Draining. Again. : Hi lovely ladies. Went to A... - My Ovacome

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Draining. Again.

Suzanne333 profile image
102 Replies

Hi lovely ladies.

Went to A and E yesterday. Felt so rough. Tummy swollen badly even though I was drained 10 days ago. Was supposed to have chemo but felt too rough to go.

They treated me with intravenous antibiotics for suspected sepsis but that was precautionary. They did chest X Ray, ECG and blood thinning injection for suspected lung blood clot. I don’t have a blood clot. My breathlessness is due to the ascites. They’re draining me again today.

The Doctor on the ward told me that my CT scan results show my cancer has progressed. I’m on weekly taxol.

They’re sending an oncology team to speak to me today.

The doctor asked me to sign a Do Not resuscitate form as in her words - it wouldn’t be advisable to bring me back due to the advanced cancer I have.

Talk about write me off. I’m scared now. She made me feel there’s no hope.

Any thoughts? I’ve only had taxol and carbo but can’t have carbo anymore due to allergy.

There must be something else they can try.

Thank you and hugs lovely ladies xxxxx

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Suzanne333
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102 Replies
Petrolhead profile image
Petrolhead

Hi

Your experience shows just what a shit disease this is. As for the ward doctor words fail me.

The oncology team are the ones to talk to.

Here is hoping the drain will help with the discomfort.

Thinking of you.

Fay

Suzanne333 profile image
Suzanne333 in reply toPetrolhead

Thank you. Yes the ward doctor needs lessons in communication. Horrible she was. Basically wrote me off.

I’m hoping the oncology team don’t give me bad news. Surely there’s a plan they have to help me.

I’m quite scared now.

I hope you are doing ok.

Hugs xxxxx

Maus123 profile image
Maus123

Sorry to hear that the ascites still causes a lot of discomfort for you, Suzanne. As Fay said.. I would think the only ones to comment on scan results are specialist radiologists and oncologists.

Don't put too much store in the ward doctor's words. Unbelievable.

Surely there have to be other chemos or trials to try. Hope the discomfort will lessen soon and sending lots of hugs and good vibes. Xx. Maus

Suzanne333 profile image
Suzanne333 in reply toMaus123

Hi Maus.

Yes. This Doctor is a Doctor on the medical assessment ward. She doesn’t understand cancer or how to speak to people with it.

I thought she was going to put me in the hospice. She really wrote me off.

I’m hoping oncology team can give me some positivity as I’m scared now. Hoping you are doing ok

Hugs xxxxx

SCWI profile image
SCWI

Dear Suzanne

I am so sorry you are going through this. I am hoping the Oncology team have a better treatment plan for you. Could you ask about surgery? There are SO many different and powerful chemos out there to try. I am horrified the ward doctor is saying these things to you when it sounds like you are on your own and vulnerable.

Sending you love and positive energy. Hope you feel better after the draining, it was a relief when I had it done after diagnosis. Gentle Hugs, Sophia 🌸

Suzanne333 profile image
Suzanne333 in reply toSCWI

Hi and thank you Sophia.

I’m so scared they’re going to say they can’t do any more for me but I’m sure they can. They must be able to. I will ask about surgery. I’m happy to have surgery.

I might even get some of that illegal cannabis oil. The doctor was horrible. She kept asking me if I knew exactly what was wrong with me. She scared me. She was rude too.

I hope you are doing ok.

Big hugs xxxxx

Emalou71 profile image
Emalou71

Oh my you poor thing, damn disease!!

I hope you get drained today and get the much needed relief, I wonder due to how quick the fluid built up if they would fit you an internal drain? Mine came back after a week of being drained and they said it was an option?

The oncology team should be able to help here..

Can you ask for a referrers to the Christie, Marsden or addenbeookes where trials are going to get some additional help?

And the stupid doctor well I know what I'd of said to him....!!

Sending you a huge hug and positive vibes xoxo

Suzanne333 profile image
Suzanne333 in reply toEmalou71

Hi and thank you.

I e heard of internal drains. I’ll ask. I might need one.

I could ask for a referral to the royal marsden. I feel scared as the doctor made me feel I was on my way out.

Sending you a huge hug back. Lots of love xxxx

Emalou71 profile image
Emalou71 in reply toSuzanne333

I can only imagine how he made you feel you poor thing as if it's not frightening enough being in hospital, I would have the conversation with the oncology team and explain how scared you feet in light of this doctors comments. I know they have a job to do, however they don't know you, and being so poorly upon arrival hearing that could of had a detrimental effect on you & he needs to understand that.

I hope they can get you a referral for a trail. Try and rest this morning, it's not easy sleeping in hospital especially with ascities but if you can at least get some rest it may help xxxx

Suzanne333 profile image
Suzanne333 in reply toEmalou71

Thank you. It was horrible hearing all the doctor was saying. I was so scared. It took me back two years to diagnosis. A doctor told me then - prepare yourself for the worst. He meant prepare yourself for cancer but I thought he meant I was going to die. I had to have sleeping tablets every night and was beyond terrified.

