Fattypuffs and Thinifers

It’s well seeing my mother was a librarian..... While on today’s boat trip I had an image flash into my head of two boats. One was the one that skinny people went on because it rolled backwards and forwards. The other was the one the chubby people went on because it rolled from side to side. Going on the right boat stopped you from being sick.....

It’s taken me all evening and much googling to remind myself of the books name. Our mum died when I was 5 years old...... yet it seems she was reading us 1930s French children’s books during our formative years. Another memory that popped back at the strangest of times. Isn’t the brain amazing?? 

“Two Surface-dwellers. Two! He's a Fattypuff and you're a Thinifer. There's no doubt about it!”

Andre Maurois

Stormy seas and whale talk!

Around 3 years ago a friend and I decided to go on a boat trip from Portrush to Islay. We were going to walk and sample some whisky. On the day of the planned trip a storm came in. A big one. The trip was cancelled. We swore we’d do it again but time got away from us and it never happened. 

Last week I saw a whale and dolphin watching trip advertised. So I got in touch with my friend of 30 years and we decided we would do this to make up for not getting to Islay. We’d been looking forward to it..... even when the forecast started to look unpromising..... 

This morning I got up to torrential rain and a forecast of more of the same and possibly even thunder and lightning. Sure, what’s a bit of rain to us hardy souls?? Off we went. 

We left Portrush Harbour in the rain, but the water was calm. The rain got heavier.... and heavier...... and heavier...... soon it was hammering down and we were drenched. Not a whale or a dolphin to be seen but we were enjoying the sea air, despite the rain.

It was getting rougher, but still not too bad. Then we were warned to move to the front of the boat and hold on tight as it was about to get choppy..... It seems ‘choppy’ is code for “you’re about to star in your own version of Deadliest Catch!” The only thing we saw was our lives flash in front of our eyes as waves of over 20 foot high crashed over us! Two hours of adopting the brace position, holding onto the boat railings, squealing and laughing maniacally!! Mental. (NB The photo I’ve attached shows rain but water like a millpond! There was no way of holding a camera or phone when we hit the exciting bit!)

Living life?? Most definitely! We left that boat barely able to walk, most definitely without our sea legs, soaked to the knickers, happy, glad to be alive, proud of our very own re-enactments of ‘A Perfect Storm’ and celebrating 30 glorious years of friendship!

“We are sailing, we are sailing
Home again
'Cross the sea
We are sailing
Stormy waters
To be near you,
To be free!”

Rod Stewart

^Turns out I’m not fluent in whale...... or else they were just too scared to come to the surface because of the big waves!! Xxx

Be a simple kind of man

This day two years ago I was enjoying time away in the Mournes with my husband, sister and brother in law. My sister and I rolled down a grassy embankment and this morning I laughed watching the video footage again. We both almost threw up afterwards! If I were to do it now, I’d definitely be sick!!

This day last year, according to this blog, I wasn’t too different to how I feel today. A bit muddled at times, but generally getting by.

Today, this year, I am suffering a horrible headache which I’m putting down to the weather and my body getting used to steroid drops. It could change tomorrow. It could change this afternoon......

We’re 18 months into this journey. I’m generally happy and as ever my Support Team keep me strong. I’m looking forward to a quiet day off with hubby today. Then it’s back to work for the rest of this week and the start of next week. Then holidays! Pretty normal really. 

So what’s changed for my hubby and I? In some ways, not much. We go to work, we pay the bills, we go out, we chill out. In other ways, everything. We appreciate each other and we appreciate life. We spend quality time with each other, doing simple things. We go for walks, we sea bathe on a Sunday morning, we spend time with friends and just with each other. We value each other. We keep life simple but we do what needs done. 

"Oh, take your time, don't live too fast
Troubles will come and they will pass.”

Simple Man, Lynyrd Skynyrd

Storms, seas and families

There is research that shows being at the seaside is good for your wellbeing. I am definitely sold! I’ve struggled a bit this week due to Tropical Storm Chris bringing heavy weather (and a heavy head for me), plus another steroid drop. 

