Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

The elephant in the room

Maz59
Posted by

As you know I have had a rough couple of weeks with what is probably simply a chest infection. 

I have been on a number of different wards, mainly due to bed issues, and the difference in how I am treated is quite stark. 

Oncology has not had a presence much although they doctors all end by saying that's where I should be. 

I have had a number of scans and it seems that every time they turn up they ask if anyone has gone through them with me, which they haven't. Today I pointed to the 2 doctors that came yesterday and said they told me the scan was fine. He looked then said well there are some changes some deposits which could be causing the chest pain but not much more. 

Whilst I have been in here my cancer meds were stopped and it is already 3 weeks. To me it's no wonder there are some changes but no one is doing anything to sort this out. The answer to this apparently is to get me discharged asap so I can get onto oncology and get back on my meds. 

I know my oncologist is on leave this week but do you think I can ask to speak to someone who understands cancer. Deposits ?? Enlarged lymph nodes?? - is this not just down to the infection. 

I guess I will need to wait to see the oncologist for any real update but I just thought I would take the dust sheet off the elephant for a while before I go back to just getting over an infection. The medics seem to either want it all the elephants fault or to ignore it all together. 

I have a very bad feeling that they are going to stop my meds again. Too much time on your hands to think about the bad things when you are hooked up to temperamental drips.

Let's see how things go I might take my elephant out for a stroll tomorrow. 

Maz 59 

flowerlady
Posted by

Hi Maz59

Your situation defies belief. I don't think you have been treated at all well. Where do you get answers from when you are in hospital yet no one seems to be listening to you? You may as well be at home in comfort. I hope you get some help soon. 

X

Flowerlady x
Gragon
Posted by

Hi ,

When I was first diagnosed I was given a lot of phone numbers for oncology support.  This included the department where my oncologist was based so that I could always call an oncologist if I had major concerns.  I was advised that there is always an oncologist on call so I could get advice at any time day or night.  Can you remember if you were given a similar list when you were first diagnosed.

If you can't remember or access them if you talk to any member of the oncology team or your consultants secretary they should be able to advise you who to call.  When you do get through to someone I would suggest that they need to liaise with the doctors treating you now.  If you are not able to do this yourself and there is a Macmillan support centre in the hospital perhaps you could ask them to assist you in this.

I hope that they get to the bottom of this all soon and you can get home and back to seeing your regular oncologist.

Love and hugs,

Gragon x

Maz59
Posted by

Hi folks 

I think things are a little clearer but probably just in the fact that I will possibly know more when I next see my oncologist. 

Someone from oncology came today and did apologise that I have been on several other wards and again said they were trying to get s bed on oncology. I explained I was fine where I was I am just not sure what is going on. 

I am not sure if it was informative or confusing but apparently the infection symptoms especially the high temps, sweating etc is also a symptom of cancer. So although I have had a shed load of AB they don't really think.i have an infection. This revelation threw me so I asked was it worth trying to resite another cannula and staying in hospital. They were able to tell me the recent scans were not clear, as I had been told,  but I will be talked through that another time. 

It was left that the two teams Gastro where I am residing and Oncology would chat and then I would probably be discharged 

The nurse has kindly chased things up as I seem to have been taken off any obs round so I got my hubby to bring my clothes in. I have been told that they don't want to discharge me until my temp is at least a little stable and they get me onto oral anti biotics. They have provisionally booked discharge for Sunday. 

Maz 59 

Maz59
Posted by

Temp up threw the roof and I am bathing in a pool of sweat but the.nurse that came to answer my call simply took my temp told me I was boiling and left. Apparently it is too hot in here. I have the fan turned right up but I will see if I can struggle a window down shortly when I get my breath. I have wrote down the time temp and what I have taken just in case anyone wants to know in the morning. 

I am taking it that as no one is bothered I am fine to have these temps and breathing problems. 

I am beinging to realise that the paracetamol are not really having much effect and my breathing is getting shorter and shorter the longer I am here. 

At this rate I will need to book a wheelchair to get round the zoo next week. 

Well I will try to get back off to sleep. they are going to start me on some steroids tomorrow I only hope they are not those little pink thing's tiny but cause the worst sickness. 

They did give me the option of moving to oncology at 10pm but they were happy to keep me if I wanted as I am no bother, first for me. As I have my own room they have given up on any idea of cannulation  and I am due discharge on Sunday I thought it best to stay put. 

Take care I hope the storms are not raging wherever you are

Maz 59 

Johnty
Posted by

Dear

sorry to hear about your high temperature, you can’t win in hospital it’s either boiling hot or freezing cold, the sooner we have you home the better then you get control of your own environment. Good luck for Sunday when they will hopefully discharge you and you get back to some home comforts. The steroids will give you a little boost and help with inflammation so should help with your breathing. Will be keeping fingers and toes crossed for you.

best wishes

jane

 “ A trouble shared is a trouble halved “
Maz59
Posted by

Well folks it's been 2 weeks plus since this nightmare started and I can definitely say I feel worse today than ever. 

