Steep Learning Curve

[MountainSeeker]

Hi All

Four months ago, I was diagnosed with advanced Ovarian Cancer. I have had surgery and am now in the middle of chemotherapy.

I did not know anything about cancer when I was diagnosed. To start with managing the shock and fear was all I could do. But as time is passing I find that I want to understand what has happened to my body with the development of cancer, and what is happening to my body under the chemotherapy treatment. I have started to read. Luckily, I found a really helpful book, informative and pitched at a good level. It is called Rebel Cell by Kat Arney. At times it is challenging to read as it relates keenly to what has happened / is happening to me.

I wanted to ask if anyone else has found themselves looking for helpful books, articles or papers on Cancer, Ovarian Cancer and associated treatments. And whether there are recommendations you can make?

I am also curious as to whether any of you would be interested in starting a book or journal club, to learn together in conversation about what we have read and our experiences.

Warm wishes, Jo

[Lara1]

Hi MountainSeeker,

I’m sorry you find yourself on this journey.. it seems we are going through a similar experience. I got diagnosed in June with advanced OC (hgsoc stage 3b, BRCA and HRD negative), went through surgery and started chemo last week. I am too starting to look for answers after the initial shock. After doing a bit of research online I came across this article:

link.springer.com/content/p...

I’d like to continue searching for answers and it would be great to share insights, so count me in. Take care, Laura

[Sunsetime in reply to Lara1]

Interesting research, took me a few times to understand it , think I got there in the end. Thank you for sharing. X

[MountainSeeker in reply to Lara1]

Hi Laura, Sheila, Kjpip & Candy

Thank you for your responses and for wanting to be counted in. I'd be interested in your thoughts on how we make this happen.

I have a few ideas. I had in mind that it would be online. How do you find Zoom? Depending on where people live, perhaps it would be possible to meet in person occasionally but that is probably for the future. We could use here as a place to organise, at least initially, which might mean sharing emails on this forum, or I could learn how to set up a new dedicated email account that anyone interested now, or in the future, could be directed to. Any other ideas on how to organise ourselves are welcome? I guess we might arrange an initial meeting to discuss what we want.

One of the team at Ovacome suggested I post here. I could run this by them and see what advice or related experience they have of setting up book clubs or similar.

Laura, thank you for the paper. I will take my time with it.

Sopsinger, thank you for your thoughts. One of the benefits of a group of people is that we can pool knowledge and experience, between us hopefully we can navigate sourcing and understanding the reading. We could (random thought) ask our medical teams if they would like to contribute ideas about what to read or support our learning.

Hoping today is a better day for you all.

Warm wishes, Jo

[Lara1 in reply to MountainSeeker]

Hi Jo,

Having an initial zoom call to brainstorm goals and organize ourselves would be great. I don’t live in the UK so meeting in person would be less easy for me but not impossible.

With regards to the reading material, there are so many scientific journals and platforms nowadays that it’s quite easy to find research articles online. We can also try contacting the authors in case of questions or to get recommendations for further reading. It really depends on what our goals will be.

I would start by agreeing on a potential date for the call and then take it from there. What do you think? Laura

[MountainSeeker in reply to Lara1]

Hi Laura, Sheila, Kjpip & Candy

Thanks Laura. Yes, lets find a time to have an initial meeting. I am not working at the moment but have hospital appointments & chemo and commitments to friends.

The following are possible for me... Friday morning 6th, Saturday 7th, Monday 9th, Wednesday afternoon 11th, Friday 13th...

What availability do you all have? Lets see if we can find a time in common.

Warm wishes, Jo

[Sunsetime in reply to MountainSeeker]

Hi Jo , thanks for getting back in touch. I can do Monday 9th Wednesday 11th possibility 6th .

[Lara1 in reply to MountainSeeker]

Hi, I’m available on all dates except Sat 7th and Mon 9th. Thanks!

[MountainSeeker in reply to Lara1]

Looks like next Wednesday 11th in the afternoon might work. I'll ping a separate message to Kjpip and Candy and see if it might work for them.

Warm wishes, Jo

[MountainSeeker in reply to MountainSeeker]

Hi Candy, Sheila and Laura (and Kjpip)

I am not sure how this communication system works but am hoping you all get this message and any notifications.

Looks like four of us can meet next Wednesday afternoon. What time would work? 2pm?

I can set up a Zoom meeting, however the site suggests not sharing contact information here. Thoughts about how to manage this? We could all email Anna at Ovacome and ask for our emails to be shared with one another via her? I'd be happy to approach her about this. Other ideas welcome.

Warm wishes, Jo

[Sunsetime in reply to MountainSeeker]

Thanks Jo , Wednesday at 2pm works for me and yes happy to share email via Anna if that’s appropriate with ovacome.

[OvacomeSupport Partner My Ovacome Team in reply to MountainSeeker]

Dear Mountainseeker,

Thank you for your message. How wonderful that a group of you are keen to get together online. There are two options as to how you can get in touch with each other:

1) One person could send a direct message on here to each of the others who are wanting to join to gather email addresses for your Zoom meeting. This can be done via the 'chat' function in the top right hand corner of your screen. You just need to enter the forum username of the person you would like to message.

2) Anybody wanting to join can email [e-mail] and we can then connect you with each other.

We would like to advise all members never to post personal details, including email addresses, on any forum chats, as these are then publicly available.

I hope that helps. If you have any further questions, do let us know.

Kind regards,

Alice - Ovacome

[MountainSeeker in reply to OvacomeSupport]

Thank you Alice for picking this up. Candy, Laura, Kjpip & Sheila shall we connect via the Chat? I'll have a go. Jo

[candyapplegrey]

Great idea. Count me in. Have looked at some books but now got mind-fog and cannot remember their names ... will write when I remember. I've heard of Rebel Cell. Will check it out. xx

[MountainSeeker in reply to candyapplegrey]

Hi Candy

A few of us are available to meet next Wednesday 11th in the afternoon to have an initial conversation about setting up a Book Club, would that work for you?

Warm wishes Jo

[candyapplegrey in reply to MountainSeeker]

Yup. I can do that. Admire your proactivity! xx

[Kjpip]

I've just ordered this book! I think sharing info through a book club is a great idea 😀

[MountainSeeker in reply to Kjpip]

Hi Kjpip

A few of us are available to meet next Wednesday 11th in the afternoon to have an initial conversation about setting up a Book Club, would that work for you?

Warm wishes Jo

[Kjpip in reply to MountainSeeker]

Hi Jo,So sorry but I'm busy next Wednesday. I hope you have a good meet up, and if you could let me know the outcome or when the next meeting is I'll try and be there for sure! 😊

[MountainSeeker in reply to Kjpip]

Great, will do.

[Sunsetime]

good idea, count me in . I’m not the best at science, but would like to learn more about what’s happening inside, I spend a lot of time worrying, and find channeling my thoughts into research helps reduce my anxiety.

Sheila

[SopSinger]

I was an information specialist in the pharmaceutical industry when I was diagnosed, so searching the literature was second nature to me. It is important to know how to search effectively and even more to discern the quality or reliability of the sources that you find, so I would hesitate to recommend that everyone do it. However, if you recognise that there are good and not-so-good sources out there and stick to reliable ones like Ovacome, Macmillan, Pubmed etc. you should be able to find information that is accurate. Whether it is also comprehensible to a lay person is another question!