Another candidate for the hospice

Well done for such an articulate message you must be feeling better and it is lovely you are in the hospice and able to go in the garden and have visitors including noodle.

the best thing is to have the pain under control 

I have my pain controlled now and it makes so much difference to coping or not coping. I am taking slow release morphine which controls the headaches and makes me able to function.

i am even going swimming in an outdoor pool tomorrow with my daughter  you have to change on the grass and leave your clothes in a chalked out area. We have bought changing towels with a hole for the head so will see how it works out. Good to try something new. I am enjoying the sunshine and so pleased you can do that too.

lots of love 

Ruth xxx

Hello Hello Daloni, good to hear that you are being well cared for and enjoying the garden. My husband has a work video conference so I to am in the garden in his hammock constructing a reply but know if I take too long I get chucked out. Knowing that you need a distraction I will do a longer reply to cut and paste a bit later. Ruthjp’s changing towel seems amazing, and brings to mind my childhood and Victorian BBC dramas.

i will do another post soon.!

Hello, so nice to hear from you again, I'm glad your pain is under control and you're able to enjoy the garden and your family along with noodle.

My chemo was put on hold this week as my liver function had risen slightly so have to have bloods taken next week fingers crossed.

I'm hoping to go out today but will have to be careful if it gets to hot as it wacks me out.

So for now that's me trying to stay positive and keep going

Sending you and your girls all the very best. 

Love and prayers

Devon cat xx

It is so nice to hear from you daloni, we are like addicts awaiting some daloniness to brighten up our lives. Pain control seems to be the only thing that matters and to have a bit of that must be welcome.

If you can get closer to home that would be useful and I am sure your team will be doing their best.

No one knows whats around the corner so hang in there while we all cross fingers. Xx

Hi ,

It's lovely to have you back again and sounding much more cheerful and relaxed.  I'm pleased to hear that the medics have got your pain under control even if it is at the cost of your mobility.  I love the idea of the stewards rolling your bed from your room on the third floor into the garden.  How do you cope with the drop?

I've been in my garden already this morning as it is supposed to be very hot today and being fat I don't cope very well with the heat.  I picked a large container of French beans and a very large courgette which had been left a day too long.  I have another three courgettes to pick tomorrow and about four in the cupboard.  Luckily they keep well but we are going to be eating a lot of courgette in the next few weeks, stuffed, in ratatouille, cooked in butter and maybe even in courgette and chocolate brownies.  The French beans are often eaten fresh but also get blanched for a minute in boiling water and put in the freezer.

You must have been thrilled to see your family again, it must have felt like it might never happen.  It certainly sounds like Noodle was worried about you and wanted to get the hospital smell off you as soon as she could.

My sister's sorted through our Mum's jewellery after her passing and divided anything decent between us all.  All the costume jewellery went to the charity shop but it made my older sister think.  She only ever wears a few bits of jewellery so she kept them and let her three daughters pick through the rest whilst she was there so that they didn't have to sort it after she was gone.  It also gave her the chance to tell them any "stories" associated with any of the pieces whilst she was still here.

It's good that you have managed to get back onto the site, we are still missing a few regulars and I suspect that at least some of them are turning the air blue with their language trying to get onto the site.  The community team are going to be busy over the next few weeks resolving all the issues that come with the new site. 

Talk to you again soon.

love Gragon xx

So glad to hear rhte hospice have got on top of the Pain Daloni but so desperatley sad that you are in the position you are in. is here no radiotherapy tha can help the spine tumour?   glad you have managed to get outside. the sunshine on your face is good for the soul. Love to you x Lynn 2 

Hi Daloni, you wanted to know everyone’s news, Annette is still having trouble getting on the site, I’ve offered to pass on any news but she may well wait until her email not being recognised is sorted, but she did want me to pass on her thanks to Gragon who was concerned and offering help. I am glad you have had so so many replies while I’ve been clumsily crafting, good to see tvman has made it here.

My news, well my MRI on my liver came back nothing of concern HURRAH, after the MRI of 30 mins, I know others have had far longer, but mask on breathing to order for an asthmatic, not my favourite thing. My CT scan to see if Pembro is working again after my covid break for treatment is a YES, hidden after the 4 lymph nodes have shrunk was the fact a new one has enlarged but they are expecting/hoping that it will go down on the next scan in 3 months. I’m very relieved as I was not looking forward to starting Ipilumamab if Pembrolizumab was not holding things back. I do have the hope still that I will get back to my 2017 state of being off treatment and a complete responder (no evidence of disease) again, but these blips take me back in my head to 2015 when I was diagnosed as incurable and told less than 12 months and here I am 5 years later. I know you will cheer me on, and you know I will feel a little embarrassed saying this at this time when you are in the hospice, and at some point survivors guilt will crop up, and I will try and bat it away.

