Always find the joy wherever you can

I’m sure you’ve guessed, dear readers, that the lack of a blog means I’ve had a few dark days. A mixture of side-effects, terrible weather so not much walking, an outbreak of more teenage acne and no ginger prince have all culminated in me being a bit of a miserable mare. Add to that, the lead up to the much anticipated CT Scan – yep, I’m a positive joy to be with right now.

However, I do appreciate the requests for blog updates – thank you for keeping me going!

As I’ve told you before, I really do enjoy a private concert in the car. It’s just over two hours drive to the hospital so I usually have a playlist ready. Due to the current funk I’ve been in, Wednesday’s trip to the hospital was a full on pity fest – we are talking Neilson, Céline, Mariah and my very favourite, Barbra. Oh yes, I was going for it.

Two things happened that stopped me in my tracks, both physically and mentally. Myself and Barbra had just finished a fine duet of Woman in Love, the applause was fading, next up? Bing Crosby sidles in with Mele Kalikimaka!!! I must have ticked it by mistake from the Christmas tunes and there he was. In the midst of my melancholy, even I could see this was very funny and it felt so good to laugh.

The second thing to happen was a multi coloured sheep. I take the most beautiful route to the hospital and I’ve tried to take a few photos of my journey but my camera really doesn’t do it justice. Each time I drive past these sheep I always think of my friend in Yorkshire who I am certain would paint her sheep this colour if she went into farming. Not that she would, as we have both proved ourselves to be ridiculously soft over our animals and inconsolable over their recent loss – probably not the best personality trait for a farmer. I pass these sheep often and they rarely take any heed of me, even when I am edging past them in the car with Barbra blasting out. This time I stopped to take a photo and spread the joy.

Pretty fabulous sheep!

The ladies in the blood room must have been cursing me this time round as I was their last victim, sorry, I mean customer, of the day. My veins decided this would be a great chance to disappear. Three nurses later and several attempts on both arms, I finally parted with a bit of blood. I’ll spare you the photo of my bruises today. Completely my fault as I hadn’t considered that I was fasting for the Scan later and I hadn’t been keeping myself warm either. Won’t fall for that again.

The nurse in the CT Scan room also needed a vein to get the dye in. It was an abdomen and pelvic scan. This is checking that Mr T & Mr M are actually doing their jobs.

As you’ve probably lost track of the various scans, this one is the delightful one that makes you feel like you’ve wet yourself when the dye goes in. A bit like when you first experience leather heated seats in a car. I know it’s not just me! You’ve also drunk a load of weird liquid for an hour before the scan, so it’s a genuine concern. Anyway, thankfully I hadn’t wet myself and the scan was over really quickly.

The following day was the ‘oral chemo’ clinic. I still hate calling it that. Obviously too soon for scan results, so the young doc (they are ALL young) had to listen to my woes about spots, coughs, headaches and exhaustion. Poor lad – probably put him off marriage for life.

The good news is that my Blood Pressure was right down. The bad news is that it’s now on the floor. It does mean that I can stop one of the BP tablets immediately, which is great news.

As I was in Cork for two days I was able to stay with my friend for the night. Back in the day, we have shared many a mad night that usually ended in the realisation it was daylight. This was much more sedate and yet, equally as fabulous. Yet again, it’s all about finding the joy. My Cork trips have brought us right back into each other’s lives.

So now it’s just to wait. Scan results sometime this week…

My favourite view on my journey home

More spots & fancy ankles

Several people have asked me how successful my new compression tights have been. I have to tell you – they are flippin marvellous!

I have no nails left from dragging the tights on every day and a huge dinner is out of the question whilst wearing them, but as you can see from the photo, my ankle has pretty much returned to the original size. A couple of my toes are a little bit swollen and the top of my foot is a little bit podgier than the other one, but I am delighted. I can get my boots back on and, more importantly, back off again without OH having to prise them off like a tug of war every day in the kitchen.

These are such huge leaps for me. I can’t tell you how depressing it is not to be able to get a particular shoe on. Equally the corresponding constant dull ache that accompanies the lymphodema. My foot no longer hurts.

Obviously the lymphatic fluid has to go somewhere and while my trampoline is still to arrive to assist this, my thigh seems to be the host for the fluid. This can feel really heavy – generally you will find me watching the telly on an evening with my leg up in the air or at least hanging off the back of the sofa. It’s very attractive.

I’m hoping to get in touch with a lady who specialises in lymphatic drainage massage in the next few weeks, so I’ll let you know how that goes.

Years ago, we were on holiday in Turkey with my sister and her family and went to a Hamman. That’s a Turkish bath to any of you that haven’t been there.

