My mother who has just turned 70 was diagnosed just before her 69th birthday with a stage 4 tumour in July 2015 after a 6month illness. She had 3 rounds of chemo followed by surgery to remove the tumour followed by another 3 chemo’s and in January this year she was told she had responded well and she was discharged told to come back in 6 months for routine scan. After 5 months she was in agony with rumbling stomach and abdominal pain. She was told after a scan that the ‘nodules’ they were keeping an eye on had doubled in size (I still thought at this point that if the nodules were only 1cm big how were they causing so much pain) and offered another round of 6 chemo – different type. She had 3 treatment (at the Christie in Manchester) but the pain which never went away turns out to have been a blocked bowel during the diagnosis of that they decided the chemo wasn’t working and that they would stop treatment until she had recovered from this blockage with instruction to stick to a low fibre diet, she was sent home on Monday this week. However, she told me last night that she hasn’t been to the loo for 5 days and it seems that this blockage may be more seriously that we thought.
On top of all this the consultant has now told her that if she can maintain the diet and keep her bowels clear, he can offer her more chemo - 18 weekly treatments but it only has a 10-20% chance of success without it he says she will have only 4-12months. She is now talking about not having the treatment¸ saying that she want as much quality time with the family as possible, we live in Scotland and have 8 year old twin boys and an (almost) 11 year old daughter, and she lives in Lancashire so the distance is incredibly hard, especially as I work full time (but have a very understanding and flexible employer) I need to manage myself to be split between the 2 but my daughter in particular is devastated and wants to see her Grandma.
I’m sure there will be individuals here who have been through the same thing or are going through it too. I would love to hear from you all.
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Allo01942
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First of all you sound like a very caring daughter,I had a mum that lived in Portsmouth and me in Kent,she too was very ill and it can put a tremendous strain on you,so you must too take care of yourself.
Have they said they can deal with the obstructed bowel?,if that can be done,then they can offer her the chemo.I know at this point your mum wants to give in, but she must do all she can to optimise her chances.
Have you been in touch with Macmillen? They maybe able to offer some solutions on company and care for your mum so it isn't such a strain on you.I think you need to have a meeting with your oncologist to try and put a plan in place so you all know what can be offered.Also,there is a nurse on this site that may be able to offer advice and help and a willing ear as I think you need it.
There are many lovely ladies on this site that I'm sure will be in touch who may have gone through what your mum is,
I just want to say,be strong for your mum and stay positive,
I wish you lots of love and please let us know how you get on
What a heart wrenching story... Your poor mum ... I'm terrified of this happening not being able to go to loo is just awful... I hope it's sorted out for her soon it must be getting her so down and fed up with it all... I'm sure that we all have low points and want to give in ... You get so frustrated and sick of being sick you just want to be normal again...I want to be able to fight OC to the end but it is all about risk and benefit...it is the hardest choice in the world to take the next treatment with all the possible side affects making you sick again...I just wanted to offer my best wishes and huge hugs the ladies on here are a fantastic resource... I know I would not get by without them they are amazing and so is your mum coping with OC is not an easy ride ... Good days and bad it's always with us .. A good cry when I'm alone can sort me out and I'm ready to fight again being as positive as possible helps me through each day... Hope your mum feels better soon 😍
Thank you everyone, It's great to be in touch with people going through the same thing. I will try and get in touch with her oncology nurse and ask some more questions. I would like to understand what different options are available, surely there is more treatments to be tried? Is it worth Questioning what the consultants say without understanding more about her diagnosis?
Hi . Its always worth speaking with your mums oncologist. My mum had OC originally, stage 3, and many years later after no recurrence she was diagnosed with primary bowel cancer so I can totally relate to how you are feeling. I found the way to cope for me was to find out as much as possible from her oncologist. I wish you mum nothing but the best but also be careful not to spread yourself too thin, otherwise you wont be use to your mum or daughter. Stay strong, Kathy xx
Hello there. Sorry to hear about your mum. My mum was diagnosed with OC stage 3c on Christmas Eve 2013! Nice present. She hadn't been feeling well all year but didn't know what was wrong. Actually, in the January 2013 she had a funny turn and passed out momentarily. The doctors put it down to her heart. And I think, if only they'd picked up the OC then, things could have been better for her. Anyway, like your mum, my mum had the three chemos, debulking in Apr 14 then three or four more chemos - carbo/taxol. In Oct 2014 I went to the hospital with her and everyone was really pleased and thought they'd got all the cancer out and the CA125 was down to 14. So, she was thrilled. But three months later in Jan 15 she was told the OC had recurred. It was such a shock. She was told there was a small tumour close to her pancreas and one close to a lymph node. She didn't hesitate in going for second line chemo and it was called Caelyx. She had six lots of this. After the third her hands were so sore and cracked and this can happen, but the chemo was reduced by 20% and things improved. She had her sixth Caelyx on 21 July 2015 and has been on three monthly "watch and wait" ever since. At one point there was a bowel blockage showing up on a scan. My mum has always had a problem with her bowel though and has to take Potters Cleansing Herbs every night to help her go! Her CA125 has hovered around 200. She had a CT scan on 23 June and should have had a three month scan in July but the hospital forgot about it!! But the nurse said that a new 11mm tumour has appeared on a lymph node near her aorta. But they didn't seem to be panicking about it. She would have more chemo to keep the tumours at bay if needed. She really wants to live. She will be 80 on 4 October and is very active still and still drives. I think the fact she has been so positive has really helped. Like you I live far away from my mum and it's really hard. I live over 200 miles away. It's difficult isn't it.
