Just keep swimming.....

The forecast was right...... it poured with rain this morning. You must be a bit crazy to go sea bathing in the Atlantic on a day like that......... Ladies and gentlemen, I present to you, Exhibit A;

Crazy? Maybe. But at least we know we’re  alive! Sunday sea bathing with my sister and brother in law, who came over from England especially to give it a go. Photo taken by hubby, who was just out after his dip. Breakfast baps and cups of tea afterwards, joined by my dad, son and a colleague and friend. I have the best family ever! 

Home to a hot shower, heating on for the first time in months and Finding Dory on the TV. Perfect Sunday. Plus a Bank Holiday Monday off tomorrow. Doesn’t get much better than that. 

I might be a wee Dory sometimes, but I’m still swimming.

“I can remember some things because I have a family because everyone has a family.”

Dory

Fundraising, laughter and sunflowers

So what’s been happening?? Well, I was working Monday to Thursday so I haven’t had a huge amount of time for fun. Although thankfully I still enjoy my job and have great colleagues, it’s still true that some days ‘work is hard work’..... 

Truthfully it’s been a tough enough week. The steroid reduction (down to just 0.5mcg from tomorrow!) brings all sorts of odd side effects, not least tiredness and some mood dips. Thankfully family, friends and work colleagues are always on hand to lift my spirits and make me laugh over something or other. 

I also made a big step forward with sorting out all the money raised from our fundraising activities. The final amount is almost £9,000 and I’m getting ready to officially hand over a ‘big cheque’ on Monday 3rd September. Then I’ll be able to tell you all what we’re doing with it. Tangible outcomes. Watch this space.......

Physically my joints are sore at the moment, and I get very tired. The weather doesn’t help...... I’m like a human barometer, so low pressure and my brain do not get on....... It seems to be that a low pressure front hitting a high one has the biggest impact; causing me headaches, a mood drop and even an increase in general dopiness. Stormy weather is not a brain tumour patient’s friend. Plus it’s going to make my Sunday Sea Bathe somewhat less pleasurable..... 

Having said all that, I’m refusing to let it stop me. I can’t change the weather and I know I have to be careful, but I can help keep my own mood up. Here’s how I’ve done it this week -

• Music - I start my days with some upbeat music while I get ready.
• No pressure - I’ve been deep breathing and not being dragged into anything negative or high pressure.
• Reading - I’ve been going to bed early with good books.
• Laughs - I’ve been honest with those around me and they’ve helped keep me buoyant. As ever, the shining stars keep glittering all around me.
• Hugs - It’s amazing the difference a good hug can make to a crap day. 
• Sunflowers and wildflowers - Hubby took me to see a beautiful field of sunflowers and wildflowers yesterday. Yet again I’m reminded of the beauty all around us.

To top things off, I’m now heading into a very exciting time..... my sister and brother in law are coming over for a couple of days, and September sees the end of the steroids, a few gigs, a couple of nights away, the handing over of the charity money, and my BEM investiture ceremony! 

The future looks exciting!! I’ve been in the wildflowers, I’ve been in a boat out at sea. I’m 

#livingwith xx

“You belong among the wildflowers

You belong in a boat out at sea”

Wildflowers by Tom Petty

Hat optional

It’s not every day you get a letter that includes the sentence “The wearing of a hat is optional”........ 

Today I received the details for my British Empire Medal investiture ceremony. It is both exciting and surreal. I’m not going to try and play it cool and pretend I’m not excited. Not in a million years would I ever have imagined myself being awarded a medal. I still can’t quite believe it, but I’m enjoying the sheer craziness of it! 

So will I wear a hat?? I have friends trying to persuade me to go the whole hog - designer dress, fancy hat etc..... My biggest problem is that I have no idea what size I’ll be..... I’ve put on weight from the long term steroid medication, but I’ll have finished taking them by the time the ceremony takes place. If the weight comes off as quickly as it’s gone on then hopefully I’ll be able to wear a nice dress and feel good about myself. Maybe I’ll even be able to wear heels if my feet have stopped swelling and looking like a hobbit’s and I’m a bit steadier on them!

Regardless of my size, I’m still not a ‘girlie girl’...... I’m a plain Jane. But isn’t it lovely when my dilemma is what I should wear?! Not exactly a big worry when you consider some of the stresses we’ve had over the past 18 months. 

So will I wear a hat? Who knows? Unlikely I’d say..... unless I can wear a big floppy one like Stevie Nicks in the video for Tusk. Will I get glammed up in a dress and heels? I’ll try my very best. I certainly won’t wear jeans and whilst I can’t guarantee a Meghan Markle style outfit, I will dress appropriately in something pretty and I’ll wear it with a smile! Will I enjoy every moment of the event with my family? Damned right I will! 