Yesterday I was feeling bad when I got up. The sky was grey, it was raining and I was tired, dizzy and miserable. Sunday is sea bathing day though....... hubby agreed to get in with me this week, and even my dad and his partner were coming down to watch and have breakfast with us afterwards. 

It was a slightly different experience yesterday. The sea was a bit choppier and I thought colder. Maybe it was just me that was colder because there was no sun shining down on me this week. I knew I’d feel good when I got in and, sure enough, it was as exhilarating as it was last week. Getting out after my half hour and having to get dressed in the rain wasn’t as much fun, but hubby helped and I was rewarded with a breakfast bap and the company of family and friends. Then we walked in the pouring rain and got ice creams. I am becoming quite the master at eating a 99 without spilling a drop, even in the pouring rain. The ice cream van man knows my order before I speak....... my very own version of Cheers! 

This morning I’ve awoken to sunny skies. My head is still a bit cloudy as I move through getting rid of these dirty steroids, but I’m up and in work and ready for the week ahead. Let’s do this! If anything is going to beat this it’s determination, family, friends, hopefully making a small difference to the world and sea bathing. Not a bad old life xx

“Smell the sea and feel the sky. Let your soul fly.”

Van Morrison

Whole lotta Tricia......

Like most women, my weight can go up and down. But having lost a few pounds quite a few years ago, I’ve been used to being a fairly skinny size 8. Of course I’d have looked in a mirror and seen the faults..... little did I realise! 

When I initially became unwell and was in hospital, I lost weight. I was referred to a dietitian and was prescribed build up shakes. I put the weight back on...... and kept going...... and going........ yikes! Steroids are not kind to your figure. Not only have I gained weight, I also literally puff up...... it can be painful and uncomfortable and there are ‘fatty deposits’ that appear from out of nowhere. I bloat and can look 8 months pregnant. My feet and knees swell, especially when I’m coming up to changing my steroid dose every fortnight, and in the hot weather.

At the risk of sounding totally vain, it’s hard for me as a girl to see the somewhat chunky version of me these days! I’ve never been really ‘girlie’..... I didn’t start wearing make up properly until I was in my 30s, and even then I kept it light. By the time I hit 40 I think I was at my most body confident time, but I was still always going to be a fairly plain Jane. 18 months on, steroids have not been kind to that size 8 figure..... though in fairness it’s my hand that keeps sneaking into the biscuit barrel!  I’ve been more disciplined with my diet lately, but the steroid bloat still happens regularly. I know it really doesn’t matter and that it’s temporary, but it can be difficult to look in a mirror sometimes.

Yesterday was a bad day. The weather was grey and muggy and my head was thumping. The human barometer strikes again. I was finding it difficult to keep my eyes open and it affected my mood. There were random tears on and off all day. Over stupid things. In August I’m due an appointment with my neurologist and I’m also due a scan. Neither appointment date has come through yet and I know rightly that I’m going to have to get help from my Hospice nurse to follow them up. Scanxiety is starting to creep in a bit. Thankfully hubby patiently reassured and made sure I wasn’t left crying for long. He even carefully manoeuvred his way through my tears over being chubby....... potentially dangerous territory for a husband, but he handled it beautifully. 

Today was a better day. I woke up to the sun shining. Tropical Storm Chris seemed to be leaving me alone and I felt much brighter. So we went into town and I bought clothes. More clothes. I ignored the size and I reminded myself I can lose weight later. I reminded myself that I’m fighting a brain tumour and trying to get off steroids. It’s ok to carry a bit of extra weight. Nobody cares. 

If you find yourself in the same position, George at Asda and TKMaxx offer very well priced and kind fitting clothing for the larger lady! I’ve now got some lovely bright coloured, bigger clothes, and my confidence has already been somewhat repaired. I’ll tackle the important stuff first. The weight can go later. 

I know this post may seem vain and unimportant to some, but I wanted to be honest about it because I know it can genuinely have an impact on peoples’ mental well-being, and that all impacts on our physical health too.  

I guess I’ll just be a whole lotta woman for a wee while......! Xx

Life on the ocean wave!

