Scared of future: new to this forum. Diagnosed... - My Ovacome

My Ovacome

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Scared of future

Crumble18 profile image
38 Replies

new to this forum. Diagnosed with ovarian cancer in April. Had first round of chemo and debulking surgery in July. Starting next round of chemo. Just so scared.

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Crumble18
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38 Replies
Lyndy profile image
Lyndy

I know you are scared....all of us have that....when I was first diagnosed I used to wake in the night thinking ‘I’m gonna die’ over and over. Three years on I still think like that from time to time but I don’t obsess about it. A lot of the time I think about other stuff: work, family, fun!

The change was gradual....getting this diagnosis is such a hit.

Please try to find some support for yourself... if this forum works for you great but you may also want a counsellor or support group too. Just that sense that others understand and really know what you are thinking does help...sending you a hug xx

Crumble18 profile image
Crumble18 in reply to Lyndy

thank you. So many friends now no longer contact me. I feel they see me just as a cancer sufferer now and not me. it is so hard

Nancy222 profile image
Nancy222 in reply to Crumble18

Everyone is adjusting to your diagnosis. It could be that they don't want to disturb you, that they don't know what to say. Try calling them if you can and if you want to.

Crumble18 profile image
Crumble18 in reply to Nancy222

I will try

Lily-Anne profile image
Lily-Anne

What are you scared of most?

The unknown is a scary place but front line treatment is a good place to be. It can be the gateway to cure or remission. It’s definitely a better place than where you were undiagnosed

What has your oncologist told you? Where are you being treated?

LA xx

Crumble18 profile image
Crumble18 in reply to Lily-Anne

my oncologist is very positive and very supportive but I am scared of not seeing my family growing up and feel guilty for making them sad. I was ok until I had the surgery. 11 more months of chemotherapy seems so daunting.

Seasun36-uk profile image
Seasun36-uk

Hi Crumble,

Welcome to the forum! You will be amazed at the support you receive & the information that you gain here...

It is a shock....& it takes a long time to process the diagnosis.

Take everything one step at a time. You’ve already done well, getting through some of the chemo & the major surgery! 🙂

Be kind to yourself & gather support & information, slowly but surely.

I wonder if you are in the UK? Most larger Oncology Centres have a ‘Maggies’ Centre nearby, which is a great source of help & encouragement.

Keep strong & keep posting.

Linda xx 🌻🌼🌼🌻

Crumble18 profile image
Crumble18 in reply to Seasun36-uk

thank you. I am in the UK. I am at The Royal Surrey County hospital. They have McMillan nurses but they are always busy or not there when I try to speak to them

Seasun36-uk profile image
Seasun36-uk in reply to Crumble18

I know what you mean. I hardly saw/see my CNS nurses (except after surgery in the hospital). If you want/need to speak to them, be persistent! I spoke to a Macmillan nurse recently via their telephone Helpline. She was so helpful & supportive - so that is another option.

Linda xx 🌼🌻

Crumble18 profile image
Crumble18 in reply to Seasun36-uk

thank you. I have been told we have community McMillan nurses who come to your home. I will contact them

Di16 profile image
Di16

I think most ladies are scared at first. When I was told I had a large tumour on my left ovary that they thought was cancer, I was really scared & weepy, & assumed I didn't have long to live. That was over 10 years ago. Although I have had recurrences - have it back at present - I don't have that scared of the unknown, scared of what might happen to me, scared of possible future treatments feeling that I had at the beginning. I'm currently on hormone therapy, & able to get on with life, & try to take life a step at a time. I also go when I can to a monthly gynae cancer support group, which can be helpful. Di

Crumble18 profile image
Crumble18 in reply to Di16

aww thank you. That is reassuring to me. I keep blaming myself and feel I am guilty of making my family suffer.

Katmal-UK profile image
Katmal-UK

Hi. welcome to the forum. Of course you are scared, I know I was petrified when I got my diagnosis just under 11 years ago but despite 2 recurrences Im still here. Depending on how you are coping u might want to consider counselling, it does help. Do you know wat stage etc you are? Do you have support from family and friends? I do hope you are coping ok xx Kathy xx

Crumble18 profile image
Crumble18 in reply to Katmal-UK

Stage 4. I feel guilty causing my family all this worry. I try to put on a brave face

Katmal-UK profile image
Katmal-UK in reply to Crumble18

I know what you mean about causing yr family upset but this isnt yr fault. I definitely think you should trt

speaking with someone. You dont need to be carrying round guilt xx

Crumble18 profile image
Crumble18 in reply to Katmal-UK

I suffer from Bipolar Disorder and my dad recently passed away so I think a visit to a councillor might be a good idea

Katmal-UK profile image
Katmal-UK in reply to Crumble18

Im so sorry to hear about yr recent loss. I had a recurrence shortly after losing my beloved dad. You certainly are going through a lot, sending you a big hug xx Kathy xx

Crumble18 profile image
Crumble18 in reply to Katmal-UK

thank you.💕💕

delia2 profile image
delia2

Hi. I'm new to the forum too and feel scared as well. I have high grade Stage 3 B. I have had surgery and am waiting to start chemo. I am less scared of dying than I am of spending months being sick with chemo and THEN dying or having to start chemo again. I want to know if chemo will offer me a chunk of time with good quality of life. Does the cancer almost always recur after chemo? I find reading peoples' experiences really helpful.

