Recently diagnosed

[Bearup]

Hello, this is my first post. I've very recently been diagnosed with oc stage 1b grade3 . Have had ovaries and tubes removed. Followed by more surgery to have full hysterectomy and omentum removed. Waiting for results of recent surgery. Will be having chemo as soon as I recover from op. I would to hear some positive stories from anyone out there who is or was in a similar situation. Needless to say I'm very frightened. Thank you. X

[Microbabe]

It is a scary time ... I'm grade 1c1 clear cell and had my big op on 10th may ... Just had my 5th cycle of chemo and doing ok .... Think it's fear of unknown with chemo it was for me I didn't know what to expect ... For me it was not as bad as I expected ... The huge list of side affects are scary too... Everyone is different with affects of chemo you may get one or two or non at all... If you do feel nausea though they have lots of different anti sickness so don't keep quite tell your team and they will find one to suit you... I was dreading losing my hair terrified me but now that's happened it's not as bad as I though their is a lovely online shop for lovely turbans and you get a NHS wig for free which are really nice... I often don't wear my wig a thing that I doubted I would be brave enough to do... Good luck with your treatment .. You have come to right place the ladies on this site are amazing so supportive with lots of information and great advice ... Big hugs you have done amazingly well getting through a major op ❤️❤️

[Bearup in reply to Microbabe]

Thank you so much for replying. I'm really trying to get a positive slant on all this but struggling a bit at the moment. A lot of my care up my operations has been all a bit of a nightmare. Hope the rest of your treatment goes well. You quick reply has really helped. Wishing you well. Xx

[Microbabe in reply to Bearup]

It isn't always easy to pick out positives... It's the little things sometimes ... I haven't had to shave my legs in weeks ... It's such a shock to find ourselves being in this predicament... We go from being normal to going to hospital every five minutes for this blood test or treatment our lives are turned upside down ... We have to find a new normal it's very difficult especially when you are alone with your thoughts ... The time surrounding my op too was quite stressful I was so poorly and my son got married 12 days later it was touch and go wether I would need a wheelchair ... I managed without and we had a fab day ... I try to take each day as it comes I have up and down days but looking forward to a social event helps.... As my chemo comes to end (hopefully) in a bizarre way I look forward to chemo day to cross another one off lol x

[HogwartsDK]

Hey Bearup!

First of all welcome to the forum and I am sorry you find yourself here but glad too as you will get some great support from all the amazing women on here! It sounds like you have more or less the same diagnosis as me. I was stage 1c with grade 3! I am 6 months finished Chemo now and very well at the minute! I too had 2 surgeries and the results of the second surgery were all clear hence the stage 1 diagnosis! The reason I had Chemo is because of the grade 3 cells and I am guessing that's why you too are going down the Chemo route!

Initially when I was diagnosed the prospect of chemo was truly terrifying and it is definitely a tough road but you will get there! I did, and if I can you can (and there are many many more ladies on here that got through it too!). I was lucky as I didn't have many of the side effects that some people suffer the main one for me was it played havoc with my digestive system but I got through that too! Drink plenty of water and I cannot emphasise this enough it really makes a difference to the point where I continue to drink 2-3 litres a day now! Make sure you ask any questions you need to ask and don't be afraid to, if you are feeling bad during chemo tell the nurses in the chemo ward they can often change medication and that does help sometimes! Keep a diary as you go through this it also really helps! On your chemo days give yourself a treat, it was my GP that suggested this and its something to look forward to on what can be long tiring days!

Its a hard road but you will get there! Stay in touch with this forum as it is a great place to seek help and support absolutely everyone on here knows how you feel and will have experienced it all and can give you loads of tips on how to manage the side effects etc.

I wish you the very best of luck with your treatment!

Onwards and Upwards!

Dx

[Bearup in reply to HogwartsDK]

Hi, Thank you for your reply. It's great to hear you are doing so well. Long may it continue. I'll be getting the results of the recent surgery in a couple of weeks- anxious times but trying to be positive.

Thanks for the tip about water. I'm going to need to prepare myself as best I can before the next step.

Yours was the second response I had in a matter of minutes of putting up my post. I think I'll be using this forum a lot.

It's interesting- it's easier to talk on here than it is too my friends/ family.

Wishing you well. Sx

[minard]

Hi Bearup - your last comment says it all. It's certainly much easier to talk about cancer-related stuff on this forum often than direct to those we love the most. We're scared ourselves, and we don't always want to show this to our friends and family. I've tried so hard to be truthful with my (grown-up) kids and husband but not give them the more negative fears we all have. Every single post I've written here has had such wonderful replies, and I've learnt so much even from just reading others.

