I’ve not been here for a while. Was in hospital where they sent me home under hospice care.
I have nurses in daily to do my syringe driver which contains Octreotide. It’s an anti sickness drug. Works most of the time. They drain my ascites every few days too. Last two drains have been worrying as the ascites is like yellow milk. My CNS is going to speak to my consultant about that. I’ve goigled that it can be caused by a blocked lymphatic system.
Had scan in kidneys on Monday. Hoping kidneys are ok as can continue with cisplatin and gem. Struggling with cisplatin though. I feel it’s killing me.
Feel like I ve got full blown flu while running a marathon then getting hit by a train. It’s brutal. Makes me cry. Horrible chemo but it seemed to half my CA125 number.
I’m eating now. Ate a double cheeseburger the other day. In hospital I couldn’t eat a Rice Krispie or drink a sip of water. Im still so thin though. My body is baggy as I’ve lost nearly three stone. Had sausage and mash yesterday but threw it all up. I think that milky ascites makes me feel queasy.
They say my prognosis is poor. Maybe it is but I’m still here. Still fighting.
I’m taking cannabis oil. Don’t know if that’s helping and tastes like I’ve licked an ashtray but I’m sure it’s not doing me any harm. I sleep well.
How are all you lovely ladies? I hope you are all doing ok. Sending you all so much love and positivity. Keep strong.
Xxxxxxx
Written by
Suzanne333
To view profiles and participate in discussions please or .
Hi Suzanne, it's lovely to hear from you even though you're feeling really poorly. There is definitely improvement, you're eating and your CA125 is going in the right direction. You'll be around for a lot longer yet.
You take care and I'm so pleased things are getting better for you. Love Zena xx
We’ve had a poor prognosis from the outset! No change there is there? And you sound in a better place physically, the fact you are eating and coping with regular drains.
Are you hospice at home or in patient? Either way I hope you’ve got plenty of people around to lift your sprits, keepin touch, were all here xxx
How are you doing? I’m not an in patient at the hospice. I’ve been assigned a specialist nurse.
I was told in the hospital that there’s nothing they can do. They told me I would starve to death. Once they put me on this anti sickness drug and drained my tummy, I started to eat. I’m still sick now and then and I’m terribly weak but I’m still here.
Got to keep positive. It’s so hard though at times.
How are you? Are you having treatment still? Xxxxxxxx
It’s so very lovely to hear from you Suzanne, I’m so pleased you’re home and being taken good care of.
I can totally empathise with being able to enjoy food after not being able to eat anything at all, it’s one of life’s pleasures and hopefully you can gain some strength from your food to help counteract some of the horrible side effects from the chemo, It’s really positive that your CA125 has come down I hope it continues to do so but I’m so sorry the chemo is making you feel so poorly, I guess it has to be little a trade offalong the way.
I hope you can continue with your treatment and the kidney scan gives the right results you need.
I hope the cloudy ascites isn’t anything sinister and possibly just a glitch?
Could the sausages have been a little too much for your poor digestive system? I know the burger stayed down but maybe if you have slightly lighter foods you may be able to hang on to them and get the good nourishment you need? I hardly ate before my surgery, I had hypercalcaemia which caused horrendous nausea and vomiting, I ended up 2 stone lighter, I started back on soups and toast etc and slowly built up to bigger meals, it wasn’t easy as I’d got so used to throwing up, I found lots of small portions throughout the day were best for me to get back to eating more normally. I hope you find something that suits you and that you enjoy.
Let us know how you’re doing, it’s so nice to see you again, big gentle hugs and lots of love ❤️Xx Jane
I hope you are ok. You are right about the food. I think I shouldn’t have eaten the sausage. The mash was nice. I’m sorry you had horrible sickness too. It makes you scared to eat. I think I developed a phobia of eating for fear of throwing up. Horrible. !!!
Small portions throughout the day is best. I drink milk and I love tinned peaches and custard.
My bowels didn’t work for two weeks when in hospital but they’re fine now. Hoping I can get strong to take the horrid chemo.