They need to learn to be a bit more positive.

I hope I can get on a trial or a different chemo. They must be able to help me. I’ve more fight in me. I won’t let them give up on me.

Hate this bloody disease.

Sending you a big hug xxxxx

in reply toSuzanne333

Doctors!! When you feel up to it, you should put in a complaint. I am under the Marsden and the care and treatment are excellent, please ask for a referral asap, dealing with a Cancer diagnosis is bad enough you don't have to put up with Ward doctors who have no bed side manner, and blatantly don't know what she is talking about!! Good luck with the draining hope you feel better soon..............you will I am sure! Lyn x

Emalou71 profile image
Emalou71 in reply toSuzanne333

The doctor has no idea about your disease or the detail in which you are being treated, so for her to make such comments is awful and no surprise you were scared! In May I ended up in A&E for exactly the same thing as yourself, I was obviously frightened and in a lot of pain. The A&A team were great and I was very well looked after throughout my stay excpet when I got on the ward a Doctor came round and long story short, patted my hand, shook her head and said I'm not sure there's much we can do for you apart from a drain to make you more Comfortable..... I very politely informed her my oncologist would disagree!!

Upon telling my onc about the Doctors attitude she was livid, and really concerned about the mental effect that could of had on me. As my onc said she still has treatment options, so this doctor should never have commented!!

I hope you've seen your onc team now and have a plan in place or at least some referral options ready to kick its butt!!!

Xxxxx

Suzanne333 profile image
Suzanne333 in reply toEmalou71

Hi

These bloody doctors. Writing us off. What if our mental state was really poor and we were told all this? We could think- what’s the point and try and end it. That could happen.

I’ve seen my consultant. He’s going to try cisplatin. I felt positive as soon as I saw him. I know he’s really trying to help me. I’m going to refuse to speak to any doctor about my cancer and insist it’s only my consultant I’ll talk to.

I hope you are doing ok now.

Sending you a big hug xxxxx

Emalou71 profile image
Emalou71 in reply toSuzanne333

That's great news your onc has a plan and a new chemo. When do you start?

I'm hoping you are feeling better today and your tummy is drained, also hoping your home xxxx

Lily-Anne profile image
Lily-Anne

I’ve signed a DNR they went through it with me. It’s only in the event of heart failure which would mean brain starved of oxygen and the result being not the same person. I’ve gone along with this. They said at the end of the day the medic in charge has the final say no matter what. This was in May when I had sepsis.

I really feel for you stuck in hospital even though you must get some relief from the drain. Im staying in bed as long as I can today. I have to be up to let the Cleaner in just after two.

Don’t feel written off they are just following tick box procedures. I was given an NHS care plan book to fill in worth asking if you don’t have one

Good luck today

LA xx

Suzanne333 profile image
Suzanne333 in reply toLily-Anne

Hi Lily Anne.

Thank you. It’s made me feel better that they’re following procedures. The doctor did it in a way which really scared me though.

I don’t like being in hospital. Didn’t sleep a wink last night.

I don’t blame you for staying in bed. I hope you have a lovely restful time.

Sending you a big hug and hope you’re doing ok. Xxxxx

Lily-Anne profile image
Lily-Anne in reply toSuzanne333

I really don’t like hospitals yet I used to trust them completely. Funny how experience changes things. I’m feeling frustrated that I struggle to move about at the moment and that my health is declining. Thinking about a radical diet 🤷‍♀️

Was looking at funeral readings. How depressing are they. Makes it sound gloomy instead of uplifting. Suggested to hubby we train for a marathon with him pushing my wheelchair, he thinks Im trying to finish him off lol

Hope you get some sleep

Xx

Oh Suzanne, I’m so sorry to hear that you are feeling so rough hun. Please don’t listen to anyone but your Oncology Team, that ward doctors behaviour was very inappropriate.

Stay strong lovely lady, sending massive hugs, lots of love, Marian xxxxxx

Suzanne333 profile image
Suzanne333 in reply to

Thank you Marian.

I hope I don’t see that doctor again. She was very rude too. I’ll throw something at her.

I hope you are doing ok. I’m sending you loads of love back. Xxxxxx

Yoshbosh profile image
Yoshbosh

Hi Suzanne,

What an insensitive ratbag the doctor was! I’m sure your own oncology team will be able to suggest something, or will be more than happy to refer you to one of the more specialised cancer centres.

There are so many clinical trials out there at the moment (and still some ‘mainstream’ chemo options). I signed the consent form for two more trials last week, and I’ve only just started my first one!

Thinking of you, lovely lady.

Vicki xx

Suzanne333 profile image
Suzanne333 in reply toYoshbosh

Thank you Vicki. You e made me feel better.

The way the Doctor spoke to me, I thought she was going to tell me I’ve a week left to live. She was that negative. She was basically saying - you do know you’re going to die. Terrible attitude she had. Scared me.

I’m hoping the oncology team can come up with a plan. Feel in limbo. I need this hernia sorted too as I’m barely eating. I need my strength.

I hope you’re doing ok Vicki.

