Daughter worried about mum

I am so sorry you ladies are facing this yourselves. My mum recently had a hysterectomy and they found that there were cancer cells in her fallopian tube, and on the growth.Nothing in the lymphatic system which is good. She starts chemo next week. I am not sure what to expect-what will best support her?

[Vicx1977]

Hi marvellousmo,

I'm so glad you have found this site. The ladies on here have so much knowledge and are so lovely and supportive! I'm sorry to hear what's been happening with your mum. I'm on here to support my mum too. She was diagnosed with ovarian cancer in December, just before Christmas. The last 3 months have been such an emotional rollercoaster but I have had such amazing support from the lovely ladies on here and I would get as much emotional support as you can so that you can support your mum. It will be a big shock for you all and some days will feel so overwhelming you feel like you can't breathe, but other days will seem quite normal and you will battle through. Try not to Google as that can scare the living daylights out of you! I found the macmillan site useful for information about mum's chemo and what to expect.

My mum had her first chemo on Wed, she was so well looked after. We were so scared of what was to come but everyone is there to help and support you all. She took her slippers, a blanket and books and wordsearches. The staff made sure she was well fed and watered and gave her meds to stop her feeling sick. One of us could sit with mum at one time so we took it in turns to sit with her as she was there for 8 hours. There were so many people there all having their treatment and it was a relaxed atmosphere, it was so different to what I had expected. Just take each day at a time and step by step and ask any questions you need on this site. Hope this has helped a bit. Take care x Vickie x

[Lind58]

As someone in your exact position - 4 months ago yesterday my mom had her surgery - Stay positive, be her advocate, become informed, push her along when she needs it, check in with her and spend QUALITY time with her not involving treatment/sickness. This state is a real form of torture for anyone to see their love ones suffering so anything you can do to help her feel more normal is best. BEST OF LUCK TO YOUR MOM!

[Hidden in reply to Lind58]

Thank you Vicx and Lind for replying. I live overseas and am due to visit in June, but she does have my dad and brother looking after her. I feel like such a big baby getting so upset about it because she is 80 next month. She has been such a wonderful kind and giving mum and I cannot face the thought of a world without her. Am i right in assuming that if she is not getting chemo more than once a month that might be a good thing? She thinks they said that rather than once a week- the surgeon said he wanted to play it safe. Sorry your mums are also going through it Vicki and Lind.

[Vicx1977 in reply to Hidden]

Aww she's your mum lovely and you're bound to be upset, I am devastated but have learnt a lot from these lovely ladies about living with the disease and treating it almost like a chronic illness like diabetes. There are so many ladies who do so well with their treatment on here. I know it's hard but try to just take one day at a time, it's so easy to let our minds run away with us and imagine our worst fear but I do try to reign my self in a bit when that happens and enjoy our days and special things we do together, like sharing lemon muffins whilst mum was having her chemo! I write all these treasured moments down in a little book and keep a little notebook by my bed to write my worries down when I'm awake at night, my mum also does this too. My mum is having her chemo every 3 weeks as it gives her chance to recover in between doses, I'm not too sure to be honest about the different regimes. How many doses is your mum booked in for? I bet you can't wait to visit your mum in June! Take care and keep us posted how your mum gets on xx

[Lind58 in reply to Hidden]

For me it was the worst day of my life - the day we found out. I hope it stays the worst day of my life and my mom makes a full recovery. Praying and hoping for only the best for us 🙏🏽

[Hidden in reply to Lind58]

Thanks Vickie and Lind. That is good advice about taking it one step at a time- I think I would feel better if I was closer but I can phone her and be close in that way. She is more stoical than I am. Is there anything you have found to be helpful during chemo to provide comfort?I know so many people go through treatment every day and many have to face this trial when they are much younger.

[Lind58 in reply to Hidden]

For my mom - after treatment we have a heating pad handy at all times, day 4-7 were tough. She just had her fourth treatment and surprisingly unlike the other times no side effects at all. During rough times - she was extremely tired, loose stools and lots of pain in abdominal area. She eats a bland diet, no nuts, lots of relaxing, heating pad, lots of comfort - sibilings rotate coming to spend time, and most importantly in my opinion (everyone is different) endless prayers.

[Hidden]

Practical help will be useful, like cooking, cleaning and lighting the fire. It’s very hard to keep up with house work when going through chemo. I usually feel fairly okay for the first two days after chemo, then I feel shattered for a week. Make sure she’s drinking lots of water. I like to have lots of time to myself to lie on the couch and watch TV but everyone is different.

[IrishMollyO]

Hi Mo

As a veteran of this disease I would like to send a word of hope for your mother and her situation . As you haven’t given her stage , grade etc I can only compare it to my own. I was diagnosed in 2011 with a rare form of OC called Primary Peritoneal . It was High grade Serous stage 3c and inoperable. It had not spread from my Ovaries or womb so the only other place must have been the Fallopian Tubes. I have since read many times that researchers think that many cases of OC start in the Fallopian tubes. You could ask her consultant to verify this. My way of thinking is that if it is confined to the Fallopian tubes it’s a lucky break to be caught at source.