Sounds like you are one tough cookie! I am sure what you are enduring is more than most people could cope with xx so Dig deep and keep fighting xxx as Zena says we will take any improvement no matter how small the steps are, i hope you are turning a corner xx sending you lots of love
I am doing ok thanks had second surgery in January (and chemo) and bowel obstruction operation in june now trying to tolerate niraparib not doing well on those but realise i am lucky to have had four really good years between chemo xx pure lottery! I am convinced a positive attitude helps and the amazing sense of humour some of our lovely sisters provide 💕💕
Good to hear from you -fingers crossed for the scan and that more chemo is on - the side effects sound horrible but if it is helping then needs must. Hoping the ascites issue gets sorted.
Maybe as suggested , start on smaller more easily digested foods - little and often - soup is good and milky puddings. Or just the mash with some cheese for protein.
Thinking of you - not sure I’d have your determination to endure x
Hi sweetie. I was so pleased when the alert came up that you had posted. You went all quiet a while back and I feared that you were in a very dark place. You sound brighter now but of course you are still poorly. You have been in my thoughts a lot. I really do hope things improve soon. You may have noticed that I've also been in the wars. But, on the mend now. I'm just about to start thinking about my final episode of Holby Shitty as I'm outta here tomorrow. I hope it can make you smile.
I'll be watching you. Lots of love and hugs xxxxxxxxxxxxxxxxxxxxxx
The bast**d who said that to you should be strung up by their earlobes and left dangling above a railway line to rot. If anyone ever says that to me they will be dead long before I am. It's evil, wicked and heartless. No wonder you and Antony were in a bad place. Nothing is over until it is over and until then you continue to buck the trend, make memories and enjoy every second together. Some people won't get home from work tonight. We are the lucky ones. xxxxxxxxxxxxxxx
Good to hear from you Suzanne. I’m on Cis /Gem too. I’ve only had two doses so far, haven’t yet had your side effects but you have other things going on too. Hope the kidney scan results are good to go because this chemo should really help the ascites. Are you on the two weeks on, one week off cycle?
Perhaps smaller lighter meals might help. Not sure I’d manage sausage and mash or beef burgers.
Hi Suzanne, it’s good to hear that you’re still fighting on. The advice from all about eating little and often is sound, but sometimes temptations are very strong! I guess you can eat what you want - peaches and custard sound yummy.
I hope the hospice folk keep on top of your pain relief and other needs - keep going with the chemo if you can.
I have been looking for an update from you Suzanne and although it sounds rough, its better than it was--ca125 down and eating. Agree with food advice above--just make sure most of what you can eat has high protein and/or high calories as regaining your strength may make the chemo more tolerable all around. Cisplatin is a harsh one but from what you say (and others) quite effective. Here's to you getting stronger, feeling better and tolerating the chemo more. So sorry you have been in a dark place but hoping a daily improvement --which it sounds like is happening--will lift your spirits. We're here for you too, for the good, bad and ugly! Hopefully mostly good. oxoxoxo Judy
Hi Suzanne, we were so pleased to hear from you and that you are still fighting despite having the worst time imaginable. Agree with others about smaller lighter meals, as frequently as you are able. Good idea to add cheese to the mash, also baked beans now that your bowels are OK.
Not sure if you've had two rounds of cisplatin or just the first? It sounds a really harsh chemo and we hope beyond hope that your kidney scan is OK so you can carry on. Some of the lovely ladies on here had cisplatin many years ago and it's now just a bad dream, so hang on in there and get that corner turned. Sending lots of love, Woody & Suzanne xx
So pleased to read that you are even slightly better than you were. Not sure about Thai curry at the moment but agree with Lyn about energy drinks, you need to build up your strength to tolerate the chemo. Have they put you on steroids? - they might also be good for fattening you up for Christmas!
Feel guilty saying it when you're going through such a tough time, but my Suzanne is doing really well. Just had good (no change) scan result and been on olaparib for almost a year now. She's determined to follow in the footsteps of Kathy "Katmal".
I believe Kathy was written off many years ago (almost in the last century!) then couldn't tolerate carboplatin, then endured cisplatin but came out the other side.
