Today I was due to return to work. I should’ve been sitting at my desk trying to remember passwords and what on earth I do for a living. I should’ve been catching up with everyone’s lives, hearing all their news – on my break of course. It hasn’t played out like that.
Went to see my GP for a renewal prescription and to get my ‘fit note’. That old devil called Blood Pressure had zoomed up AND to add to the mix, my wound site was extremely tender, where it hasn’t been before.
This delightful cocktail of events led the GP to decide he wasn’t happy signing me back into work until I’ve seen the consultant in a couple of weeks tine.
I know he is being cautious and for that I am extremely grateful to him. But I had geared myself up to be back in the real world. It’s such a weird thing isn’t it? When you’re at work you think a bit of time off would be amazing. As soon as you’re off for any time, you start to feel guilty about the whole thing!
Of course, there is a rumour that Rog, Ginger Prince himself, contacted the GP and threatened him with sharpened claws so that I have to stay home. Who else is going to wait on him all day?
I have to confess this set back has got me down a little bit this week. But I’ve given myself yet another talking to today, been out for a walk in the fresh air and remembered to fight this thing all the way.
My family have all headed home and most people I know have already gone back to work. I am due back to work next Thursday and I am SO nervous about it. I am convinced I have forgotten everything. I know that won’t be true really, but I the part about being nervous is very real. What will I do when I feel rubbish for the first hour after taking my meds? Probably stuff myself with biscuits and tea.
In 2005 after my recovery from melanoma the first time, I didn’t have a job to return to. I started temp work in Dublin and was lucky enough to get two great temp jobs who both offered me permanent contracts. The first job was in city centre and, whilst it was a great job, I remember being shocked to over hear myself being described as the blonde one with a limp. What? Sure, the ‘English’ blonde, or the blonde who wears cat broaches and likes to party – but with a limp? I decided that job wasn’t for me and headed off to work in the management suite of Dundrum Town Centre. For any of you that have been there, you will know this is retail heaven with a bonus of dancing fountains. If you’ve never been – make sure you visit when you go to Dublin. Sit outside by the fountains, drink in the atmosphere (and the wine obv) and fill up on Chinese or Italian food. Yep, it was a disaster for both my wallet and my waistline, but it was literally the best job I ever had.
Thinking of that reminded me that, at the time, my favourite song was Suddenly I see by K T Tunstall. It’s a great song for boosting a happy mood.
When I went back to work after my hysterectomy, my favourite song then was A Thousand Years by Christine Perri ( I know, secret Twilight Fan).
This time around it’s been a Christmas song – I’ll Be Home by Meghan Trainor. Not only is it a great one to sing loud on your own, it’s also had me in tears a few times, thinking that I might not have seen Christmas if this had happened even ten years ago.
But, and here is the truthful part, whilst I know how lucky I’ve been, does that mean it’s all over when I go back to work? No more excuses not to make tea because I am ‘off sick actually’?? Will ‘I’m taking lots of meds’ still work for this?
I found this picture and, whilst I know my niece hates all those motivational quotes, I thought this was quite apt.
I hope my blog makes you smile a bit and, even better, think about your skin and the consequences of burning it in the sun. But most of all I hope it can help someone following on the same journey.
I have nine more months to go on immunotherapy with numerous scans and I will keep blogging my experience. I hope you will travel the journey with me.
Just a quick post this afternoon to wish you all a very happy new year and thank you for all the amazing comments and support you’ve given since I started this blog and revealed the treatment I am going through.
Christmas has been fabulous with my lovely family. As well as consuming vast amounts of wine, bubbles and obligatory sherry we have gone on loads of beach walks and made the most of living in Kerry.
As you will see from this pic, the sky is always worth a look in Kerry, different every day.
2019 has been a tricky year all told. When you start the year thinking it’s going to be full of trips and weddings and it turns out to be full of tears, shocks, operations and drugs, I think tricky would be fair description.
However, it’s also been full of laughter and relief. It’s brought people back into my life that I’d not been in touch with for years. It’s introduced me to people going through a similar journey. It’s shown me who is prepared to listen to you moaning on about side effects.
