Hello there, good morning….right, deep breath…firstly, are you okay?
(I’m going full Holly today! hahahahah).
All joking aside, I haven’t been okay myself. I have spent the last few weeks floored by the power others have over my mental wellbeing, my confidence and positivity about my life, my stoma life…the two are of course intrinsically linked.
I’m bouncing back though, slowly but surely, I always do, but I have been destabilised by the commotion with my stoma supplies.
I’m not sitting in a corner rocking, nor have I been at any point. But I did feel fragile and discombobulated.
I think the worst part, wasn’t in fact being turned down for the stoma supplies I ordered, let’s face it, cuts are being made throughout the NHS (I’ve had messages from friends saying that they have been denied vital medical services and supplies too, from amputated leg protective coverings, to incontinence pads for the terminally ill. It’s all utterly depressing and devoid of any humanity.
If you can’t get thickly blocked ears syringed for free anymore, just imagine what else is being blocked) but it was more the fact that when I tried to buy some, that was also blocked at every turn too.
*Stoma supplies are available on Amazon, I am aware, I’ve had a look, but not the actual products I use, which means I could end up spending money on inferior quality ones, and take the risk of a skin flare up due to changing brands.
The ones I use are not available to purchase through the supply company I order through.
I was told quite plainly, and somewhat abruptly that they can’t sell anything they don’t manufacture. Simple as that, no further information or assistance given.
It was at that point I felt trapped in my stoma life. For the first time in my 13 years of stoma-ing I felt abandoned, alone and to be honest, afraid. And it really annoyed me to feel like I had maybe been living a lie of confidence and positivity of having a stoma.
I know I’m a weirdo, for many reasons, but I really have always seen my colostomy as better than having a bum hole.
When my brain reset after my surgery it went to the extreme of stoma positivity, and I know that my stoma happiness pisses some people off, because they just can’t understand how or why I feel that way.
But I have very much loved and enjoyed the convenience of my bag life. I really find it far more convenient than it was before.
I had many accidents with my bowels, I know the feeling of being a prisoner to potential accidents.
Although, I can be a terrible human being really, as I have rather smuggly laughed at the misfortune of friends and family who have been “caught short” with their old fashioned plumbing recently.
Oh how I’ve giggled when hearing stories of near misses, and actual misses, listening to the horror stories, as I sat back basking in the resplendent glory in a position of the power of the bag.
For 13 years I felt confident and at peace.
And that all came crashing down when I discovered how bloody hard it is to access the stoma supplies I use, without a prescription.
Because in actual fact I am a confidence phoney.
My confidence with a stoma was shattered by one piece of the puzzle being taken away.
I am simply only as confident as the supply chain allows.
I suppose it’s possible that what I was feeling wasn’t confidence, but was in-fact - arrogance.
I’m slowly getting back to my normal self. Thankfully nothing keeps me down too long. I guess that’s the gift of a flibbertigibbety brain for you.
I take things hard, but I recover quickly.
But it has really opened my eyes and heart to how others may feel about their stoma.
It was a very humbling experience. I found myself thinking very negatively about my stoma life, the same negativity that some people with stomas feel in general.
I have always understood why people never settled in comfortably with a stoma before, I’m not an idiot, I get that it’s a huge shock to the system. It’s less than ideal. No one grows up thinking ‘oh one day I will be complete and shit in a bag!!’
But I simply didn’t feel that it was a negative in my experience. I couldn’t find many downsides to be honest. I had to give up silk and sateen dresses, that was about it. Not exactly life changing stuff.
Until now, where the very supplies I used to feel confident, safe and happy, are under threat.
(I have always empathised with those that have never felt comfortable with their stoma. I have never thought that just because I felt confident and happy with mine that anyone else should feel the same, and vice-versa. No one should be insisting that I should feel the same way they do.
We all come to terms with stoma life at different time frames and with different degrees of acceptance).
I feel slightly better about everything at the moment.
I did get some good news from the head of prescriptions at my GP surgery, who agreed to my request for the full amount of sprays that I asked for. But in a phone conversation with the stoma company who supply them, the chap said it had been - agreed…for now…
So there will always be the possibility that they will cut them off again. And I will be back to worry and fear.