So, your mum is young. I'm surprised the medics were leaving her next appt for six months. I would have thought a three month appointment would have been needed for her situation. I'm surprised they recommended a low fibre diet too. Sounds as though she needs some fibre to help clear the blockage. Make sure she drinks lots of water. My mum just doesn't drink enough even though I keep on reminding her. Has your mum had a CT scan recently and did it show anything around the bowel area? When mum was offered the Caelyx she was told there was only a 15-20% chance of success and she felt a bit pessimistic but it did keep the tumours stable. I hope your mum doesn't give up. Please be persistent with the medics and research as much as you can. I didn't want to research when mum was first diagnosed but after the recurrence I researched loads. My problem is that mum hates me interfering so I can't ring the hospital or she gets really annoyed so I struggle with that. So, if your mum doesn't mind you ringing, ring away. There should be a nurse in the oncology unit. It's very stressful and us relatives really need someone to talk to.
But this forum has been so valuable to me and it's so lovely to chat to all the ladies and the advice has been so useful.
I also have a very understanding and flexible employer and when mum was going through the initial treatment I was driving down to Birmingham every month (I live in Carlisle). It was tricky as I have two children who are now 13 and 14.
I really understand what you're going through and I really hope that your mum can have some more treatment and I hope she keeps on fighting, especially as she is only 70. If she can be kept stable with chemo, her quality of life can be good. My mum still gets tired even now but she just takes things at her own pace and always has an afternoon nap.
Anyway, best wishes, and please send an update. I hope you get some more useful advice too. Sorry I waffled on a bit!! It's been a long journey!! Jane x
The distance thing is making me feel very guilty, but gradually we are talking more about things and I do understand that what she really wants is for the children to be happy and healthy and not to be rushing around on a 800 mile round trip each weekend. my Dad is doing a fab job and he feels it's is his place to look after her not mine, he says I have enough on my plate with my job and my children. Being blunt, the fact that I might not be there at the end is something I'm finding hard to handle but I think having the opportunity at least to talk about things over with her over the coming months will make that easier. X
Hello, your message is like reading what my mum is currently going through. Last April my mum was rushed to hospital with abdominal pains, it was a blocked bowel. Diagnosed stage 3c. Mum had surgery then 6 rounds of chemo. Went into remission for only 3 months, had more chemo, it didn't work, currently on the 18 rounds of chemo, ct scan showed not working and now on lymph nodes in chest. We don't know what the future holds now, but you have the conversation of quality time with the family. Instead of weekly blood tests and chemo, losing the hair again when it had just grown back, you could be spending the time with your family and not unwell with chemo. You never know which is the right path to take as you want to try the chemo in the hope that you will be the 20 %. I always support whatever decision my mum wants to take. I wish your mum well.
Wow Jayne. You and I are definitely in the same boat. It's so very difficult but I agree that I can only support her when she makes her decision. You are right about the drain of weekly tests and treatments, it really takes it out of her and interrupts her life to the point where she would effectively write off the next 4 months when they may be the only 4 months when she feels well enough to do the things she wants to do. I think I am still coming to terms with it all. We have been told that without the 18 treatments we can expect between 4 and 12 months. If she does decide not to go through with it we will have to start making arrangements to spend the next year wisely. Thank you so much for getting in touch. I can only hope for you and for all of us on here the very best outcome possible. Xxxx
Just a slightly different viewpoint from someone who's 70 and has been NED for two years. Of course you want your mum to go on for ever and it's lovely that you care so much and want the best for her, but it is HER body and HER idea of quality of life that matter. We all have different levels of tolerance to chemo and what some people find bearable, others don't. Sometimes the trade-off may not be worth it. Just saying - and I don't want to upset anyone! Deb xx
Totally agree Deb. That's exactly my Mum's point and one that I understand and respect. She hated the chemo, the practicalities of travelling to hospital, waiting around in the hospital, everything, and she's been in incredible pain, another round of 18 treatments which only have 10-20% chance of success isn't something she wants to do. As you say, her body, her life, her decision X
Hi, I had an obstructed bowel during first line chemo. It is incredibly painful. Everything that goes in, has to come out, and if it can't go down, it will come back up as happened with me. Its not a nice experience.
I was admitted to hospital, was given morphine for pain and was pumped full of fluids via IV, nil by mouth. It took 4 days of this before things started to move. I hope your mum goes soon.
I can understand her re!uctance to go on with treatment, she's probably feeling very down at the moment. Firstly she needs to get the bowel working, if she is in a lot of pain she needs to contact her CNS and tell her. Once she is going again she will start to feel better but will probably have a fear of it happening again, I know I did!
