Chemo delays and prioritizing patients

Hi flowerlady

Try not to be scared, you have a great number of people in the group to get you through this, I was wondering how we would be told. You can be sure now that you haven't been forgotten and slipped through the net. I expect to be told also but it hasn't happened yet, I have a blood cancer so I should be on the extremely vulnerable list but until I get the text, email or phone call I can't be sure I haven't been forgotten.

I remember you saying you have a boyfriend, does he have to self isolate also?  Does my wife have to stay at home also? I don't know the answer to that one yet. She is a classroom assistant and last week she had a cough and was phoned by her principal and told to stay at home for seven days and the seven days at home finishes today, Tuesday. She had a text from him yesterday to say that all those who had to remain at home for seven days have to come in on Wednesday but for us, that doesn't make sense, there were only 7 pupils that turned up yesterday, Monday. There are at least 14 teachers in the  school who are being put on a rota to look after the children. If I have to stay at home for 12 weeks then I would like her to stay also but I don't know. Can anyone answer that one? Clearly I don't want to be at risk of her bringing the virus home. .

Flowerlady, you are in my thoughts and if you are alone I'll make sure I contact you regularly, either by pm or on site. Promise.

Take care Flowerlady

Tvman xx

Hi wino

I posted a message to Flowerlady a couple of minutes ago, it applies to you also.

Tvman x

Thank you i have been up since 4 30 just crying and worrying that i will be left out i am going to phone my hospital today to see what the situation is again thanks for your support Xx

Thank you Tvman

I was scared yesterday but we are so resilient as human beings. The unknown is scary. I am going to concentrate on the things I can do, be grateful for what I have here and now.

Thinking of you all, sending you all much love. Please keep safe, xx

Hi

Goodness it’s all such a worry. I have been wondering how long my clinical trial will continue. I must be priority 6 so, to use the Titanic lifeboat analogy, I’m not expecting a seat if the good ship NHS goes belly up. 

I don’t feel as though I’m being cast aside - or at least I choose not to. I know I’ve been living on borrowed time for a least two years now. I can see that if (and right now it’s still if) choices have to be made about who gets treated then it won’t be me. At best, treatment will extend my life by a few months. If I don’t get treatment and that’s the cost of saving someone else’s life then so be it. I would rather this didn’t happen because people are acting like idiots and still visiting friends, gathering in parks and the like. So I hope everyone starts acting responsibly. 

Hopefully we will all get through this and the kinds of choices we fear won’t have to be made 

xx

Hi daloni, I’ve been told clinical trials are stopping taking new patients (as of about a week ago), especially phase 1 & 2, think some phase 3 are allowed to continue.  However if you have signed the consent form and are on treatment on a trial, it’s not ethical for them to then stop, so you carry on until the usual criteria (progression etc).  
The reason given to me was not so much to free up staff as to stop people getting ill and having to be hospitalised etc. It made sense but hard to hear.

love heather x

Hi tvman, I’m just picking up on your comment “ if I have to stay at home for 12 weeks then I would like her to stay also”, my text about being in the extremely vulnerable group give a link to the NHS instructions, I’ll put in the link below. My next door neighbours have an extremely vulnerable young adult their son, and both their other daughter and the mother work in schools, they have both been able to talk to their Heads and are both at home not working to protect the son. By that example I would have thought your wife could do the same. 

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

You know that the Macmillan phone line is open to help you 8am to 8pm, but may take a bit longer to get through to than normal but it’s 0808 808 0000.

Best wishes

Hi, and  

I received that news too, just yesterday.  No new patients are being admitted to trials for the duration of the crisis, though treatment for those already enrolled will continue for the moment.

For me, that means my treatment break continues indefinitely. I had a series of bad reactions to immunotherapy (Pembrolizumab) on my last trial, so I've had no cancer treatment since November. Just when I'm finally improving & ready to start my new trial, this happens. Worrying, but there's nothing to be done about it. As you said, it is hard to hear, but it makes sense.

Hi Kt 

Not often we speak but we've both been here for a long while.

My wife spoke with her principal just an hour ago, and he has told her to stay at home with me for the foreseeable future and not to worry, everything will be taken care of regarding the official side of forms etc. That's a massive weight off her shoulders and the tears have stopped. It's a lovely sunny day here so maybe we'll get out into the garden to let the sun's rays kiss our faces.

You take care of yourself Kt and I appreciate your concern for me.

Tvman xx

Hi tvman, so pleased your wife’s work is sorted the way that you wanted it to be .

Yes we have both been around for a long time, and hopefully will be for a lot longer ! 

Looking forward to you sharing more pics of your garden

Best wishes