For me, your story rings true too. You just get yourself over the major op, and you're straight into this new scary world of chemo. Nothing can prepare you, but everyone here will give you tons of support. x

[Bearup in reply to minard]

Hi Minard, Thanks for your response. I think I will need a lot of support. I have a wonderful family and great friends but it's early days and am finding it hard to talk to them, plus my children are still quite young, both at secondary school. To be honest I just terrified but I'm hoping I'll get stronger as I start to heal from the recent op.

Wishing you well. X

[Sunfleury-UK]

Hi and welcome, there's a great booklet available from Target Ovarian Cancer called 'What Next?' for people newly diagnosed- as well as the medical stuff it also has lots of stories and advice from women who have been through surgery, chemo and the afterwards and includes the emotional impacts too. You can either download it or request a free paper copy... I would have found it really helpful after surgery and whilst embarking or having chemo so thoroughly recommend it... There is also a booklet for younger women (which recently won an award at the BMA) available from all four of the main charities and there is also a link pinned to the right hand side of this page!

There have been lots of great posts and suggestions about finding your way through chemo so a search for 'chemo tips ' above should find some!!

All best wishes to you.... Sx

[Bearup in reply to Sunfleury-UK]

Thanks Sunfluery, I will have a look at the booklet you suggest. I feel I need to try and get my head round what's ahead even though it scares me .

Wishing you well, X

[Sunfleury-UK in reply to Bearup]

I hope it's useful and completely get where you're coming from (I was & am the same!). It's often the case though that things are scarier when unknown... There are many many women here who have found their own way through chemo and I am sure that you too will find yours! Wishing you strength and hope xxxx

[Bearup]

Thank you, xx

[Alibee2]

Hi, I went through the big op in June and started chemo 9 weeks later. I felt really well the last 2 weeks before the chemo and took myself off for a last minute break - that probably won't be possible with younger kids (my daughter is 25) but I felt having a treat before the chemo was really important as I knew that I would not be feeling brilliant during it. I was terrified my first chemo day but actually the worst part was my fear itself (and the fact that an hours drive home after they have filled you full of fluid was not comfy - stopped at a cafe/loo half way home on chemo 2!). I would say, as the other ladies have, keep a diary - this will give you your general pattern of good/bad days, listen to your body and rest when you need to. Pre fill freezer so there is food on days you just don't feel like cooking and don't be too proud to accept offers of help.... Best of luck - I'm sure you will be fine X

[Bearup in reply to Alibee2]

Hi Alibee2, Thanks for the practical info about chemo. Today was the first time I saw a couple of friends since the op (5 days ago now). Still feeling very raw but was good to see them. Feels like a first step into the world again. I am overwhelmed and grateful by the supportive messages I've received from other members of ovacome. Sx

[Damelza]

Treat yourself, spoil yourself and let everyone else do the same.. Be selfish and don't be afraid to say NO..

[Minniemay]

It can be (is) very frightening. I was diagnosed at the end of March with metastatic OV, stage 3c, had a radical hysterectomy at the end of April, after 3 weeks started chemo. I have done better than I had expected, although it is no cake walk. I had my last chemo on Sept. 8, waiting for the CT scan (endless wait!). Makes me a little anxious, the waiting, but I feel pretty good right now. There is still much fatigue, but I've had some really good days.

You can do this...we all can. You will probably discover a strength you never you knew you had. Keep posting...

[Minniemay in reply to Minniemay]

Adding to my comment....sometimes it still doesn't seem real to me. Kind of surreal, even after all this time. I'm not sure I've been able to absorb it all.

As for being able to talk about it - there's nobody better to talk to than those who have walked the same path. Others care, but it's one of those things that one cannot really understand until & unless they have been there themselves.

[Bearup in reply to Minniemay]

Hi Minniemay, I hope you are doing ok and are recovering from chemo. Hope your CT scan happens soon and all goes well. I know what you mean about everything being surreal - it all feels like it's happening to someone else. Even though I've only been on this forum for a couple of days, I've been grateful to the responses I've received. Keep well. Sx

[Caroles1]

Hi Bearup,

Yes,it's scary, but never as bad as it seems.I had all the op and then 6 months carbo/taxol and it finished March 2015 and have been fine ever since,God willing!

I was the biggest coward,still am and worry it may come back, but you have to get on with life otherwise you ruin the good times, worrying about the bad times.

I agree with all that has been said by the wonderful ladies, I would just add, wear comfortable clothes for chemo,I used to nap all the time,drink lots of water. My advice would be to shop for a wig and head covers before you lose your hair,(it will happen after about 2 treatments).I shaved my head, it's less distressing than watching it fall out and it has grown back better than before.

Take lots of magazines and nice music and wear layers, you can get cold.