But I’m ready this time. I am resilient. I will always find a way.
I do feel that if NHS supplies are going to be cut, then shops should start being able to stock plentiful quantities of competitively priced stoma items.
It’s not as simple as saying just use less of them, make them last longer!
I use what I use. I use what I feel is right for me. I’m not wilfully wasteful.
I use what I need to, I never just pull my stoma bag off, I spray it until the adhesive peels off freely. I have very sensitive skin, so if I pull the bag off without soaking the adhesive layer it inflames the skin.
I’d end up needing medical attention, so really there would be no saving valuable cash and resources. It would actually add to the cost of keeping me going.
I’m incredibly cost effective as it happens. The chap from the stoma company mentioned that I should be seeing the stoma nurse team at least, at least once a year.
Well, I haven’t seen them since 6 to 8 weeks after my surgery. Not once in the 13 years of stoma owning.
So that’s at the very least the cost of 13 appointments I haven’t had saved.
I don’t need any help. I am incredibly self contained. If I can just be left to get on with it.
Fingers crossed.
Anyway, back to what I do know, dressing well with a stoma (I’m not saying for a single second that anyone should like how I dress. I am saying I do, and that’s all that matters).
:)
Dress to impress…yourself. :)
Dress from Primark, Shoes from Dior, Bag from Chloe
…like a chameleon…
manger pour trois hahaha
We headed into London for a paella with our friend a couple of weekends ago. Arros QD is still the best place for paella we’ve ever been. I always recommend good food. Food is one of my favourite hobbies after all.
I can’t and don’t complain about my life, because it is an exceptionally good existence. I am loved, I love, I get to do whatever I choose, whenever I choose to. So obviously I am very happy and grateful. I am very lucky.
My upset with supplies wasn’t about my life exactly, it was about the fear of living my life easily and comfortably in the knowledge I can change my stoma bag whenever I want or need to, being taken away.
If I don’t have the supplies I won’t be able to live as freely as I do.
…that said, It’s not all glamour and glitz, sometimes it’s tabards and tea making…
…and I love it! :)
I had 2 meetings back to back on Wednesday, one online, one in person in London.
So rather cleverly (if I do say so myself) I went into London early, found a lovely spot in a gardens opposite The Royal College of Surgeons headquarters, where meeting two was taking place, and joined meeting one on my phone in the sunshine.
It was a glorious day, we’re having the season’s good weather at the moment.
Dress from Nicole Farhi, Shoes from Dior, Bag from Goyard.
With both meetings complete I headed to the west end for a bit of retail therapy. I tried on 8 dresses in Zara, all abysmal failures. You can’t win them all, and that particular day I won none.
I then mooched around town until Chris arrived in the evening for dinner at Chutney Mary.
Literally living the dream, no irony or sarcasm, just living my best life. :)
The weather is extremely hot (for the UK. I know people around the world must laugh at our inability to cope with any sort of weather variance, be it too hot or too cold. But we’re just not geared up for extremes. Very few have air con here, so when it gets super hot we tend to just melt, joyfully for the first few days, but becoming more miserable as time goes on. ;)
Top from Phase Eight, Shorts from Tesco, Shoes from Hermes
All I have to do in hot weather is wear as little clothing as possible, stay in the shade, and drink the same amount of fluids as anyone with functioning bottoms (mine is purely decorative at this point).
Again, I’m very fortunate because some people with stomas have terrible trouble with staying hydrated in general, therefore need to take great care on very hot days and nights.
Which is another reason why I have always felt lucky that I have a low down colostomy. It doesn’t really make any difference to my overall health and well being.
So I have all of the convenience and none of the hassle.
We saw a sign for London Open Gardens a few weeks ago and I really wanted to go.
Not necessarily for the plants, but I’m a nosy b**** and just wanted to go in private gardens for a nose round.
It was actually really well organised, the gardens were lovely, and even better than that, there was food, really really good food in each…and cream teas ~ supplied by Mosimanns in Belgrave Square Gardens.
