Discharged from hospital after being told I've got cancer

[MuthaFunka61]

Hi,
My post is in two parts.

1. Is it reasonable to be told I've got cancer and sent home where I live alone.
2. I need support.

1. I was admitted to hospital after a blood test which showed deranged liver levels.

It seems that these levels are now within an acceptable level but many symptoms remain - difficulties eating anything other than small amounts, pain across my diaphragm and right hand side, which restricts my breathing. I've been prescribed oramorph to manage the pain.

1. Yesterday I was told I had cancer but advice from the multidisciplinary team was being sought after an endoscopy and biopsy on Wednesday.

Cancer had been mentioned previously but as the endoscopy hadn't at this point taken place, I didn't worry as there was no evidence for this.

After the 'diagnosis' for cancer was delivered I was told I was being discharged and to wait for contact from oncology and MacMillan nurses.
It felt like I'd been hit by a juggernaut.

As well as feeling in limbo I'm now home alone without being able to contact my GP or gather any information or support and'm pretty angry about this.

I'm not prepared to tell family just yet,as delivering the little information I have without being able to offer them the wider perspective of an accurate diagnosis,treatment plan and prognosis is to share the negligence of care around and I'm not prepared to do this. I will be open and honest with them once I have the information necessary.

I need to be able to talk with others over the weekend to reduce my sense of isolation,so'd appreciate contact,conversation and any rational advice until I can speak with professionals hopefully on Monday.

I'm almost 61 years old and take care of myself with healthy eating,regular dog walking and hobbies.

That’s tough, OP, but can you think about what you want, what you’d like? Is there a helpline eg Macmillan you can telephone? A friend you can talk to?

Can you reframe your situation from what you lack, into what you need, want, or would like?

I live alone so I know that I have to have different strategies for support. My employer has an employee assistance programme which I found useful at an extremely stressful moment in my life, when most people would have had a partner for support.

Good luck.

I’m sorry @MuthaFunka61 that must have been difficult to take in but really what do you expect the hospital to do in terms of support? They can’t keep you in if there is no actual medical need right now and support is what you would get from your friends and family if you tell them what has happened surely.

The shock must be very hard to deal with but you need to make things as easy as possible for yourself while the next steps are sorted. Online shop for food and anything else you need (provided finances allow obviously).

Tell someone who is close to you and give them the chance to help you too.

I’m sorry OP, what a shock. Is there no one you can contact? You don’t have to give your family a complete picture, just share your experience so far. I’m sure they would much rather support you now, in your shock, than be presented with a clinical diagnosis.
I’ve noticed that people often want to be strong and have all the answers when they tell family/ friends about serious health problems, but it’s not necessary.

((((HUG))))

I live alone too, I'm 52 & had an accident earlier in the year landing me with a life altering injury & leaving me unable to care for myself (temporarily) My mum & sibling & best friend live overseas (long haul). I have never felt so vulnerable.

I can only imagine how you're feeling.

Could you tell one person in RL & explain what you've said here (that you want to keep it to yourself until you know more)?

I understand how you feel about being discharged to go home alone. I couldn't even go for a wee by myself, it was worrying, but I was also very worried about getting covid while in hospital, so tried to focus on being glad to be home.

My fried was diagnosed with cancer last year & she's been fortunate enough to have had a lot of procedures & treatment (changed a little due to covid, but not much) so hopefully you'll get a diagnosis & treatment plan sorted very soon!

Big hugs x

I am sorry you are going through this, but I don't think they are being negligent. You, understandably, are angry and scared and want answers. They need to devise an assessment/treatment plan presumably and there is no point sitting in a hospital bed waiting to know what that is. I know you want to know now, but you can't until they do. Tell your people, so you have the support.

They aren't being negligent, they have diagnosed the problem and the relevant specialists will be in touch, they are an acute hospital so unless you cannot take care of yourself they discharge you. There's a helpline for macmillan if they haven't contacted you yet, and do reach out to your family. There's other cancer organisations that provide support too

When DH was diagnosed the consultant gave him a card with names and a phone number of the 2 Macmillan nurses at the hospital specialising in his particular cancer. He didn't phone straight away but having it, and knowing he hadn't just been sent home to twiddle his thumbs and await a call from unknown people was really helpful. For those of you asking what else the hospital could have done, this is it - some recognition that while this is all very normal for people working in healthcare it's terrifying and bewildering for someone to be told they've got cancer and then feel like they've just been sent away to get on with it.

OP the Macmillan website is really useful and has lots of practical information and advice. I'd suggest starting to make a list of questions now for the next time you speak to someone, hopefully a Macmillan nurse. Tell someone close to you and who you can trust not to push for answers you don't have yet. If you find telling people is hard you can ask them to spread the word for you - people really want to help. Finally, do some nice things for yourself now and spend time with people you like spending time with, looking after your mental health is really important.

@MuthaFunka61 I’m so sorry that you’ve had such distressing news.

I agree that you should try macmillan, you don’t have to wait for them to contact you to talk things through (You can call the Macmillan Support Line on 0808 808 00 00). They won’t be able to give you concrete answers in place of a conversation with your doctors/nurses but they can hash out any questions with you.

Truthfully, there isn’t an easy way to receive news like this, it does sound like the medical side is following the path it should be taking but it’s brutal emotionally.

The time between being told I had cancer and the time I was told how bad it was, was the worst. I had sleeping tablets that helped. Is your surgery open this morning?

There could be support lines for the type of cancer you have. Maybe try ringing them or McMillan to give you support right now.

I do remember how awful that limbo time was, because your mind automatically thinks the worst.

Can you confide in at least one of your stronger family members or friends? No one would want you to go through this time alone. I’m sure they would want to be there for you.

