Hi all, this is my first post so bear with me... My mum was diagnosed with ovarian cancer (stage 3) at the end of last year. They decided to do chemo first, then operate and then more chemo. She had 3 rounds of carboplatin and we thought before we went for the scan results that it had done some good as she felt much better. The scan resuts showed otherwise - although it had made a difference, it hadn't made enough of a difference for them to operate. So they decided to do 3 rounds of carbo/taxol. Mum has coped really well with loosing her hair and is still tryiing to do lots of normal everyday stuff - i'm so proud of her. We've had health issues with my dad too while this has been going on although he is much better now than he was. Mum is actually putting weight on at the moment which my dad has convinced himself must be the cancer increasing in size.... She is having scans again this week and we get the results next week. I know the time will go (especially with my oldest going back to school tomorrow) but I'm dreading going for the results - mum seems so well - I don't want to be told otherwise again. Sorry there isn't really a question in all this - I think I just needed to get it all out....
Just need to talk...: Hi all, this is my first... - My Ovacome
Just need to talk...
Hi Marion
It's always hard, coming to terms with these things when you want things to be better and you're not sure. (I am presently caring for my Mum and Dad in their home, so I know!)
Try ringing the helpline nurses on 0845 371 0554, they will help you with the medical stuff as they have so much experience of the treatment options and possible outcomes.
You have come to the right place to get some support for yourself, as all of us have experienced some type of the anxiety and worry that goes with a diagnosis of OC. It's a good place to let off steam!
All the best to you and your family. You are showing what a good daughter you are by being on here 
Love, Wendy xx
Hi Marion!
I was diagnosed at stage 3c in 2009 and had carboplatin & taxol plus debulking. My daughter, like you, was absolutely brilliant. I had a recurrence in 2011 when I became allergic to carboplatin and the tumour did not respond to cisplatin but was operable. I am now feeling very well and getting used to managing my stoma. My daughter is getting on with her life and very demanding job. I know how concerned you must feel but your mum is probably handling her condition in her own way. Wendy's advice is good to help you get your head round it.
Hi Margaret, thanks so much for your reply. They've also told my mum she might need to have a stoma as she has quite a lot of cancer on her bowel - she is really dreading that so it's great to hear that you are feeling well and getting used to it. Thanks again for your reply - I hope you continue to feel better. xx
Can't say I would chose to have the stoma but prefer it to the alternative! I have adapted my bathroom to make the management easier and bought a disposable nappy disposal system to help with getting rid of the bags.
The specialist stoma nurse allocated to me has been a great support and, once it has finally settled (sometime in the summer) she is going to teach me to irrigate which will give me more control and reduce flatulence.
The actual stoma is not difficult to deal with though its unpredictability is. My stoma nurse got me a card so I can flash it in loo queues and not have to wait if the bag needs changing and I have a key for disabled loos that I got from RADAR?
I bought a biggish makeup bag and a pocket sized pack of baby wipes that fit in it. I also pack a couple of spare stoma bags and a pocket sized pack of tissues I also carry the adhesive remover and deodorant that are supplied and I wear scent in case of smells. I have cancelled social activities a couple of times when it is producing a lot of flatulence but this should become less of a problem once I learn to irrigate and only need to wear a small "safety" pouch.
My grandsons wanted to know if the bag was made of skin. I think that they thought I was like a kangaroo! I showed them the bags and the stoma, which is high up on my abdomen, and they seemed reassured! Your mum should learn to cope reasonably quickly.
One thing she would find helpful is a walk in shower, on the odd occasion when mine has gone into overdrive, which it occasionally does at night, it has been a boon to be able to remove my nightwear in the shower and so minimise mess.
Good luck in coping with it, it is the stoma that my daughter has more problems with than the cancer. She was, however, very good after the op and had me staying with her to convalesce. I literally could not pick up the kettle and I am only just getting back to cycling for exercise. I am told one can swim with a bag on but I have not tried it yet. I had my op on Dec 4th last year and am just beginning to feel 'normal' again. You will need to be prepared for this and for post op nausea when the anaesthetic works itself out of the system. I had a week of it two weeks after the op, and for the sheer exhaustion which continues for some months. Driving is also a no no for about 6 weeks. No matter how good your dad is he will probably find it harder to cope than you will.
Good luck, I hope this helps!
Margaret!
PS I am 71!
Thank you so much - there's so much great info there for us. My mum is 78 so I'm expecting the op to prove difficult in terms of recovery time. She is a very young 78 though and considering what she's going through, remarkably fit and healthy... I live right next door to them as well so will be there day or night if needed! Thank you again for all your time today. xx
I forgot to say that the company that supplies the bags, etc, is excellent and deliver very promptly. They deal with the GP for the prescription, I order by phone and supplies come within 2 days and they even delivered to my daughter's house in London when I ran out because I did not take enough with me!