Has she had any counselling? If not she can refer herself via Macmillan.
Your in a difficult situation. In Nov 91 I was in a similar situation, my dad had been diagnosed with inoperable lung cancer, he was in Northern Ireland and I was in Lancashire with 2 daughters around the age of your twins. I went over to see him. He was starting radiotherapy. We all went over for Christmas, he was in good form but was finding it difficult to swallow. In Feb mum contacted me and I had to go across again, this time though, my husband was away with work and I had to take the children with me. I went to their school, explained the situation to them and got some work for them to do.
It's awful being so far away from your elderly parents at times of serious illness. You feel helpless, torn in two! If you can go and stay for a while to get her through this rough patch that will put your mind at rest.
Is she living alone? Do you have any siblings? Only you can decide what to do. I hope she gets over this blocked bowel soon.
Hello Anne. She was taken into hospital where they diagnosed the blockage, it was due to the 2nd line chemo not working and after nil by mouth for a week they decided she had shown good signs of recovery and she could try a low fibre diet so she is at home now trying to manage that and decide what to do next ie whether to accept the 18 weeks treatment or not. She is in Lancashire and we are in the north of Scotland so the travelling time is about the same (7 hours) my Dad is completely devoted to mum and is always at her side. He doesn't leave her for a minute. I have 1 brother who lives in the same town as me in Scotland. Mum and dad bought a house here and visited Regularly with a view to moving here when Dad retired but 2 months after he retired she was diagnosed. Thanks for your reply. It's a great comfort to kniw I'm not on my own x x x
In my message I realised I'd put that the hospital had forgotten mum's three month scan and I meant appointment. I just wanted to add that when mum told the the news of the masses on her ovaries in Nov 2013 I went into utter shock and thought she wouldn't be around for long. I'm so grateful for the extra time I've had with her and she's been so brave to go through what she's gone through. She's been on 'watch and wait' for over a year now and because the tumours are present she will probably need more chemo in the future and she must feel apprehensive about that after being chemo free for so long. I think she would have more chemo but if she decided not to I would respect her decision. I would be sad, but it's her decision. I have spent so much quality time with mum and have loved every minute. I can't believe she will be 80 on 4th Oct - a date I never expected to see! Anyway, Allo and Jayne, keep me up to date with how your mums are doing and big virtual hugs to the lovely ladies on this site. X
You are very lucky to have had quality time and I have a lot to be thankful for, I have a lifetime of memories that I can share with my children. I know what you mean about shock, to be honest I'm still reeling. Perhaps when we have spoken more openly about it after she tells me what her decision will be, I will be able to come to terms with it.
I do really appreciate the time I've had with my mum. And I also feel so lucky that she has reached the grand old age of 80. That's pretty amazing even without cancer! The thing is, just keep in touch with your mum and talk with the oncology unit. You can also email MacMillan nurses who are very helpful. I keep in regular contact with mum. She emails me every night before she goes to bed and I reply every morning. My mum is a very stubborn mule and puts off going to the doctors and tells me not to interfere and I have to respect her views. I'm just amazed what she's been through since 2013 and amazed she's still here! I just read your reply to Anne. So sad that your mum got diagnosed just after your dad retired and they were planning to move to Scotland. What a blow for you. Your journey makes mine look like a breeze. I can drive to Birmingham in 3 hours 20 minutes on a good day. Well, thinking about you and keep in touch. Jane X
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She hadn't been feeling well all year but didn't know what was wrong. Actually, in the January 2013 she had a funny turn and passed out momentarily. The doctors put it down to her heart. And I think, if only they'd picked up the OC then, things could have been better for her. Anyway, like your mum, my mum had the three chemos, debulking in Apr 14 then three or four more chemos - carbo/taxol. In Oct 2014 I went to the hospital with her and everyone was really pleased and thought they'd got all the cancer out and the CA125 was down to 14. So, she was thrilled. But three months later in Jan 15 she was told the OC had recurred. It was such a shock. She was told there was a small tumour close to her pancreas and one close to a lymph node. She didn't hesitate in going for second line chemo and it was called Caelyx. She had six lots of this. After the third her hands were so sore and cracked and this can happen, but the chemo was reduced by 20% and things improved. She had her sixth Caelyx on 21 July 2015 and has been on three monthly "watch and wait" ever since. At one point there was a bowel blockage showing up on a scan. My mum has always had a problem with her bowel though and has to take Potters Cleansing Herbs every night to help her go! Her CA125 has hovered around 200. She had a CT scan on 23 June and should have had a three month scan in July but the hospital forgot about it!! But the nurse said that a new 11mm tumour has appeared on a lymph node near her aorta. But they didn't seem to be panicking about it. She would have more chemo to keep the tumours at bay if needed. She really wants to live. She will be 80 on 4 October and is very active still and still drives. I think the fact she has been so positive has really helped. Like you I live far away from my mum and it's really hard. I live over 200 miles away. It's difficult isn't it. 
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