Lockdown for shielding people should end today (unless another announcement is made), but guess what, my husband is booked in for a procedure to put a camera in to have a look around and before that we have to isolate for 7 days, he is to have a covid test on Saturday and his procedure on Wednesday. It was a bit ironic taking a break from treatment to have Chris my husband fall ill. We have been internet shopping for food since March and Chris has done a good job of getting a slot each week at the £2 or £2.50 rate of delivery, Tesco have now introduced a £4.50 rate boo hiss but they also have a 6 month offer which you pay £7.99 a month for x6 or a lump sum of £47.99, we then realised if you pay the 6 monthly fee by Tesco vouchers it’s only £16 worth of vouchers, so that’s what we have done. It means I can choose the time for the delivery where as in a priority shielding slot they tell me I believe, and I can book 4 weeks ahead and have priority access for Xmas. My KTatHome name came from hating being stuck at home alone but now we are stuck together which has advantages and disadvantages like everything else in life. This year is the first year I have grown my own tomatoes, salad leaves and courgettes, and I have finally had flower [edit Flower ! I mean flour] delivered to make a courgette loaf cake. (I miss Lass as she would have had helpful suggestions on how to not mess it up).

I am still playing Pokemon Go and had to laugh or at least smile yesterday, the local area Facebook page was telling of a suspicious man lurking by the trees in the open space in the middle of our housing estate, looking at his phone and at the houses, they thought he was casing the joint. There was much debate on wether he should have been reported to the police, why would he lurk in that area! Someone pointed out he might have been playing Pokemon Go, still the debate went on about why he would be behind a tree. I never post but on this occasion I had to stick my hand up to say that although it wasn’t me and he may well have looked suspicious but I too play Pokemon Go and because of where the Pokemon Gym is I stand near the tree to be a good social distance away from the path and importantly it’s the only bit of shade which I need for my health. It must be embarrassing enough for this poor chap if he was playing Pokemon Go without everyone accusing him of casing the joint as a burglar. Thank goodness it just created a like and not a continuation of burglar talk or PGO ridicule. I have noticed that where my immunotherapy has been moved to I can reach a Pokemon stop which was great last weekend. I will now stop talking about Pokemon as I know most be wondering what I am talking about but it brings me a lot of joy in firstly as a walking motivation, collecting the Pokemon and collaborating with others, and with lockdown they altered some aspects so people can still play from home. 

I don’t have any pets but I can imagine the joy of you seeing Noodle Daloni, but I do I’m afraid shudder at being licked but a cuddle with a dog is lovely. As a teenager my household had a Chow who looked like a teddy bear and was lovely to hug. I have taken in lockdown to watching YouTube videos as a cheer up, especially Keyush the stunt dog, it’s a husky and I love the way the owner writes what the dog is saying. So if you have enough battery power have a look we watched quite a few, oh heck I will put a link in but won’t be able to remember if it’s one of the better ones but I hope you or some of the others like it https://youtu.be/r_Gp8-ZT8q4

I have wittered on for too long, (gosh I hope this posts), I hope you are comfortable and that the 3 good things plus any other toolbox of coping things you have are letting you enjoy each day as that I can imagine is very important right now.

virtual hug from KT ((()))

Hello again daloni, I don't know why I post little homilies, they really are neither use nor ornament as that Arts and Crafts man said. I was just rereading gragons post you could do with him keeping you company, he is really entertaining and I know makes you laugh.

We are going out today, managed to book the last two tickets to Sissinghurst, I am sure you are very familiar with the gardens. It is going to be hot but we are taking water and some wine which we will consume under a tree. Wife's MS doesn't do heat so big hats to be worn.

I am so glad you can get to taste some outside air and enjoy their garden, get some big clippers and give Noodle a groom when he is next back, he would appreciate it I am sure.

Xx

Courgettes are versatile but I like them sliced thinly longwise and fried ar grilled with oil.

they are also good for vegetarian kebabs 

I'm so pleased you are getting pain relief, it was a worrying time not being on line to hear how you were especially with you being in so much pain. Your family visits will be nicer with less pain so you may enjoy each other.

I now have Skype calls to my son its nice but not the same as in the room. My new Chemo is causing a few problems but just hope it works for a few months. My Palliative care nurses are in touch with me makes me feel a little less alone.

I hope you enjoy your garden visits--- I'm still thinking I can keep up to the weeds ( I can't) .

Much Love to you and your family

C J  XX