Need badly cheering up: Dear All, I badly need... - My Ovacome

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Need badly cheering up

Shorty864 profile image
41 Replies

Dear All,

I badly need cheering up. I am in hospital again. Arrived in a totally confused state and don't remember much, they are doing tests because they believe it is an infection. Uti or stomach where they placed the drain. Have cleared the Covid 19 test.

As anyone of you been asked if you wish to be revived or not?

This is the 2nd time and by the most inhumane of the doctors I have met. Felt I was being driven into a corner so told her I thought it was for me and my family to discuss, but she insisted and look pissed off that I wanted to discuss - feel thoroughly depressed at the moment, as if things were not difficult enough.

How do you feel my dears about this. Would appreciate your points of view.

Lots of love Anne XXX

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Shorty864 profile image
Shorty864
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41 Replies
amco40 profile image
amco40

Hi Shorty,

My mum was in hospital for 2 weeks with urosepsis and pneumonia. She tested negative for covid 19 too. She also has ovarian cancer stage 3 and it was just before she started chemo that she was in hospital.

She was asked the ' do you want to be resuscitated' question two times!! She ignored them. Their bed side manner was atrocious and I had an argument with them over it.

Do not let it get you down. This is just something they have to ask and some of them do it really badly. And you don't have to answer them.

I hope you will feel better soon. Get stronger, keep going and complain about your experience when you get out of hospital.

Sending hugs.

Xxxx

Shorty864 profile image
Shorty864 in reply to amco40

Hard to fight battles, when you are at your lowest and no family around you. Somehow not good the Uk setup for anyone. Then they give the job to the less experienced rather than your own doctor maybe having that speech - at least he knows what you have gone thorough.

Not some doctor who has just finished her schooling.

I feel angry. All the best my dear. Anne xxx

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

It's such a shame you've caught an infection especially since you've been doing so well with the weekly taxol. I understand infections can cause you to become confused. Once they're sure what they're dealing with, the right antibiotics should soon sort it.

I don't think doctors are given sufficient training in handling these conversations, which is a pity. But in your case, given you are doing so well with the weekly taxol, I would have thought the answer was obvious.

Stay focused and ignore her if she asks again. Good luck you get the right antibiotics soon and get back home.

Lyndy profile image
Lyndy

Yes, I am also in hospital, had pneumonia, so suspected Covid until my test was negative. Told point blank that if my breathing worsened I would not be ventilated.

Due to my active relapsed cancer.

It was horrible, sitting there with a clinician and no family support.

I kept saying I want a chance at chemo... but he wasn’t encouraging... I spent last weekend thinking they were just going to abandon me.

Make your wishes crystal clear Anne and don’t let them put words in your mouth xx

Shorty864 profile image
Shorty864 in reply to Lyndy

My family were so upset - everyone in tears as they had seen how confused I was.

Terrible - they definitely should have training and include the whole family and nobody should be push into it - they have no idea what we been thorough to get here.

Thank you Lyndy - love you.

Anne XXX

Hope you soon get out my dear - it is so awful without the family.

January-2016-UK profile image
January-2016-UK in reply to Lyndy

I cannot remember who, but a member of the Government's daily press conference definitely said that no patient had had to be denied ventilation during the crisis, which had initially been feared would have to be done. Perhaps whoever spoke to you is unaware of this.

Although, given the deceitfulness if not downright dishonesty the Government has used recently perhaps what the spokesperson said bore the same resemblance to truth as counting each individual glove as an item towards PPE delivered or counting home tests that have been mailed out (but not returned) towards the daily target of tests.

Hope you recover from your pneumonia soon.

Shorty864 profile image
Shorty864 in reply to January-2016-UK

Dear Lyndy,

I am going to watch with anger how the government crawls out of what has happened in this country of what I am sure they will be able to do.

£60,000 for each key workers who have died.

Read today that Europe will not be welcoming the British who wish to go on holiday there this year.

The arrogance of the Government is unlimited and endless - playing with people's lifes.

No I don't have pneumonia but an infection due to the drain fitted in my stomach - they suspect- will know tomorrow.

Thank you my dear for you reply.