Sending you loads of love xxxxx

Kryssy profile image
Kryssy

Oh my lovely girl. What a shit doctor you had. No wonder you are scared. Don't worry because as the girls say, there's heaps more treatments out there. Next time you see that bitch doctor tell her what a cow she is. She needs to realise she is dealing with people, not dummies. Don't be scared (easy to say). We are all here for you.

Love and hugs xxxxx

Suzanne333 profile image
Suzanne333 in reply toKryssy

Hi Kryssy

Thank you. She made me feel awful. I was so scared. I’ll chuck my sick bowl at her. When it’s full.

Some Doctors have no clue.

She made me feel hopeless.

I’m feeling a bit more positive thanks to yourself and all the lovely ladies here. You all are so knowledgeable and supportive.

I hope you’re doing OK Kryssy.

Sending you love and hugs xxx

Kryssy profile image
Kryssy in reply toSuzanne333

I'm fine. Having me time with my friends but had an emergency yesterday when girlfriend, Anne, looked as if she was having a heart attack. Sensible Kryssy kicked in and called the pompiers, yes our lovely firemen are our paramedics!, and they whisked her off. Thankfully it was arrhythmia caused by stress - not me related - and she's home with more tests to follow. We are going on a retail therapy trip this pm so that will sort it.

You take care my darling. I'll be thinking of you. Xxxxxxx

Suzanne333 profile image
Suzanne333 in reply toKryssy

Oh no. That must have been scary. I’m glad she is ok. I think retail therapy can help with almost anything. Treat yourselves.

Sending you lots of love xxx

ShropshireJo profile image
ShropshireJo

Sending you a hug Suzanne after your awful experience with that doctor. From all the info we’ve gathered between us here, there’s got to be plenty of other drugs the Oncs can try. Sending lots of love Jo and lots of 🌺🌼🌻🌻🌹🌺🌼🌸🌻🌹

Suzanne333 profile image
Suzanne333 in reply toShropshireJo

Thank you Jo.

You lovely ladies are a lifeline. You’re all so supportive and I don’t know what I’d do without you all.

I hope you’re doing ok.

Big hugs xxxx

ShropshireJo profile image
ShropshireJo in reply toSuzanne333

That is the greatest blessing of our community. We reach out to help in any small way we can and it does help so much to know that others really understand and that we can seek support when we need it too. Am doing ok, thanks. About what I’d expect five days post chemo, ie being very idle😴xxx

Suzanne333 profile image
Suzanne333 in reply toShropshireJo

We do and the help is priceless. I really don’t know what I’d do without this group.

Aww I hope your chemo is going ok. You deserve to have a nice rest. Love and hugs xxx

dryden1 profile image
dryden1

God Suzanne, What a horrible experience, I cannot believe how dismissive the doctor as been. Keep believing, that the A team will come up with a good plan not only to relieve the symptoms but also to reduce the tumours. I WISH I Had a magic wand but alas all I have to give is my heartfelt best wishes. Love Chris

Suzanne333 profile image
Suzanne333 in reply todryden1

Thank you Chris. I’m hoping they have a plan for me. I’m keeping fighting.

I hope you are doing ok.

Hugs xxx

Lewisriley47 profile image
Lewisriley47

Sorry to hear that you had such a dismissive attitude from your doctor, obviously she was having a bad day. I hope that you get drained again when you will feel so much better and then get your fighting head back on! As the other ladies have said there are so many drugs available now that they can throw at this bloody cancer. Stay strong and positive Pam x

Suzanne333 profile image
Suzanne333 in reply toLewisriley47

Aww thank you Pam. I’m keeping fighting.

They’ll get me a plan and I’ll bash this beast back down.

I hope you are doing ok.

Big hugs xxxx

Lewisriley47 profile image
Lewisriley47 in reply toSuzanne333

I am good at the moment I have a scan on the 20th and all being well I am to go on nicraparib for maintenance, so watch this space. Take care of yourself Pam x

Suzanne333 profile image
Suzanne333 in reply toLewisriley47

Good luck with the scan. Let us know how you get on. I’ve heard great things about niraparib

Big big hugs xxxxx

January-2016-UK profile image
January-2016-UK

Good luck with the drain and I hope the oncology team are a lot more sensitive. There are other things to try, including trials. Good luck today!

Suzanne333 profile image
Suzanne333 in reply toJanuary-2016-UK

Thank you so much. I’m keeping positive.

I’m sure they’ll find something to keep me here longer. I’m not going anywhere.

