Hi ladies.
Still in hospital. Been told today that there’s bowel obstructions which they can’t unsection. Basically telling me no more can be done for me. I’m on the strongest anti sickness meds and fluids and vitamins and have been for 8 days.
Any advice. Ive still fight in me and don’t want to give up
X
So sorry Suzanne, very sad news for you! Presumably they have based their assessment in scan results??? Any chance of a second opinion? Difficult to do nothing!! Must be something!!!
Thinking of you and sending you the strength to keep on fighting
Much love JackieO xxx
Suzanne, am sorry I don’t have any advice for you but hope someone else can offer you something more constructive...
Just want to send you a hug and say that I’m thinking of you hoping you can overcome this. Keep that fight and hope in you. We always have hope...
Lots of love
Sarah xxx
I’m so very sorry to hear this Suzanne , sending you love and praying that you can get through this .
Sheila xxx
Hi Suzanne sending you positive thoughts and energy, I'm so sorry to hear this, will you get a second opinion or would you try Cannabis I don't know how true the patient reviews online are that people with stage 4 that are told they are incurable have had positive stories, here is a link, as long as there is life there is hope and you are young & strong.
Sending hugs, a second opinion if you are up for it x
Hi Suzanne,
I’m so relieved to hear from you, but b****cks to that news 😞 That totally sucks 😢
Would “resting the bowel” help? I.e. no food and seeing if the obstruction clears on its own, or is it that the cancer has grown right through?
Vicki xxx
Oh my darling. I'm gutted for you. We've been wondering about you on here today. Never wanted to hear that you are so poorly. So sorry. I can only send all my love and hope it reverses soon and you get better. Stay strong. xxxxx
Thinking of you Suzanne...that’s a lot to take on board. But if you don’t want to give up...tell them that and push for another look. All power and hugs to you xxxx
Just don't know what to say Suzanne except don't give up amazing lady. There must be something 😢 huge hugs your way xx xx
Maxine x
Hi Suzanne - have you an NG tube to relieve pressure and reduce sickness? Have you had a scan - can they tell what is causing the blockage - the cancer? Scar tissue? Adhesions? I was in hospital for 2 and a half weeks earlier this summer with a blockage - surgery was not an option so I just had to wait to see if it cleared. After two weeks it did. Mine was caused by adhesions - from earlier surgery I guess. Thinking of you... Lynn xx
I'm sorry Suzanne, I can't come up with anything to help. I've had a blocked bowel but it doesn't seem to be the same as yours. I just had to starve until it cleared. The sickness was bad though.
Just keep positive something will turn up. Either someone on here will know or maybe a second opinion. Whatever you do, don't give up.
Been thinking of you. Sending hugs. Zena xx
What about the surgeon, can't remember her name but Greek sounding, who operated on Nicky 100 and featured on BBC. Also Lily-Anne consulted her too. I understand she is prepared to operate, where others have said no, if she thinks there's a chance of success. She might even be able to give you an initial opinion based on documents.
Hope the fluids and vitamins help.
Sorry to read your news, and as other ladies have suggested the blockage might well clear given time. You are a gutsy lady and I hope that they can come up with a plan. Take care Pam xx
Christina Fotopopolous at Imperial is the Whizz surgeon .....sending you all best thoughts when everything seems stacked against you . I was told all year that the rectal tumour was inoperable , that only a stoma would relieve pressure . Tomorrow , I am being operated on ! Try every avenue ....xxxx
Best of luck for tomorrow, Angela. xx. Maus
All the very best for today, Angela. Will be thinking of you Jo xx
Thinking of you today xx hope all goes well xx
Good luck for today Angela Xx
Good luck today Angela xx
I haven’t been able to get you off my mind since your last post. You must be feeling physically awful after what you’ve been through lately. I agree with @January-2016-UK..... the lady surgeon would be my next action . If anything can be done she would be the one to do it!! Private message me if you don’t know who we mean.