I think she's been on olaparib for around 5 years now without recurrence (how wonderful, and long may that continue), so you just need to align yourself with Kathy's stars and you'll be right as rain and off to Spain!
Whilst writing about Kathy, isn't she brilliant giving so much support on this site when she could say, well I'm fine now, I'll not remind myself about how bad things used to be? Well done Kathy! xx
Aww I’m so pleased your Suzanne is doing well on olaparib. I want to be able to get to the PARP stage. I hope she has many many years on it like Kathy. 👍🏻👍🏻
I got a letter today about PIP. I automatically get the enhanced rate and this is because they don’t expect me to live longer than six months. This upset me. ☹️
I’ll have to prove them wrong. I’ve never asked how long I have. I don’t want to know.
Hi Suzanne, don't worry about the PIP letter. My Suzanne had the same thing last year with attendance allowance. I think lots of cancer patients get the same - maybe anyone who has had a recurrence? Once you're better just enjoy spending it and prove them wrong. Don't suppose you'll bankrupt the country.
I've had a quick read of the Christie booklet and it says you're allowed to eat Thai curry, so enjoy! xx
Hello again Suzanne. Here's a link to another Christie booklet that you may find useful.
"This booklet offers advice on ways to alter your diet at a time when you are concerned about loss of appetite, losing weight or because of eating difficulties. This may be because of your disease or because of the side effects of treatment. Eating can be a problem when you feel unwell. It may be hard to be enthusiastic about preparing food or eating it. For people having treatment with chemotherapy or radiotherapy, it can be even more of a problem."
Great to hear from you Suzanne... I am sorry that you are having a hard time of it, you are definitely one tough cookie! Hopefully the chemo will give you some respite and help your appetite xx
Hi lovely lady it’s so good to hear from you again, you have been missed and thought of a lot x
Sorry you’ve got horrible side effects but sounds like the cistplatin is zapping those buggers! I so hope you can build up your strength and keep on keeping on!
I Lol with the hamburger, after weeks of not eating I’m surprised that didn’t get stuck down there but can imagine how good it tasted 😂
As well as little and often I would recommend you fortify your food so put double cream and butter in your mash, a spoonful of whole milk powder in your cups of tea, cheese grated over your savoury food etc etc it adds extra calories and protein without too much bulk! Nows the time to be naughty and eat all the things we are told are bad for us so if you fancy a cream cake go for it!
You are such a trouper Suzanne we are all routing for you and after the horrible way you were treated in hospital, go poke them in the eye and prove them wrong!
Lol only dressed as a ghost!! Think we should all get together for Halloween the way this beast and the treatment leaves us all looking we would make great trick or treaters xx
Glad the tips might help with you gaining some strength and weight xx
Keep up your spirit lovely lady and keep us posted when you feel up to it xx
Hi Suzanne. Good to hear from you. I agree Cisplatin is very harsh (having had it now that I can no longer have Carbo - wow that's something to look forward to on the next recurrence!) but the plus side the CA125 is going in the right direction! They said my prognosis was poor at diagnosis - still here.! Sending you a big hug. Kathy xx
Thank you. Yes I’m hoping it’s doing the job. It seems to be so I’ll keep with it even though it’s incredibly tough and if I’m allowed to have it depending on my kidney scan results.
I think their plan is to get a response enough to get a PARP. Fingers crossed.
Thank you for your update. I was getting worried about you again. I'm sorry times have been so tough for you. I hope your kidneys can carry on and that the chemo continues to knock back the CA125. Once you have got a bit of strength back, I'm sure all of this will be a terrible memory. It's funny how quickly we can go downhill, but also how quickly we can start to climb back up.
Yes we can be knocked for six and then pick up again. I’m hoping I’ll be ok. It’s tough though. I r had nights where I didn’t want to wake up in the morning as I felt so awful but I’m feeling better than I did.
I'm so glad to hear from you Suzanne, oof. That's quite a package to bear though, and it sounds like a massive amount of work to get through, at the moment.