Love and hugs xxx

coksd profile image
coksd

Hi Suzanne sorry to hear you are sick again this disease is just so horrible and the ward doctor has no right to be so rude or compassionate to you I think some of these doctors have no human feeling whatsoever it so horrible, my oncologist is the same he made me feel on diagnosis that I was going to die in weeks he said give up your job go home and spend time with your family,Would there be another drug they could put with the taxol, have they tried immunotherapy or would it be an option, I don't know why exactly they mentioned the DNR if it is procedure from my experience with my dad who had been sick for 10 years anytime he was in hospital with infections we would be asked that and he was obviously older . I remember even at the start of chemotherapy signing the forms that stated it could ultimately result in death but these are standard forms it is upsetting all the same, Speak to your oncologist and ask about other chemotherapy's, trials, hormone therapy, I have rising CA 125s so need to be re-scanned and going to ask about letrozole with avastin. another promising drug is pembrolizumab immunotherapy I know its expensive and they need to have a good case to get you on it I live in Ireland. I hope you get to see your team soon Take Care Clare xx Sending positive energy to you

Suzanne333 profile image
Suzanne333 in reply tocoksd

Thank you for your reply Clare. Your message has made me feel more positive.

There are drugs out there. They try the cheapest first I think.

I hope you are doing ok.

Big hugs xxx

BeeWild profile image
BeeWild

Aw Suzanne what a bitch of a doctor!! She really does need to learn how to speak to patients and how to deal with oncology patients in particular! Who does she think she is.......god?? This kind of attitude really makes my blood boil! For now get your drain and get comfortable again ascites is just the worst and then get your fighting knickers pulled up tight and make a complaint about her attitude, she really needs to learn how to deal with patients sensitively!

Please ask the ward staff to get hold of your oncologist and for them to come see you ASAP! A referral for a trial sounds like a great option or even trialling a different combination of chemo but there will be other options!

Sending you much love and hugs and fingers crossed your team will have had their thinking caps on and have a solution for you xx

Bev x

Suzanne333 profile image
Suzanne333 in reply toBeeWild

Aww thank you Bev. She was a horrible doctor. I think I will complain about her.

They’re going to sort my ascites then hopefully I can eat to get strong to then go to battle with the beast again.

I’m sure they’ll have a plan for me. If not I’ll ask for a referral to Royal marsden.

Hoping you are ok.

Hugs xxxxxx

Neona profile image
Neona in reply toSuzanne333

Please complain- it will protect others from her ignorance.

SCWI profile image
SCWI

Hi Suzanne,

Hope you are feeling a bit more positive now the ladies have given you some advice. I think you should definitely get a referral to the Marsden or Christie if you can get to one of them regularly or get their recommendations and they will guide your team. I do this via a Professor at the LOC who writes to my onc, this is how I have managed to get Olaparib after he suggested tumour testing. You sound strong and determined to me (despite the beastly ward doctor throwing shitty comments at you.) Is there a friend or family member who could come and be with you and help you through this? I wish I could be there for you.

In case it helps, if I am scared or stressed I do yoga breathing:

Lie on your back and shut your eyes or recline with head supported. Through your nose- breathe in, breathe out, take a long slow deep breath for the count of 8, hold for the count of 4, let the breath out long and slow. Repeat until you feel calmer and focus only on your breath. Not mumbo jumbo, it really works.

Let us know how it goes with the Oncology Team. Positive vibes lovely girl. xxxx💕

Suzanne333 profile image
Suzanne333 in reply toSCWI

Hi

I feel a bit more positive as I’ve seen my consultant. He wants to try cisplatin. It’s risky as I had an anaphylactic shock with carboplatin. I know women who can’t tolerate carbo but they can cisplatin. I’m willing to try.

At least he’s not written me off like the doctors here.

I’m going to do your yoga breathing exercises.

Sending you hugs and hope you’re doing ok xxxxx

SCWI profile image
SCWI in reply toSuzanne333

So happy your oncologist has a plan for you sweetheart. Hope you’ve had The draining and feeling better and more positive. We are all behind you 🤗🤗💕xx

Jackie0 profile image
Jackie0

Absolute total and insensitive bitch!

Unbelievable that a professional can treat you in such a way, especially when you are at such a low ebb!!

Often wrong in their predictions!! Feel sure that once the ascitues clears you should improve hopefully.

Sending you strength and spirit!!

Much love Jackie O xx

Suzanne333 profile image
Suzanne333 in reply toJackie0

Thank you Jackie.

I know. How can they talk to people like that. I’m not a lump of wood.

I’m hoping they’ll drain me soon. It’s going to be tricky as I have lots of pockets of fluid and they’re going to put in a permanent drain. Need it doing though, I’m getting fatter everyday.

I hope you are doing ok.

Big hugs xxxxx

Lizz49 profile image
Lizz49

Dear Suzanne

I’m so sorry to hear you’re having a rough time at the moment, and there are no words for the insensitivity of that so called doctor! Talk about poor bedside manner!

As the other ladies have said there are tons of chemo options out there and different things they could try, I hope you get to see your onc team soon who I’m sure will come up with a strong plan for you.if you dont feel satisfied with them then a second opinion at a specialist cancer hospital ie Royal Marsden could be the way forward, I hope your ascites settle after the draining and that you got some rest and feel comfortable soon, sending huge heaing hugs your way 💕💕💕

Liz Xx

Suzanne333 profile image
Suzanne333 in reply toLizz49

Hello Liz.

Thank you.

Yes bloody horrid doctors. Writing me off. Hinting I’m not going to be around much longer.