The heating went off in my room yesterday and it was freezing up side could have been that it would have sorted the temperature out but strange thing even when frozen you can still have a temp. 

I have had every bit of clothing and towel on through the night as no one came when buzzed. I have cried with cramp in my feet for hours. 

The cleaners announced it was a freezer this morning and rang for maintenance. Still noonr move me but I was given more blankets on the bed. 

Then I went in the loo and water gushed from the cieling freezing water. My chest is in a spasm. 

The sister has finally arrived and someone is now on the roof but it is sub zero temp in here and no one is moving me.

The pain is terrible but there are no doctors. The steroids have not turned up again today. 

I have snapped I have rang my husband and when he arrives I will be going home. 

 Sometimes we have to say enough is enough. 

Maz 59 

Lass
Posted by

You know, I think this has gone beyond a PALS issue and is now a legal one. No-one should have to be treated like that. Things break, things go wrong, but how it's dealt with when it does means everything. And they have utterly failed you. Again.

If you feel up to it, after you've hugged a few hot water bottles, I'd def be taking some advice. 

Good luck, and I hope your husband gets there soon with a premade hot water bottle! 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

tvman
Posted by

Oh Maz, I feel so sorry for you and also anger at your medics for not moving you and also failing to answer the buzzer. For dears sake that's the kind of thing that results in a tragedy. Make the biggest noise you can, if you're too weak then get your husband to do it and make sure you or hubby go to the very top as well as other levels below. I am disgusted with the treatment of a cancer patient. They could at least move you somewhere warm. Pathetic.

Take care Maz and fight your corner if you can, at no point put yourself in danger. 

Sending love and hugs to you Maz

My philosophy is simple, love life and family.
Johnty
Posted by

Dear@maz59,

I am so sorry to hear there has been no improvement in your situation, sometimes discharging yourself is the only way to get people to take you seriously but not if it is going to place you at any risk. I have discharged my self in the past due to a similar experience and things improved and I got my treatment at a different hospital here in the Cheshire area where there are other options.

best wishes

jane

 “ A trouble shared is a trouble halved “
Maz59
Posted by

Hi folks the day staff have been really good and they always say it's what they do that counts. 

All the staff were absolutely dumbfounded by how cold it was and it looks like I have got too cold and passed out for a while causing things to deteriorate. 

I have been taken to another room and am warming up. The Doctors have said I will have to discharge myself against their wishes if I want to go as they are concerned. As I am racked in pain I can't make it out so let's defrost.  

I think I might of panicked a bit as I went into spasms. 

They, the nurses, have just all taken off as they don't want to even try cannulating even the confident ones are saying I am bad at the best of times as a block of ice they have no chance.

Let's hope just a tiny set back and home asap. It was the storm apparently and I have no problem re that it was just that no one thought to even tell me,  try to move me or even check on me. 

I am determined not to let this  spoil next.werk. 

It's has been my longest spell on hospital ever and also the most concerning but I just wish they could get to the bottom of things then I might not have to return ever.

Wishful thinking 

Maz 59 

Johnty
Posted by

Dear

glad to hear things are looking up a little bit, it’s hard to get answers at the weekend so hopefully you’ll get some more information tomorrow, so hang on in there until then. As you say the doctors don’t want you to discharge yourself , but you have got their attention now and that might be enough to improve the situation. Keep focussed on your goal which is next week as motivation.

best wishes

jane

 “ A trouble shared is a trouble halved “
AP7
Posted by

Maz,

That is appalling.  Unacceptable. Can you get your husband to stay the night with you? At least then you know someone will be there to respond if you have any problems, and he can raise hell until they are dealt with. And contact oncology tomorrow & arrange to be moved there. 

You deserve better than this. And you should not have to discharge yourself while you are still unwell in order to feel safe. 

flowerlady
Posted by

I am shocked and really angry on your behalf. I agree with Lass that PALS isn't enough.

How can there be no doctors? It's supposed to be a hospital. It's poor, dangerous and no one should be subject to such appalling treatment.

I hope you get home soon where you will be safe

Xx

Flowerlady x
daloni
Posted by

Hi

I am so sorry to hear how your nightmare in hospital isn’t just continuing but actually getting worse. You poor thing. 

For what it’s worth, my experience of hospital is that it’s never easy to get a clear answer because no one tells you anything. Last time I was in with a kidney infection, I deteriorated rapidly. The nurses spotted it and bleeped the doctors who came running. I could here them talking over my head and then they turned to leave. So I asked what was happening. The young on call doctor started to talk but he was standing and I was lying curled up on a flat bed, unable to move so I told him “you are going to have to come down here to talk to me because I can’t get up there”. He did then crouch down so I could hear him. 

The advice we are so often given is to trust the doctors, we are in the right place. But tbh I think in your shoes I’d be pretty sure both were wrong. 

I do hope you managed to get home today. 

Lots of love xxx