Anne XXX

delia2 profile image
delia2

Hi Anne. I’m so sorry this has happened to you. It must have been frightening being confused. And quite upsetting to be asked about being revived. Maybe this is because everyone is obsessed with Covid? The good news is that if you have a bacterial infection they should be able to knock it out with iv antibiotics. In the States we are encouraged to have a living will which states under what conditions we would want to be resuscitated or put on a ventilator so they don’t have to ask. However the default position is to do whatever is necessary to treat someone. I’m guessing you can’t have visitors which really sucks. I’m hoping you get better quickly and back home—but in the meantime a kinder doctor would help! Xoxo

Sw21 profile image
Sw21

Hi Anne,

So sorry you are having such a difficult time. I’m in the states, and echo what Delia said. Here, they push you for advanced directive at your first oncology visit and ask every time until they have it on file. I understand they think we are a population that could go at anytime, but I found it horrifying, on top of the surprise advanced cancer diagnosis. I think it’s a mere technicality for them. Not sure how things are done over there, but if it we me, I would tell them my wishes loudly and repeatedly and make sure it was charted. Even if it s not the direction the staff is nudging you. Best wishes to you🌸

thomas62 profile image
thomas62

You stick to your guns Anne. I would keep a check on your paperwork to ensure it states your wishes and not the doctors. Hope you feel better soon and back home. Gwen Xx

Kkaren profile image
Kkaren

Dear Anne I am sorry to hear about your experiences today. You can just about cope when things are ok but when things start to go wrong I think we take it harder on top of everything else. What an awful position to be put in. Agree with others in that you are doing well so definitely wouldn’t be pressured into agreeing to not being given a chance. If there is one thing I have learned over the past couple of years ( well I’ve learnt a lot to be honest) is that people tend to open their mouths without giving proper thought to the words that come out of it. They just don’t take the time to stop and think first. Hopefully they will get the infection sorted out and you will be back home before you know it. Take card lovely lady. Karen xx

Shorty864 profile image
Shorty864 in reply to Kkaren

Thank you Karen, I agree with you on that also that no one has the right to take away our hopes and dreams. What do they know of our life, until they decided to walk into your life with a question everyone will be upset by.

A hug. Anne XXX

Joanie12 profile image
Joanie12

Dear ann you tell her you've been through too much to pack it in, you are a fighter, a warrior,hang on in there. Sad that family cannot be with you, stay strong, prayers xx

Shorty864 profile image
Shorty864 in reply to Joanie12

Dear Joan,

In fact I did try and tell her that it has been a fight all these years and I have learnt life is very precious a long the way, but all I could see this bored face looking at me. Thank you my dear for caring it is times like this we need a helping hand.

A big hug. Anne XXX

Katmal-UK profile image
Katmal-UK

Hi Anne. Hope your feeling better this morning. Sounds like that dr lacks a 'bedside manner'. Over the past 12.5 years Ive come across drs like this . I think its me lol but I always react and keep in my mind that ok so they are drs but this is YOUR life. To give an example, I met my surgeon after my op when I was laying in bed and he came up told me I had cancer and the prognosis is not good.... to which I replied 'and who are you to be writing me off, Ive never met you before'. He said he was my surgeon and we had met in the theatre! Fgs I was out cold lol. Anyway I suppose what Im trying to say is dont be 'bullied' by anyone, dr or not this is YOUR life and yr in charge! Big hug Kathy xx

sticky3006 profile image
sticky3006

Good morning Anne. Sending you my thoughts and a virtual hug. Try and push the rude, ignorant dr to the back of your mind and focus on getting home. She has to ask this and obviously doesn’t understand how her attitude comesacross to those who are feeling very vulnerable and scared. Remember to be a doctor you have to be bright and studious but not necessarily kind or empathetic. Sad but true.

My oncologist told me in a very matter of fact way last month that I was palliative and she said it as though she were telling me I had a minor skin condition 😬. I came away very upset but then thought ‘sod you’ and your casual attitude I’m taking no notice.

Thinking of you and hoping you get home soon. BTW when you feel stronger write to PALS at your hospital and complain about the drs attitude xx

LittleSan profile image
LittleSan

Hi Anne, my heart goes out to you, the last thing you want to deal with when you're feeling ill and vulnerable is an insensitive Doc asking a deeply spiritual yet pragmatic question. I was asked in a sensitive manner whilst in hospital but was still deeply shocked. I told them a resounding "yes, I do want to be resussed unless I've been unconscious without oxygen for a long or unknown length of time."

I've been in and out of hospital since last year for drains, sepsis, colitis, gastric bugs and partial bowel blockage. Chemo was abandoned in February because of the dire effect it was having on my organs. Yet am now doing well on just Letrozole. Don't let it all get you down, there is hope that things will take a turn for the better and you can give that insensitive Doc a virtual Harvey Smith!! 😄

Here's to a return to feeling strong and well.