M
MargaretJ, just to say I admire you, you seem to cope so well with what you have to deal with, getting on with things and playing with your grandchildren you are an inspiration to us all. Love Sue x
Dear Margaret
I really appreciated your account of dealing with the Stoma. For some of us it's an inevitability and good to understand and become more familiar with the issues we will need to deal with.
The advice and help you've received have been a great support but it's clear there needs to be more awareness to make sure provision is there in public places and at events. I think there's still a lot to be done to make better provision.
I hope the summer finds you swimming again and enjoying all your social activities.
Xx Annie
Oh how I agree Annie! Iwas at the theatre last night and felt uncomfortable. I went tomthe loo before the performance but nowhere to put my stuff while I attended to the stoma. Lukily the bag had little in it so I left it unchanged. I have not yet had to wave my " i need theloo NOW!" card but if there is a big queue I may have to. I have found my walk in shower a boon! It makes accidents easier to del with! Another tip! If you can't find travel packs of baby wipesvthen femfresh do packs of 10 "feminine hygiene" wipes (available at Boots) that take up little space though they are pricey. I am now looking for a slightly bigger handbag with compartments that will keep all my stuff organised and to hand.
Funnily enough the worst thing is flatulence. So embarassing!
M
Ps! Forgot to say my ca125 is down to 6 and there is no sign ofvdisease! Fingers crossed that I get more than 9 months this time!
M
Dear Margaret
Do you know I think you should start a blog. It's apalling that you have to have a card to wave. There should be adequate provision and you might want to write to the theatre to explain how difficult it is to cope without appropriate resources. I used to be a Disability Officer and my job still relates to disability and equality. There needs to be more understanding of people's needs everywhere. Theatre loos are the pits re provision - so are many other places where there isn't a decent sized cubicle and a washbasin at least - but preferably a shower included.
But on the upside .... CA125 down to 6 and no sign of the disease! That's absolutely amazing. I'm going to celebrate that for you tonight.
Going back to the theatre last night - what did you see? I tend to go to London or Stratford for the theatre as Cardiff is pretty rubbish for choice if you're not into musicals - which I'm not. The majority of plays are GCSE or A Level texts so little new or exploratory stuff. It's a shame as we have the most wonderful auditorium housed in the inappropriately named 'Millennium Centre'.
xxx Annie
I saw Northern Broadsides production of Loves Labours Lost! Very well done! I envy you Welsh National Opera! I went quite often when we lived in Swansea! You aso have Bristol Old Vic just over the bridge but I must admit that I have not been to Stratford since the early 70's - another thing for my to do list!
The card is useful as it means I can ask to use staff loos in shops if I am desperate. Theatres are bad news for the disabled in any orm. Ours has a small wheelchair lift but for anyone who just has a problem with stairs there is no option but the (very expensive) stalls. My problem with disabled loos is that I don't look disabled. I have been tackled about my blue badge though I only use the car and badge when I am having a bad day and cannot walk or cycle!
As for celebrations, feel free to join in! I have been celebrating for a week.
M
Was it a good production? One of the things I intend to add to my list is to go to the Globe in Southwark. The Millenium Centre in Cardiff is really well worth a visit and the provision for wheelchair users in the circle has an excellent view. Is there a chance your local theatre won't give you a discounted seat in the stalls as they don't have a lift? It's always worth asking. Under the provisions of SENDA public places do have to make reasonable adjustments and if you can't get up the stairs it's reasonable to ask for a cheaper seat in the stalls.
It's also shocking that the over-riding image of a disabled person is someone in a wheelchair. I tear my hair out at work about the general ignorance of disability and equality issues. I've been lobbying for more showers in disabled loos across our university for years and my boss actually asked why!!!!! Perhaps you could get me a card to wave at him too.
You must certainly use your blue badge any day. That is your right and if you display it no one should dream of querying why you've been given one. I've recently been allocated a parking space at work - the people in that department couldn't have been more obliging. Wish I could say the same for everyone.
xx Annie
Hi Annie!
I manage stairs, just slowly! I prefer the dress circle! Nut has had a couple of conferences in Cardiff so I know the millenium centre! My son, daughter & my son's family were all at the international in the stadium a while back! Needless to say they support Wales! Sian was actually born in Swansea!
M
Hi Marion,
one thing no one else has mentioned is - you can reasure your Dad that your mums weight gain is perfectly normal with some types of cancer. I have gained 2 stone and jumped two dress sizes over night. I put it down to the stearoids that they give us with the chemo (carbo/taxol) to prevent the sickness.
Problem is my last treatment was one year ago as now and I still haven`t lost as much as a pound, but ho ho, am here to tell the tale.
I hear of a lot of ladies with OVC gain weight, going through surgical menopause can sometimes be another reason but its not likely to be the weight of an increased sized tumour. Mine was the size of a small melon and didn`t make the slightest difference to my weight.