Crumble18 profile image
Crumble18 in reply to delia2

it is the thought of it coming back that scares me. I have had surgery but find it hard to see a future

delia2 profile image
delia2 in reply to Crumble18

Fortunately a lot of people here have success stories. I guess we have to hope for that . . .

Crumble18 profile image
Crumble18 in reply to delia2

yes. I know what you mean

delia2 profile image
delia2 in reply to Crumble18

I am the last person to give advice since I'm just starting this journey/nightmare but I do know you need to be kind and compassionate to yourself. I feel the same about my family. My daughter is pregnant and she just sobs at the fear of losing me and I just want her to be healthy and happy. It's a bad hand for us and our families but we have to try to make good memories every chance we have. I am so grateful to have found this forum.

Crumble18 profile image
Crumble18 in reply to delia2

thank you Delia. I hope we both share an easy journey. I haven't reacted to the first round of chemotherapy except for hair loss. But I don't know what to expect this time. Let's hope we are strong

Nancy222 profile image
Nancy222

Hi Crumble,

I found the thought of the first chemo to be frightening, but when I got there, the nurses were so kind and so caring that it eased my worry. Bring something to read or watch, snacks (healthy or not), and drink lots and lots of water. You can do this. Chemo day is just for you.

And as for not seeing a future, take some time to read more posts here. The stories are of survival and pain and joy. Take each day one at a time, don't borrow trouble, don't anticipate worse case scenario, and see how that feels for you. You can always go back to thinking no future, but try the other way too.

I found meditation so helpful to me. It helped centre me and keep me in the moment. Let me know if you want a link to some great meditation.

And lastly, here's a big big hug of support. Cancer treatment is not easy, but it does get familiar. Oh, one more thing, everyone responds differently to treatment. When I read about some women's reaction to Caelyx (what I'm on now) I had grave concerns how I'd handle it, but I'm having no side effects other than fatigue.

XXOO

delia2 profile image
delia2 in reply to Nancy222

This is so inspiring and hopeful. xo

Nancy222 profile image
Nancy222 in reply to delia2

We really need to be hopeful. When I was diagnosed in early 2016 with low grade serous cancer, I was told good news and bad news. I was told the cancer was slow moving, and if it came back, there was little they could do for it. Fast forward two years and I had options that weren't around back then.

Time is our friend. Hope is our fuel.

XXOO

Crumble18 profile image
Crumble18 in reply to Nancy222

thank you for your advice

Crumble18 profile image
Crumble18 in reply to Nancy222

I follow the teachings of Buddha but even meditation doesn't bring me peace of mind at the moment. But it is reassuring talking to you and all the other lovely people who understand my worries

HI, I won't to give you some encouragement .I've been on here for near 4 years and yes we are all different in how we react to treatment but in just the last 4 years new treatments and trail are proving to give results.

You have found a very supportive community so when ever you need advice or just need someone to correspond with we are here, the ladies all understand what you are going through..Take care Lorraine xx💙💙

Crumble18 profile image
Crumble18 in reply to lorraine71-Australia

you are so right. Everyone is so kind and supportive. Thank you 💕

bluepeterella profile image
bluepeterella

I understand totally where you are coming from. The guilt is awful especially if you are a Mum or have people who love and depend on you. My daughter was 10 when I was diagnosed. Before my illness she had difficulties with anxiety and fearing I would die while she was at school. I used to reassure her by telling her I wasn't going to die until she no longer needed me. Now of course I can't say that to her and I noticed how she started to hide her worries from me.

I used to feel like the worst mum in the world.

One year on things have settled with us and I no longer think about cancer and dying very much. Sometimes I have to remind myself it's still there. We just chug along as normal, only things are a bit better because I took ill-health retirement from work and I'm loving it. My daughter doesn't have breakfast club and after school club to contend with and is happier.

Sorry this was meant to be supportive but has been a bit of an offload! x

Nancy222 profile image
Nancy222 in reply to bluepeterella

I found your post very supportive. It shows us how life moves on.

Best wishes for you and your daughter.

XXOO

delia2 profile image
delia2 in reply to bluepeterella

I find it very hopeful. I look forward to feeling some sense of normality!

Crumble18 profile image
Crumble18 in reply to bluepeterella

thank you so much.

Neona profile image
Neona

I came home from surgery in a terrible mental state- shaking under the duvet every morning and worrying about absolutely everything. My CNS said it would get better. I went for counselling at the Macmillan centre which was good. However I think it got better on its own. It is both a physical and mental shock. As for my friends I went for it and put my diagnosis and operation on my facebook page so everyone would know it was ok to talk about it.

Crumble18 profile image
Crumble18 in reply to Neona

I have the support of over 2000 Instagram followers who are wonderful. Sending cards and gifts etc but my close friends are not to be seen☹

Neona profile image
Neona

My hairdresser lost her husband when their children were very young. She was very upset because her friends would cross the road to avoid speaking to her. Years later she said she had come to realise that they simply didn't know what to say. No excuse really but I suppose they are just not strong people. Just a hug would do or a " thinking of you".

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