“I try to be like Grace Kelly
But all her looks were too sad
So I try a little Freddie
I've gone identity mad!”

Grace Kelly by Mika

Laughing mindfully!

I know I should be hiding this but it’s too funny not to share. And you know laughter is my absolute favourite medicine.

Today I’ve been trying to relax as I’m not feeling great. I think I just have a cold and am still enjoying the steroid reductions. While pottering, bringing in washing, this beautiful butterfly landed beside me. Like the true hippy I’m trying desperately to become, I stopped and watched him for a while.

In order to try and chill this afternoon, I lifted a magazine that had a section that encouraged me to colour in butterflies they’d given you the outlines for. It’s a sign, I thought. I’ll give this a go, I thought.

I went and found colouring pencils that used to belong to my son when he was at primary school...... I settled myself on the sofa....... I started to try and be mindful......

Mr Butterfly, by Trish, age 43 and a half.....  

I swear I’m trying so hard to be mindful and relaxed and all that jazz..... but when it comes to being creative I think I need to stick with analysing and writing. 

I love being outside and enjoying nature. I love to read. I love to sing. I’ve even learnt how to deep breathe and how to meditate......  But an artist I will never be! Not a mindful magazine in the world is going to change that I’m afraid....... 

I’ll bet Monet couldn’t write a report on organised crime issues..... the world needs all sorts!

“A person who never made a mistake never tried anything new.”

Albert Einstein (allegedly!)

Wayfaring in a car....

Can you count it as wayfaring if you’re in a car? Or do you have to be on foot? I’m not sure, but it’s a nice word so I’m using it! Hubby and I are back from our wayfaring.....

Here’s how our 6 day road trip panned out.....

Coleraine to Larne 

Larne to Cairnryan by boat.

Cairnryan to Dumfries

Dumfries to Pooley Bridge (and Ullswater Lake)

Pooley Bridge to Kendal

1 night in Kendal

Kendal to Morecambe 

Morecambe to Manchester

2 nights in Manchester

Manchester to Marsden

2 nights in Marsden

Marsden to Glasgow

1 night in Glasgow

Glasgow to Ayr

Ayr to Cairnryan

Cairnryan to Larne

Larne to Coleraine

7 days, 6 nights, 694.8 miles.

Why? A number of reasons really...... my sister  and husband were having their third (yep, third!) wedding party. Considering they moved their wedding to Coleraine to accommodate the little princess, it seemed only right we make the effort to go to their party in Manchester now that I’m a bit fitter. Plus we wanted to see the house they’ve been renovating and spend time with them. And finally, we deserved a break! We wanted time away together, away from work and having some fun. A holiday. 

But why not just fly?? Oh, I don’t do that, remember?? I pity the fool! Honestly, a change in air pressure due to weather can cause me a headache...... there’s no way I’m getting on a plane. Thankfully, hubby was up for a road trip and we made a vague plan. Very vague. Then we just followed our noses.

Worst bits? 

• The drive from Cairnryan to Dumfries was grim. 
• As a Glaswegian, I’m ashamed to say it, but the night in my hometown won’t go down as a great time.  Mostly my own fault. I’d done way too much and was struggling quite badly by our last night. My joints were so swollen I was miserable and my back was agony from bumpy roads and too much walking around in hilly towns. Plus I only booked it a couple of days before and there were cycling timetrials on in the city centre so all the roads were closed and it took over an hour to get to our very expensive hotel...... where we were put in a tiny room with the most uncomfortable bed, on the top floor, at the furthest away point. Literally the last room! So Glasgow wasn’t a huge success. Learning from past mistakes, I even had to walk out of a shop and deep breathe for a minute......I reckon it was the closest I’ve come to a seizure since March, which would’ve been a massive backward step. But I’ve learnt my lessons and I didn’t play the hero. Hubby patiently helped me back to the hotel and endured a night of me tossing and turning. Not to mention a few tears. It was unpleasant but I also proved to myself that I can remain calm and that it’s ok to admit if I feel vulnerable to a turn. Ever the comedian, I got a song in my head and indulged my dark humour (until hubby told me, rightly, to stop it because it wasn’t funny...); ‘The South’ by Cadillac Three “This is where I was born and this is where I will die”. Yep, hubby was right. Not funny.

Best bits? 

• The ferry. Odd choice I know, but it brought back memories of childhood (minus the four hour journey and vomiting that we used to endure!)
• I loved Morecambe. Purely for Eric’s statue. I’ve already blogged about it so I’ll not repeat, but what fun that was!
• Time with my sister and brother in law at what I’ve now named ‘Badger’s House’. Again, I’ve already blogged about it.
• Ayr. We stopped there on the way back to the boat and were pleasantly surprised. The sea air seems to just be my thing! It clears my head. Ayr reminds me of what I imagined Port Angeles was like when I read Twilight by Stephanie Myers. There are lots of little side streets with quirky shops. The best of all worlds; sea, river, lost things in quirky shops down unexpected alleyways. Imagination fully engaged... Ayr gets a big thumbs up from me. 