There are other options and I saw my consultant yesterday. He wants to try cisplatin. He says it’s risky as I had the anaphylactic shock with carboplatin but I’m willing to try.

If all fails, I will ask for a referral and I’ll get some cannabis oil.

Sending you lots of love xxxx

Jessica-DianeB profile image
Jessica-DianeB

Oh Suzanne, this makes me sad but very angry, the Dr isn’t your oncologist. Please have hope until you speak to your onc.

I was recently admitted ( see post ) and they assumed I was at end of life care and receiving no more chemo, I told them I’m palliative and hoping for more chemo!! They don’t know enough about ovarian cancer, I pray this is the case for you and something can be done to salvage your presumed situation. Ask for the palliative care team, I found them lovely to discuss my fears with. Sending much love xxx

Suzanne333 profile image
Suzanne333 in reply toJessica-DianeB

Hi Jessica.

I’m sorry you experienced similar. I think the doctors do assume that we are on our way out. They certainly don’t know enough to give their opinions and prognosis. I’m refusing to speak to any more doctors. I’ll only speak to my oncologist.

I hope you are doing ok now lovely lady.

Big big hugs xxxx

Caroles1 profile image
Caroles1

Don’t be scared sweetheart, I had ascites and its bloody awful, I am hoping your oncology team have put your mind at rest now, since there are so many other treatments on offer.

She was just a doctor who knows a little about everything, with a personality bypass. What goes around comes around, let’s hope she gets written off too in the near future.

We are all here for you and wish you the best outcome,

Lots of love,

Carole xxx

Suzanne333 profile image
Suzanne333 in reply toCaroles1

Hi Carole.

You are so right.

Stupid doctors. Have a tiny bit of knowledge on huge range of illnesses but certainly don’t know enough about cancer. I’m not talking to any more doctors. Only my consultant.

I hope you are doing ok now.

Sending you a big hug. Xxxx

Caroles1 profile image
Caroles1 in reply toSuzanne333

I’m good love and I’m sure you will be shortly,

Carole xxx

Alifit profile image
Alifit

I am so sorry, Suzanne, that you have had this horrid experience. A and E doctors aren’t specialists, so have no business to make judgements about your condition without the correct information - their job is to get you through a crisis. The business of a DNR may ‘just be procedural’, but requires a huge amount of sensitivity and patients need to be given time to absorb the information given. I should talk to your Consultant and team so they know what you have had to go through.

In the mean time, as all the ladies have said, there is loads out there still to help.

I hope you feel better soon - I’m sending all my love and best wishes to you. Ali x

Suzanne333 profile image
Suzanne333 in reply toAlifit

Thank you Ali.

You are quite right. Stupid doctors. If they don’t know the complete facts then they shouldn’t comment. I’m not speaking to the doctors anymore. Only my consultant.

I hope you’re doing ok. Sending loads of love xxxxx

caf132 profile image
caf132

arggg.....Suzanne-don't give her any credence. She needs training in people skills and empathy. i am so sorry you are in so much discomfort. hopefully the draining will give you some comfort so you can deal with the cancer team. Perhaps there is a trial you can get into. fight like a girl-we are all behind you.

Love, Carol

Suzanne333 profile image
Suzanne333 in reply tocaf132

Thank you Carol.

I’m still fighting. I’m not giving up on me. Bloody stupid doctors. They should come into this forum. They’d learn a lot more about ovarian cancer.

Sending you a big hug xxxx

ZenaJ profile image
ZenaJ

Well we're not writing you off Suzanne. Wait till you hear what the oncology team have to say. Sometimes people can be a bit insensitive without meaning to worry or hurt you.

We'll all be thinking of you. Hugs and best wishes, Zena xxx

Suzanne333 profile image
Suzanne333 in reply toZenaJ

Thank you Zena.

How are you doing? How’s everything going? Xxxxxxx

ZenaJ profile image
ZenaJ in reply toSuzanne333

All well Suzanne, thanks. I've told the kids about the BRCA so that's a big weight off my mind. They'll both have the test. My daughter is due to have her baby next month so once that is out the way it will be all go.

I'm off to my guitar group this morning. We play every other week. I'm hopeless but enjoy it. No badminton during the summer holidays.

I'm so sorry things are not going quite so well for you at the moment. It's a blitch (how do you spell that) and won't last for long.

Wishing you all the best, hugs, Zena xxx

Katmal-UK profile image
Katmal-UK

Hi Suzanne Gobsmacked is how I felt reading your post! As Zena says we certainly aren't writing you off! Can't believe they haven't offered you something else. Do let us know what your oncology team say. In the mean time sending you a big hug. Kathy xx

Suzanne333 profile image
Suzanne333 in reply toKatmal-UK

Hi Kathy.

I saw my oncologist and he wants to try cisplatin. I think you had that after you had a shock with carbo. I had an anaphylactic shock too with carbo. He wants to try it though and I’m willing to try. His goal is to get my tumours to respond enough so I can have niraparib. He says it’s harsh on the kidneys but I’ll be monitored. Fingers crossed.