Please know that all your supporters on here are willing you to turn a corner and are holding you close in our hearts ♥️
Much love, Marian xxxxxxx
I’m sending all my love to you Suzanne - not the news anyone wants to hear. If you have the strength, try for a second opinion.
Many hugs, thinking of you, with love Ali x
Keep going Suzanne xoxo 🙏🏻❤️💐
Sorry to read this - have you spoken to a palliative care consultant yet? If it were me I’d ask for second opinion on the possibility of surgery and see if they have any ideas on how best to support you if surgery not an option - wishing you well x
Suzanne been thinking of you lots since your last post and praying for better news. You are so strong - don’t give up try for a second opinion x x
Oh my lovely I’m so sorry your in such a pickle at the moment this disease is a b@@@ard!!
Please please get a second opinion from either the lady surgeon or try Prof Jayson at the Christie!! There is probably a trial you could do x
I really hope you can get this pesky obstruction cleared so you can feel more comfortable and as Coldethyl has said get the palliative team in to help with symptom control.
I know the last thing you feel like is a journey somewhere for the second opinion but you’ve got that fight left in you and I’m sure you can pull your big girl knickers up to your chin for a trip but they may also give you and your team advice via e mail x
Oh sweetie wish I could wave a wand and make it go away for all of us I hate this bloody disease!
Sending you gentle hugs and a hope you can get somewhere with those pesky bowels xx
Much love and strength coming your way from everyone on here
Lots of love
Bev xx n
I have nothing to add except to echo what the other girls have said about Professor Christina , she is terrific and can sometimes give hope when all seems lost . If you want to give it a shot I have contact details . Much love to you , keep going lovely lady xxJulesx
Oh wow we trully are on the same path hun. Been told same still in with tube etc..sending me home in 2 days taken away weekly taxol offer as will do notjing apparantly. Basically said coupke to a few weeks left spend in comfort with kids etc...feel ya pain im terrified !! Im not ready to be at the end am clinging to the hope bowel will just open and suprise all...you never know hun my heart goes out to u amd hope we pull thru this together xx
Sending love and light Angie ❤️🙏xxx
Oh Angie. I’m so sorry. That’s what they’ve told me too. I’m terrified too.
Let’s hope for a miracle for us both. Xxxxx
Sending you both so much love and so many prayers. Please keep going and keep asking for a second opinion precious ladies . Xxxx
Will be hoping and praying for a miracle for you both. Love Bridie
Angie & Suzanne,
My heart goes out to you both. There is always hope, try not to be afraid, you are surrounded by love from us all. Valerie xxx
Hi Suzanne and Angie
Just to say healing energy was sent your way tonight from our power of eight healing circle and candles lit. I showed them your photo. Every little helps. Love, light and prayers, keep hope alive you are both strong people .
Sophia xx
I’m so sorry to read that you’re also still having a hard time
Much love
Xx
Hoping something can get sorted for both of you xx this is devastating news and I am so sorry and sad to hear it xx sending you both hugs xx
So sorry Angie to hear what you’re going through, sending love and and hope for a positive turnaround for you, keep fighting Xxx
Heartbreaking to hear those words Angie. Keep clinging with that hope, anything’s a possibility xxx
Sorry to hear that. My mum had tried reflexology every few days. Drinking juices natural ones. Carrot for example. Eat kiwis and drink conunut warer. Worth a try. Wishing you best of luck x
hugs to you Angie and sending Positive thoughts I hope there is something new they will try for you is there any trials maybe at a different hospital, I try to take a holistic approach in my treatment while I still attend hospital the side affects of what they are pumping into us is so harsh. I am not qualified to advise on these oils but if you tried a doterra oil supplier and check frankincense oil is suppose to be good for ovarian cancer.