So all in all, a wonderful trip away. Tiring but I’m home feeling like I’ve taken another big step forward. Refusing to be beaten but learning from past mistakes of pushing too hard. 

As of Sunday, I’m down to just 1mcg of steroids a day. Titrating down continues to be tough going, but if all things remain equal I’ll take my last one in 4 weeks time. For me this is really important. I don’t like taking medications and I’ve no interest in living my life high. The other side effects are awful too - weight gain, fluid retention, mood swings, and other stuff that’s not for a blog! Plus I never know when I might actually need them again in an emergency situation. They’ll be far more effective if I’m not already totally dosed up on them.

Overall, a big week on a long health journey. Another milestone. With my amazing family at my side. 

Living with......

“You can’t stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes.”

Winnie the Pooh, by A.A Milne

Seeing the world in book and song

“When he had started gathering Lost Things all those years ago, he hadn’t really had a plan. He just wanted to keep them safe in case one day they could be reunited with the people who lost them.”

The Keeper of Lost Things by Ruth Hogan 

I feel like I’ve started seeing the whole world in books or in song. Every new experience makes me think of a passage in a book or a song lyric. I pretty much have always seen the world like this, but it’s far more pronounced now. And I’m much more willing to say my thoughts out loud. 

Yorkshire is very much being seen in books.... predominantly The Wind in the Willows, but today we walked into an antique shop and I was suddenly in the book I’m currently reading, ‘The Keeper of Lost Things’ by Ruth Hogan. This shop even had a basket of keys that you could buy for £2 each. How wonderful is that?! Some had labels still attached. How could that not spark your imagination?

The shop was filled with other gems too. I spoke to the owner;

Me: “You’re like the Keeper of Lost Things. (He smiled but I’m not sure he got the reference). This is a very cool shop. I’ve watched Flog It. I know how this works. This egg says £6 but I’m going to offer you five. You’re going to sigh and argue a bit but eventually relent.”

I handed him a £10 note and, without a word, he smiled and gave me a £5 note back. I thanked him and went to leave. Spotting a small wooden box on the way out, I went back in.

Me: “And now I’d like this too. Again it says £6, so I’m going to give you the £5 note you just gave me back.”

Shopkeeper: “Ok. Would you like a bag?”

Me: “No, that’s fine. My husband has pockets. That’s where I found the £10, so now I’m going to put my treasures in them as a replacement. And then we’ll find out they’re worth £360 each and you’ll realise what a great eye I have and the mistake you’ve made!”

Shopkeeper: *smiles* “Enjoy the rest of your day.”

£10 well spent I think! 

In the Wild Wood

“"Thought I should find you here all right," said the Otter cheerfully. "They were all in a great state of alarm along River Bank when I arrived this morning. Rat never been home all night—nor Mole either—something dreadful must have happened, they said; ......... But I knew that when people were in any fix they mostly went to Badger, or else Badger got to know of it somehow, so I came straight off here, through the Wild Wood.....”

Kenneth Grahame

My sister and brother in law have renovated a house in West Yorkshire. They’ve spent months on it and poured their hearts and souls into it. Having come here, I now understand why. It’s the Wind in the Willows in real life! I have literally arrived at Badger’s house..... 

It’s completely overwhelming and beautiful. A perfect haven. I have never felt so at ease in my life. 

Coming over here has been another big milestone for me. I’m too scared to fly because of the change in air pressure. Plus I had a bad experience with my head and ears on a plane a few years ago. It was put down to sinus problems at the time, but hindsight is a wonderful thing....... As neurotic as I know it is, I dont feel comfortable flying and I don’t see the point it putting myself through the stress at this stage. 

So to get here we’ve had to road trip it. That meant a longer trip away and hence increased my nerves a little. There was the journey, the second wedding party, and then seeing the renovated house. Even being away from home for a week was somewhat nerve wracking for me. I have been full of nervous anticipation over the trip for weeks. 

But now I am here. In my own little Wind in the Willows..... with some of the most important people in my life. 

Overwhelmed but overjoyed. 

Living life xx

Road trip part 1 - Bring me Sunshine

“Here today, up and off to somewhere else tomorrow! Travel, change, interest, excitement! The whole world before you, and a horizon that’s always changing!”

The Wind in the Willows by Kenneth Grahame

In May my sister and her (now) husband moved their entire wedding to Coleraine to accommodate me. As a result their night do was a charity rock gig with very few of their friends in attendance. 