How are you doing? Hugs xxxxx

Katmal-UK profile image
Katmal-UK in reply toSuzanne333

Hi Suzanne, yes I had cisplatin. It is harsher to tolerate than carbo but totally doable and it worked quickly, the last time I went NED after 3 cycles. I hope it works well for you, you certainly seem to be having a time of it lately. Im doing ok, got a CT today, results next weds. Funnily you'd think after all these years it would affect me but I feel as sick as a partot this morning and by next weds I'll be a basket case. Im supposed to be going on hols the sunday after results but I wont relax until I know how they are so the holiday is the furthest thing from my mind. Anyway what will be will be...... Hope you are ok today xx Kathy xx

Jessica-DianeB profile image
Jessica-DianeB in reply toSuzanne333

Hi Suzanne,

Really pleased to here your onc has a plan :)

Can I ask what the criteria is for receiving niraparib? Xx

What a horrible experience.

My experience too is of the worst interactions being with the ones who know the least about our condition.. I can think of 3examples.

One approach is to take control ourself, so we’re always ahead of them. I felt better after I did my power of attorney for health and welfare and an advanced directive about various health scenarios.

My understanding, by the way, is that doctors do have to respect a DNR form which has been duly completed, but it has to be physically present to prevent treatment being given. I have to take my mother’s with me when we go out, just in case.

Hoping you’re feeling a bit better now. Xx

Suzanne333 profile image
Suzanne333 in reply to

Thank you Mac.

Yes some of these doctors should realise that us patients aren’t planks of wood. We have feelings and fears.

I can understand the DNR form but the fact she implied it wouldn’t be worth bringing me back really upset me. I’m not ready to be written off yet.

I hope you are doing ok.

Big hugs xxxx

Ossett profile image
Ossett

Oh love, so sorry you’re feeling like this it’s bad enough being in hospital, that’s where I am waiting for a lung drained without doctors talking to you like that, when is the oncologist coming to see you.

Suzanne333 profile image
Suzanne333 in reply toOssett

Oh no. I’m sorry you’ve got to have your lung drained. Have you had it drained before?

I’ve not been drained yet. They said it’s a bit involved as I have multiple pockets of fluid. I need a permanent drain too.

I hope you’re doing ok. Let us know how your draining goes xxxx

Ossett profile image
Ossett in reply toSuzanne333

Hi love no still waiting for a bed on respiratory ward, will let you know how it goes you will probably here me screaming lol, hope they do yours soon will keep in touch

mrstadpole profile image
mrstadpole

Sorry to hear about the way you have been treated by the doctor.I shouldn't read too much into this however.She obviously needs to do the training!

When I retired and before I even knew about OC I volunteered in a hospice close to my home.I am not a medic but it seemed almost standard procedure whether people were in for some respite care or visiting as a day patient, there was a form that they all were asked to fill in (usually completed with a family member of friend). The form had a box to tick if you wished DNR. No one was forced to tick the box.

All good wishes

Ann xx

Angie-69 profile image
Angie-69

Hi hunny so sorry to hear you suffering like this at the hands of insensitive people in the wrong jobs! You know your body by now...you know your not done...you sound very much like myself I went back n got drained a couple a times and the chemo didn't do anything etc....I've just been told my marker tripled in this month on caelyx singling on weekly taxol with a big but that it may not help then I'm on my own. I have invested in oil and gonna try that if all else fails. It's such a scary rollercoaster ride but I too aint giving in yet....doesn't feel like it can possibly be bad as they're records ...statistics and bits of paper say...I know my body and I've still got fight in me...let's do this together hun...teal sisters together stand stronger....don't fear what ya told....embrace it and let's prove them wrong times a changing xx

Janet235 profile image
Janet235

So sad and upset on your behalf to read this. All seems very unfeeling and brutal. Did you have anyone with you to talk to, hold hands etc?

I am back in hospital ( Christie's) at mo awaiting to hear if they will do second lung drainage as last weeks one left me with collapsed lung and air pockets. Have chronic diarrhoea and can hardly eat...

They haven't even told me yet what's going on with the disease from my scan yesterday!

Like you feel very 😣😵😩but at least no ones asked me to sign that devastating piece of paper ..with seemingly no deeper explanation or preparation.

Stay in touch, we are all rooting for you

Janet x🌈

Coldethyl profile image
Coldethyl

Sorry to hear that you’re having a rough time - some doctors lack even basic human understanding and compassion let alone the degree required to interact with people at their lowest ebb- hopefully your oncology team have some suggestions x

sjg81 profile image
sjg81

My mum has just had a drain fitted (after much arguing with two hospitals) and the district nurse comes twice a week to drain her. I hope they can do similar for you x

Lorent profile image
Lorent

Oh Suzanne you poor thing,what a dreadful, horrid doctor,she could do with retraining in manners and empathy, this is something none of us want to hear when we are already feeling fragile, I'm sure your team will find a new plan for you. Always in my thoughts and prayers