Sandra 💐😘

Lindaura profile image
Lindaura

Oh, Anne,

I am so sorry to hear this!

But yes,

Three times during my last hospitalisations I was asked in a really weird way, when I was actually In good shape except for the progressing cancer, saying “of course, you would not want to be resuscitated, if your heart should suddenly stop.”

My heart had no intention of stopping and I was in shock at the question.

Next time, I refused to discuss it, but last time, I declared that Yes, I wished to be resuscitated, that I was furious at the question, and that only if I was in a coma, could they ask my husband and daughter, but for now, I have a signed document stating that I wished to be resuscitated.

Also, twice I was asked/informed by the Oncoligy registrar, that if I needed it, I should not let myself be moved to ICU.

That I should let nature take its course...

I was furious again and argued diligently with this stupid inhuman policy that they wanted to shove down my throat.

I complained to PALS about this, but did not take it further.

[Removed by moderators]

Shocking! Terrifying and heartless.

Keep up the fight!

Laura

Beauxbelle profile image
Beauxbelle

Dear Anne,

If you have the strength, ask for a piece of paper and write down how you feel and your wishes and ask for it to be put on your file and watch as a nurse/doctor does just that. No one should be put forced into a place they do not want to be. Do what feels right for you.

Thinking of you and sending virtual hugs

Love

Barbara xx

ShropshireJo profile image
ShropshireJo

Dear Anne

I hope you are starting to feel better today. I’m so sorry you have had such a horrid experience, especially now when your family cannot be there to support you but if it’s any consolation, all your friends here are right with you to support you and cheer you on and it’s great to read all these helpful messages you’ve had already.

Sending love and hugs to you, lovely lady.

Jo 🌹🌼🌸🌻🌹🌼🌸🌻

Tesla_7US profile image
Tesla_7US

Shorty. I'm in US. The state I live in REQUIRES BY LAW that a document called "Advanced Directives" be ON FILE (in the computer system) at hospitals affiliated with one's health insurance. It is mandatory and covers which procedures a patient DOES or DOES NOT WANT. Intubation? Food? Pain Relief? etc. Because this is required by law, it's expected that patients have already discussed and made these choices. So when in hospital no doctor is going to be questioning patients regarding these choices when they are already in a distressed state. For you, hold your ground! Do not allow ANYONE to force a LIFE OR DEATH CHOICE ON YOU. Does the UK health system have a document that you can fill out and carry on you?

Di16 profile image
Di16

I was asked that once, about 6 years ago, when I was admitted to hospital for 3 days after developing a raised temperature while on weekly Taxol. I said yes I did want to be resuscitated. Yet since then I have been in hospital twice with infections, one of them a bad case of cellulitis, & wasn’t asked. I also wasn’t asked 3 years ago when I had a further operation for oc, a major surgery lasting 7 hours. Perhaps I should have asked them if they would resuscitate me if necessary? Di

Numi profile image
Numi

I hope you get better quickly Anne and get back home. I'm not surprised you're upset by the way you were approached - I would be too. When I read in the press when Covid-19 cases started to escalate, that people with illnesses like ours might be approached, even before we got ill, to sign a DNR, it made me really frightened; more so than at any time since being told my OC was back, so to be pressured when you're unwell with an unidentified infection, must be horrific. I know the doctors are under immense pressure at the moment, but that's no excuse to treat anyone so insensitively. xx

juliamillen profile image
juliamillen

Yes I have been asked if I wanted to sign a DNR. I said yes and signed it as I didn’t fancy waking up really ill with cracked ribs etc. Sounds like you are feeling really alone. Are you allowed visitors. If not must be very lonely for you. Best of luck and a virtual hug from me

Shorty864 profile image
Shorty864

Yes that is what I thought but would not want to be abandon because I had an infection and was in total confused state.

Thank you my dear for your reply.

Anne xx

Maxjor profile image
Maxjor

Another one in the U.S. here. Just adding my support Anne and so sorry you were asked such a question by a person with little bedside manner.

