Hope and fear

[Lindy-m]

Hi my name is linda, I am 43 and have a 5 year old girl who is my world. Today the hospital has told me that I have stage 3 peritoneal cancer to be confirmed by a biopsy in the next few days. I have gone from being really well 4 months ago to gradual increase in back ache abdominal bloating and pain, raised ca125 to today's devastating news. I really need to hear some positive things right now from people who have or a dealing with this diagnosis as struggling to take it in right now. Linda

[Lindy-m]

Oh, not sure where the head and neck cancer thing came from.? Also I am in the northeast of England, does anyone attend the support group in Middlesbrough? Would be nice to make some friends before going the first time x

[Donut_in_my_hand in reply to Lindy-m]

Hello Linda,

I'm not from Middlesborough. .. although I have visited because my father in law is from there. We once had a bizarre holiday in a caravan in a place called Crimson Dene. We called it Grimdon Dene ... gosh I hope you don't live there.

I write this post with trepidation as I don't want to say the wrong thing. But I know when I wrote my first post last week I was so grateful just to reads the words of other ladies who understood a little.

I am also 43 and I have one daughter who is a bit older than yours .... 13.

I understand a little of the shock you are feeling although every story seems to be so different. 4 months ago I was rushed to hospital with abdominal pain and they removed a twisted ovary that histology showed contained a tumour. I am going in for further surgery on Thursday next week.

You must talk to as many health professionals as you can. If you are unsure then ask someone else.

It is so difficult for your brain to adjust from being a fit and healthy normal mum to accept and understand what is happening to you. My heart goes out to you and I wish you support and luck.

Kate

[Hidden in reply to Lindy-m]

hello, I'm based in Sunderland. Happy to meet for coffee and a chat. I'm in a similar situation but with ovarian cancer, I was given the news after an op June 20th, stage 3c. I have a 10 year old son called Milo, who has been at the forefront of me thoughts through all of this.

It is a shock, I'm 2 months in now, I've had surgery and 2 of 6 chemo sessions and I'm in a much better place. It takes time to process the information you are being given.

Let me know if you would like to chat.

Lisa x

[Lindy-m in reply to Hidden]

Hi Lisa, my diagnosis is now somewhat different, now what appeared to be peritoneal appears to have started in stomach, and I am in a hospice now, getting weaker, with only one chemo done, and no surgery now likely. So been a bit of a roller coaster x

[Hidden in reply to Lindy-m]

Hi Lindy, I'm so sorry to hear that. A roller coaster is probably the best way to describe this whole thing. Sending best wishes to you. X

[Katmal-UK]

Hi Lindy. Im so sorry you find yourself here so young. I was diagnosed stage 3 ovarian cancer in 2007 at the age of 48, nearly 9 years ago. Currently no evidence of disease with a CA125 of less than 3. I have had two recurrences but beaten the cancer back each time. I do hope you have lots of support, which is something you will get here on this site. Please feel free to ask questions, rant etc we'll be here for you. In the meantime Im sending you a big hug. Love Kathy xx

[HogwartsDK]

Hey linda,

Sorry you find yourself in this situation. I haven't the same diagnosis as you I had OC but I am similar age and just to say hey and welcome! There are quiet a few very wise ladies on this forum who hv experience with PPC and who will be able to help! Try not too worry too much though I know that's easier said than done!!! When your docs put a plan in place you will feel much better!