As I’ve told you before, the Ginger Prince has a pretty active twitter presence and through that I’ve made some fabulous online friends. I’m aware people think online friends are not real friends but from those friends I’ve had incredible support. I’ve met (in real life) some great people. We’ve been through so much together – shed tears when a beloved pet has gone over the rainbow, shared joy when a new baby has been born, and broken our hearts when they’ve lost a parent. I find that I love these people that I’ve never met.
My nephew tells me he only reads the posts that actually mention him. So I will tell you that being an Aunty is one of the biggest joys of my life. Even just driving them around in Kerry today makes me so content. For them to be with me in this beautiful countryside – what more do I need (Champagne aside obv) ?
So – Happy New Year and see you in 2020. Make sure you see the glass half full in 2020 and live every single moment to the full.
I’m typing this in semi darkness in a silent house. It’s Christmas morning and nobody has stirred out of bed yet. I love this time. My sister, brother, nephew and niece are here to celebrate Christmas and once one person gets up today, the music will immediately start blaring out – probably starting with Fairytale of New York. After a cuppa first thing, that will be the last non alcoholic drink made for the rest of the day. From here on in it will be bubbles all the way.
It will be a full on day of present opening and board games – no tv watching for us. So this small section of silence is a time to have a quick reflection on how grateful I am to be celebrating Christmas in relatively good health.
Yes, I am flippin knackered most days, my wound site is super tight and if I forget to moisturise it at all, it hurts like hell. But, every week I’m better than the week before.
I normally like to have the monopoly in the kitchen – not the game – I mean I like to do it all myself. Today will be more of a team effort. We’ve already played a game yesterday where the loser had to agree to peel the potatoes so that’s sorted.
The Ginger Prince becomes very animated when turkey is on the menu. Of his many bad habits, begging or stealing food is rarely on of them. But turkey brings out the worst in him. He once nearly mugged my brother in law as we walked from the kitchen to the dining table with his plate – it’s hard to walk with a large ginger shark stuck to your leg!
He will, of course, get a huge bowl of turkey to himself today. Probably because he knows that’s happening, he allowed me to do this to him this year. I think I caught him by surprise.
So it’s time to get up and crack on with the day now. But do take some time for yourselves today to say a little thank you for everything we have – I know I will be feeling grateful for my family and fabulous friends and also for the amazing doctors and nurses that have given me such amazing care.
The messages of support you have all sent me have boosted me so much. I hope if any of you are ever in need of a chat, you will let me return the favour and give you support.
In an effort to bring you all bang up to date, I have skipped a couple of weeks but all you’re missing out on is annoying coughs, sore arms, fatigue and high blood pressure. Oh, and teenage spots!
As you may have realised, the lack of red wine in my life has been a real low point. I tried all types, Merlot, Shiraz, Malbec, Cab Sav – it’s like listing my favourite boy band – but nothing tasted right.
Last week while OH was working one evening, myself and the Ginger Prince were enjoying a binge watch of Dawson’s Creek (judge away!) and I just knew the evening required a glass of red. I selected a cheap-ish bottle of Shiraz just in case it would end up in a stew (never tell OH there is wine in his stew). Hurrah! I’m back! That glass was simply delicious.
This might seem like a tiny thing to you, but to me it feels like yes, this three month mark actually is a turning point.
There was more good news to come. I had my three month appointment with the consultant. Ready? My Blood Pressure was down to 137/95 – woohoo! I was tempted to mention the return of red wine in my diet, but I chose to keep that to myself. I’d already noticed he didn’t chuckle when I told him how fast I could drive to Cork, so I figured we’re maybe not on the same wave length.
Of course, there’s always a small disappointment. They had previously discussed reducing my immunotherapy meds at the three month mark. I had hoped this would reduce the side effects. But he explained he was very reluctant to do this as it had been such an aggressive attack. Even I know when not to argue with that.
The next milestone will be February when I have my first scan since my op. He initially said that would be March. I put my best persuasive eyes on him for that – I can’t wait til March for reassurance. It worked and we agreed on February.
Whilst at CUH I also had an appointment with the physio for yet another sexy garment to wear because of the lymphedema in my leg.
I apologise in advance for the naked toes – they’re not Christmas polished yet. But as the compression stocking is opened toed, it’s causing my toes to swell. The next stocking will have toes but as a stop-gap measure, I now have this little item. Other ladies get lingerie for Christmas – I get a foot glove!
