Morning all,
…or possibly, afternoon or evening, depending on when you get to this really.
A couple of weeks ago I wrote about the Facebook memory of finding out I needed an oophorectomy and APR, (permanent colostomy) 11 years prior.
I spoke of my shock and my horror at the mere thought of it.
It was such a horrendously traumatic time.
But why was it?
Why was I so repulsed by the idea?
Well, I suppose ignorance was the biggest factor.
Also, expectation and reality are very different.
A lived reality with a stoma is going to be very different from the anticipation and expectation. I can almost guarantee you it won’t be as bad as you thought. Note I said almost. It has been known for some to go a bit wrong. But mostly I’ve heard from other people that their life has been improved or saved even.
My expectation was that I would go home from the hospital, close the door and never step foot outside again. And on top of that - never see my friends again.
I really truly believed that. I honestly felt like I needed to protect myself and cut myself off.
Isn’t that a rather bleak, depressing and overly dramatic thought? But that’s exactly what I felt would be for the best for me.
What actually happened was I came home after 10 days in hospital. I sat in the garden enjoying the heatwave...
...I then unfortunately had to go back into hospital, a somewhat overly delayed return too, due to a home visiting stoma nurse failing to detect my bladder had broken, and I was retaining urine (not quite sure how they missed that one as I was telling them I felt very unwell, my blood pressure was dropping & temperature was rising and seeing as even the sweat from my arm pits smelt of urine it should have flagged something up one would have thought. Funnily enough I’m not a fan of the local stoma team, the last time I saw them was 6 weeks after my op, so nearly 11 years ago now)
...so, back into hospital to ‘fix’ the bladder issue, then came home with yet another bag, this time for urine collection. (My friend at the time joked that they thought I collected shoes not bags hahahah. I had a catheter wee bag attached to my leg for a while. And then had to self catheterise for a long while, with the hope that the bladder would recover. It did thankfully but I still have a few issues every now and then, but my goodness me, how lucky am I that it works!) :)
Right, so then I came home from hospital, for a second time, to stay, after that little interlude, now with two bags attached…and continued to enjoy the heatwave and went to the local cafe in the village for lunch.
I did not actually begin my self imposed hermit life at all. I was too busy being out enjoying myself (albeit it utterly fatigued and wiped out after).
I thank god/ the universe or whatever it was that just clicked in me.
From expected terror and turmoil to peace - actual peace - felt deep inside.
It never felt like something I created, it wasn’t a feeling I manifested, it felt other worldly. I felt empowered, calm, centred and full of joy, confidence, gratitude and an insatiable zest for life.
I felt safe (mostly because I had the love of Chris and the boys, admittedly).
It was the complete antithesis of what I had expected to feel.
Those two side by side photos above are of me in India a couple of years ago. One was taken whilst enjoying the sunshine, one was taken after I had overly enjoyed the sunshine and got a bit singed.
But it’s a great lighthearted visual representation of what I expected life to be and what life actually is like.
I do not hide at home (well, I do in pandemics). I go out and seize the day. I love my life. I don’t think of it as a stoma life, unless I’m writing about it. Day to day I don’t think about having a stoma at all. I mean, I don’t deny it’s existence, I can’t really, I hear it pretty often, prune juice has made me rather vocal, I’ll give you that. Hahahahaha.
This is just my life. In ways that the unbagged can’t appreciate fully, it is, at times better than it was pre surgery.
I wish I had known all of the positives before I had my operation. I wish I had known of one positive even.
Very rarely are colostomies or any stomas seen in a positive way. It’s only because of a handful of very happy, positive stoma users are singing it’s praises on Instagram that anyone gets any positive view point of them at all.
I wish it were different. I wish we celebrated the success they are more readily and freely. Like you would with other miracle medical advances like organ transplants and IVF. Wouldn’t it be amazing if we celebrated the achievements of medicine that stomas are.
We all know how wonderful and miraculous a successful heart transplant is or a beautiful bouncing IVF baby being born is, but you don’t get that positive hype and celebration with stomas.
The doctors themselves often refer to stoma surgery as the worst case scenario or the end of the road, the last resort or out of other options.
Why not sell it as a powerful positive!? We can keep you going because of this incredible invention! You can stay alive because of this amazing device!
Let’s stop giving stomas the shitty “it’s sadly the only option we’ve got left I’m afraid” build up.
I have (in non pandemics) an amazing life. I go where I want and do what I want. I’ve travelled the world. I’ve flown to Copenhagen for the day, and flown to Venice for lunch! Twice!
