Cancer Centre rather than the Bridgewater Suite to get my chemo…but all that excitement I’ll save for my next blog post!

Big hugs,

Carol xxx

 

 

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Second-line chemo time

And so on Monday 26th June 2017, it was time for me to head up to the City hospital to have my bloods checked before I could begin my second-line chemotherapy. I sure wasn’t wired or excited about the prospect of having more toxins pumped into me or losing my hair again for the second time within 2 years…but needs must. I wanted those 4 wee buggers to be given their marching orders!! There was a change in proceedings this time around. Rather than Neil taking 2 days off work (he took them as unpaid leave) to come with me for blood and chemo days, we had roped in a couple of my besties who both work in hospitals (Alison is a nurse and Helen is a healthcare assistant about to start studying to become a nurse – take a bow you pair!!) so one of them was always miraculously off to take me to get my bloods done plus they know all the medical jargon which is a big help!

When Alison and I got up to the waiting room, I spied ‘A’ up to get her bloods done. 2 of the original Monday clubbers were reunited. It was both comforting to be back in the familiar surroundings as well as depressing and heartbreaking without J there. A was now on weekly taxol which she was convinced wasn’t doing anything as her hair hadn’t fallen out this time (she had finished second-line carbo/taxol only a couple of months beforehand and was rocking a lovely white crew cut). She was to get 6 weeks worth of chemo before being scanned to see if it was working. By this stage she was right royally peed off with the “bitch” inside her (she had her bitch, I had my buggers) and that anger she used to great effect to keep going through all the tough chemos. She really was such a tough cookie! We had a great wee yarn while waiting to get our bloods done (my breathing technique was still working and the nurse got a vein to work first time yippee!!) and then the subsequent wait for the results. My bloods were good to go for Tuesday but A’s treatment was delayed for some reason…chemobrain has prevented me from remembering. I just know we weren’t in together on the Tuesday. So with the hospital visit over and me promising A I’d be in touch, it was time to re-enter the normal world and be a lady who lunched with Alison. My last literal taste of freedom before I got that yukky, weird metallic taste in my mouth again from the chemo. So much to look forward to!! Bleugh!!!

The next day I was up at the crack of dawn as I had to get my PICC line fitted before my chemo. Turns out it was much trickier finding a vein in my right arm this time…but eventually I had my lifeline dangling out of my arm. Again, it was all so depressingly deja vu.

I was then off back down to the Bridgewater Suite with Neil to wait for my chemo. While I was waiting, A2 popped in to see me. She had been up to see our oncologist for her latest scan results. They weren’t great results as another little bugger had appeared and was in danger of squishing the tube that led out of her kidney. She was due to have a holiday to New York in August so was hoping she wouldn’t start her third-line chemo until after that. It was great seeing her, just wish it hadn’t been at the City hospital! Soon enough, I was off for chemo so I gave A2 a big hug and said I’d let her know how I got on. I was  put in the smaller bay in the exact same seat that I was in when I met J. This just added to my depressed, despondent state. For the first time when the steroids hit, they didn’t send me loopy and bouncing and chatting to anyone who would listen…I did ask another couple of ladies what they were in for and both said ovarian but neither was much into social media or wanting to join our wee support group (each to their own!) so I just sat there and dozed on and off for a lot of the time. I recognised quite a few of the nurses and they remembered me too. One even remarked about how they had looked forward to the craic when me and J were getting our chemo together…yeah, that had been great craic…I’ll just sink even further into my dark fug in the corner here. My spirits were lifted again when another Ovarian Lady, Christine, popped in to see me laden down with books and some nice treats for me. I was so grateful to both her and A2 for thinking of me and popping in to see me. It was a longer day in that bay than I’d ever experienced before, even though the chemo ran like clockwork and we escaped at the usual time between 4-5pm. I was pretty subdued the whole way home but I perked up when we got home and I saw the kids and my Mum who had also decided to up her game and had brought down a shepherds pie for us to eat. It’s simple gestures like this that can have a real positive impact on not only the cancer peeps themselves but also on their main carer and family. Don’t wait for a friend/family member who has cancer to ask for help (we still have some pride left and like clinging onto our independence), just make them a meal, check when they’re having their good days and take them out for a cuppa and a chat, arrange to go to some of their appointments with them, or insist on doing some housework or gardening for them…every single thing means a whole lot and one less thing for them to worry about! It is very much appreciated I can tell you.

The next day I was up pretty early again as I was determined to show my face in school before everyone went off on their summer hols. Unfortunately the face I was for showing was radioactive red as the old faithful rash (many of us get this rash the day after chemo and thankfully it usually disappears after a day so isn’t a concern – but if you are concerned, ring the chemo helpline!) had appeared…how fecking lovely! The steroids were kicking in nicely though and as the Wednesday and Thursday after chemo were usually 2 decent days, I decided to carry on as normal and go into work. My teacher pals were surprised to see me in school and were a bit shocked at my face (I think it was because of the rash…but it could have been because I hadn’t put my make-up on so I looked a bit scarier than normal!). I had decided this time to try and carry on working over the summer holidays (there are a ton of jobs need doing by the technicians at this time of year) whenever I could. There were no kids or teachers around so less chance of picking up a nasty bug doing the rounds. I also hoped that by carrying on working, I could stay a bit fitter and combat the old fatigue and neuropathy by staying on my feet and using my hands. I went round to have a cuppa with my pals and again shocked them by both being in work the day after chemo and by sporting my rather fetching big, red face! I was a bit looped on the old steroids but as the morning wore on, I started sinking like a stone. I decided I’d better disappear before lunchtime as I didn’t want to frighten the pupils and because I was feeling so lousy. I said turrah to my teacher mates and wished them lovely summers and I promised my pals they’d see me in a few days when I was over the worst of the side-effects. I went back home where my mum was dutifully waiting for me and I sent her out for some lunch for us. I then conked out for the afternoon until the kids came home from school…this wasn’t like me on steroids at all! Maybe it was the effects of the crap daytime telly, who knows???