Loren x

Sending 🤗 hugs Suzanne. Hope they sort your drain out soon jenny x💐

WoodyB profile image
WoodyB

Hi Suzanne, you are such a lovely lady and you are going through such a tough time. I can't believe how that bitch treated you. I don't know whether you have made any progress with your OC consultant but, if not, I urge you to get straight in touch with the Royal Marsden or the Christie for an urgent second opinion. There are many ladies on here who were written off by their local hospital many years ago and are still going strong after going to the Marsden or the Christie. You are a strong lass, make sure you fight for your rights even when you are feeling so low. Sending hugs and best wishes from us both, Woody xx

CJR99 profile image
CJR99

Suzanne,

Nobody could write you off I can tell you!I am so sorry to hear you've suffered such crappy insensitivity. I know the system is under pressure but, a very insensitive comment to say the least.

Thinking of you and don't you ever change!

Best wishes,Clare xxx

Seasun36-uk profile image
Seasun36-uk

Hi Suzanne, I’m sure there will be other options. My understanding is that the effects of (effective) chemo will reduce the ascites. A permanent (for now) drain sounds like a good plan. Sending hugs xoxo 😘

What a horrible doctor has she no consideration for any patients. I hope your team will be more positive and have a plan of action once the ascites is drained, You are also entitled to a second opinion. That doctor should be complained and not let loose on a herd of cows not to mind sick people

lynn6156 profile image
lynn6156

There's always one isn't there - either a crap nurse or doctor just sent to make a difficult day a whole lot worse. I think we should be more forceful and say to them 'you're obviously having a bad day...have you got issues?' Or failing that throw the sick bowl at her! Or maybe you could manage to chuck up over her feet :-)

The DNR used to be scribbled onto the front of patients case notes without their knowledge - usually reserved for people of advanced age with multiple problems such as several heart attacks and very poor health. Eventually it was broadcast that this was the practice, and like data protection it was turned into a big deal and a ticks in boxes exercise. So now you often get a jobsworth who just wants the tick in the box and asks everyone - don't worry about it. Onwards and upwards eh!! Crossing everything you get news and /or second opinion and you can tell misery doctor to wind her neck in!

Lynn

x

angeladale profile image
angeladale

Dear girl , what a ghastly time you are having ...I was diagnosed in 2011 , stage 3c .....

lots of ascites in the first two years , six lots of chemo in the last seven years , about to have major surgery ....ignore the stupidity of whoever she was ( report her when you are stronger ) ....and dont believe anyone unless its someone you do really trust and admire .

There are lots of drugs , trials , and ........HOPE which is down to you . A plan is what one must have , because hope is not a plan .....and a plan has to be demanded almost .

Dont give up .....I was written off in 2013 , and demanded that my notes be biked to another hospital ( once I had looked up the Ovarian oncologists ) . Now , I know we cannot all do that .....but BIG thinking and Big knickers will take you some way forward .

My very best wishes and hugs too .....

Angie-69 profile image
Angie-69

Any news on progress? X

Neona profile image
Neona

I can't believe that doctor said that- how shocking. Have you seen the oncology team yet?

LittleSan profile image
LittleSan

I can't add much to the wise words above but to agree with your outrage. How dare she make you feel even more vulnerable? Definitely advise PALS of her 'training needs'.

Wishing you strength and back to better health. Big hugs. Xx

HI Suzanne, I'm so sorry you are feeling scared.as you might know I've been on here now 4 years and had 6 different treatments and now will be going in for a trial, plus I'm about to have a second pinion, I'm sure your team will have a plain. Take care my friend Lorraine xx

Howick01 profile image
Howick01

Absolutely disgraceful.

I do not understand why they are doctors and sometimes nurses as well when they have no empathy.

It is just so unfortunate that there is so little understanding of OC amongst the medical profession.

The only ones who really understand is the oncology/gynaecology team and they are not always on hand.

Take care and do not sign DNR form until you really want to and also make sure that medics are not signing it on your behalf as I have seen that happen.

xxx🌻

Welshandproud profile image
Welshandproud

I just wanted to reiterate what the other ladies have already said on here. This is one doctor without an ounce of compassion who has been insensitive to the extreme . She obviously hasn't got a clue about oc or even about how to talk to patients. Hopefully by now you have been able to talk to your onc team who really understand and they will have been able to suggest a way forward. Do not give up. We are all behind you and know there ate other options out there. Sending huge hugs xxx

Gleedy profile image
Gleedy

Suzanne i have trodden the constant ascites and progressive disease path. I was written off so sought a second opinion. I have had very good results at a different hospital with cisplatin and gem. I had been refused this previously. If i had stayed at my last hospital my six months prognosis would be up. So pleaseseek a second opinion. Good luck x

harpist_UK profile image
harpist_UK

Hi Suzanne - like Gleedy I moved hospitals, found a more proactive approach and achieved success on cisplatin. Depends on what you are prepared to put yourself through. For me extra travelling and a different approach has been worth it.

marylondon profile image
marylondon

Dear Suzanne, I am horrified on your behalf at the doctor ‘s insensitivity . Make sure you complain so that she learns better communication skills . Hang on in there . Glad to hear that your Oncologist has already suggested Cisplatin . A different chemo will help reduce the ascites & there are definitely other options as well .

