Grateful for so much

[Differentforgirls]

Hello lovely ladies.

I haven’t posted on here before but read & comment on your posts if I feel I can help in anyway.

I was diagnosed with high grade serous stage 3b in Feb 2018 at 51 years old.

I feel lucky to have had 2 surgeries - first Feb 2018 & 2nd with the fabulous Prof CF Jan 2020. Chemo followed both surgeries. I have been taking Niraparib for a few months now. Started on 300mg ( which my body decided it didn’t like at all & I was throwing up a lot as well as many other side effects). Dose lowered to 200mg which I also found intolerable. Now in 100mg which is much better ☺️

I struggled psychologically for over a year after frontline chemo finished. Ended up going on the Macmillan run HOPE course in Oct 2018 which really helped ( highly recommended).

I was also introduced ( by a good friend who also happens to be a CNS for breast cancer) to the article written by psychologist Dr Peter Harvey called ‘After the treatment finished....then what?’ It also helped me & I still refer to it at times.

I was prescribed Fluoxetine by my GP in July 2019. After the initial strange few weeks, this has made a huge difference to make me feel more like me ☺️ I’m still taking it.

Just last week I saw my oncologist as I was concerned about ascites ( my abdomen was so bloated’ painful & hard ). Thankfully it was just an excessive amount of wind 💨 causing bloating, pain & discomfort. Prof CF did say I had a lot of adhesions she sorted during my surgery in Jan 2020 but I’m obviously prone to them! Hey ho!

I understand we have our own stories which are different in many ways but also so similar. I’m so happy to have found this group as it brings comfort in knowing I’m not alone in the way I feel ( both physically & mentally).

We are all in this together & it feels good knowing we can find support from those who understand.

Please try & take one day at a time & be kind to yourselves.

With love fellow Teal ladies,

Lynne xx

[TealSong]

Hi Lynne.

I've also struggled psychologically after the cancer diagnosis and found Peter Harvey's article hit the nail on the head. This site is so helpful for communicating with others who understand, I'm really grateful for it. Although my treatment was surgery alone, I still read the posts and am sending my love to you all. Xx

[Differentforgirls in reply to TealSong]

It’s such a rollercoaster ride isn’t it? Take care xx

[TealSong in reply to Differentforgirls]

It really is! It helps so much to share worries on here though. All the best xx

[Differentforgirls in reply to TealSong]

You too xx

[Sashay2020]

Lynne, thank you for your post and especially for mentioning the Peter Harvey article. I finished chemo last week and it is just what I needed to read. 🙏🏽 My doctor wants to start me on Niraparib if my scans and CA125 come back clear in three weeks. I know I don’t want to start on 300 milligrams and plan to lose a few pounds so I will be under 75 kilos which means the starting dose would be 200 milligrams, if I am correct. I will discuss dosage with my doctor. Anyway, thanks again for your uplifting post.

Best wishes from Louisiana

Sashay

[Differentforgirls in reply to Sashay2020]

Bless you. It’s so tough at times but the support & understanding from others helps.

I was told by my oncologist ( last week) she doesn’t start anyone on 300mg anymore as it’s more often than not too harsh.

Really hope your scan & CA125 results are good.

Best wishes for the next phase in your treatment Sashay. Xx

[Sashay2020 in reply to Differentforgirls]

Thank you!

Sashay

[Lyndy]

Hello

It’s always interesting to find out about each other’s stories.... thanks for sharing! I also did the Hope course.... I hated it at the time but now I feel it was useful but I was in a bad head space at the time. I think we all struggle with the after effects xx

[Differentforgirls in reply to Lyndy]

Virtual hugs Lyndy xx

[Eleybelly]

Thanks so much for your post, I really needed to read this today as I’m struggling post treatment too. It’s the thing they don’t tell you about isn’t it? Off to look up the ‘After treatment’ article and the Hope course.

Wishing you well and thanks again

Kate xx

[Differentforgirls in reply to Eleybelly]

I’m glad my post has given you info to help you after treatment.

I think when first diagnosed you go into shock, then focus on getting through treatment. During treatment there’s all that support from chemo nurses & drs then when it finishes it can catch up with you. I did have post traumatic stress disorder.

On the positive side, with help, I’m much more me now. It just took time.

Be kind to yourself. You’ve been through a lot Kate.

Take care Lynne xx

[Eriksendi]

I still struggle psychologically, certain things just seem to bring everything flooding back and I long for my good health that I had before this horrible disease. My husband too gets emotional at certain things, he never did before. I think these are the things they definitely don’t tell you about.

I did the HOPE course it was great and we formed our own supper club and used to go to each other’s houses for supper once a month - a great idea.

Believe me - I am incredibly grateful I’m still here to tell the tale, as they say, but on certain days those what if ....... thoughts creep back in.

Stay strong everyone - we have this wonderful group and virtual friends that understand and support us x x

[Jacky5]

Thanks so much for posting. I can identify with much of what you're saying. Ive has first line chemo and surgery and now taking a parp. Had been feeling quite positive for a few months. Currently in a bit of a low phase so thanks for the advice re the After Treatment article.

Best of luck with your maintenance treatment.

L.x

[Barmycharm]

Hi Lynne

Thanks so much for posting this, I too am struggling emotionally since having my debaulking surgery last year and then emergency bowel surgery because of scar tissue in June this year. It’s hard to share it with anyone because everyone assumed your over it once you’re through the initial surgery recovery but the scars go much deeper in your mind don’t they?! I do try and stay positive but also sometimes feel the strain of having to put on a brave face for everyone around me rather than actually being able to voice my fears and be listened to.

I’m going to read the article now, it sounds just what I need.

Good luck ongoing and love and hugs to all the teal ladies on here

Xxx

[bamboo89 in reply to Barmycharm]

What you said about other people not understanding because they think you're over the worst (or even 'cured' as someone said to me two years ago) is why this site is so valuable. It is somewhere you can say what you feel and all will understand, cos we're all in the same boat...

Miriam

[delia2]

Thanks for your post. It’s a great combination of positivity and realism and I appreciate the reading suggestions. Xx

[bamboo89]

A lovely and uplifting post, thanks - I'd like to take a look at the After Treatment article too, never heard of it...

Miriam