I very much enjoyed the days out, I am grateful I didn’t need to frantically locate a toilet for a poo either.
Poos happen, they are a natural function, but I never enjoyed their unpredictable appearance during my day.
I really very much enjoy changing my bag when I want to. When I feel like it.
(Yes, occasionally I have bag leaks, but then, so did my very broken bum, so I’m certainly no worse off).
The fact that someone thought about cutting open a body and sewing the bowel on the outside of the abdomen is nothing short of miraculous! Think about it? Before someone thought that up, people like me would almost certainly die because of recurrence.
I’m only hear because someone dreamed that it was possible. I think that is something to be celebrated. Not hidden away.
And we all know why it’s hidden and taboo. Poo is taboo! It’s really bloody annoying because being so restrained about talking about a perfectly normal bodily function can cost lives.
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After last week’s crafting excitement, with my fake cake, I took on an even bigger project.
I won’t be doing it again I can assure you. I saw these wonderful things advertised on Instagram. I messaged the company straight away to say I’d have one.
What I had failed to take on board is, I’m not actually arts and crafty at all!!
I worked so hard on this, it was a lot of effort (It comes in its natural MDF state) The rubbing down, priming it, painting it, rubbing it down in between coat after coat.
My god it was sooo much effort!
…was it worth it?….
YES!!
Look at my majestic giant bunny!
Probably slightly terrifying as well as being rather spectacular!
Never ever again though. I have new found respect for anyone that does their own decorating or furniture up cycling that’s for sure.
I thought I was coming down with flu, but it was just sniffles from all the dust, sanding in between coats, and all the rubbing down caused my joints to ache. I am way too feeble to do this sort of thing.
But I am pretty proud of Bonnie, but please don’t look too closely, she has a lot of paint drips. I don’t even want to talk about that bit, or my wild rage will begin to rise again. Hahahahaha
I started super early on my Easter home styling.
I love dressing up my home. But also, my covid jab was booked for Saturday, so I felt a bit of forward planning was in order.
I didn’t want to leave it till after my jab, just in case I was poorly with it.
So Easter came to our house a bit earlier than normal…
Any excuse to do something joyful, to look at beautiful things. No matter the season, I can find an occasion within it.
I really wanted to give the napkin bunny ears a go. They’re all over Pinterest and Instagram.
I should have known my skills have a very finite remit.
As you can see, I have my limitations. I did have to laugh, sadly my enthusiasm wasn’t rewarded.
I saw Chris hunched over at the table, I wondered what he was up to.
Well, he tried his hand at them too. It is safe to say that neither of us are capable of napkin bunny ears.
I even went to the trouble of buying hand blown quails eggs as decor. It just shows that throwing money at something is pointless unless you have actual talent to back it up!
FYI, quails eggs look cute but they are too small to make napkin bunny ears to start with.
I will settle for separate egg and napkins for my Easter table this year. I don’t think I have much choice really. :)
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I had a fantastic meeting with Bowel Research UK, I have quite a lot of projects in the pipeline with them, so that’s really exciting and something to look forward to.
It’s rewarding, it takes up time in my day and space in my head. All wonderful positives.
Dress from H&M, Boots from Jimmy Choo
Dressed to impress, but also to relieve boredom and enhance mood.
It never fails to lift my spirits to get dressed up and face on and see other humans.
Volunteering for BRUK has really helped me greatly.
We’ve got a lot of exciting projects coming up. It feels like we’re actually moving forward and the world is on the cusp of bursting into life.
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I gave a lot of thought to my special Saturday vaccine jab day outfit too.
I was heading into it with excitement and dread. Excitement that I will reduce the chances of serious covid illness or death by 100% (what’s not to love about that prospect?!?) but also, severe trepidation because of friends have been proper poorly from it, one in particular took the prize for worst reaction to a jab I’ve ever known. But she is a rather rare and special creature to start with.
The risk of reaction outweighs the danger of damage from covid. So it had to be done.
In 21 days from last Saturday I will be happy and ready to face the world again. And 12 weeks later, after, jab 2, I will be happy to go on holiday abroad, should the government deem to allow us.
(yes, in the uk the vaccine is given 12 weeks apart, it’s weird, but it meant they could give more people the first dose quicker).
I approached the vaccine much in the same way I approached Chemo and radiotherapy.
A certain amount of acceptance for the situation and the possible side effects.
But more than anything ~ hope for the best but plan for the worst.
I had stocked up on fresh ginger and ginger nut biscuits (I have heard of a lot of nausea from it etc), I stocked up on paracetamol and ibruprofen.