Any regular blog readers will know my love for getting outdoors. I’ve always had it, but being unwell has taught me to appreciate nature and the outdoors in a new way. I literally hug trees and I can tell you what the weather is like in the morning when I wake up by which birds are singing. Life shocks can open your eyes, your mind and your heart. If you let them.

For a long time I’ve had a real hankering to swim. To be in water. But I couldn’t stand the thought of the chlorine and chemicals in a pool. Combine that with my paranoia over my steroid body shape, and the fact that I’m not a strong swimmer anyway. Over the past year I’ve got by with the odd ‘toe dip’..... paddling in the sea when I get the chance and the weather allows. More recently, particularly with the good weather, my desire to get into water had become stronger and stronger. My ever patient and understanding husband did some research and discovered there’s a club that meet at the Arcadia in Portrush every Sunday morning for a swim in the sea. Perfect! I had a look and discovered I knew at least two members; one male, one female...... I spoke to them. The girl is a real ‘up for anything’ type of person and said she’d go with me this morning. The man said he’d see me in the sea. Decision made.

Wanting to make things as easy as possible on myself and enjoy it, I took a hop onto Amazon and a run into TK Maxx and invested in a swimsuit, a swim t-shirt, a poncho style towel, a pair of comfy shorts and a light t-shirt. I was all set. Last night and this morning I was filled with a nervous anticipation. Part of me just couldn’t wait, but there was also a fear that I was being a bit spontaneous and silly. As ever, hubby supported me fully and reassured me it wasn’t crazy. He helped me make sure I had everything I needed and took me down to meet my friend. Then he relaxed with a well earned coffee and in I went...........

I was filled with nervous anticipation. There are a couple of key moments..... the first step into the cold water, once it splashes over your knees, then your waist, and finally that moment when you just launch yourself in properly. 

I can honestly say that it was completely life affirming. It felt wonderful. I felt wonderful. Alive. Happy. I’m a rubbish swimmer but the Arcadia is safe and I was surrounded by others of all ages and abilities. I floated, doggy paddled and waved to hubby and other friends that had arrived at the cafe. My friend and I met other swimmers and chatted, laughed and enjoyed our dip. It was just brilliant! I think I stayed in for around half an hour.

There is undoubtedly a skill to getting dried and dressed in public after swimming in the sea...... it’s one I haven’t quite mastered. In fairness, my joints are still very sore so I’m not the most flexible! With hubby’s help I managed to get myself into some sort of clothed state again. We enjoyed a breakfast bap and a cup of tea and I grinned from ear to ear. Still am! We followed it up with a short walk in the mizzly rain that suddenly came in from out of nowhere. Then, when it stopped raining, we enjoyed a 99 ice cream whilst sitting on a bench looking out to the Skerries and Islay. What a perfect morning!

“Live in the sunshine, swim in the sea, drink the wild air” 

Ralph Waldo Emerson 

Stuck laughing.....

Not to undermine or make too light of what I know is still a serious situation, but I still maintain that laughter and a positive attitude can only be good things when it comes to serious illness.  It’s not always easy but yet again, I have had a comedy moment today that has lifted my spirits at a time when steroid reductions, a suspected ear/sinus infection and hot weather had left me a bit on the tired and moody side. 

Determined not to be beaten by the increasing tiredness, I have been pushing on but at a sensible pace. I’m sleeping a lot better at night but also find it harder to wake up properly in the mornings and I also get a lot more tired in the afternoons. The hot weather isn’t helping and I have to be careful as I can get a bit dizzy if I move too quickly. 

Today I went to work but had arranged to meet a friend for lunch. It’s good for me to get a leg stretch and especially to get away from the computer screen. We had a lovely catch up and I left to go back to work. On the way back I was lured into a clothes shop..... it’s sunny and they had a great sale on. I’ve put on so much weight with the steroids but I couldn’t resist buying a dress that had been reduced to just £12. A bargain! Sure I’ll fit into it some day......

