Treatment during the pandemic

Hi ownedbystaffies

Thanks for sharing this. The guidance that NHS England published on March 17 setting out the priorities for (not) treating cancer patients in the event of the NHS going tits up appears to have disappeared. As in if you try to find it, the page comes up “page cannot be found”. Presumably this was in the face of utter disgust from patients and clinicians. Quite right too. 

xx

Well I think the word Care has gone AWOL somewhere in the process. 

My husband and I were told on 19th March by the oncologist that all was OK just keep on the meds. When we looked amazed and pointed out I had had my meds stopped for 8 weeks and 3 other doctors had said the oncologists would talk to us about the scans, all info we had given him two weeks earlier he ran off to look at notes. He then explained it was very bad news and because of the Coronavirus and lack of resources for cancer patients he could not offer any treatment. In the corridor as we left he then mention something about a DNR and referring me to Pallative care.

Since then I have received 2 letters from the oncologist telling me about the spread and why I am not being offered treatment. Then one with a completed DNR form saying this has been discussed and sympathy about the progression. Today I have got a letter from a hospice saying the hospital Pallative care team have referred me to them with no explanation why and that they will be in touch with an appointment with no indication of when. Now they may be very nice but the hospital is a matter of minutes away whereas the hospice is the other side of the city and very difficult to get to without transport. 

Not only has Care gone AWOL but consultation with me the patient seems to be absent aswell. I do need help to understand what is going on and what to expect as it seems I am now on that slippery slope. However surely you need to feel part of things at this stage more than ever. 

Hope other people are having better experiences. 

There's nothing I can really say other than that I think this is a sh*t situation, and I'm really sorry you're in it!

️

Lass

Xx

Dear Maz

Your experience has been appalling. I can't believe it. Is there anyone at all you can speak too and complain because I do think you need to complain. Your "team" appear to be the most incompetent bunch of xxxxxxxx.

I am so sorry, this is a time when you should be looked after and cared for, not lied to and left abandoned.

Take care xx

Hi

I can only echo Lass. I am at a loss to understand how you’ve been failed at every level. It’s extraordinary and extremely worrying. The care I have received from my oncology team, GP and the hospice is a million miles away from your experience - thank goodness. 

I don’t know what I can do other than send you a virtual (((((hug))))

xx

Thanks to you all 

I really don't know what to think as l have no idea what it all means. My oncologist has always said that when he feels my time is near he will tell us. Is sending a completed DNR form, condolences and doing a referral to Pallative Care his way of saying it is time. At least I have a number now for the hospice so on Monday I will ring them. They keep mentioning about pain relief in letters but what I really want is help with my breathing. The letter says while I wait I should contact my GP or oncology team now my GP has not got a clue what to do and the oncology team is the oncologist as I am not on any meds. They even cancelled my bone injection on Thursday without telling me. I asked why as to my knowledge it did not affect immunity to which they said it was so I didn't have to come to hospital. Well that only works if you know not to. Next thing you know I will have more bone pain. 

No use moaning and complaining I think will be futile as we all have to support the NHS best we can. Still haven't heard anything from my last letter when I got hypothermia and the roof fell in on me because they did not move me. My oncologist however did mention that in his letter also as he was outraged about it when I had been so ill. 

Need to concentrate on the fight ahead and getting things in order. If I go too quickly there will be no funeral as I am not into this streaming business. I wanted everyone to get together and have a good church service with loads of singing and off to the pub afterwards. That might be getting too far ahead of myself. 

I hope you find the hospice more helpful. How about going to your GP and having a bloody good rant. It may make you feel better.

Xx

Hi

I should say your funeral plans are getting too far ahead of yourself. I hope the hospice will help you get a grip on this situation and get you help with your breathing. What about making a list of what matters to you most before you speak to them on Monday? 

xx

Hi Well I don't know about you having a rant but I've just been ranting on your behalf to my husband saying how incompetent your team have been and I don't know how you and your husband have put up with it this long! His answer to me was "Calm down, it's not something you can sort!! Tell her husband (not her, she has enough to deal with!) to contact his local paper, MP, Director of the Hospital plus anyone else he can think of and explain the Care she just hasn't had!"  He also couldn't understand why things hadn't been sorted before by requesting a New Oncologist, which he knows I would have done, long ago!

Daloni is right, it is far too soon to be talking funerals! Hospices are great at getting things sorted, so I hope you write everything down as D said because you don't want to miss anything out when you finally speak to them. They should manage to get you help with your breathing at the very least as that alone must be distressing!

Please don't give up, there IS HELP out there, you or your husband just have to find it! Please let us know how you get on this Monday!

Hi folks I got my husband to ring the hospice today and ask when anyone was likely to get in touch. They said it would be another 3 weeks I was going to leave it but today was a bad day and I thought no I will fight my corner. I pointed out I had already waited over 3 weeks because the referral had been passed around. I was struggling getting a scan as they were ringing with a time but as soon as I mentioned cannulas had to go in my foot they said they would get back to me and never did. When I said I had been sent a completed DNR in the post, I was on no meds at all and my obvious breathing issues it got a response and I was told someone would ring back. A very nice lady rang back and she is coming to see me tomorrow. I also rang the scanner people and they have booked me in for Wednesday and think they have someone to do the cannula. 

After that I was so tired I had to have a lie down. Just feel absolutely drained today. 

I am trying to get my husband up to speed with the bills, metre readings, insurance renewals but he is internet phobic (unless it is watching golf on u tube). People keep saying not to worry he managed before he knew me but that was when you went into shops to pay things with cash. He hasn't even got a credit card. Only just got him swiping his card at a checkout rather than typing his number in every time and holding the queue up. 

You find yourself thinking of what you should have been doing now like planning retirement. At least holidays and meals out etc are off the cards for everyone at the moment. 

Thanks for being here and keeping me going.