Take care and keep in touch

Dx

[Lorent]

Hi Lindy, sorry that you got the news we all dread to hear, but you have found this site with the most amazing women who will give you the best support, I have been diagnosed stage 3a, had TAH in April and am now finished second cycle of chemo which I was dreading, but not as bad as I was expecting, stay strong and as positive as you can, keep in touch with these women they are such a source of strength. Sending best wishes, will keep you in my thoughts and prayers

Take care

L x

[Lyndy]

Just wanted to send you best wishes Lindy...I completely understand how shocked you must feel right now but you will come through it and as others have said once you have a treatment plan you will feel more in control again xx Lyndall

[Gleedy]

Hi Linda. I have PPC stage 3. I don't suppose you had heard of it previously either. I was in bits in January when I was diagnosed. I am now approaching the end of my chemo and have had major surgery. I am in a much better place now. After surgery I was told all signs of cancer had been removed except for half a cm of dead cells or deposit and chemo would get rid of that. So please don't despair. There is lots of hope and treatments. You will get loads of support and advice from the ladies on this site. Most importantly you are not alone and please post any worries you have. Once you have a treatment plan you will feel much better. Good luck. Tracey x

[Lindy-m]

Thank you so much ladies for your messages, just what I needed to hear. I CAN and WILL get through this. I am sure I will be on here a lot in the coming weeks. I look forward to getting to know you all xx

[Yoshbosh]

Hi Lindy,

I'm 38 with 2 little girls of a similar age to your daughter (7 and 4). I have stage 3 OC so a little different to you.

When I got my diagnosis, I thought it was a death sentence (bear with me here...!), and I said as much to the Gynaecologist I was speaking to. There was a bit of an awkward silence and clearing of throats for the medical professionals in the room, and finally, she gently said, "We haven't told you that you're going to die." It took me a while to get my head around that, but I came to realise that it was true.

To receive a diagnosis of cancer is rubbish, and it's not a walk in the park, but actually once I started chemo I started to feel better. I had terrible ascites and pain in my side, but the chemo did its job and the ascites disappeared. The relief from that far outweighed any side effects from the chemo.

By the time I had surgery 3 weeks ago, I felt almost back to normal. I should restart chemo sometime in the next couple of weeks, once I've had a post-op review with the surgeon on Thursday.

You are going to be bombarded with information in the coming days and weeks. All I can say is deal with things as you feel ready and take each step as another step closer to getting well.

Thinking of you xx

[Hidden]

HI Lindy, yes a diagnosis like this is a huge shock to the system and so much to take in and worry about. First of all many of us on here with OC have been around for quite some time. I myself am almost at my ten year anniversary. So this is serious but at the worst manageable for many years. You may never get a recurrence!! As some one above mentioned, once you see your oncologist and have a plan in place you will be more settled. Do find support groups near where you live for Cancer patients. It is good to meet others with a diagnosis, perhaps get advice from professionals etc. Dont hesitate to accept any offers of help from family and friends as in cooking play dates etc. Come back and ask more questions when you have a treatment plan and we will all do our very best to support you. Sending you best wishes

[Dollysmum]

Hello there Lindy and a big warm welcome to you.

You're in very good company here although I'm sorry you've had to find us. It's a horrible shock to be landed with a cancer diagnosis. But take comfort in that there is a wealth of information here and we're choc-full of lovely, experienced women battling this horrid disease. We share a lot, cry loads and often have a good old laugh. This forum has gotten me through the last eight months.

When you get a plan in place, you will feel more in control. It's no picnic, but it is doable.

One piece of advice. DON'T go googling your symptoms - there is a lot of outdated rubbish out there and you'll give yourself nightmares. Instead, check out this site (obviously), Target Ovarian Cancer and Macmillan..

Keep us posted.

Debs xxx

[Millie-c]

Hi lindy,

I'm 43 too. My daughter is 20 this year. Such a shock to be told I had stage3c ovarian cancer just in time for the new year.

I'm so grateful for finding this site. The ladies on here have been through my journey with me. Iv had 4 chemo, extensive radical surgery, first chemo after surgery and have 2 left.

Before you know it you will have your plan and start ticking the chemos off. It's ups and downs most of the way but I can't believe how quickly time goes by. U can and will do this.

stay positive, and ask as many questions as you need to.

Big hugs and warm welcome.