I bought cooling strips for possible fever.
I had everything I feel I needed to get through it.
My hope was I won’t need any of it at all. But as we don’t go to shops, and I was certainly not going to start now, it seemed like a good idea to prepare beforehand and stock up online.
I decided to future proof myself by getting my early weekday jobs for the following week done on Friday and Saturday morning.
I wasn’t wishing myself rough, but I was going to ease any stress I’d feel if I did happen to get a bit icky with it.
I had all the chores all under control. So if I had a tough time I could just chill and ride it out, if I didn’t get rough, which was my hope, I’d be 4 days ahead with chores. Everyone’s a winner! ;)
I believe in all vaccines, I am very pro vaccine. This one has lots of fear surrounding it, but knowing what I know of my last 20 years of flu jabs, some years you can feel beyond rotten, some years you feel offish and nothing more. But every year I feel safe and protected.
I’m so pro vaccine, infact I had one I didn’t need. I only found that out after I had it though.
Before we went to India, I had the Rabies vaccine. The doctor injected me, and I turned to her and said “ooooh I can play with all the puppies there now!”
She looked aghast, “errr, no, you can’t. It doesn’t prevent Rabies, it merely gives you 48 hours to seek medical assistance rather than the 24 hours without it!”
Ffs!!
Hahahaahahahahah
When was I ever going to be 48 hours, or even 24 hours away from medical care?!?
I was staying in 5 star hotels, in cities. I think the hospitals there were more than capable of sorting me out before the 24 hour mark.
I wasn’t going to be in the arse end of nowhere, battling my way through jungle to seek help.
Still, even so, I felt better knowing I was vaccinated.
Wearing AstraZeneca chic...
Cape/cardigan from Whistles, Trousers from Quiz, Vest top from Frank Usher. Shoes from Prada
I arrived at the vaccination centre 20 minutes early. But as there was no queue, I walked over to the entrance and said I’m a bit early, they said “no problem, what’s your name?”
And from that point I was in the place no longer than 1 minute, in that time I had been asked the pertinent questions, jabbed and back outside again.
It was something of a whirlwind.
It is incredibly well run, I can’t thank the staff and volunteers enough.
I was back to the car about 1 minute 30 seconds after I left it. I wasn’t terribly sure she’d actually jabbed me because I literally didn’t feel it. But I have 8 weekly B12 jabs and they sting like a ba*****! So nothing much compares to them, well apart from those blood thinning jabs you have injected into your tummy. They are truly the worst. So if you’ve had them you can cope with anything.
I am now jabbed, and in 21 days time, free!! Actually free!!
Yes, I know I can still catch it after that time, but the effect of covid on my body will be greatly reduced. And to be honest, that’s all I’m after.
I don’t expect to never be ill again in my life time. Even me, a germaphobe with health anxiety, knows that that is an unrealistic expectation.
But I don’t want to be ill, damaged or dead from a virus.
A friend of mine had “mild” covid, no hospital assistance required, but they have been left with serious health issues with blood clots amongst other things.
This is someone I know, not some stranger I’ve heard about.
We personally know people that have died of covid, we know people that have been in ICU. Covid isn’t a joke, a hoax or a conspiracy. Covid doesn’t give a **** if you think that way too, it’s just a virus seeking a host. I wasn’t prepared to offer myself as one.
I have largely been hiding for the last year, trying to outrun the chance of catching it until a vaccine was available. So yay on that score!
I can’t wait to get inside real shops come the 17th April. Shops reopen on the 12th April, but my 21 days are up on 17th.
My diary is getting filled with friends coming over (maximum of 6 of us at a time, in the garden as per government guidelines) and meals out, in restaurants and even holidays booked.
Hallelujah!!
Life is about to begin again!
(To those that don’t want the jab I say, ok, no problem, you do you xx).
I came home from my jab, after first going to collect our new bbq and gas from the shop we click and collected at, and then cut the grass.
We are now super ready to welcome guests. And it feels amazing! xx
I felt fine, absolutely fine actually, I was doubtful she’d actually jabbed me! Hahahahaha
I had a slight issue Sunday morning, as I woke up, wide awake, at 4.45, so I got up and did a bit of pottering around. It was only much later that realised the clocks had gone forward and it was actually 3.45am when I got up. Doh! Hahahahaha
I’d only ever get up at that sort of time if I was going on holiday.
But it was too late to do anything about it once I found out what the real time was.
Once Chris woke up too, I suggested that while I was still feeling fine, we put up our little marquee now.