I don't think you have to be cheerful every day. But if you could manage to grit your teeth and get to the other side of the cisplatin treatment, plus carefully/gently continuing on the eating and maintaining strength path, that's what I would wish for you right now.
Hopefully you'll feel better and manage to gradually introduce more of a normal life into your days again once the treatment rounds are done (also hopefully resulting in a stable disease and tolerable tummy/bowel state). As was said already, we're rooting for you, girl! Please keep posting whenever you are able and feel up for it. Hugs, Maus
Thank you. It’s been very tough. I’ve not wanted to go on at times. I’ve cried a lot as I’ve never felt so ill in my life. I’m a bit better now. Very weak still but getting better.
I am so happy to hear from you! As Vicki said I was worried as we hadn’t heard from you lately. Well I am delighted the Ca125 is going down and glad you are able to eat now, those are two big positives. I am sorry you have been through so much pain though and that the Cisplatin is so tough. You have a wonderful positive attitude though and a strong life force in you so please keep going! I hope all the ascites reduces soon with the chemo.
Sending you lots of love and strength lovely and brave lady. Sophia xx
We are all glad to hear you are still here, always a worry when a regular poster goes quiet... hope onwards and upwards for a while at least ...
I know sausages are not the most healthful of foods but sometimes.... with mash and gravy it is one of the nicest comfort foods ... I am having two tiny chipolatas with mash, gravy and carrots tonight , there is so little I fancy at the moment that I reckon any food is better than none. Fresh Stewed Apple with cinnamon and a little maple syrup with Greek yoghurt is my default dessert at the moment...
One thing I do now is eat very slowly , chew to mush and swallow small mouthfuls. Seems to help a lot with the digestion I find...
Hi Suzanne. Good to hear from you but sorry to learn what a tough time you’ve been having. I’ve no good advice to add to our experienced friends but just want to send you love and positive vibes as you build your strength for cisplatin which as others have said is very harsh, brutal even, though effective so worth it (that message is to myself too as I have number four of six doses on Friday🙂). Jo 🌺🌼🌸🌻🌹
Hi Suzanne , so glad to hear from you , have been thinking of you often .Build yourself up slowly and fight on .sending positive thoughts your way xxJulia
Thank you. Yes I’m eating a bit more each day. My goal is steak and chips. Lol. Don’t think I’ll manage it but can dream.
I seem to crave cold foods. I like ice lollies.
I hope you are doing ok. Sending lots of love and hugs xxxxx
Hello Suzanne - lovely to hear from you, I was wondering yesterday how you were. Could you tolerate com-plan or some other build up type drink? I do hope you begin to gain strength as it will help you fight the B*****D. Wishing you all the very best Lyn xx
It’s great to have an update especially one that sounds so positive. Double cheeseburger? 😋 yum yum once the tastebuds are tickled I think the eating follows. I still look like the Michelin man 😳
It definitely sounds as if you are more comfortable too and I think that’s half the battle.
Without a fully functioning crystal Ball I’m not sure they can say too much about prognosis. It is after all 16 months ago since they wrote me off and despite it all I can see Sarah Millican in the distance. Keep the faith 🥂
You’re right. They write us off but we stay around for a lot longer. They shouldn’t say anything. I’m glad you are doing ok. You will see Sarah Millican and then perhaps plan to see her again.
My goal is to go for a weekend to Spain next April with one of my friends.
It’s so good to hear from you Suzanne and to know you are making such progress. You have had some great replies with lots of good advice and I agree with all of them. The one thing I was going to add was food supplements which Lyn mentioned but you are already ahead of the game there with Complan. There may well be others out there I havent heard about . I am on the opposite end of the scale with excessive weight gain despite a fourth diagnosis ! Some of it is down to Aromatase inhibitors .
I hope it continues to go well for you and that you can continue with your treatment with very little side effects . We did miss you and thanks for reassuring us all.
Thank you for your message. I’m sorry to hear of your fourth diagnosis. Keep strong and positive. I’m on fourth line. Went from third straight into fourth.
Hi Suzanne, so pleased your hanging on in there, it must be good to be able to eat again, even if it is just a little of what you fancy. Keep up the fight girl.