I will post another update before Santa arrives, but in case you all get too busy or too drunk I hope this pic gives you a chuckle.
There has undoubtedly been tears, but the best way to see this through really is to laugh.
If you know me at all or had the dubious pleasure of working with me, you will know I love Christmas. I love the run up to Christmas and whilst we are not a tree up on 1st December family, I do start to decorate myself the moment the festive month starts.
I have a fine collection of Christmas earrings, head boppers, leggings and tasteful jumpers. So it was with great delight that we set off to the first Magic Parade in Killarney.
When I say it was the first, I mean it was the first of the season. Santa has a parade through Killarney every Saturday evening throughout December until Christmas. It’s a full on parade with big floats and fake snow. It’s completely fabulous.
It was a perfect evening for the parade – cold enough to wrap up, obviously I was sporting my Christmas pudding hat and several flashing Santa badges – but dry with a clear sky.
We had found a new place to eat before the parade and really feeling the Christmas glow.
The parade started and the floats started to appear around the corner. Last Christmas was blasting out of the speakers and then it happened, hit me like a brick, a big tear rolled down my face.
It was out of nowhere and once it started, it wouldn’t flippin stop. I needed to pull myself together before Santa spotted me but a whole heap of emotions came rushing out.
Maybe I had just kept them too much in check for the last few months and, before you say it, it wasn’t fuelled by mulled wine.
OH came into his own, gave me a big manly hug and didn’t ask for any answers – definitely the best course of action – and it was over.
I fully appreciate I can be a bit dim sometimes, but yet again it was kicking in that even though this year has been pretty tough at times, it has shown me how incredibly lucky I have been and what fantastic friends & family I have.
As I may have mentioned once or twice, Mr Tafinlar and Mr Mekinist are the gift that keep on giving and the latest speciality is a cough that will not go away.
On a beautiful sunny but cold day in Kerry, I trundled back over to Cork to my monthly clinic appointment.
At this appointment they check that everything is going well, check your blood results and record any side effects. I had a good old whinge about my spotty chin, but I could tell the doc really wasn’t getting the enormity of this! Well it’s not his chin pretending to be a teenager is it?
But he was very interested in this damn cough and, of course, the blood pressure.
This time my BP (not my BO) was 150/100. He advised I must go back to my GP for this. The nurse did take it again later and it had reduced to 140/108, but still too high.
The doc sent me down to X Ray for my chest to see what’s going on with this cough. I used my new found knowledge of all the corridors of CUH and was down in X Ray in no time. I expected to be waiting ages as it seemed to be busy.
You know when you feel a bit of a fraud when you’re just sat in your normal clothes and other people around you are in gowns or have been wheeled in on beds? Well, it was that!
Thankfully, I’d barely sat down when a lovely lady collected me for my chest X Ray. Maybe I was cluttering the place up.
The doc rang me the following day to let me know the X Ray was clear and the cough is, who knew, another side effect. Not much to be done about it. Try hot water and honey.
For hot water and honey, I heard whiskey, lemon and honey – delicious and makes you sleep like a baby. Judge away, my conscience is clear!
The following day the GP prescribed a third Blood Pressure tablet. Having spent the last 30 years not taking any regular medication, it really goes against the grain to take yet another tablet. But I know it has to be done.
That evening we went out for a meal and – still off red wine – I had not one, but two glasses of Pinot. I still don’t get the same pleasure from a white but it makes me feel more sophisticated than having a glass of 7Up!!
My apologies for the lack of posts – been a tricky couple of weeks where Mr Mekinist & Mr Tafinlar have made me feel a little bit pants to say the least, but I am an expert at giving myself a good talking to, so I am back now!
As I told you, I was measured up for a compression stocking to help with my lymphedema and I returned to Cork to collect the sexy stocking. Since Mr M & Mr T have joined my life I have found that I have a series of good days, followed by a couple of bad days. I have had to remind myself that this is so much better than a lot of people endure during treatment. As it happened, the trip to Cork happened on a good day. I felt great, the sun was shining and I had the car to myself so a full on concert would be happening.