My directive (the Living Will) states that I want my husband to decide--and he and I have spoken as to what would qualify as a DNR or to resusitate. If he can't be at the hospital to do that, I assume they would call him. Hopefully you made it very clear what you want or that they should also get in touch with your family as long as you have told them your feelings as well. Good luck and again, so sorry you are feeling as you are. oxoxoxo Judy

Kkaren profile image
Kkaren

How are you today Anne. Xx

Shorty864 profile image
Shorty864 in reply to Kkaren

A little better. Hoping to get out of here tomorrow - thanks Karen. XXX

I have never been asked that question but I think I would reply " did you say resuscitated or resurrected? Either way can I let you know nearer the time?

Seriously shorty don't let the B*****s get you down, stay angry it will get those fighting hormones soaring! Hope you are back home soon. Take Care xx

Shorty864 profile image
Shorty864 in reply to

Love it. In what awful places we can find ourselves - and now with Covid-19 very much alone and that is scary.

Thanks Lyn - hope to home tomorrow.

Anne XXX

in reply to Shorty864

I hope I cheered you up a little bit 😁😍 if all else fails tell them to F**k off. It is a scary world at the moment but you are not alone, you have all of us on this forum, all hear for you. Take Care xx

Mrsmerlot profile image
Mrsmerlot

I am so annoyed for you! To be asked that question whilst knowing you were in a confused state is beyond belief. Not all NHS staff are heroes.

I do hope you are feeling better today. X

Shorty864 profile image
Shorty864 in reply to Mrsmerlot

Yes, but on the whole the nurses and carers have been great and mopped up most of my tears and fears. Thank you my dear for you reply - your replies have all helped in one way or another. Anne XXX

Petrolhead profile image
Petrolhead

Hi Anne- absolutely do not them bully you. I echo the others who say make sure your wishes are on record. Even if you have to bring up the subject so that they make a record if it is not there already.

As the famous saying is- don’t let the buggers grind you down.

Best wishes

Fay

Shorty864 profile image
Shorty864

Thanks Fay - one feels so alone at moments like this - I have always had my family by side thorough this illness and it horrible to be so alone. Anne XXX

andyfay profile image
andyfay

That is a routine question about getting revived if you go into cardiac arrest. But it is frightening because it is not something that you think about much. And UTI's will put some people into a confused state. Depends upon how bad it is. I was in the hospital in January and it is disappointing. But I always say to myself I am here to get well. And it seems to help a bit. God Bless

JustKBO profile image
JustKBO

Dear Anne I have nothing more to add to all the kind and supportive comments you have already received other than to say that you Have a fantastic attitude and will be able to put this behind you soon. Everyone is thinking about you and sending strong vibes to help you through this horrible time. As Churchill said: KBO. Xxx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hello Shorty864

I’m sorry to hear that you’re not well and that the conversation with the doctor about resuscitation was so unpleasant for you. I can see from the replies to your post that other members of the forum have also had negative experiences of these conversations and that there is some concern around how decisions are made.

I thought it might be helpful to provide some more information about decisions on whether to attempt CPR and let everyone know where you can find support. As with any other aspect of your care, you can speak to your team about planning your treatment and review the plan if anything changes. If you would like to find out more, here are some sources of further information and support:

The Resuscitation Council have some frequently asked questions for patients about this at resus.org.uk/faqs/faqs-dnacpr/

Marie Curie also have information at mariecurie.org.uk/help/supp... and can be contacted on 0800 090 2309.

I hope you’re feeling better and can go home soon. If we can help, or if you’d like more resources or to talk anything through, please get in touch with our Support Service.

Best wishes

Julia (Ovacome Support Services Officer)

Katiebairdie profile image
Katiebairdie

I was late seeing your post and hope you may be home by now.

I have been asked the same question in a form from GP surgery. I answered, it would depend on all sorts of circumstances at the time so could not give an answer.

My son calls me shorty. Great big 6ft. galute. Scottish word that kind means twit.

Best wishes for your full recovery.

bluepeterella profile image
bluepeterella

So sorry to hear. The DNR question really saddens me, it feels like we are seen as easily disposable humans when times get tough. Don't try to stop being angry - it gives you energy and energy is life. Hope you're getting the infection under control now x

So very sorry for your situation. I was told to have a DNR which, as a Roman Catholic I needed to discuss with my Priest. The ambulance crew refused to transport me home without said form. Then, as they kindly carried my bags I jokingly asked which rule we were breaking. They explained the torment and abuse they would ...and indeed do.....receive when an already ill person might go on to have a stroke or worse. It could be handled sensitively but never is!! Ditto 'next of kin' is shorthand for "who is going to pay for your funeral?" Please don't cry or you will let them win🌷🌷

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