Your obviously made of strong stuff to get this far after all you’ve been through in the past few months.
I don’t know how I got through some days. Sometimes I didn’t want to wake up in the morning. I’m better than I was but still very weak and shaky. Guess I’m going in the right direction. Fingers crossed.
I hope you are doing ok. Sending lots of love xxxxx
Hello my dear friend, so nice to hear from you. I was getting worried as we haven't heard from you. Glad you can tolerate some foods and drink something. Best if you could do that even just sips at a time. Lots of small portions probably the best for foods. Praying that you continue to be well again, I missed your texts full of positivity. It always makes me smile.
Sending you big hugs my lovely friend. You know where Iam if you need help. Don't forget we're now neighbors. Xxxx❤️❤️❤️
Hi Suzanne yes I'm getting settled in our new home. I've been taking niraparib 3 weeks now. The side effects is headaches & dizziness but I take paracetamol for it and also anti sickness tablets. I developed high blood pressure as well which my GP prescribed 2 days ago on a very low dose, otherwise I'm ok. Please keep us posted about your development if you can. Take care. Xxxx
Have been wondering how you are. Sounds like you've had a grim time but here's hoping you're regaining strength and there's sunnier times ahead. Love and grit to you and hubby. Sandra x
I'm so happy to read your update and have been wondering how you're doing. Sounds as though you've had a tough time but have turned a corner. I know the cisplatin is meant to be a tough one but stay strong as it's bringing your numbers down so you're heading in the right direction. Hopefully you'll start to build up strength, regain some weight then get on a PARP at the end of chemo.
Get plenty of rest, eat lots of nutricious food, and keep that end goal in sight, you're a tough lady! I'm sending you tons of hugs and get well wishes and am thinking of you,
As I keep up with these posts for my sister, dear Suzanne I wish you strength and hope. Hete in the states we have protein drinks called ensure and boost protein so important for you to consume. Xoxo nancy
So sorry you are feeling so poorly - I have read that cisplatin is pretty severe but it does seem to be doing its stuff. At least you are home- fingers crossed for a good result.
Your strength and story are inspiring. I hope it can feel well and keep up the fight. Coukd the yellow ascities be an infection? Can you share any more info about how you use the cannabis? All the best. 🍀
A rice grain pushed in milkway or mars as it’s like tar and taste disgusting 😭 swallow quick , to much and you can get low blood pressure! Slowly build up 😘😘
Hi Suzanne, y are giving such strength to all of us on our journey. I am on cisplatin but it is a harsh chemo. It is good y are home. Stay positive and sending y best wishes. Julia
Hi Suzanne. I don’t post here often but I like to check in and chime in if I feel I have something to offer. Not hearing from you for a while, I was concerned. It’s good to hear from you though sorry to read you’re having such a difficult time. Dealing with recurrence / progression has been taking most of my energy lately. I’m sending you big gentle hugs and best wishes. Dee
Been thinking of you and wondering how you are, so glad to see your name come up. Even though you are going through a horrid time. Cisplatin is brutal but if ca125 has halved that’s such a positive for you to hang onto! Good you are managing to eat too just steer clear of the sausages!
I’ve not had energy to do an update recently I am on a liquids only diet after bowel obstruction but still get pain, not sure what my next step is.
You keep inspiring us with your attitude and how you keep looking to the future, keep going lovely lady. 💖. Lots of love & hugs, Madeline. Xxxxx
Bless you , try pushing oil into milkway and swallow quickly, small pieces! I gave mine tia friend and have just had s messages to say ! Spread has stopped no more growth! Which is amazing as it was every where! So I think it’s having an impact on her cancer ! Let’s us 🙏
Your far from done girl you keep kicking it’s ass! Sending more flowers 😂 💐💐💐💐💐💐💐💐💐💐💐
Hey you, so glad to hear from you. Sorry things are still tough tho 😪. I'm hoping the scan comes back good and you can have more chemo & get kicking it's butt!! Good that you are eating more aswell, long may that continue. Xxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Still here...