This is horrendous for you.
You must feel abandoned in addition to you being in pain.
But as other posters have said, you do not need to take up a desperately needed bed if not medically needed just to be given information.

You sound switched on enough to not fall through any cracks, to be able to seek out the vital information that you need no matter where you are. You can’t take up a bed though.

I don’t believe there to be any negligence here. I do think that you are frightened and feel very vulnerable after this news.
It’s time to move to the next step now to get racking and tackle this.
Good luck op.

Call your gp op, they will be able to help. Macmillan too. I hope you have caught it early.

If I were your loved ones, I would not want you sitting alone in limbo, waiting for clarity. If they knew, they would want to help and comfort you, now and later. I understand if you would not want to tell vulnerable people, but surely there must be a couple who could deal with the news without too much adverse effect on themselves and can give you company in this moment?

Wishing you all the best, OP. Please don't carry this burden alone.

As well as feeling in limbo I'm now home alone without being able to contact my GP or gather any information or support and'm pretty angry about this.

Anger is a perfectly valid and natural reaction.
It is true that remaining in hospital wouldn’t have helped you in any practical sense - they can’t give you answers till they have answers, and you’ve hit oramorph for the pain - but you feel unsupported and in shock and so anger at feeling treated as unimportant is natural. Go with it for now, accept it, let it pass.

I'm not prepared to tell family just yet,as delivering the little information I have without being able to offer them the wider perspective of an accurate diagnosis,treatment plan and prognosis is to share the negligence of care around and I'm not prepared to do this. I will be open and honest with them once I have the information necessary.
Please reconsider. My mum I know liked to wait to tell us until she had digested the news. But she had my dad for support. And in truth even if we couldn’t do anything we would have just wanted to help - by coming over for a cup of tea and a hug, by sending a supermarket delivery and checking in, by sending flowers, whatever. You can’t protect everyone from this news and you need some support now. You don’t have to keep strong, it’s OK to be a bit raw and vulnerable.

Don’t think of it as ‘sharing the negligence of care’ around. Think of it as trusting your loved ones to love you in this moment.

Thanks lovelies.

I'm willing to tell friends and neighbours but not my sons or family right now.
I understand the position from the hospitals perspective but still think the delivery could have been presented with compassion or empathy.
I'm not sure how discharging me on Monday straight back to the care of my GP and with the opportunity to absorb and plan would have been so complicated. I'm an ex NHS employee so understand pressures for service and also duty of care,which I'd argue was lacking.

I agree that focusing on what's needed is key,and as I'm finding my way I'm able to highlight these and identify my very kind neighbours and friends who I think have the skills to fill the gaps. I am fiercely protective though so I'm sticking with my plan of when and how to tell family. I'm also thinking of any potential immunity deficiency right now and until I know more I don't think it's wise to have visitors.
Thank goodness for video calling.

I've checked with MacMillan and there's no further advice that they can give me,either as it's just a case of waiting until Monday. I've left a message with my GP and'll call on Monday.

Thanks for the comforting and supportive comments

I’d see if you can get hold of some sleeping tablets. They were a godsend for me during the limbo time.
If you can’t see a gp, ask around.

Sorry to hear about your diagnosis OP. 💐
Have a look at this thread www.mumsnet.com/Talk/general_health/4374128-Cancer-Support-Thread-81-Newbies-welcome
It’s been a few years since I needed the support on there so I know most of the contributors will be different but I certainly found it helpful at the time.
Please reconsider speaking to people in real life too. I did have my husband to support me so my situation was different. I was reluctant to tell anyone else initially because, like you, I didn’t know exactly what I was dealing with.
It’s normal for the MDT to discuss your case and for you to be given a treatment plan afterwards.
As yuledo says this bit is the most difficult. But a treatment plan will be in place soon and knowing what is going to happen makes it more manageable.
Very best wishes x

Discharging you on Monday would mean you taking up a bed that someone with an acute medical issue needs. It would also increase the risk of you picking up covid.

Right now you need emotional support. Please speak to a friend or to a support line. If you need medication before Monday then call 111, an out of hours GP will help you.

I'd also be realistic about what help your GP will be on Monday. They can listen and reassure, but realistically it could be a few weeks before you have a treatment plan.

I'm so sorry OP. It sounds like the hospital were a bit abrupt in the way that they discharged you. Giving these types of diagnosis is a regular occurence for them but I don't think that they always consider how it sends the person on the receiving end reeling. As someone else said, even providing a helpline number would have been of assistance. I don't know what to suggest but didn't want to read and run.

I’m glad you’re going to reach out to friends and neighbours for support. It’s your diagnosis and your plan, and I understand being protective of your children and family, but please don’t wait too long. I can tell you I would have been extremely hurt and upset to discover my mum told many people before me because she thought I couldn’t cope with the news. I realise that’s not fair - as I say, it’s your diagnosis - but if you are doing it out of love to protect them then do consider that it might not feel that way to them. If you think you can’t cope with their upset, and they wouldn’t be mature enough/able to protect you from that and offer you support rather than expecting you to support them, that’s different.

Good point no squirrels about the reason for not telling your family.

Morning.
I decided to speak with my sister who agrees that until I have information which'll provide answers that're reasonable to ask we'll keep it between ourselves.

My sister has a friend who's a cancer consultant and we spoke last night. There wasn't anything she could really offer due to the lack of information on discharge and agreed the handling of this had been "poor",but has offered ongoing communication if I need it.

What is good to know is that my sister's got my back and she's drawing from her professional network to get me any advice and support I may need.

Thank goodness for my sister.

Your sister sounds great. I'm glad you were able to talk to someone.

I’m glad that you’ve got someone to lean on and help you through it too.

Yes,we've had many up and downs @raspberrymuffin but she's being an absolute star just when I need it.

Thanks @Yuledo,my GP is being extremely supportive too.