Mandy, xx

[Choski]

One piece of advice to add to that already shared - write down all your questions and take a big blank piece of paper with you when you go and meet your oncologist/surgeon etc and someone to write down the responses/answers! Also to prompt you when you suddenly find you can't ask the question you wanted to because you suddenly feel that you can't question a professional!!! Most of us have been there!

I Did Google and found it really helpful to me as it gave me lots of things to note and check with my incologist but I realise that some people are scared by out of date detail etc on the net so make your own mind up. Stats are out of date though and don't take into account the individual so that is one major point to remember.

Get a pretty folder for all your medical letters etc so you can keep them all in one place.

Get a journal as that helps too and you can track your treatment, how you feel on each day etc etc once your treatment plan is age and started. That's a really useful thing and really helps with your discussions with your oncologist or surgeon etc.

Talk, talk talk to your family or whoever you feel you want to share with and remember that we are here at all times and for any discussions so this is a really good place to come

Take time and look after yourself

Clare xx

[Steghart]

I echo all the above, I was 47 when diagnosed and my first thought was for my children ( had my first op of 4 on my daughters 14th birthday) I have got through 2 lines of Chemo and am now tumour free. The biggest thing I have learnt with my kids is the better I deal with it the better they deal with it. This has been, and continues to be very hard (I take Escitalopram to help me and it has worked!) Accept all and any help from friends, I didn't the first time and it was a mistake! As an ex teacher tell the school, my daughters teachers were such a support and if she had a normal happy routine then I could cope! She was obviously much older but I worked in KS1 and came across many children living with very difficult circumstances and found that they coped very well as long as they were not asked constantly by well meaning people how Mummy is! My daughter said school was her her haven and she did not want to talk about it just be with her friends. I hope this is some help. I never thought I would have the strength and resilience to deal with this ( and I do have very bad days believe me!) but we do and the ladies on this site are invaluable, we have a wealth of information that Oncologists/surgeons have not (baths in Dead sea salts are excellent for magnesium intake and all aches and pains!) good Luck, Claire xxx

[Hidden]

Thinking of you and sending positive vibes and prayers. Stay strong, be brave. Good things happen. Xxx

[Cre27]

Wonderful advice above. Just to add that you will get through this,we all do . Strength and determination surfaces that we didn't know we had. Wishing you all the best,sending virtual hugs xx

[Lindy-m]

Thank you all, I am overwhelmed with your support. It looks like once the biopsy is out of the way I will start chem before a further CT and then surgery and then more chemo. I have spoke to my daughters teacher today, she had a scare last year so has some idea what I am going through, but luckily her mass is not thought to be anything worrying. They are going to keep an eye on her and let her year 1 teacher know. I have been for a chat with my GP this morning and he has given me sleeping pills in case I need them. I did manage some sleep last night, more than I thought I would but I was exhausted. Thank you all again, your support will get me through this, I know it x

[lesleysage]

Hi Lindy-m,

I don't think anyone has yet shared the Ovacome Helpline (freephone 0800 008 7054) as another source of professional knowledge. Ovacome also has information sheets which I found helpful.

Hope the day is as good as it can be - 'one day, one hour, one moment at a time' is a mantra many of us share. We all know our minds race away with worry and this can stop us from treasuring and 'sculpting' some precious times.

Lesley

[Julie40 in reply to lesleysage]

Lesley your post made me think of Annie. She was always the one to share this. So sad when we lose someone. Good on you for stepping up and remembering to give Lindy the number xo

[lesleysage in reply to Julie40]

Julie, this is a huge, most unexpected compliment....especially as when I first joined this forum nearly a year ago, Annie was someone I related to very quickly. We exchanged chats and hoped one day to meet up in London, but sadly not to be. As you say, she is a great loss to so many people, not just her family.

