Just wanted to post a fed up message. I came away for a little break with my daughter and grandchildren and have ended up in Bangor hospital miles away from home having my 10th bowel obstruction
These seem to get harder every time and this one doesn’t seem to be following on like my other episodes. I was coming out of it and it seems this morning I might be going back into it again. The pain is horrendous and to be honest I am getting so down about it. Seen a surgeon at the Marsden who has said it is so risky due to several obstructions they may put a permanent tube in my tummy, not seeing him again till June and with being so far away I can’t get access to him at the mo.
Sorry to moan, we have all got so much to put up with and I’m normally very positive but this is testing my patience.
Sending love to you all
Di xxx 🌻
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DianesK
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I am so sorry hat you are suffering these torments and indignities.
I hope, with whatever solution they can offer in Bangor, that your instruction will resolve soon.
Then it will be time to see your surgeon and you probably should go ahead with some kind of surgery that will at least clarify the situation inside your bowels.
It is terrifying, but you have few options and living with this must be torture.
With all this cancer, you must be BRCA positive. Have you had the genetics test yet?
Perhaps, when this current trauma is sorted, you can go on a PARP inhibitor.
Yes I am BRCA and I have had all the PARPs I can have and because of the bowel I can’t go in a trial and only one chemo option left.... bit grim really.
It’s not good being so far from home, hopefully I will get patched up so that at least I can be near my surgeon so we can talk options.
I'm not surprised you're fed up. It seems so unfair for you to have these repeated problems when you've already had breast cancer and ovarian cancer. It certainly makes a lot of us question why we are given all this c.... to contend with when others sail through life with no problems (or that could just be me who thinks this way). When you say a tube in your stomach do you mean a stoma? If thats whats being considered then I'd go for it. As a nurse I've seen so many people with stomas who manage them brilliantly and so many advances have been made in stoma care in recent years.
Good luck and lets hope that things settle down for you,
The tube is like a permanent NG tube in my tummy that I can bag myself if an episode starts. We had only talked briefly about it last week as an idea. I’m seeing him again soon with my oncologist to look at the best options, it just seems to have escalated recently and changed the way it happens and resolves, which is a worry. The aroma would be definitely the outcome if they decided to risk the surgery but there is a lot of other risks if it goes ahead.
I’m with you, all the good people seem to have to put up with this nonsense, I know I’m nearing the end of my journey, but I would like to be able to get things a bit better managed than it is at the mo.
Oh, Di, what a big, frightening let down for you, this happening. Even worse when you're away from home for a break. It must be even more frightening -bad enough if you were home. Do hope your problem is resolved very soon. You must be yearning for your own bed, near your own medical people. Sending loads of love, 💐💐💐 😊 Solange xx
You’ve had such a rough ride. Such a shame that you have had this set back while you were away. I’ve only had one episode of obstruction early this year but it was horrendous. I’m sure we all do the ‘Why me?’ sometimes and you’ve every right to feel fed up. ( Although we’d never wish this on anyone else.) I hope you get some resolution soon and a plan of action. Wishing you all the best. Cheryl. X
Dear Diane . You poor girl ! You must be so disappointed and I hope so much things look somewhat brighter as you have what I hope is excellent treatment though I can imagine how stressful things are right now. I’ve just dropped my 4 yr old granddaughter at school so only a short message to send you thoughts of. Improvement and best wishes . It’s sunny and bright in Bournemouth so hope you.
I fear these obstructions and cannot believe you have managed so many! I wish I had some help to offer but you are obviously quite familiar with what to do. Just a note of support, hope you're out of hospital soon and glad you have this space to vent as we all completely understand the fed-up feeling. Wishing you a quick recovery and an enjoyable time with your daughter and grand kids. And then home to be near the familiar healthcare team! oxoxxo Judy
I love this forum so much, I don’t comment much but I read so much of what ever has to say... all the challenges, advice and fab positive results. It’s a safe place to air your thoughts.
I’m going home hopefully tomorrow as long as the soup stays down.