Always one to make the best of a situation, my sister had a further two wedding parties! One in London for friends living there. The second was tonight in Manchester. Hubby, son & girlfriend, and I decided to come along and celebrate with them. Normal people would fly here, like my son and his girlfriend. But nooooo, the wee princess won’t get on a plane. A good thundery day gives me a headache..... ain’t no way I’m getting on a flight. I pity the fool....... 

So how do we get to Manchester? Boat of course! Dublin to Holyhead? Dublin to Liverpool? No good. Too long and boat times awkward. Poor hubby worked through all the options with me. Finally we decided on Larne to Cairnryan and a drive down via the Lake District. The princess wants to see Ullswater.... 

We left yesterday morning. Larne to Cairnryan is a very different experience to what I remember as a kid. We used to do it every year. It took hours and I spent most of the time throwing up. Nowadays it takes 2 hours and is cruising! We paid an extra £20 for the Lounge and enjoyed priority boarding and a quiet place to sit with unlimited cuppas and snacks. Money well spent. We went out on deck and I laughed as we passed Ailsa Craig..... every year as a kid my dad would’ve quizzed us “what’s that rock called??” I even remember that it’s rock from there that’s used to make curling stones..... I enjoyed the memories and smiled at the prospect of visiting my home country of Scotland again.

What I hadn’t remembered was that Cairnryan is the middle of nowhere..... The road from there to the Lake District will not sell Scotland to you, I'm sorry to say. It’s like being on the Frocess but for hours and hours...... with less tractors but more freight lorries. 

After what felt like days, we stopped in Dumfries. Again, not a great advert for beautiful Scotland. Saved, however, by the Burns trail...... a museum, statue etc to mark the famous bard’s time spent living there. We had some food and spent a short time exploring.

Next? The Lake District. We’d booked a hotel in Kendal for last night. But we wanted to see Ullswater on the way. We used to have a print of Ullswater Lake on our wall at home. A cheap, IKEA special that we took down ages ago, but it hung for many years..... seemed only right we visit the place we had on our wall for so long.

We duly started along the next stage of our journey. Almost there, we saw a sign saying “Alpaca Centre”. I have a friend who recently informed me she is getting two alpacas in September. She claims they can sense stress and will only come over to you if you’re calm. If you’re stressed they avoid you.... So we stopped at the Alpaca Centre because we were curious.  Unfortunately it appears to be shut and there’s not an alpaca in sight. Looks like a shed in the back farm yard that sells alpaca wool products. So we go to leave....... only to find ourselves locked in!! For a moment I was scared we were in the Ullswater version of Texas Chainsaw Massacre..... Hubby went off to try and find someone and out comes this man with long grey hair and a bit of an attitude tbh..... Thankfully he opened the gate and let us out. 

 Ullswater was lovely but it’s getting late so we push on.

As for Kendal? Pah! It was a Friday night in August and everything was shut at 5pm. The handful of restaurants still serving were full. Absolutely no character at all. We ended up having to have Pizza Express because we couldn’t find a pub doing pub grub. Even Table Table had a 2 hour wait! Nothing to write home about at all.

This morning I woke up exhausted but excited to be going to see my sister. And I had another reason to be excited...... I’d persuaded hubby to take me to Manchester via Morecambe. His own fault as he made the mistake of telling me about the statue of Eric Morecambe that’s housed there! Bring me sunshine....... awesome! This is what life is all about. 

From Morecambe to Manchester and a great party tonight. I love my sister and her hubby. I love my hubby and his patience with me and all my crazy ideas! 

Now we get a few days of quality time, before the next stage of the road trip..... 

Living life xx

Don’t judge a book.....

Whilst I am always full of stories of all the good people in my life, my shining stars; I would of course be lying if I said there hasn’t been some negative people too. Thankfully very, very few, and they clearly have their own issues to work through. I can count on one hand the number of people I thought were friends that have unceremoniously removed themselves from my life, but I’m glad to see them go. I’ve enough drama without people adding to it through their own neurosis!

There have, however, been a few more interesting ones. People who, from day one, just became unable to look me in the eye. At first I was hurt by it, but I now realise that these are often the really sensitive ones who just can’t deal with it. In particular there are about four guys who I’d have classed as friends but who ignored me every time they saw me after I started venturing outdoors again. 

One by one, I’ve called each one of them out on it; refusing to let them away with it. In turn, each of them has admitted to having had previous experiences of losing someone to cancer and their inability to deal with my diagnosis. These big strapping men who’re always laughing and carrying on are the softies. They feel helpless and want to protect their friend. 

So if you find yourself in the same position as me, remember not to judge a book by its cover. Yes, a few will genuinely let you down,but the vast majority won’t and there’ll be a few that are just broken hearted for you but don’t know how to show it. 

So cut the negative ones from your life but don’t judge a book by its cover..... it might be hiding a depth you didn’t know was there Xxx