Keep fighting Suzanne dont give up we are all rooting for you. ❤
Can't add any more other than my heartfelt wish for a turnaround. 🙏💞😘
i feel you have to be adamant that the team must seek a second opinion. They could send your scans/X-rays to a surgeon at another big teaching hospital. If they then come back with the same view then fair enough but often different surgeons will try different things. You have nothing to lose but a lot to gain hopefully. Stay strong and ask lots of questions xxx
I’m really sorry to read your post. The surgeon I saw was Christina Fotopoulou. She could advise you on options and ask to review your notes without you having to travel. It’s worth speaking to her secretary. Or asking someone to do so on your behalf. I read about stoma bags being made from part of the bowel and sites elsewhere to avoid the blockage. Is this possible or are you not feeling well enough for surgery.
Thinking of you and praying that things settle down and fall into a dormant state.
You could join the bowel cancer HU group for any input too
Much love
LA xx
I don't know what to say to you my lovely friend, I'm so shocked! Keep strong and I know your a fighter. Thinking of you everyday and keep you in my prayers. Sending you big hugs. Xxxx
I am sorry to see your post. I had one two years ago andit finally cleared after five days. I almost had another and vowed to never eat peanuts and or trail mix again. Cola and heating pad stopped it thankfully. I’ll be praying for you. I pray they an answer.
So sorry that you are going through this. Sending positive thoughts and prayers that the bowel situation clears and another opinion offers a new path forward. You are an amazing fighter and we are all with you. xx Gina
My DEAREST Suzanne,I am absolutely devasted for you.,I cannot bear what this bloody awful disease is doing to beautiful,intelligent feisty, good women like yourself. Get that second opinion and hopefully there will be other options available to you . MY HEART IS BREAKING FOR YOU AND YOUR FAMILY Keep your hope going Suzanne.Love Chris
I’ve been eagerly waiting on news, this is hard, so hard for you. BUT if you say you have fight in you yet, please seek a 2nd opinion. I did this a while ago and found a surgeon who was willing to biopsy my pleural disease when others wouldn’t.
Will be thinking of you.
We are all here xxxxx
Another thought. Is a stoma not a possibility? Sorry if that’s a silly question xx
Dear Suzanne,
I’ve been thinking of you loads and am so sorry to hear you are struggling. I read on the FB page only a few days ago there was a lady in a similar situation to you with bowel blockages, she had also spoken to the palliative care team and finally the blockages did clear. She is now able to resume chemo to try to keep this beast at bay for a while longer.
Stay strong lovely you are made of strong stuff, don’t forget that!! I’m not sure where you are being treated but you should definitely consider a second opinion from a specialist cancer centre, ie the Christie or Royal Marsden...keep fighting and asking questions but know that i’m sending tons of positivity and light your way Xxxx 💖
Sending love 💕 hang in there
Hi Suzanne, It's so hard to read this post you have been such a positive amazing lady through out and you still are , hope it can be turned around.. Take care My friend Lorraine xx💙💙
That is indeed terrifying news Suzanne. I feel for you. I'd hate to believe it is the end of the road though, as you are such a vibrant person, with a strong will to live. Hope you have the strength to still seek a second opinion still, and that the blockage will clear after all. And I'm trusting/hoping those strong meds are doing their job and you're not in any major discomfort. Maybe you could also ask for an anti anxiety drug to take the edge off, if that could help you in the meantime?