At 74 I’m only a few years behind your mother. Stage 3 or 4 has a high recurrence rate. I was treated with 6 rounds every three weeks of Carboplatin and Taxol. It’s a tough regime but very doable as long as you follow the advice of her medical team. I was clear for five years when it recurred in my lymph nodes. This time I was given Carbo only which I disputed as a patient with a minimum of 6 months clear is recommended to have a repeat of Carboplatin/Taxol. I was told it would be too toxic for me ! I suspect my oncologist at the time was ageist! That was three years ago and to my annoyance it came back in the same lymph nodes last Sep. I’m telling you all this because as an advocate for your mother you need to make sure her age is not a factor provided she has no other major health problems.

I had to watch and wait until Jan when I finally started my treatment of guess what ? Carboplatin/Taxol . This time I have a different oncologist who thankfully doesn’t see me as being ready for the scrapyard! I had my third session last Tue so I’m in my bad side effects period but by week three I can look forward to feeling upbeat and human again ! My worst one is neuropathy which is gone by the third week. They do keep an eye on this by the way as in a small percentage of women it can become permanent. Some people can be nauseous but thankfully I wasn’t . In any case you are prescribed an armory of pills and potions to cover all eventualities .

It’s good that you found this site as it has been invaluable to me since I found it three years after diagnosis . I learned so much from the wonderful members. You will always get an answer and even if they don’t have an answer you get a shoulder to cry on . I go to support groups and attend as many patient meetings and coffee mornings run by the Ovacare as I can. Ovacare is the Irish equivalent of Ovacome UK. I’m not sure which country you live in but we have many worldwide members .

I want to wish your mother the very best of luck with her treatment . I would like to add that I’m not a medic so my statement about the origin of this disease would need to be verified by your consultant .

Just to add that in between recurrences the gods had another nasty little surprise up theirs sleeves for me . I was diagnosed with a totally unrelated Breast cancer in 2017 followed by mastectomy and Radiotherapy . They must have thought I would get bored without some kind of treatment ! I think I will call myself Houdini ! Take care and be hopeful.

XX

💚💕

[JanePW1965]

Hi Marvellousmo. Sorry to hear about your mum's diagnosis. My mum was diagnosed in Dec 2013. Stage 3C. (Officially on Christmas Eve!!). I remember when she phoned to say an ultrasound had shown up masses on both ovaries. I just knew what it was and I went numb. She hadn't been feeling wall that year and just couldn't put her finger on what was wrong and I think that's how it is with OC.

She's had three lots of chemo over the years and finished the last lot in July 2017 and has been stable since with her CA125 being 9 at the last three month check a few weeks ago. I live over 200 miles away which I find difficult but even more difficult for you being overseas, but reassuring that your brother and dad are there. My sister lives only around 20 minutes from mum so that's really good. Is your mum's health OK? My mum was 82 last October and she has been really positive throughout which I think has really helped.

As Vickie said, don't Google! There's a lot to take in and it's a bit overwhelming but you'll get so much information from this site. Everyone is so helpful. And I agree with Lind - prayer. I really believe in the power of prayer. At our church there's a box at the back where you can write a prayer and pop it in the box and people take part in dynamic prayer on a Tuesday morning. Also, at the end of the service there is a small group of people you can sit with who will pray with you. I don't go to church every week but I really do believe in the power of prayer.

There are some other ladies on the site whose mum's are also affected by OC.

As Woolyhat said, advise your mum to drink lots of water. My mum kept a diary and noted down the side effects and she found there was a pattern after each chemo and she knew when she would have good days again.

Anyway, keep us up to date with things. Sending positive vibes. Jane XXX

[1lisamac]

Hi marvellousmo

My mum too has had hysterectomy and had 6 rounds of chemo due to oc we were Lucky as we found it early in late stage 1 but there are ladies on here that find it later than that all l can say is stay positive especially for your mum my mam said it helped her as I was making her feel positive about herself and making her see light at end of the tunnel with all the crap she was going through all I can say is she has now been 14 months in remission I know she’s lucky and now started to feel herself again mum still gets aches due to the hysterectomy the thought of it returning never leaves my mind and my mums but just be there for you mum which I’m guessing you always will be the supports helps so much just talking and any pain she gets is normal it will ease but takes time so hope this helps you all my love to you and your mum 😘

[Hidden]

Thank you Lisa, Jane and Molly. I appreciate all your advice. The consultant did not tell her what stage and she did not ask. It was not in her ovenden (sp?) the layer of fat near the womb. I am in the US- today I have been here almost ten years and in the last couple of years I have been getting such terrible home sickness-linked I think to seeing my parents age and this is just bringing it to a whole new level. I just want to be able to get in the car and drive over to her. My brother is currently living at home to support them both and this gives me a lot of peace but I just want to be there.My mum has been pretty healthy-not overweight, never smoked or drunk much- she has problems with her knee but she has been active through retirement.Thanks for all the kind advice ladies.