If you have ever had an operation, you may have had the pleasure of wearing a small white stocking to reduce the risk of blood clots while you’re not moving about. A compression stocking is A LOT thicker than that and A LOT harder to get on. The physio asked me to put the stocking on to ensure I could do it correctly. I have to mention at this point, I was bursting to go to the toilet. I had rushed in to get to my appointment on time, thinking I would just be collecting the stocking. I should have just told the physio that I needed a wee – but when do we ever do that with strangers? So I whipped off my jogging bottoms (not that they have ever been jogging) and tried to put on the stocking at top speed. Wrong! Remember back in the 80s where your jeans were skin tight and you had to lie on the bed to get them done up? Well this compression stocking is worse than that! Of course, I couldn’t then pop out to the toilet halfway through so I just had to persevere.
Thankfully, years of wearing unsuitable clothing gave me excellent grounding for putting on the damn stocking and I managed to squeeze it up my leg – it goes from my toes to the top of my thigh. Truthfully, for all that I was now about to burst, I could actually feel it working on my ankle straight away.
I got dressed in nano-seconds, thanked the physio and rugby tackled three ladies ahead of me to the toilet.
I will tell you in a later blog about a second compression garment that’s on it’s way to join my wardrobe and whilst I am genuinely grateful for any assistance, I can see a gap in the market for ‘more attractive compression stockings’, maybe seasonal ones!!
This was the quickest visit to CUH I had encountered and to add to my very good day, it was only €2.50 for the parking – most appointments I have cost between €10/€15 just to park. So winning all the way. The sun was still shining and I wound down my window and blasted out some tunes.
I apologise in advance for my dodgy music choices, but this is a snap shot of my Make-Me-Smile Playlist. It never gets played when OH is in the car for fear of a divorce after he fast forwards something I NEED to sing loudly to. But for you, my lovely reader, feel free to try it out sometime:
Bruno Mars – Just the Way You Are
Empire State of Mind – Alicia Keys
Joy – Bastille
Castle on the Hill – Ed Sheeran
Mr Brightside – The Killers
Party in the U.S – Miley Cyrus
Wildest Dreams – Taylor Swift
Can’t Stop the Feeling – Justin Timberlake
Drunk on Plane – Dierks Bentley
You’re Such a Good Looking Woman – Joe Dolan
Rock Star – Nickelback
She’s A Lady – Tom Jones
Can’t Feel my Face – The Weekend
Standing Outside the Fire – Garth Brooks
This is Me – Keala Settle
It goes on for quite a while but they get me from Cork to Macroom and they make me remember how incredibly lucky I am to be here and what a close shave I have had.
This is the first post I’ve written on my mobile as OH has commandeered the laptop. So fingers crossed this works!
I’ve already told you I met OH 22 years ago and fell for not only him, but for Dublin and Ireland. It really was a whirlwind romance and every time I go to Dublin, I genuinely do love the smell & the sound of the city.
Dublin has the weird phenomenon of being a big city but still has the feel of a small town somehow. You can never go shopping without coming across someone you know and I love that.
The first weekend I went to stay with OH he was still in trying to impress me mode (wore off very quickly) and took me to a boutique hotel in the Wicklow mountains. It was all very romantic and, naturally, we ordered breakfast in bed. When the lady arrived with said brekkie OH froze in the corner of the room. There was an awkward exchange and the lady left. Intriguing!
OH had been married before but was already divorced when I met him and the lady had actually been at his wedding as a guest of a friend. That had been 10 years prior to this encounter but she obviously remembered him & figured he was having some salacious extra marital tryst in her hotel!!! By the time we checked out she had gone home so she will forever assume she caught him out!
Anyway, I have digressed completely but it was for a reason. Ireland has a much appreciated Bank Holiday in October and we headed up to Dublin for the long weekend.
Actually this very time last year we went to Dublin to meet up with a friend over from Yorkshire. I managed to get gastroenteritis – I know, I’m a disaster – and couldn’t stomach wine so spent the evening drinking honey whiskey. Just for your future reference, whiskey does not cure gastroenteritis or even assist it in any way.
We, of course, had the obligatory chipper chips one of the nights, they were amazing, and had such a lovely time catching up with friends.
A new little side effect added itself – within half an hour of taking my meds, I am literally craving sugar. Thankfully our friends had a fridge full of goodies, but this has not abated at all and I am now the proud owner of a lifetime supply of wine gums for emergencies.
The day we left Dublin it was one of those beautiful cold Autumn mornings where the sun is shining and everything looks clean. I drove for half the journey and it felt great. I felt well.
