Chemo delays and prioritizing patients

Hi

I'm so sorry you're feeling this way.

I haven't seen the NHS guidance you're talking about, but was reassured by the chemo nurses at my hospital that a great deal of work is going on to see that we continue to get the treatment we need. I imagine that for some of us delaying chemo will be the lesser of 2 evils, and the safer option but don't believe that as a group incurable patients will be "dumped."

Fear of the unknown is impossible to deal with. As you're feeling so anxious and upset could you speak to your Oncologist? You said you're on a chemo break so may not have an appt in the immediate future, but you could have a phone appt.

You could also call the Macmillan help line I've heard it's very good.

I hope you feel better soon.

xx

Hi Tinalay i just read a new NICE guideline and yes they are putting cancer patients in to groups.

Also on Evening standard was that people witj less than 1 year to live they put back in the queue for treatment.

I dont know what group I belong but it makes me dissapointed and sad.This is disqusting.My oncologist and nurse are both useless so i have no support or help.

I think I might to get a legal advice to challenge any decision to make regarding my treatment.I want to live too.

Now I am scared.

 Had NHS text telling me to stay at home for 12 weeks. This isn't how I thought my life would be.

Keep safe xx

Hi , I think there are quite a few people on the site who are feeling now like how they felt when they were first diagnosed. The last couple of days I’ve felt a bit anxious, down right grumpy, and wanting to withdraw from things, I think I’ve turned a bit of a corner with that. I read some things on the NHS and on a site specific to my type of cancer (metastatic melanoma) and it made me a bit jittery I think, like you were saying there the threat of the virus and the threat of the cancer, and the news about the Coronavirus seems non stop showing some people not concerned about the virus and not social distancing, which is what’s needed to slow the viruses spreading between people. If all the nurses and oncologist got I’ll we would be in a right pickle, and I had the nagging feeling that the virus could kill me far quicker than my cancer would, but that altering my treatment could also have a detrimental effect, but they are both colds and not having to be faced today, so today I’m shelving things until I know what changes are to be made to my treatment plan. 

I realise that the waiting rooms and chemo suites need to have less people in them to make them safer for staff and patients. The NHS have to make plans for how they are doing that and I think it was Boris that announced some appointments will be done by phone instead of face to face, so that’s good news to clear the area. To have less people attending the chemo suites, it seems like your hospital have a plan to move where they can do that, so that sounds good to, and that some people’s will be delayed so that’s good to making space. However I remember what I felt like when I had to wait to get treatment 5 years ago when I was too ill to start before and had to have steroids for a few weeks before being well enough and how nearly 2 years ago I had a 2 week wait to start immunotherapy as there was insufficient room in the chemo suite, until others finished their treatment. It feels uncomfortable but it was necessary. I didn’t feel the NHS had abandoned me then and I don’t think I feel like that now, or the last few days. I think I’ve just felt that they have some hard choices. I’m not sure if my treatment will be delayed or I’ll be put on a break to make space for others in greater need, or because I might be in greater need of avoiding the hospital, or a bit of both, or wether I’ll be one of those going in. I expect I might worry or be grateful either way once I find out as the uncertainty will be over, we’ve all been there many times with just our cancer results. I read something where they are changing some people’s treatment to tablets instead of IV as that decreases the risk, and for some adjuvant (preventative) treatment is being delayed as the risk of the virus when immune system is low is greater on treatment than without. So again it doesn’t reinforce a message for me of patients being abandoned necessarily but one of thoughtful planning. 

I watched a very old time tunnel episode set on the titanic, which brought to mind woman and children first in the lifeboats, and as incurable there must be a fear that if we caught the virus and a choice had to be made about respirators if there were insufficient that we might not fair well, but I hope those choices may not happen if people recognise how important the social distancing is and can delay the spread of the virus. At the moment I think the uncertainty of putting ourselves at risk visiting a hospital versus the uncertainty of having our treatment regime possibly changed is unnerving, but I think once we know either way I think we will show the great resolve we have all shown up until now. We might need a bit of help getting there and I think ’s idea of phoning the help line is a good one. 

Sorry for the long post.

For all of us under the "Incurable but treatable" umbrella we would be either Priority 3, 5, or 6

John

KTat home,thank you for your post.I have called the nurse asking whats the situation.I can't wait until somebody call me to tell me sorry we cant do anymore anything for you.I just left a message for her

I dont to like to live in uncertainity and if they delay my treatment I will have to find some money and go private.There is no way I will be left with pain again.I take the risk with the virus.I looking after myself.It should be consulted with me and respect my choice of risk.

Just dont seem to be fair choose and pick who they are going to treat.

You are right , it should be a consultation, I’ve read the MDT get together first and then after that they do consult and talk things through with the patient. I’m sorry the uncertainty is getting to you, it was to me to over the weekend, I’ve just been able to shelve it for a while, but it felt good to get out what my anxiety had been/is like in my reply. Glad to hear your looking after yourself, these are strange times aren’t they. 

Oh flowerlady    I am sitting here crying with the same thoughts as you. Is this how my life will end with no treatment at all and not even being given a chance Keep well Xx

I received a call today from the oncology secretary to say that I have not to attend the clinic at the hospital on Wednesday.  Instead I will receive a telephone consultation. I will find out what’s to happen then with my chemo.  I will let you all know as soon as I do.

My PICC dressing appointment for tomorrow has now to take place at an alternative clinic as my usual clinic is closing and being used as an assessment centre!

The sun will eventually come out and help see off this virus. All the specialists want the best for their patients and will be fighting tooth and nail for those for whom they are responsible.

It looks like people are being cast aside but I cant believe that of the caring profession. They must be working on plan a, b,c and so on. 

Just hold tight for a month or two and things will improve. 

Xxxxxxx