It was £20 a person for a weekend garden viewing ticket, which allowed entry into some stunning gardens.
We chose to do just five gardens, on the Saturday only, so we made the cost of the ticket back (I’m a cheap skate, what can I tell you), we didn’t want to over heat in the scorching sun…and then nipped into Harrods for their air conditioning & shopping, and a bit more food. :)
Dress from Ralph Lauren, Shoes and Bag from Dior.
There was music and things to entertain, there were birds of prey on display at the gardens at Lincoln’s Inn Fields, where we met this little chap, Alfie…which I only just got the joke as I typed his name, Owl-fy. I get it now!
It was fantastic! I’m so glad we did it.
But after a long day of nosing around in the sunshine we headed to Harrods to make the most of their air con.
How has a lady such as myself, managed two very long walking round London days with my notoriously rubbly together thighs, in such extreme heat? Well, I very cleverly invested in some anti chafe shorts from Snag Tights and they are dreamy!!
Do yourself the biggest favour and get some. If you were lucky enough to be born with the thigh gap gene , you have my admiration and respect. If like me you were born with the rubbiest thighs in the world get some anti chafe shorts.
It’s been life changing. :)
We headed to the air conned basement for cheese and hot bread.
Yes, more food. I find food to be a source of great joy.
I had issues with food since I was about 14 - 36. I’d binge and starve - both were punishments for my confused low self esteemed brain. It was torture actually.
Meeting Chris healed a lot of that internal pain, but actually being diagnosed with cancer cured my cycle of starvation and bingeing.
My brain reset on many levels when I had my surgery. It reframed my life in great clarity of what my worth was, what my values were, what meant the most to me and to the people around me that love me.
I value my body far more now, even though it’s bigger and baggier than it was when I was younger and loathed it, and punished it.
When I look in the mirror I am happy and at peace with what I see, bag and all.
So yes, cancer is an absolute ****, but survival has freed me.
I have so many reasons to be grateful.
I just wish others could find that peace in themselves, without the nasty bastard cancer bit. Xx
Sunday was exactly that, Sun day. Another absolute scorcher.
We decided to go sit in a field with a picnic and watch Polo, at Cambridge Polo club. It’s very informal, very casual and very very relaxing.
We packed a lunch…I love picnics, I have a vast picnic collection. But a friend gave me some Fortnum and Mason gift vouchers last year, so I upgraded my basket game!
So we used the new set for the first time, and filled it with things we love.
One of which is Greggs! Hahahahah.
You can take the girl out of Romford!… Hahaha :)
Shirt from Gap, Vest top and Shorts from Tesco, Shoes from Valentino, Bag from Dior.
A day watching Polo, eating Greggs vegan sausage rolls, with Fortnums Chilli Lilli, 0.0 beer and other people’s free roaming dogs…heaven, absolute heaven. Xx
Definitely would recommend, but more than anything I recommend doing things that bring you joy in general.
We are here for such a fleetingly short time. Don’t waste a second. Xx
I took myself off for a walk yesterday. I realised that I hadn’t done one since I had those moles removed from my foot and leg in March. I’d just got out of the habit, and I forgot how much I enjoyed them.
It didn’t cost a single penny, but it felt fantastic!
Remember to do more of what makes you happy. :)
Xx
Ps,
On the subject of wanting greater access to stoma supplies, Stoma Babe, Holly April, has started a campaign to get emergency stoma kits stocked in pharmacies and supermarkets as standard practice.
Her idea and campaign is more about the fact that someone with a stoma could be caught short whilst out and about, and the access to stoma kits would be a huge benefit for all stoma users, even for the ones that won’t ever need to use it, just being there available is life enhancing and freeing.
I’d benefit from that too as I have been known on many occasions to forget my stoma kit at home, but, it’d also help people like me who may not get their full delivery of stoma supplies at some stage.
Access to freely available supplies to buy would be a huge improvement to the lives of all stoma users. And a huge step forward towards normalising stoma use.
Follow Holly (Stoma Babe) on social media, she’s a force of nature. Xx