Sending you huge support and strength.

Mary x

Cropcrop profile image
Cropcrop

Oh my goodness, what a rubbish experience for you, we’ve discussed the lack of bedside manner on here before but I think we’ve hit a new low with your doctor to ask you to sign a DNR totally beggars belief.

I think the idea of an internal drain sounds like a good plan for you, maybe the oncology team will be able to arrange this for you. It may also be a good idea to ask if a new treatment regime could be possible for you as the ones they’ve tried so far aren’t doing their job properly.

I hope they’re able to drain your ascities speedily and you get some relief and I hope you’re getting lots of support.

Lots of love and big hugs lovely ❤️Xx Jane

Angie-69 profile image
Angie-69

One thing I've noticed ladies, a lot of you say i was written off.....do you mean they gave you a time frame?cos they have me but I don't believe it x what did they say ?

CarolynA profile image
CarolynA

Oh, Suzanne, I have just read your post and all the replies. I am so sorry this has happened and agree with all the advice given by the girls. Please stay strong, I am sending you love, prayers and a gentle hug. 🌸🌼 Carolyn x

Btte profile image
Btte

Dear Susanne you were in my prayers last night, I am glad you have seen your onco. Now you have a plan in place so you need to build up your strength and resilience , hope you can start to feel better both physically and mentally .Love Bridie

Guri41 profile image
Guri41

Dear Suzanne, I'm not a regular writer on this wonderfully positive site full of hope and helpfulness but I have just finished reading all those fantastic replies you've had and your own change from hopelessness to the strength and will to survive - whatever. And thanks a lot to all that great support from all these lovely ladies!

I am in much the same 'boat' as you, at least just lately. I was drained 2 weeks ago, 4 liters, which has made me feel much better. Earlier I had 2 goes with Carboplatin and Caelyx which made me feel so awful I told them, no more. Now I am on weekly Paclitaxel (had no.2 yesterday) and so far so good. I was told that the ascitis would come back but I think that the chemo keeps it at bay. For the moment, anyhow. (CA125 1250)

So really I just wanted to say that I am so pleased you are a fighter and determined to keep going despite the shitty ward doctor's unforgivable remarks. Yes, I do think you need to complain about her. You have always been an inspiration to me with your attitude and positive remarks. So, thank you and lots and lots of luck and strength with your future treatments. Thinking of you. Many hugs, Guri.

Maxjor profile image
Maxjor

Hello My Lovely Suzanne. What a horrid thing for that doctor to say--not only EVER but when you are vulnerable like that seems like a crime. If there is a suggestion box, hope you tell them they need lessons in civility. Anyhoo----I looked 6 months pregnant when I was diagnosed and no matter what they told me, I just wanted to know when the ascites would go away and they told me the chemo would do it. So I believe that with the right chemo--which it sounds like you are going to start now-- those kinds of symptoms should dissipate. There are always other treatments --even if phase 1 or 2---which I don't believe is all you would qualify for. There have been others in your position that get back to NED. You know I am with you in spirit and think of you always. I hope to see positive updates soon and hope more that you start to feel better very soon. With love, Judy

IrishMollyO profile image
IrishMollyO

Dear Suzanne

I have just read your post and all the encouraging and positive replies. It’s good that your oncologist has a treatment plan now and I hope and pray it will be the answer . It was bad enough feeling so low with the ascites but you did not need the doctor with the dreadful bedside manner. Unfortunately there are some oncologists with the same manner. Empathy skills should be compulsory training for all doctors . Cancer patients especially are already coping with the huge psychological fall out from a cancer diagnosis . They don’t need an unsympathetic doctor to add to the stress. I got so upset reading your story. Anyway Suzanne I hope it’s all positive from now on. Take care.

XXX

💚💕

ellseybellsey profile image
ellseybellsey

Suzanne I am so sorry to hear you are having a bad of it, I’ve just come home from hospital today after somehow getting an infection. I really can’t wait to see my oncologist on Friday as they understand our cancer not general medical Drs.

The sister on the ward said your very upbeat considering you can’t be cured, I told her maybe no cure but stability will be good enough for me.

Hugs Ellsey xx

Flamingobeef18 profile image
Flamingobeef18

Just wanted to say that I hope you are feeling a bit better today.

You are in my thoughts and prayers.

Lots of love

Juliax

jools53 profile image
jools53

Maybe another a&e further away! Just pick a good area and say you have felt unwell at friends so decided to get to hospital ASAP! Got nothing to loose! Just play there game! Takes a lot of energy we know! But got to try anything! Can’t refuse care! Stay brave solder al here listening and reading or our awful times were all going through!we are all in this boat some in front some behind! I’m reading tonight as had my 19th avastin today ca125 creeping weekly now 155! Hmmm pains etc always hope though! Someone I was talking to was given 3weeks stage4! Still here 10yrs ago so there 😘😘😘

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