We were instructed to get up onto these marble slabs and lie down. Two huge guys arrived in with buckets and goat hair flannels. They scrubbed us from head to toe – don’t go if you’ve had a spray tan for your hols, gone instantly. We were then told to stand up at the end of the room where they lashed ice cold buckets of water over us. They probably laugh their heads off at stupid tourists afterwards. We then went off to have massages.

We lay down on our beds in a line, me and my sis with the boys further down the room. Beautiful Turkish men then came in to massage us. Well, dear reader, I can only tell you that the men who massaged us were probably more familiar with my every nook and cranny than my beautician or any surgeon! The boys were finished way before us and drifted off to get shaved. When the massagers had finally finished with us they disappeared and the two of us stood up to discover our bikinis were half hanging off. We didn’t know if we’d had a fabulous time or been taken advantage of! My skin was glowing though.

I suspect lymphatic drainage massage won’t be quite so much fun.

There’s also a slight improvement in the teenage spot situation. A witch hazel face mask and some Swedish soap given to me by a fabulous friend in America seems to have helped enormously.

Moving on, scans and hay

Apologies for the break in the blog. I’m sure you all appreciate this has been an unbearably sad time for me and OH. Thank you all so much for your kind words, card and gifts. Rog will always be in our hearts and I’ve no doubt he will pop up as I recount some other tales as we go along this journey.

But for now I need to bring you all up to date with my treatment and the new joys Mr T & Mr M have been bringing me….

Current status – massive eruption of spots; looking distinctly like a glue sniffer right now. Nothing has change in my diet or with the meds yet I woke up on Monday like a hormonal 17 year old. You could play join the spots on my face. I sent my sister a photo and even she agreed it wasn’t something I should be sharing on here. And she’s the positive one!

Needless to say I’m not venturing much further than the village shop and that’s with a scarf wrapped round me.

Before we lost our boy I had my latest appointment at the immunotherapy clinic (I was nearly clear skinned then). The cough that won’t go away was investigated again and we discussed that I have a burning in my throat, like acid reflux. They prescribed Motillium.

If you’ve ever worked with me you will know my work bag usually holds a myriad of weird & wonderful drugs for tummy bloating. My favourite was always Buscopan but I don’t think you can buy that over the counter any more. Motillium was another favourite so I was surprised – what can that do for a cough? But lo & behold, it seems to have done the trick. They know a thing or two these docs.

I confessed to worrying about my scan; that it was preying on my mind. Of course, I know that I am incredibly lucky to be on this treatment but in the dead of night I can still convince myself I can feel a new lump or bump.

The consultant assured me that my tests are all coming back clear and that their concern is only – surprise – my blood pressure & signs of fatigue due to the meds. Their concern was strong enough to sign me off for another 8 weeks, so still no return to work for me just yet.

We decided a change of scene would do us both good so we headed ‘up the country’ to see our friend who has recently bought a beautiful property with some land and stables for her horses.

I think we all know that even though I own some fabulous Joules wellies, I’m really not the outdoorsy type. The journey was 5 hours to reach her so we didn’t have a tour of the stables until the next morning.

Unfortunately I had already munched into half a home made muffin before I remembered I hadn’t taken my meds. I figured it wouldn’t matter and quickly took them. Wrong!!!!! When they say an empty stomach, they really mean it. Welcome back nausea with a vengeance.

Obviously when you’re at someone else’s house, even when you’ve known them 30 years, you still don’t want to be a party pooper or a drama queen – always tempting on my part I must confess. So off we went to explore the fields and the stables. I also thought the fresh air would help.

The fresh air was ok, didn’t really help, but the stables finished me. It’s beautifully clean – a proper horsey hotel – but the smell of the hay! Oh my word – I feared yesterday’s breakfast would make a reappearance. I beat a hasty retreat. The rest of the day was spent on the sofa watching rugby. Thanks Mr T & Mr M, I don’t see my friend for ages and you bring on the nausea to stop any partying in its tracks.

It was hard coming home to an empty house, especially as Rog had got so good at knowing when I was unwell. But the next day we went for a walk on our nearest beach and how could your heart not feel lifted and a tiny bit healed at this sight?

This morning my scan date has come through – 19th Feb. I am both pleased and scared at the same time. It’s another one with a dye so you can look forward to the tale of wrestling with my veins.

I’ve also ordered a small trampoline. I can hear you laughing already, but apparently bouncing is fantastic for the lymphatic system. I won’t tell you what type of bouncing OH suggested would be more beneficial! So brace yourselves for, no doubt, comedy injury stories with the impending mini trampoline.

A tribute to the Ginger Prince

Yesterday our boy lost the last of his nine lives and went over Rainbow Bridge.

I can’t begin to tell you just how devastated we are right now. Of course I’m well aware some people might think he’s just a pet, but to us he was our baby, our little boy.