Lesley

[Lindy-m in reply to lesleysage]

Annie is whippet, am I right? I have read some older posts, she seemed like a wonderful inspiring person. X

[Julie40 in reply to Lindy-m]

Yes she was a wonderful woman. I met her at the very start at a Target Ovarian event. I was a newbie and she gave me an induction to this cancer melarkey 😃 She supported so many and had so much knowledge xo

[Julie40 in reply to lesleysage]

Lesley it really was lovely that you gave the details. I know it may seem really simple but sometimes we need the basic and practical things set out for us. I had the pleasure of meeting her and getting to know her personally. A real character and a very sad loss xo

[January-2016-UK]

Hello Linda, lots of good advice here. Once you have a treatment plan you will have something to focus on. It's all do-able right from the chemo to the operation. A number of us here are just finishing our first cycles of treatment, others just starting and there are many who have been through this many times since diagnosis and there are others who have been treatment free for years! So just ask anything that occurs to you.

Good luck with the biopsy. I needed one too before the diagnosis could be clarified. All the best! Helen

[Sunfleury-UK]

Just to add to all of the excellent advice- there is a guide for 'younger women' written by all of the ovarian cancer charities and with a lot of input from women who have been where you are now - there's a link to it on the right hand side of this page. It can be downloaded from each of the charities websites or a free copy can also be ordered from each- Ovacome, Target Ovarian Cancer, Eve Appeal, Ovarian Cancer Action. There is a section in it specifically for those with young children.

Both Ovacome and Target have excellent info on their websites about questions you might find useful to ask and I can thoroughly recommend TOCs booklet 'What happens next?' to anyone newly diagnosed as it has support not just with the medical side but also about the emotional and practical impact as well as some great links. Again it can be downloaded or ordered for free...

Wishing you hope and strength, Sx

[Caroles1]

Hi Linda,

Im older than you and when I was first diagnosed I got on the phone to my best friend crying saying ,look after my kids.

They were 27 and 25 at the time, but that is what first comes into our mind, no matter how old they are.

Nearly 2 years on from diagnosis I am NED and not having any treatment,just to let you know you can get through this and in your dark moments we will be here for you,

Lots of love

Carole xxx

[IrishMollyO]

Hi Linda

I just want to assure you that you are not alone with a PPC diagnosis. I was diagnosed with stage 3c over 5 years ago. I just had chemo and stayed in remission until this year when it appears I have a recurrence. Scan next week will confirm and then more chemo will follow. Although most people have heard of Ovarian cancer not many have heard of Peritoneal. This is because it is much rarer although with same symptoms and treatment. I only discovered this site early last year and I was very glad to join. The ladies are so helpful and it is great that PPC women can find a great welcome here.

You are so much younger than me so there is a younger women guide you should look at on this site. You have already got lots of good advice from the ladies already. I can only assure you on the chemo end of things. It is tough but very doable. I felt really positive and in a fighting spirit when I was going through it. You will get lots of practical tips here . You will find that when you have been given a treatment plan you will feel more positive. I do wish you all the best and if you need to know anything just put up a post or call Ovacome.

XXX

[Julie40]

Hopefully you will get comfort and reassurance from the replies. You aren't alone with this.

I've replied to your last mail. Let me know if you need anything at all. Hugs xo

[Rlenesue]

Hi lindy.... When I got the news I was devastated. I started chemo january 27 for 3 rounds of chemo, then surgery, then 3 more rounds of preventive chemo, which was really hard on me, I will not lie. My last treatment was August 15 and I'm trying to gain strength and stamina back. I made it through because of my children and you will too. Try to keep positive . there will be days where that is next to impossible, but is doable. My ca125 when diagnosed was 25,000. They stop counting at 25,000. It is now at normal levels. There is hope even at stage 3.

[Cromwell13]

Hi Linda,

I have just rejoined the blog. I was stage 3 cancer 5 and a half years ago. I had 2 sets of chemo and had my stomach removed. I am now perfectly fit with plenty of energy. Keep fighting the fight .... it will work out.

Best wishes

Brian