Hope this reasures him . love from tina xxxx
Hi Tina, thanks so much for this - I had a chat with Dad earlier but I'm not sure he took much notice! It helped me though!! Great to hear your last treatment was a year ago - that helps too! Thanks for taking the time to reply. xx
MarionL, thats what this site is about, answers or if not support, I cant give any advice and know how difficult it is to wait for results but whatever they are you will deal with it (for mums sake) I have found this site helpful just to be able to tell how you feel,let of steam and get feedback and support, hope you feel the same . Love Sue x
Hi Marion
Should have said I put weight on and became diabetic after the first lot of chemo. I am controlling both with diet. Slimming World extra easy is doing it for me. I have lost 13lb since February and have kept my fasting blood sugar under 7, which pleases my diabetes specialist nurse. Last week I used my bike twice for the first time in 2 years. Which is good for both weight and blood sugar.
Just one word of caution for dealings with your mum. You will want to "do everything" for her to make things easier and show that you care but don't! It will make her dependent, take away some independence, and could affect her mental attitude. Be supportive, knowledgeable and sympathetic but do not take over. I had to ask the very kind friend who does my housework and ironing not to do some things that I can still manage as she was robbing me of my independence. She was hurt because she was being kind and caring and wanted to look after me and I felt guilty but I do need to keep doing as much as I can for my own self respect. I would have found it harder to tell my daughter to lay off!
Sorry to seem negative but you are being a great daughter, help and support your Mum but don't smother her!
Margaret!
Thank you for that, Margaret! From me .... I mean! I am looking after my Mum at the moments(spinal op and nerve pain and damage) She is 85 and not strong. There is a tendency to want to do it for her, whatever "it" is! You're right ....we can't cure all the problems but we can allow them their dignity and independence.
Love Wendy xx
Absolutely agree - I think it'll be my dad calling on me all the time - Mum will just want to get on with it herself!!
PS: the bike riding is not as impressive as it might sound! I live in York and never need the lowest gears on my 28 gear bike! LOL!
Love Margaret.
Marion,
My Mum 72 next week had an emergency ileostomy on the 13th March because of a complete bowel obstruction, like your Mum mine is very active and has coped so well, she is starting to look like her normal self as well. She was very ill and severly dehydrated through being sick all the time but now her face has filled out again. Like you I want to be there for her but as I live 60 miles away that is not always possible. Looking back Mum should have had this operation at her first debulking surgery, it would have eliminated so many problems she had suffered with constipation and 2 blockages prior to her stoma. We see the surgeon on Friday and I am sure he will be pleased he operated on her, it was touch and go whether they did or not. I know and Mum knows the cancer is still there as they could not remove it all but hoping she can have more chemo, her oncologist does not seem in any rush for her to have more at the moment.
I wish your Mum and you well.
Sue
x
Hi Marion!
One thing I was warned about but found hard to deal with when it happened was the continued production of mucous from the rectum. Not offensive but thick and slimy and uncomfortable to sit in, not to mention the embarassment of damp patches. Tena Lady minis help to cope with this but it is these embarassing details that I do not discuss with my daughter. If you know about them you can help your mum to deal with them discretely without her having to be too "up front" about them. It all helps us to maintain our dignity!
M
My love goes out to all of you ladies who are looking after their Mum`s.
Mum`s are so precious and you should do as much as you can for them.
I supose the answer is to ask if they`d like you do something first. Mum`s are proud and they won`t always ASK YOU for the help they need, they may feel neglected or un-supported if you don`t do things or don`t offer, but still they may not ask, they won`t want to become a burden to you or anyone.
I can understand the independence thing but I would have loved it if my daughters had taken over on some of the every day household chores and cooking so that their Dad and I could have used OUR energy on more nice things.
One thing that kept my independence alive was my knitting and sewing, I did those for my girls and left the domestic every day stuff to anyone who cared to take it out of my hands.
We are all different and we all have different needs - you know you Mum best and if you are unsure about anything at all TALKING is the best way to muddle through.
NEVER be afraid to talk openly and honestly to her about your own worry`s, she will find her independence in supporting you emotionally as well, just be there for one another in spirit with love. Its the best healing medicine of all.
And if she has grandchildren, keep them around her as much as she can tolerate, they can be the best tonic of all, their inoccence makes you feel all warm and humble and it brings a big smile to your face.
Speaking from the mind of a cancer sufferer who is a mum and grandmother, but also one who experienced her own mother with OV cancer.
I was 16 when I lost my mum and it wasn`t easy but I wish I had been mature enough to be able to do things differently.
Love with a hug to you both xxxxxx
Hi
Pleased to see you are getting loads of help and support on here and agree with previous responses that you are a doing a wonderful job of looking out for your mum and finding out as much as you can. You have also been a fantastic support to me through my investigations and operation. Don't forget you can call me any time if you want to talk about anything at all.
S xx
Advice
PPC or omentum? No surgery yet as tumour not shrunk enough but ca125 dramatically reducing.
6 rounds of chemo before surgery HGSC