I am so sorry to read of your obstruction and terrible pain again, especially when on holiday. I like you have High grade serous 4 peritoneal fallopian tube cancer, now on Niraparib for 5 months. I really feel for you. Had a really bad obstruction last year ( gave me four days to recover) or that was the end. Luckily it sorted itself out but being on a diamorphine syringe driver in so much pain and my family crying sitting beside me day and night was so scary. I have just been to New York for two weeks, and the pains started up and I was beside myself with worrying, just drunk water for 3 days and it passed, thank goodness. But now keep getting tummy pains when I take medication or eating. Has it come back or is the tumours pressing on the bowels. Like you I feel please do something better about this. I hope you got out of hospital and spent quality time with your daughter and grandchildren. Take care I really hope they sort your tummy out👍🙋 have a lovely bank holiday.
Thank you for your kind words, you’ve been through the mill. I went out for lunch with my girlfriends yesterday only had grilled skate and ice creams but I paid for it last night. Still in some pain today. Have the hospital given you any medication. Do they think it’s IBS and what is the tube for? I’m at Addenbrookes but I’ve heard the Marsden is very good. Back on water and clear soup. Enjoy your rest with the grandchildren. Thinking of my family are fantastic but sometimes they don’t understand what the pains and fear all this brings. Thank you for listening 🌺🙋
Aww bless you, it’s awful that you can’t enjoy time with your girlfriends without having all this worry of obstruction.
The tube would go directly into my tummy to drain off what would normally come out of the nasal gastric tube that I have in my nose.
It’s not IBS it is bowel obstruction every time and getting very frequent between episodes unfortunately. I can’t take anything for it, just stay on a low fibre, low residue diet
The Marsden has been great and the surgeon am seeing now is very caring.
Water and clear soup is rubbish but if it does the trick and keeps you out of obstruction it’s a must.
Hope you are clear of this soon and stay well. Sending love xxx 🌻
Been back to bed. Still got some pains i meant me having IBS not you, I'm grasping at straws here. Scared in case this is a blockage. Been taking buscopan and pain killers. How are feeling. Are you still in pain? Thinking of you. Best wishes xx👍🏻🤢
You need to be careful, if you think you might be going jnto blockage, get some medical help, it might catch it early and they can deal with it and not be so traumatic. That’s what I always try to do, sometimes I succeed but then others I don’t and I end up passing out because of quick, severe fluid loss.
I’m feeling a lot better today, I have only had little bits to eat, mainly soup, tinned spaghetti and ensures, lots of water. I haven’t got much pain at the mo, just a bit of an ache from all the bowel action.
I’m starting my journey in the car back down south later on this morning. Need to get home and sort myself out, get back to normal.
Hope you can do everything you can to avoid a blockage and it settles down on its own.
Sorry not been in touch, had a bad few days but blockage gone. Now on Complan and Just drinking. Got CT booked for the 4th at Addenbrookes just to see what’s wrong. Hope it’s clear and the tumours are not growing again. Nightmare all round. How are you feeling are you keeping things down. Take care big 🤗 hugs. XxMxx
Oh I’m so sorry Diane, this is a nightmare, are you in pain or are they giving you medication for it. Have you still got your tubes in? Oh I really feel for you, We put up with so much rubbish. Thinking of you keep positive things will get better. Big hugs to you. 🌺💐🙋😞
Yes tubes are still in, the pain isn’t too bad at the mo. My cannula has tissued this afternoon so I can’t have the fluids because they can’t get another one in. I have a portacath fitted but no one can use it.
Still waiting for them to give me the gastrografin, this hospital is so so slow, I wish I could just get home and look after myself there.
I’m off to badger them again about were this stuff is... they are going to be sick of me by the end of today x 🌻
You must be frustrated by now. Is this your local hospital? CT department telephoned this morning Fromm Addenbrookes to say they were sending the Contast which you have to take 48 hours before to get the better picture. Even although they give you the other contrast intravenously at the time. But it’s all a waiting game. This was why I didn’t want to go to my local hospital in case they intervened. You can never tell some departments are so efficient and others are ‘tomorrow will do ‘ attitude. Still it could be worse. You take good care of yourself and just enjoy the rest. Best wishes M xx💐🌺
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Second line Caelyx and bowel obstruction
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