The covid rule changed at midnight on Sunday. Which now means you can have up to 6 people in the garden (NOT in the house unless it’s to use the toilet).
We live in the UK which means the weather is not on our side for this new rule.
Luckily we bought the garden tent years ago for parties.
We are very lucky that we will be able to make definite plans, come rain or shine because we have somewhere warm and dry to sit.
That said, putting the thing up in a nigh on hurricane was not fun!! Hahahahaha.It was a colossal struggle. But we managed it, I say we, but Chris did most of the work I just held things in place mostly.
He did compliment me on my tent pegging skills as the side panel is still in place - little does he know, I banged them in so hard I doubt we’ll be able to get them out even if we want to! Hahahahaha
We are ready for you Rule of Six!
Lots of garden entertaining dates in the diary already.
Whether it was side effects from the jab or getting up too early, I felt a bit rough by the afternoon, nothing horrendous or anything, just a headache and a bit off.
We had a lazy afternoon in front of the telly. I tried one of those afternoon nap things, not my forte, so that didn’t happen.
But just restful and pleasant. I felt a bit of nausea, again, it’s not clear if it was side effects or lack of sleep, but either way I cured it with my old faithful chemo trick. Ginger nut biscuits!! (Cookies for my overseas visitors).
It works an absolute treat, they kept me going through all my treatment, I put on weight through chemo and radio and I have a sneaky suspicion it was ginger biscuits that did it! hahahahaha
I made myself stay up as long as possible, then I took some nurofen and paracetamol and went to bed.
I woke up in the morning refreshed and revived!
I think it’s safe to say I got away very lightly from my covid vaccine.
I’m sure lots of people did too. I am very grateful to be one of them.
But it all leads to my claim that expectation/anticipation and reality are very very different experiences.
This vaccine is so important. This vaccine will mean the difference between life and death…and the difference between holidays abroad or staycations. Hahahahaha
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I have a new plan for a crafting idea, although I don’t think it’s actually a craft thing. I’m not sure what it would be classified as.
I saw a video online of a woman making incredible ice cubes (balls, in this case) with flowers in them.
I really really wanted to give it a go…
How incredible do they look!!
I gave it my best shot. I think I will perfect it by the time I actually need them.
Due to missing out on family back in December, because of hastily updated lockdown restrictions, I’m arranging Christmas in June. June 26th to be precise.
So rather than re-staging Christmas Day, it will actually be a reconstruction of Boxing Day, which handily happens to be my favourite day of the season. It’s just more relaxed, and the food of cold meat, an assortment of pickles and mash is sooooo much more fun to prepare and eat than a full roast dinner.
I love it so much in fact, that for our wedding vows renewal 10 years ago, it was the meal we chose to serve. It actually works really well in summer actually.
Holly was a risk, but it paid off. Daffodils didn’t work at all.
I will need to work on my flower balls. But I do think they have potential. Well I hope they do anyway because I bought a freezer for the garage to make them in. Hahahahaha
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We are enjoying a bit of sunshine here, and that combined with seeing family and friends, oh heaven, absolute heaven.
I’ve been practicing my Easter outdoors table, and pretty tables in general.
We’ve made a good start of the rule of six, garden visiting. So far we’ve had my mum and dad over for a cuppa, on day 1.
On day 2 we had a bbq and Ben, Kaitlyn and their friend Ally.
Dress from M&S, Shoes from Hermes
The Hanover rechargeable lamps from Neptune are a must for outside entertaining. As is the electric bug killer as I am a veritable smorgasbord to insects.
As before, I am very good at implimenting covid hygiene safety. God, I’m all about fun aren’t it!? Hahahahaha.
But let’s be clear, the danger of spreading the virus is still very much present. And we need to suppress that spread to prevent mutations taking place as much as we can.
So, I anti back the **** out of everything, I serve food separately, so there’s no sharing and I provide individual hand sanitizer for each person.
It was our first official gathering of our new freedom. I decided to make an effort with my table-scaping. As I do.
Do you know what? Not one of the people round the table mentioned it.
I broke first and was like “uh-huh-hum (that’s me dramatically clearly my throat to start), did you like my table?”
‘Oh yeah, it’s lovely!!’ Comes the responses.
“well why didn’t you say anything?”
”dunno, we just kind of expect it of you really, so it matched expectation…”
And that ladies and gentlemen is my lived reality!!
…and on that note I will bid you good night!
xxx
Wishing the UK a very happy and healthy Rule of six.
And happy days in general to everyone else. Xx