I could finish there but I want to be honest for anyone also going through this journey. The following day I was floored with exhaustion. My arms felt like they would drop off and I was really giving an excellent impression of a glue sniffer on the spots front.
However, it was completely worth it. Two days exhaustion for three days fun? You know I’ll keep on making that choice!
I was finally at Week 4 of my meds – not that I’m counting or anything, but that means only 11 more months to go. Hey, when I turned 50 – I mean 40 obviously – I spread the celebrations out for that for at least 11 months so I’m sure I can handle these bad boys.
I set off for my first oncology clinic at 6am so that I could arrive ahead of the crowds to see the vampires – sorry, my mistake, to see the ladies in the blood room. I’m not an up-with-the-lark kinda gal. Friends who lived opposite us a few years ago suggested that we didn’t know there actually was two 11 o’clocks on a Saturday.
As such, I was not about to lose a valuable 15 minutes in bed by wasting it on make up. When I got to the blood room I was the only victim, I mean customer, so there was no time to slap on a bit of foundation to cover up the teenage spots. Yes, the spots, bleeding gums and a few mouth ulcers were still an ongoing gift from Mr Mekinist & Mr Tafinlar.
As I’ve told you before, even with my practically non existent veins, the ladies have that needle in your arm before you’ve warmed your bottom in the seat. As it was still quiet, my lady was in the mood for a chat. At the end of the chat – pay attention to this – she checked my date of birth. When I confirmed it she said she thought it was recorded incorrectly as I only looked IN MY 30’S!!!!!!! Some might say that was a bit of flannel to cheer me up, some might say it was the chin full of spots, some might say youthful good looks, whilst others might say pickled well. You can choose but I don’t need to hear the answer!
Straight from the blood room, I headed to see the physio. With so many lymph nodes gone, my leg had been swelling badly every day. The physio measured me up for a compression stocking. My dear readers, over the years, I have worn fishnets, seamed stockings, hold-ups & opaques but I never thought I would be sporting a compression stocking. The physio measures both legs to do a comparison and your leg is marked with blue marker all the way from top to bottom – toe to bottom actually. You get a choice of colours – I chose black as I figured it might be more practical. I will let you know if it was a good choice.
From there I went to the clinic. I expected to see my own oncology nurse, but this was different. I was assigned another nurse and headed off to an examination room with her to meet one of the oncology team. They needed to know about the side effects I was experiencing. They didn’t seem overly concerned about my spotty chin. To be fair, I had managed to cover up with a bit of make up at that stage. But, they were concerned about my blood pressure – do you see a pattern forming here? This time it was 150/115 – not that clever at all. They advised I must see the GP the following day to get it under control.
As an aside, if you are ever trying to text someone about your blood pressure, use the full words. If you put BP, your not-so-smart phone changes it to BO. So if you are rushing you end up telling people that your BO is out of control. This can produce a range of mixed replies!
As the appointment drew to a close, the next date had to be booked. The doctor referred to my ‘oral chemotherapy’ and swept over it so quickly I wasn’t sure he had said it. But when the appointment card was given to me it did indeed say Oral Chemo.
I needed to get back on the road so I didn’t question anything, but my head was buzzing. Wait a minute! I’m on immunotherapy, not chemotherapy. I’m not losing my hair or picking out head scarfs. Have I not paid enough attention? Have I not asked enough questions? I drove home in a blind panic.
I was still upset when I got home and blurted it out to OH. Generally I like to think things through before I tell him anything major. OH was as upset as me. Had we been tricked?
The following morning NN rang me. It was a perfectly timed call. She set my mind completely at ease. She explained that oral chemo would be an old school term for immunotherapy. That whilst chemo blasts everything, hence the hair loss and all the other terrible side effects that brave chemo warriors go through, I am on a targeted immunotherapy. Mr Mekinist & Mr Tafinlar speak to each other and stop certain proteins building up which in turn stops, hopefully, any further melanoma being created elsewhere in my body.
I know they are only words, but they are incredibly important. In so many jobs I have done in the past, we use jargon so easily. It was the first time I had been so upset by that jargon.
The following morning I received this card from my beautiful friends in the original WhatsApp conversation who had forced me to go to the GP with the lump. Of course, it is the ginger prince inside that suit of armour!