I didn’t ‘get it’: Hi lovelies I’ve not been on... - My Ovacome

My Ovacome

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I didn’t ‘get it’

23 Replies

Hi lovelies

I’ve not been on here much recently, busy living, working, holidaying and enjoying 14 months into 1st line NED. Ca125 was 12 last week, and generally feeling great.

I just wanted to share this link to an article I read that really resonated with me. As a nurse of 39 years, many of those in Oncology Nursing, and also having stage 3 OC it hit the spot. Thought I’d share: positiveoutlooksblog.com/20...

Lots of love and hugs, Marian xxxxx

23 Replies
Lindaura profile image
Lindaura

Thanks!

That did cheer me up. I am heading for my first 3 month check up post first-line. I remember when I did not realise what fist line meant and there could be many more lines in my future.

Ugh!

But feel fine,

Yours in Bath, England,

Laura

in reply toLindaura

Hi Neighbour, I’m next door in Bristol (Keynsham)!!! Best of luck with your 3 month check 🤞x

Lindaura profile image
Lindaura in reply to

Wow,

Hi neighbour. Were you treated in Bath or Bristol?

I had pretty great treatment at the RUH.

18 months is heartening!

How long did it take you to feel normal "ish"?

X

Laura

in reply toLindaura

I was treated at St Michaels in Bristol. I think RUH sand St Michaels work closely together.

To be honest Laura, it took a while, and even now I get my tired days still. But I’m working, and living a pretty normal life now (despite a stoma). I eat healthy and walk 3-4 miles every day. I decided to surround myself with people that make me laugh which I think is the best medicine. I’d be lying if I said I don’t get anxious or down because I do from time to time, but I am a great believer in ‘the now’..... that’s all anyone has and I make it count. Stay positive, there is no reason why you won’t do well too. If you ever fancy a coffee and chat let me know.

Marian xx

Lindaura profile image
Lindaura in reply to

Thanks, Marian.

I am socialising a lot more than I did before I became ill, so meeting up might be nice.

I too am eating carefully, although I though I was before and still got cancer!

And beginning to walk for short lengths each day.

I am 71 years young and had convinced myself I was 26 years old, until the OV levelled me.

Meet up in Bath or Keynsham?

Next week?

I will follow you for private messaging.

Yours in Bath,

Laura

Yoshbosh profile image
Yoshbosh

😭 This almost precisely sums it up for me. Sometimes articles like this don’t resonate, but the author’s perspective on how it feels hits the nail on the head for me. I am actually sitting here crying, and trying to hide it from my 6 year old, who is watching crappy cartoons and waiting for me to get the football out so that she can play in the garden. Normal life continues.

Vicki xxx

in reply toYoshbosh

It’s really profound isn’t it Vicki? Sorry to make you cry, I hope that you got that football out and normal service has resumed. Hugs xxx

Coldethyl profile image
Coldethyl

I’d read this before on twitter but it’s still one of the best pieces I’ve read on how it actually feels to be our side of the table - I watched the Cancee Hospital episode on breast cancer recently and one of the ladies turned out to be a GP - I imagine that many times in her career she’d have had to deal with patients going through similar situation and yet you see when it was happening to her, that she was as all over the place emotionally as the rest of us - I know the rational side of my brain switched off at diagnosis and most of the time , I’m living in an emotional maelstrom x

in reply toColdethyl

It’s so true, with all the empathy in the world you can never truly be in a cancer patients head until you are one yourself xx

Welshandproud profile image
Welshandproud

What a brilliant post xx

ShazD profile image
ShazD

That is a very accurate account of how a cancer patient feels. No matter how many times you sit on the other side of the table as a healthcare professional you can never be prepared if it ever happens to you. Thank you for sharing this.

Can I ask how you coped with patients questions when you returned to work? I have chosen not to wear my wig and am wearing a hat. I have started back at work and the first patient I saw was a gynae pt pre chemo with the same diagnosis as me with a dehisced wound. She took one look at me and said ‘ I hope I am not going to look like that. All skinny and no hair’. I managed to change her focus to the wound and answer her questions about chemo. I decided it was too soon to be seeing pts after that so have gone back to paperwork a couple of days a week but I am going to have to face the patients in the next few weeks. I felt very positive and confident going in but what she said about my appearance did knock me back a bit.

Hi Shaz

So many nurses on here with OC, im thinking of setting up a nurses with cancer FB page!!

That sounds a very difficult patient experience for you, not great for confidence building!! It’s a tough thing returning to work, but when you are having to sympathise, empathise and put others first it can be a challenge after a cancer diagnosis that’s for sure. Be kind to yourself and NEVER put yourself last EVER again xx

I’m a Clinical Nurse Specialist (CNS) in Biologics. Since returning to work I’ve been doing more management stuff but still see patients quite a bit. I felt very self conscious with my wig and skinny appearance at first. However being 14 months post chemo now I have hair 😀👏and have put a little bit of weight back on, so I guess I now look more ‘normal’, with that my confidence has grown massively and I no longer think about how people are pereceiving me. A colleague told me the other day that I look so healthy that she’s all but forgotten what I’ve been through..... I haven’t though!!

If you need a fellow nursie ear, pm me anytime, I ‘get it’

Love Marian xxx

LittleSan profile image
LittleSan in reply to

When I first came on here, I was amazed how many health care professionals were on. I was an OT. Xx

CJR99 profile image
CJR99

Wow!xxxI’m actually lost for words...thank you so very much for sharing this🤗

Solange profile image
Solange

Thank you, Marian, for sharing this post. What a fascinating read. I could relate to so much of what the author said and felt. My husband even read the account. I'd left it open as I had to get on with lunch but hadn't got back to finish reading it. He went to look at something or other and saw it and he was very impressed with it. 🤔 I think it made him understand more how I feel sometimes and maybe look at things with a different perspective. I could never have told him so well in my own words. Love, Solange 😊

in reply toSolange

That’s a sweet story x

Katiebairdie profile image
Katiebairdie

What a great article, thanks for sharing.

Thanks for,sharing. It was a brilliant blog. I am also a nurse but worked more in tropical medicine so my apologies go to those with Leprosy and neuropathy. I also realised how I didn’t get what life was like with a stoma and I have to stay that seems to be the same. Book learning only takes you so,far. My biggest complaint with the stoma nurse is when I complained about the bag seal bursting she suggested laxatives as the solution since it is less likely to do that when you have diarrhoea! Silly me, I wanted a better option not a worse one.

in reply toPhillipandBettykid

Haha, sorry but your last comment about the stoma made me laugh. I have a stoma too so really understand xx

ShropshireJo profile image
ShropshireJo

I’ve just read the article. Thank you for sharing it. She writes so clearly. Jo 🌸🌻🌹🌼🌺

Clearcell-lady profile image
Clearcell-lady

Excellent write-up of what exactly each and everyone of us goes through...said simply and right from the heart. Thanks for sharing. X

Maxjor profile image
Maxjor

Made me cry. Its like someone finally understands! Wow--there was a movie with William Hurt who also was an oncologist (not nurse) and his experience when he got cancer. Reminds me of when he "got it" but I didn't have a cancer diagnosis then so this hits home much more. Thank you for sharing. I think I will be more proud of how I am handling things today! oxoxox

grammeejill profile image
grammeejill

Thank you! I loved this. So much of what it said resonated with me, especially about telling people. It took me 3 months after diagnoses, debunking and 2 chemos to share the news.

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