We're all thinking of you and sending hope. xx. Maus
So very sorry to hear your news, Suzanne. I’m yet to experience a bowel blockage so have no words of wisdom but a second opinion sounds like the best bet. We are all channelling positive thoughts in your direction. Stay strong lovely lady. Jo 🌺🌼🌸🌻🌹
I echo everyone’s thoughts on here and am thinking of you. Would walking help move things around? Love Nicola
Hi lovely lady, it’s nice to hear from you we were concerned about you. I’m sorry they can’t come up with a plan for you at this moment in time. Is it worth asking for a second opinion? Have your oncology team concurred with the current plan? We know you’re a strong lady, use that strength to fight if you can, we send you love and as much support as is possible to send via the inter web. Hugs and love lovely ❤️Xx Jane
So sorry Suzanne. My mum had that at one time. She found reflexology worked. Macmillan should be able to organise someone for you that will come to the hospital. Also she stick to juices. Very small meals. She had Carrot juice ate kiwis. Also what helps reduce ascities drink conunut water and dandelion tea. All worth a try. I know she said she just felt so full and so uncomfortable with it. How are you feeling? Did you the drain pain settle.Wishing you the best x
Sending gentle hugs to you Suzanne. Jennyx
Thinking of you and am amazed there's SO much knowledge on this site. You too contribute so much, so often that it's payback time now. I hope you find a suggestion which answers your need and I'm sorry I can't offer anything apart from support and love. Be true to yourself Gina xx
You are such a lovely lady Suzanne and I was genuinely upset to read your latest post. You will be feeling so low both physically and mentally.
Although I can't guarantee for sure that you'll recover from this, what I can promise you is HOPE. This magic word is so important when you're feeling down. Many ladies, including my own Suzanne, have recovered from a bowel obstruction and are leading happy and healthy lives once again. So there is HOPE, that in a few months all this will be a bad dream and you will be enjoying life once again.
The options open to you seem to be surgery or chemo. Like you, my Suzanne was told that surgery was not possible. At that time (3 years ago) we didn't pursue it any further, but I am inspired by Nicky100's story and others who recommend the Greek lady surgeon in London.
My Suzanne was in hospital for 5 long weeks. Her story is briefly as follows:
Weeks 1 and 2 - medics talk a lot but don't really seem to have a plan. Suzanne thinks it's the end.
Week 3 - Suzanne is fed through a tube in her neck ("TPN") and has various IV fluids to keep her hydrated and her potassium, magnesium etc in balance. Vomitting stops as she is "nil by mouth" and her bowel has the chance to rest. Once she stopped vomitting and was being fed by TPN she regained some strength, which was important for the next stage.
Week 4 - medics decide surgery is not an option and weekly chemo starts (beginning of week).
Week 5 - 2nd weekly chemo at start of week. Half way through the week Suzanne's bowel unblocks - I leave you to imagine the awful smell !!
Week 6 - 3rd weekly chemo at start of week, discharged that night. Chemo continues for next 15 weeks as an outpatient in the chemo day unit.
Sorry for the long post Suzanne, but thought it may help you when discussing your options with your consultant. I'm so glad you're not ready to give up and hope that either surgery or chemo will do the trick and you will be smiling and laughing again before too long. Love and best wishes, Woody xx
Hello again Suzanne. Hope you've managed to speak to someone about TPN - it really helps you to regain some strength and if you're "nil by mouth" the vomitting (which is really debilitating) should stop.
I hope you don't mind, but I asked Nicky100 for some advice - please see below. I would be very happy to help further if you want, as I'm sure everything is a real effort for you at the moment xx
WoodyB
a day ago
Hello Nicky, you may have seen that Suzanne333 is really struggling and wondered if you might be able to help facilitate a referral for her (if she agrees) to the LOC or another top cancer centre? She is probably too weak to try to do this for herself and she might appreciate help from someone dynamic like you who has been through the hoops and knows the "ropes".
Hope you are still doing well on your PARP and so pleased you went the referral route yourself x
Reply
Nicky100in reply to WoodyB
2 hours ago
Hibyes of course. Just abroad right now with very limited internet. Will she be reading this thread?
If you could maybe send her these details in case. I would recommend she contact Dr Jonathan Krell at Harley Street LOC, or you can contact him at Imperial in London ( you can google his contact drains). Does she have someone that could phone for her?
She would need to contact them herself or she can get her GP to send them a letter. Easy enough to do and fast if you pay for a private consultation. It cost me to spend an hour with him but it was the best money I ever spent. It depends on how much time you can/ want to wait. I didn’t have time as mine is aggressive.