I don’t want to linger on the details, but the vet thinks he may have been hit by a car. Whatever happened, he sustained a spinal injury and whilst the vets were incredible, Rog just couldn’t find the strength to fight the pain and keep going.

I am incredibly grateful that he made it home, that we didn’t have to spend days looking for him. I am also grateful that the vet rang us in time that we could hold his paw and kiss his beautiful ginger head while he made his journey over the bridge. We told him how much we loved him and that he would always be the best boy in the world. I’m pretty sure he heard us as he slipped away, leaving us utterly bereft.

He was, indeed, a character. He put us in some majorly embarrassing situations over the years – we often said it was like having an ASBO teenager in the family.

We should have known right from the beginning. When we took him to the vets for his little boy operation, the vet asked if I’d ever owned a ginger cat before. My response was well, do you ever own a cat? But yes, I’ve always had cats. She shook her head ‘No’ she said ‘a ginger tom is a completely different experience’. Never a truer word.

When he was still quite young and I was laid up at home after my first melanoma operation in 2004, I got a call from my friend who lived around the corner. It was the run up to Halloween and a big bonfire was being built. Roger was supervising! OH was dispatched to retrieve him. Rog was furious.

When we first moved to Yorkshire there was a cricket field about half a mile away. I lost count of the amount of calls I would get saying Rog was down there, watching the cricket. He had such refined tastes!

He was a wicked cat burglar and broke into several houses. Our first neighbour in Dublin told us he was having brekkie one morning – superquinn sausages no less – looked down, and there was Rog waiting for his share.

In a more unfortunate incident, he broke in to our neighbours & took a little snooze. When they discovered him he tried to leg it but in his panic he managed to trash their kitchen and break their bread maker. Thankfully they forgave him.

Another time, he sneaked into a nearby holiday home that had just been cleaned ready for new residents that evening. They found him asleep on the lovely white duvet where he had covered both beds in lovely muddy paws. To be fair, they had left the window open, so they were pretty much asking for it….

He was a master surgeon and often treated us to the most revolting little piles of entrails from some unfortunate bird or mousey. On the run up to Easter one year, he dragged in the back half of a hare through the cat flap. By the time we discovered it, he had spread it round the kitchen like a scene from a horror film. He was most offended when we weren’t delighted. It was, afterall, the Easter Bunny!

He was a fierce fighter. Mostly his fights were lots of rude words shouted at top volume but a family moved in near us who had two older gingers. We had heard a few fights but they eventually stopped and we assumed an agreement had been found. It later transpired that the two gingers had gone to live with their granny as the vet had advised they wouldn’t survive another beating. We hung our heads in shame – Roger did not.

I can count on one hand the amount of uninterrupted nights sleep I’ve had in 16 years. He would like nothing better than to wake me around 5am, demanding his breakfast. If I didn’t respond quick enough a heavy paw would smack me round the head or maybe a bit of a bite. My work mates will certainly remember me coming to work with a cut eyebrow from a well placed gingie bite.

But for all his antics, he could also be incredibly loving. Never a lap-cat, he loved nothing better than stretching out next to us on the sofa or wedging between us in bed. He would puff out his fluffy chest a bit further when his daddy told him how handsome he was or how gorgeous he smelled when he’d been out in the moonlight.

I started tweeting for Rog back in 2009 and somehow we ended up in a gang made up of doggies, no other cats. This lead to numerous hilarious conversations about who was better, dogs or cats. Rog also ended up a reluctant mascot for Woofstock which is a fabulous festival for dogs in Devon. Much as he pretended he was disgusted, he was secretly delighted – always the diva.

I could keep telling these stories for hours but for now we are locking up the catflap tonight. We can’t bring ourselves to clear away all the toys or the dreaded radiator bed (that he would never use) just yet.

I’ve no doubts that, just like the catflap, we will open our hearts again to another fur baby eventually. But for now, we are heart broken. Our lives revolved around our little boy and he knew it. Just like the ad, he was worth it.

Intolerances, hairy legs and winning the lottery

Having reconciled myself to the fact I’m not going back to work for another few weeks, I decided I had better use the time wisely. I had big ideas of walking miles and going back to work looking super svelte and 10 years younger. Actually Storm Brendan put paid to that almost instantly and my motivation went out the window. They’ll have to put up with me chubbier and a bit more care worn.

I also discovered that Mr T and Mr M heighten any intolerance you might have. I don’t mean, say, to Manchester United fans, I mean physically.

I have always had a slight intolerance to lactose but I do treat myself to a real milk hot chocolate every now and then with very little consequences. I figured I deserved a treat this week and dived into a hot choc and cream. Disaster! Barely made it home – I will spare you the details, but it wasn’t pretty and was also incredibly painful. Won’t be trying that out again until after September when Mr T and Mr M should be leaving my life.