So I arrived home from work and decided that my new dress was fairly roomie looking, a fairly flattering shape and therefore worth trying on..... What sort of a fool forces themselves into a dress that really has no ‘give’ in the material? Well, that’d be me. Peter Kay has a joke about there being no panic like the panic you feel when you’re stuck in something. This is true. As I stood in my bedroom, stuck in a dress, I could feel mild panic building..... What do I do?? I don’t have the strength in my arms to pull the damned thing over my head. I’ve tried everything and I’m exhausted from the physical exertion! I ring hubby but he’s miles away. I know my son will be home in 45 mins or so, but he’s bringing 2 mates with him. I need help! My neighbour. She’ll help. I step out of my front door and find a man in a van in my driveway. Here to fix the boiler. What can I do other than laugh?! I tell him of my predicament and we laugh at my misfortune and stupidity. Now I’m not panicking anymore. Now I’m just laughing. I go to my neighbour but she isn’t home. I laugh with her husband and we all agree that, whilst it’s hilarious, none of us want him or the boiler guy to help!

And so I go to the next next door neighbour. What an absolute star. We laughed ourselves sore and then she came straight over to the house with me. Between us and a bit of brute force and ignorance, I was free!! Free and laughing so hard I was almost in tears. People are just brilliant. 

It’s comedy moments like this that make illness so much easier. If you can’t laugh about getting stuck in a dress and having to be saved by your neighbour, then you need to really think about how you’re living your life!! 

On 6th September I will take my last steroid, all things being equal. Some day I will lose this horrible extra weight and I will wear that £12 dress. I’m not sure I’ll ever look at it without laughing though. 

Laughter. The best medicine by far! Xx

Still hot but less bothered.....

As everyone enjoys the unusually hot weather (30 degrees in Northern Ireland??), I continue to moan. It’s hot, it’s stuffy, my head hurts, my ears hurt, my nose is snuffly, I’m tired. Winge, winge, gurn, gurn...... I remain convinced that particularly high or particularly low air pressure is a brain tumour patient’s worst nightmare. What I need is an oncologist, a neurologist, a meteorologist and an analyst to do a bit of research..... one out of four is a start, surely?...

I’m on a course of antibiotics and getting ready to drop my steroids down again tomorrow..... it could be a long few weeks. But it’s July!! 

This time last year I was getting ready to start chemotherapy and, despite my big talk, my confidence was at an all time low.  I was preparing to attend the funeral of a dear friend who had been on the same ward as me in the RVH. A beautiful and brave lady who I will always remember fondly.

I certainly wasn’t planning a week at work and perhaps even a gig night on Wednesday. I wasn’t excited about finalising plans for the use of the £8,000 we’ve raised for Macmillan. I wasn’t counting down the days until I take my last steroid tablet. Nor was I planning ahead to a boat/road trip to see my sister at the start of August. And I certainly wasn’t wondering what my weight might be and what the weather might be like for a trip to Hillsborough Castle in September! 

Sometimes it’s easy to feel like my life is standing still. It’s not. Very far from it. It’s times like this when I’m glad I started and continued with this blog. I can look back and remind myself. 

Life is different but life is good. Dealing with life changing experiences takes time. There are ups and downs. 18 months down the line and I’m still here. I’m alive and happy and putting one foot in front of the other. I’m enjoying life. Not every day is a great day, but every day is a day some others don’t get. 

I’m keeping July quiet. It’s about looking after myself as I get rid of these awful steroid tablets and prepare for exciting times in August and September. 

Living with..... xxx

Evening update...... Turns I ended up accidentally reducing my steroids this morning instead of tomorrow. I’d done my pill boxes up wrong for today and by the time I realised it was really too late to take the additional tablet. So that’s me now down to 2.5mg. I can see light at the end of the tunnel! 6th September instead of 7th. Yay! I know it’ll continue to be difficult and uncomfortable, but I cannot wait to get rid of those horrible drugs.

Despite the tiredness and (literal) earache, we still found time today to have a lovely family breakfast out. Then this afternoon hubby and I went to Portrush in search of a pod of dolphins that had been sighted. We didn’t see them but we had a lovely breezy walk and a 99 ice cream. Now we’re watching footie and preparing a nice healthy stir fry for dinner..... I’ve some weight to drop before I meet the Queen next year! Think I’ll keep the ‘strong woman haircut’ though. Taking things slow, but still moving forwards.... Xxx