I hope that helps for now?
I might be out of signal reach this morning xx Nicky
Hi Hun I was told this and prof resectioned my bowels x3 times. Get a second opinion xx
Suzanne I have read your email with such sadness. You ask for ideas. I hope this one doesn’t raise false hope. Ask them about feeding you - Parenteral nutrition. You get fed thru a Hickman line. So although you have multiple bowel obstructions you get food. Then you have time and space to deal with other issues.
Suzanne--are you up to asking for a second opinion? What about reading about what others have done for bowel blockage (based on what is blocking yours?) I have no personal experience to help. Can't give up when there's fight in you. Sending best thoughts and many hugs, my friend. oxox Judy
Sending a big hug Suzanne we are all thinking of you love Clare xxx
What a lot of helpful replies.... you are usually one to reply to many individually so I know you are not in a good place still. There are definitely times when the will and oomph goes out of us and we wonder if we will ever get out of this dark place., especially when the doctors get gloomy and negative.
However many ladies have been there and climbed out, I hope you get some better practical advice and help soon.
Have you someone who is beside you and can support you emotionally through this ? I think that is so important that we don't feel alone . I know you have all of us rooting for you but there is nothing like the physical presence of someone who can literally hold you hand...
Virtual hugs and handholds
Janet x🌈
Hi Suzanne
I just want to add my encouragement to all the positive replies to you. I was particularly struck by the reply from Woody which I hope you read. It was full of hope that there is a solution . My prayer for you is that you will have the same outcome as Woodys Suzanne. Please stay with that hope . We all need your wise words .
XXX
💚💕
Oh Suzanne, I'm so sorry to see your still in hospital I'd been so hoping as I'm sure you were, that you would be home by now.
Please ask for a second opinion, you are young and still up for the fight, there must be someone who can offer some resolution to the bowel problem and help you so that you can continue with the chemo you started last week.
Stay strong lovely lady, sending you huge hugs and lots of love xxxx
Sending love and prayers for Suzanne and Angie. Can't add anything to the above but hope you can get another opinion.
Praying for Suzanne and angie and all you strong and amazing ladies on this site. I have been following this site since my sister's diagnosis in January. Suzanne is simply amazing. Cannot offer any advice but many many prayers from the states. Xoxo nancy
Hi Suzanne
I’m so sorry to read your post. I’ve been a bit out of the loop as have also had bowel problems and pain and been in hospital recently. Can’t believe this for you though, have they said to stop chemo? Have they at least given you steroids to help unblock the hotel obstruction? Sorry if there’s more in previous posts I am missing. You are such a fighter and so much to give, I really hope you can find a way forward.
Mentioned steroids as that is what has helped me just recently. I think I really have exhausted all standard chemos - about 7 or 8 lines i’ve Even lost count! - but my oncologist has written to The Royal Marsden to ask if they have any trials I might be able to access. But currently working on getting stronger and eating more as I had a couple of weeks hardly keeping anything down.
So I know where you are at and I am sending warm hugs and all the vibes I can muster. Keep us posted, love Madeline xx 😘💖 xxx
Sending my love and prayers Suzanne, will pray for a good outcome ,you are such a strong lady......
Loren x
Sending my prayers and positive strength to you both Suzanne and Angie. Please ask for second opinions. You are both too young and vibrant to give up
I hope you can get some alternative advice from a different medical team. Please keep us in the loop xxxx
sending best wishes and positive vibes - keep fighting xxxx
So sorry to hear this. You’ve had lots of good tips already, but I would add, make sure to get the view of a gynaecologist oncologist surgeon, not just a bowel one. They view us OC girls as more than just the bowel bit. That was what has enabled Angela to have her surgery (which I hope she did have yesterday) - the person who looked at her scan. And defo get a second opinion from a different hospital.
Hoping you’re feeling a bit more comfy. Those NG tubes are horrid.xxx
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