This is only my advice, you have to do what is best for you,but you will get through it,treat it like a battle you will win and come out the other side.

Be kind to yourself and accept all the help,classes and support that is offered and don't beat yourself up, it is time to get selfish.

It is very hard on familly and if you feel you can't or don't want to talk to them, there is someone always here for you to talk to.

The bright side is, since finishing chemo, I have been on 7 holidays at home and abroad, watched my daughter get married on a beach, done up 3 houses and look after my 2 year old grandson each week.Life does go on for all of us,we are not over yet and have not given up.

You can do this girl and we are all with you,

Carole xxx

[Bearup in reply to Caroles1]

Thanks for all the practical tips and for being so amazingly optimistic and positive. You sound like an incredibly strong woman. I think I'm going to have to dig deep over the coming months. X

[Caroles1 in reply to Bearup]

I'm not love,but we have to be and you will be surprised how you will find the strength from within......it will come

Just let us know how you get on

Carole xxx

[IrishMollyO]

Hi Bearup

I just want to add my message of hope to all those other positive replies you have got. I do not want to make light of your diagnosis by saying that at stage 1 you are lucky to be found early. Many women on this site are diagnosed at stage 3 or 4 and many of them fight the disease with courage and success.

You have been through the mill with surgery and now face chemo. I can only tell you that for me the chemo was not as bad as I imagined. In fact I was very positive knowing that each session was reducing my Cancer cells . The steroids they give you on chemo day and the 2 days really lift you. There is so much good advice out there including this site . As you can see you only have to put up a post and you will get an immediate response from lots of kind women.

Bring newly diagnosed is bound to worry you so try not to imagine what may happen as its just a waste of your precious time. I learned the hard way just to live in the present and what a difference that made to me. If you can go on a mindfulness course or read about it you will find that it really works. Meanwhile take care and the best of luck in your future treatment

XXX

[Bearup in reply to IrishMollyO]

Thanks so much for your message. I know stage 1 is relatively optimistic but ( there's always a but) I'm waiting for the results of the most recent op and I'm hoping and praying it remains 1.

It's really good to hear from lots of woman the chemo is although tough , it's not as bad as they feared. It also seems that I am going to have to get my head and overall wellbeing in a better place.

I hope you are doing well and are making a good recovery. Sx

[Hidden]

You've had lots of good advice already and once you start the chemo you'll quickly find your own routine. The first time is the worst as you don't know what to expect.

Don't assume it will be terrible. We all tolerate things differently. I don't like the steroids; others love them! I always say it's the treatment that makes me ill rather than the disease.

Download TV programmes you'd like to catch up on; audio books; take more entertainment than you think you'll need. The day always turns out longer than you expect so you need to swallow a "being patient" pill before you set off. The hanging around is the worst part for me - getting tired doing nothing. Take a varied bag of nice things to eat which might tickle your fancy and drink lots: my chemo kit includes a flask of homemade soup (watercress is favourite) ; little pots of nuts or dried fruit; fresh fruit - different textures basically to steer you away from hospital carbs.

You don't say which chemo you'll be having but if you will lose your hair I'd advise a number 2 - 4 rather than a complete shave.

Try to stay as fit as possible and don't let the cancer take over your life ( easier said than done sometimes!).

I think no-one has said don't use Dr Google. This forum is a perfect illustration of how random this disease is and how we're all individuals not statistics.

Good luck with it all! x

[Bearup in reply to Hidden]

Hi, thanks for all your tips for getting through chemo. I don't know what will happen yet, dates , type etc but I'm seeing the surgeon in a week or so to get the results of the recent lot of surgery. I think I'm dreading that more than chemo. I'm also dreading having to have the next conversation with my children . They don't know about chemo yet.

Wishing you well . Thank you. Sx

[linderruth]

Hi, Bearup! So glad that you've gotten so many good responses. We've all been there. I am among those who have found chemo to be much less gruesome than I expected. The unknown was the greatest fear. One of the best things that I have received from one of the forums I follow is a recommendation for the book called "Radical Remission" by Kelly A. Turner. It basically focuses on patients who have achieved cancer-free lives or long remissions without submitting to chemo. I'm not going that far, but I have found lots of useful information about steps I can take to support the treatment I'm getting. The basic theme is strengthening you immune system so it can fight better. I have felt very empowered by finding things that I can control (as opposed to chemo). You might not want to look at it until you're settle into a routine, but I think that anyone could find something in there that would help them.

Best wishes that your first time goes smoothly, and all is upward from hereon in.

Linda

[Bearup in reply to linderruth]

Thank you, I will have a look at the book you recommend when I feel a little stronger. Appreciate your support - I'm hoping things will improve as from my initial visit to my GP up to fairly recently have been full of set backs.

Keep well. Sx