The other joyful thing they have brought is hair growth. Yup, sounds good, but then have a think about all the other places hair grows on your body….

Years ago I went with a friend for a Brazilian, not the footballer kind. I’m not going to explain it, so you’ll have to look it up if you don’t know. Maybe don’t google it on your works PC!

Anyway, she really wanted to do it and persuaded me to join her for moral support. We went to a posh salon in Dublin. We were taken off to our separate treatment rooms and didn’t see each other for another hour. As I’ve got older I’ve lost any inhibitions with beauty therapists and nurses – they’ve seen it all and really don’t care what you look like ‘down there’ , but this was a first for me and the whole experience was mortifying and I ended up looking like a plucked chicken. Not as mortifying as my friend though. When she came out she was pale faced, paid her money and we left swiftly. Only when we were safely ensconced in the pub next door did she reveal that her beautician had commented on how hairy her bottom was and made her get up on all fours to wax ‘everywhere’!!!!

I literally couldn’t breath for about half an hour from laughing so much. She was so indignant. She moved back to Australia not long after that and I often wonder if she recounts that tale to anyone – I’m guessing not.

Actually though, I’m talking about hair growth on my legs. I’ve never been a particularly hairy person and could go for at least a week without shaving my legs, now it’s two days! And you might think well what does it matter, it’s winter. Not so. Any stray hairs catch on my compression tights and pull like mad. Add to that, with the lymphedema, you must moisturise your legs to avoid cracked skin on the swelling – all in all I have the smoothest legs in the county right now.

A friend suggested that I should do one of those boudoir photo shoots for myself, boost up my fading ego. It reminded me of this.

How true

I’m a big believer in the Law of Attraction and positive affirmations. If you know me you have probably had me force you to say you have a new job already before any interview. It works for me. So when I told OH I was going to win the Euro Millions this week, I was only half joking. When you ‘play’ online, if your numbers come up you get an email notification. On Friday night I got that email and then the system wouldn’t refresh for over half an hour! By that time I had paid everyone’s mortgage off, donated millions to animal rescues and bought The Ginger Prince a diamond collar. The email came through eventually – I won €20. But, hey, a win is a win and there’s always next week.

Breathe in….and hold

This morning a parcel arrived through the door. A late Christmas present? A get well soon gift? Nope, the new compression garment from the physio. Yes, dear reader, this is my life right now!

I was only musing on this with my friend as we swapped soup recipes on WhatsApp. We used to talk gossip, boys, the million pound game (anyone who has ever worked with me is forced into that one) but now it’s soup recipes! What on earth has happened??

Anyhoo, as promised, the physio has sent my new compression garment to save me a trip to Cork. The previous one, you may recall, was like a super thick toe-less hold up stocking. I was finding this made my toes swell and also stopped just on the swelling on my thigh. Lymphedema, the gift that keeps on giving.

So this new little beauty is exactly like a pair of tights. It’s made-to-measure for me. It’s still super thick and all my nails are broken from trying to pull the damn thing on. BUT, oh my word, the relief it gives is amazing.

It’s hard to describe how lymphedema feels other than it makes your leg feel like a lead weight. My thigh isn’t numb as such, but it’s like pressing into a cushion – very squishy.

The other leg of the ‘tights’ is cut off on my thigh – like a pair of cycling shorts (not that I ever owned any of those!). There won’t be any photos, that’s a promise.

As I manoeuvred myself into this sexy little garment I genuinely had to stop and have a laugh. Imagine if I was single? Or in a new romance? Just one moment while I take 10 minutes to remove this pair of half tights?? Talk about killing the moment!

I would have to think up an exotic story – melanoma isn’t much of a chat up line to be honest. As I told you before, I used to tell kids on holiday that my scar was from a shark bite.

Once, at a water park in Turkey, I was standing at the top of a slide waiting my turn with my brother-in-law. Just as our turn came, the operator guy asked me what had happened to my leg. My brother-in-law said it was from an accident on a water slide! His face fell and the people behind us gasped. We zoomed off on the slide – well that’s a bit of a lie. He zoomed, I edged down until it was too late and I had to slide. Adventure is not my strong point!!

I’ll let you know how I get on with the new garment in the next few weeks.

I wasn’t sure what photo to put in today but Apple suggested I might like to listen to Kylie this morning. She’s fine, I wouldn’t call myself a massive fan, but it’s always good mood music so why not? Then I listened to the lyrics of Dancing. They are so appropriate – can’t stand still, wanna go out dancing. I really like the next bit…

Brilliant lyrics

Going to sit down and do some planning for some dancing with my girlies in 2020.

Change of plan

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.

What doesn’t kill you…and other hurdles

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.

Happy New Year!

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.

Happy Christmas

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.

For now I wish you all a very Happy Christmas.