Daloni update

Sorry, but I tried to begin a new discussion but the site wouldn't allow me to post it so I had to put it here

Hi everyone

Can anyone help me regarding the list of discussions. I know that there is one because I came across it twice in the last 2 or 3 months. I don't know how I managed to get the list on those occasions. I always use a smartphone and I don't know if I have the same interface with say a laptop or whether I suffer with a more bog standard website.

I don't know about you, but I feel I am getting to understand this new site and I think there are some positive changes. That doesn't mean that I like it because I don't. Is it change I don't like? No, change is good as long as it's not a complete or almost complete change of site. The site is almost completely new with different symbols everywhere. Too radical for me and too undependable also. 

Well, can anyone help, please? 

Tvman xx

PS why does it say that this field is required? Why do I have to look at a list  andI can't send this post until I select a word (or more?) from the list of words to the right. That's an example of a bad change to the site. Btw I didn't choose to insert the above emoji and when I try to remove it the whole paragraph disappears. I thought I had lost the paragraph and I was annoyed and disappointed when it disappeared and I thought I was going to have to write a new PS that I didn't want to do. However, when I clicked on the large +.in order to rewrite the PS, the paragraph reappeared. What is happening? I think I'll send a copy of this post to Admin.

• Five minutes later I'm still waiting on this post to go into the site
• Ten minutes later I'm still waiting on this post to go into the site. I think I'll copy this and insert it into a thread because it doesn't look like it's going to start a new discussion. VERY annoyed and disappointed.

Thank you . It is hard to know what to say, isn’t it? I’m glad I’ve been able to reassure you. I think reassurance is a very important thing to feel. Along with hope. That’s important too. And certainly I forgive you for barging in to say something so nice as thank you. 

Lots of love 

Daloni xxx

Thanks Popgate. A massive rainbow hug from you. Just what I need today. And every day, actually. I’m finding the lack of hugs to be a real issue. I’ve been lucky enough to have had a life full of hugs. My nieces, who I helped raise, then own my daughters, saw to that. I don’t think there’s been a day without hugs for over 30 years. Then I came here to the hospice. Visits are limited so I don’t have a visit every day and on those days really miss having a hug. 

So with love and hugs back to you and your hug gratefully received

daloni xxx

Hi Gragon

Thanks for such a lengthy reply. I’m so sorry you had such awful weather on your holiday. It feels very unjust, especially after suffering through the high temperatures of previous weeks. Never mind owing me a walk on the beach, I think you owe you a walk on the beach. 

I’m not sure what to say about your scan results other than to notice you sound worried? When is the next, and crucial, scan? 

As for the diabetic checks, I can see they would need an element of face to face contact. How is a podiatrist supposed to work remotely? Talking of which, I raised the thorny issue of toe nails with the nurses here. They haven’t been cut for over seven weeks and needed some attention. Ah, said the nurse as she peered at my nails. Yes, she said. Trouble is we have to be trained and signed off to cut toenails and none of us has been. Ok, I said. How do we get over this because my nails need cutting regardless? Later that day a lovely well being lady turned up. She gave me a fabulous hair massage and finger nail filing before moving onto my feet. She attacked my nails with some alarming looking industrial strength clippers and an emery board. They now feel comfortable and look presentable. 

I’m very excited to find out what your pumpkin weighs and how you cook it. In my opinion there are no ways of cooking pumpkin that either make it delicious or where the dish wouldn’t be more delicious with another  vegetable substituted for the pumpkin. I’m open to persuasion , however. 

That’s it from me. Toodle pip

daloni xxx

Hi Gragon

When is your next scan? I hope you don't have long to wait as it can be an anxious time

X

Hi Daloni

If you don't mind me butting in here when you mentioned podiatrist, I have my toenails cut by a podiatrist and in our health service in Northern Ireland I don't have my nails cut until about 12 weeks. When we were in lockdown there was no toenail cutting. Even now when I ring at about 8 to 10 weeks there's an answer phone that says only emergency work is being done.

And yes, when it was better times before Covid19 the usually young lady wields a pair of wire cutters, the type I have in my toolkit and the type I used when I worked as a television engineer (a TV man as we were called!!)

The ladies are very skilled in the use of them, haven't had my toe cut yet! I say ladies because I've yet to have my toenails cut by a man. I always raise a smile from even the least chattiest girl when I ask "so what was happening when you put the x in the wrong box"? I like to have a good chat with them as they work.

Take care Daloni

Tvman xx

Hi ,

It's nice to see you on the site again and to see Lasshere as well.

I don't know if I was worried about my scan results or not.  Every previous scan has shown a reduction but the oncologist this time said that it was stable but did not indicate any shrinkage.  That would mean that it was still working but not as well as it was previously.  However, that became a moot point today when the research nurse rang me.  I mentioned the difficulties with the scans and she had gone through them and consulted with a radiologist and she confirmed that there had been shrinking of the 20% required for me to have a treatment break.

It does sort of make me wonder what my Oncologist does other than sign my prescriptions and scan requests.  God  Bless the research nurses.  I only found out yesterday that the nurse I see is actually the Senior nurse who leads the team of research nurses.  I think she may have had me allocated to her after I made such a fuss about having to change hospitals without being consulted but whatever the reason I am glad that she was.  She certainly knows her stuff and is sorting everything out for me to make it run as smoothly as possible.  I can now get my scans and blood tests taken more locally without having to trek through to the hospital each time.  I only have to go to Hull when I have my oncology appointment.

My scans are every three months flowerlady so it's not too long but from now on all my scans will be at Scarborough again and it will be easy for them to compare them to the previous scans.  Apparently another benefit is that staffing levels are better in Scarborough than they are in Hull and the reports tend to come through quicker.  I did advise her that the last time there was a delay I complained via PALS as the scans determine my treatment according to the trial protocol so if the scans are late my results would not be valid.

I haven't heard back from Podiatry yet but you just leave a message anyway and they either get back to you or send an appointment letter.  Hopefully it will be an appointment.  It always strikes me as a strange choice of career but then who am I to talk!  I worked with offenders.

I have seen male and female podiatrists and been happy with both.  The only poor cut I have had was done by a trainee (under supervision).  They were cut to the correct length and smooth but were a bit wavy compared to the other times.

tvman, I don't think I can help with loading the discussions page.  When I log on and go to whichever group I am in my screen always lists the discussions page both on my laptop and my android phone.  I know that I spent quite a lot of time when the site was updated setting my notification preferences in my account setting and I may have set it up there although I honestly cannot remember.  I do find my laptop easier to use and more consistent.  Things change on my phone regularly.  Yesterday I could not go back to my home page and a couple of weeks ago the threads were displayed so that each post was shown after the post the person had replied to.  In order to find this post for example you would have had to have looked for Daloni's post to read it and it would appear before Flowerlady's and your post.  Very strange and not a little bit confusing.  Hopefully admin can help you sort things out.  I have always gone in via the discussions page even before the upgrade as it makes more sense to me.

Wishing everyone all the best,

Gragon xx

You get a massive hug from me EVERYDAY!!!!!!!!!!!!!!!

Hi tvman

To get to the list of discussions from here I would simply go to the top of this page and click on “living with incurable cancer”.

I hope that work Mx big yiu xxx

HI Daloni! I'm glad your feet are sorted...my Hubby always had trouble with them..and now with covid....so here we go i now cut them, it may not looks so nice but it works lol. I hope you get some visitors today and a lot of hugs!!! Be thinking of you!! Pet