Thankfully, I was definitely still on top of the old bowel watch and the dulcolax kept everything moving in the right direction. Phew! One less thing to worry about! By the end of the day, I really was feeling so lousy…was I going to have more yukky days this time round? I sure hoped not! It looked like this would be the case though as I still felt like poop on the Thursday…and by the Friday, which is when I usually slump badly, I really had resorted to feeling like hammered shite. I was meant to be going for reflexology that afternoon but my lovely therapist called to check up on me and when she heard how I was, she rescheduled for the following Friday. I was grateful that I didn’t have to get dressed and go out and pulled the duvet back over my head (until i had a hot flush and the duvet was thrown off again!). The question was recently asked in the ovarian cancer UK group that I’m a member of (a more knowledgable, loving and supportive group of ladies you would be hard-pressed to find! Fi Munro added me to the group on Facebook – I had never even thought to try and find out if these groups existed!) as to whether the chemo itself is capable of making cancer peeps feel overwhelmingly depressed – it was a very revealing question as so many of us ladies, including myself, wholeheartedly agreed that that was exactly how we felt during our bad slump days. At least now I know I wasn’t going completely mad and this was just something else I would have to endure before I got to enjoy my good days.

The following day was the day that our cycling ovarian lady and her club were setting off and ending up in Bangor that evening and I REALLY wanted to go see them with some of the other Ovarian Ladies and Bangor’s very own cancer warrior/advocate/living legend that is Melanie Kennedy! I was still feeling absolutely rubbish but I am nothing if not a thran, determined, bolshie bugger!! So if I said I was gonna be there, I was gonna pull myself together and go…as long as Neil drove me and we took the kids! I was very spaced out but thoroughly enjoyed meeting Melanie, seeing the other ladies and being able to thank all the cyclists for their fab efforts raising valuable awareness. The kids were on their best behaviour and it was nice for Neil to be able to put more faces to the names of the ladies (he was pretty sure they’d been figments of my imagination!!). It gave me a much-needed lift but I crashed the next day again and felt like rubbish until the Tuesday when I finally started to feel more like me again. I managed to get showered and dressed and headed into work with my wee sidekick (that’ll be Elliot, Thea doesn’t emerge from her cave until at least midday!). It felt so good having that bit of normality to fall back on and between the pair of us we got stuck in to cleaning the safety glasses and checking the Bunsen burners. We stopped for a cuppa with my pals who were pleased to see me but also concerned that I was fit to be working. I assured them that I was over the worst of the side-effects and that Elliot was doing a grand job looking out for me. He came in with me for the rest of the week and we got started on getting the glassware cleaned in the dishwashers and checking over other equipment. Not everyone can continue working when they’re going through treatment for cancer – I certainly couldn’t during my first lot of chemo and the Big Op – and it’s not unusual for people to decide to retire on health grounds…it’s a very personal decision. I was just so glad I was able to carry on working.

On the Friday, I had to go and get my PICC line checked and redressed. Rather than waiting in the house for a district nurse to call, I had arranged to go to them in our local hospital at 11am. It all went smoothly so I arranged to do the same the following Friday. On the Saturday, we all went for a drive down to the Mourne mountains…one of my favourite places where we spent many happy summers in our caravan and we managed a short hike up to one of our favourite spots overlooking Carlingford Lough. Me and Neil chuckled on the way back down listening to Elliot in the trees doing his best “Finding Bigfoot” impression…it was so lovely just having fun with my family.

The next week, I was feeling much better…except for my head. When the chemo hits your head and your hair decides to evacuate the scene, your head can get really tingly, tender and downright sore! I went up to my bro’s one day after work and my bro’s better half, Robyn, was so peed off with Elliot pulling my hair out (yep, he hadn’t wised up at all when it came to my hair!!) that she got her clippers out and scalped me! It sure did feel better after that…even if I was gutted to lose my hair again (just look at that pic below of my wee heap of hair *sob*!!). At least this left me free to experiment with my new wig (I had got it on the day I went for chemo after the lovely lady who sorts out our wigs had had a good look at my current hair the day before when I was up getting my bloods done) and the hats and scarves I’d started accumulating again.

I had another busy weekend going to see one of my work besties with Neil for a wee get-together before her daughter (another work-bestie!) got married at the start of August. I stuck my wig on for the night and it was a big hit! I was also out with my wee family for a meal and great craic with Alison and her family and more friends…I was really enjoying myself and really wasn’t looking forward to my next chemo bringing me crashing down again.

The pics are of us down in the Mournes, my little sad clump of hair and my new experimental looks!

Big hugs,

Carol xxx

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