Pessimistic and no faith!

Morning Marie, you have had a lot going on, sorry to hear radiotherapy is not doing what we hoped it would, and only making you feel awful, but great to hear you a feeling a little better day by day, the antiemetics should help with nausea and fatigue. Looks like the support is working well, did you see about getting a district nurse, they are a big help, I have a few home adaptions in place too. best wishes for tomorrow, counselling was a little sad, i have known Jo for 24 sessions, but emotionally I'm ok and i know there is a waiting list and can guess some of them need counselling more than me, though i can start again when i have too. Been feeling crap myself, lots of niggles even had my first stay, 24hrs, at the hospice, and a few hospital meals, yummy, but back home a while now and feeling ok. 

Eddie xx

I am feeling much better Eddie and long may it last. It feels so good to be feeling "normal" whatever normal may be. I'm eating/drinking more and more day to day. Yes, palliative care referred me to a district nurse, she rang me and is coming to see me next week. The more the merrier huh. Was at hospital yesterday, saw radiotherapy doctor and usual oncologist. We discussed the radiotherapy and how it made me feel. Everybody agreed we had done the right thing in stopping it. They have provided me with a course of steroids to aid in my recovery. Do I need them now I'm feeling much better? Also, although they do work to pick you up in many ways, it also means i won't sleep. I'll have a think about that one. They also discussed me trying another chemo, gemcitabine, to start in 2 weeks. They believe the likelihood it will do anything is minimal but they believe i should still try as it could ease pain and such the like. I don't mind trying things it will be how it makes me feel that stops me. I'll have a read about it. There's no wonder you was sad stopping counselling, that is sad. Hope you are ok. And really sorry you have been feeling crap. Hoping you pick up and feel better soon. Take care and be in touch soon x

Hello Marie, really good to hear your feeling better, eating and drinking and hopefully sleeping well too. glad you also have a district nurse, mines fab and yes the more the merrier when it comes to support, though you will need a few more to catch up with my gang. I guess you wont miss your days out for radiotherapy or the side effects either, though i think you had to try it, and I'm sorry it didn't work. Steroids can give you a boost like you say and a few side effects as well are possible but as you are feeling "well" maybe talking through taking them with someone will help, Ask them the reason they want you to take them, though some steroids like dexamethasone will help fight cancer, and side effects with chemotherapy especially nausea and vomiting and are a good anti inflammatory as well, PS if you don't take steroids after 2pm your sleeping should be ok. Not my area chemotherapy though i think yours are IV so via PICC line, Apart from a pain in the, you know where i am feeling ok, kids coming soon, saw them yesterday before setting off, not nice thinking it could be the last time. Marie, i won't miss counselling, but i will miss Jo she helped me through some difficult times, maybe i will bump into her at the hospice. I'm resting up tomorrow, what are you up to. have you got plans for today. I am thinking of starting the ongoing with cancer course at Maggie's Nott's as not heard from Leeds for some time take care.

Eddie xx

Morning Eddie, yes steroids can help in some ways. I have had them before. They've said they want me to take them for a pick me up, aid my recovery so to speak. It's just I'm feeling pretty much okay now and don't want to disrupt this normality. I'll see how I go, maybe ill speak to palliative care about it when they come next week. I'm so pleased to hear that apart from the pain in the you know where youre doing good. Glad you got to see the kids AND really glad that you will get to see them again soon. That would be great if you get to bump into Jo at the hospice. It would be great to still have her in your life in some capacity. Not really up to much here. Yesterday we were expecting a new sofa delivered. I was really looking forward to it but upon arrival they couldn't get it through the door so had to take it back lol Great huh. Today, they are delivering the adaptation equipment and not sure when so tied in in that respect. It's all good mind, happy to be feeling well and pottering around the garden and house. Rest and take it easy and feel better soon. Take care X

 eddiel it was a spur of the moment decision we booked on the first Wednesday of our holiday after finding a beautiful engagement ring and got married the following Tuesday. We had taken the documents we needed in case we decided to do the deed while we were there but hadn't made any plans at all. It was a gorgeous day and on the night we celebrated with a meal at a place called Race Rock that had racing cars coming out off the walls and hanging from the ceiling. Sadly neither the place we got married or the restaurant are there now.

I'm sorry you are both having a difficult time right now. I was feeling really down and if anyone reads what I've written in my notebook I'm sure they would think I was suicidal. I'm not but sometimes do think what's the point however I know there is a point and even seeing the sunshine this morning makes me feel better. I've just realised I didn't log on for my zoom relaxation session with the hospice on Thursday. I really enjoy it I must message the lady that runs the session to apologise and say I will be there on Thursday. I've also found an accessible taxi service so I can now access the reflexology etc. The plan is I will use the taxi to get to the hospice but use the hospice transport to get home when time isn't an issue.

I hope you both have the best weekend you are able.

Hi EllieKate getting married on the spur of the moment sounds so romantic, though not surprised the place you got married is gone, Americans do like to change things. I too do relaxation therapy at Maggie's which is so helpful as is my hospice who provide me with therapy and activity courses as well as support. Have you had reflexology before, just started it myself recently 3 sessions and the result so far are good, I am so glad you can access your hospice, i wish more people would, though many think, wrongly, there just for end of life care, I can understand your down days, i think they are normal as are the negative thoughts that accompany them though we have good days as well I am ok, just have to rest a while and watch what i eat but hope you have a nice weekend, best wishes

Eddie xx

Hi Marie, It's so nice to hear how well your feeling and things are getting back to "normal", hope the home aids came early so you could make something of the day, I can understand your reluctance to start the steroids, i would be too in your position, but your right to talk to the PCT to be safe. what happened with the sofa, that's so sad, and a little funny, what will you do. hope you never got rid of your old one first, Most large items i buy usually come through the bay window. hope you have a good time with whatever you do today, No real pain, just uncomfortable, had to lay down earlier and fell asleep. Seeing Jo away from hospice would cause problems for her as even though i have stopped counselling as I will start again later, I am still her patient, do have her private number though. No plans till Tuesday, no visitors either, what fun, not complaining, say hi to Dave for me and take care.

Eddie xx

You make me quite envious, Eddiel. I wish I could access all the activities and therapies on offer where you live. I have to drive really long distances to get to the nearest centres that offer support. It really isn't worth my trying, especially as driving longer journeys seem to make me very uncomfortable. It's the onlly time when I really notice I have an unwanted passenger under my ribs!

Having said that, there are some things going on in the nearby village halls, like keep fit, pilates, drumming workshops, that I could try. They are not aimed at people with health issues though, so I guess I'd have to be careful not to overdo it!

It's great that you are able to get out to these supportive activities. Long may that continue!!

Hugs

Kate

aw that's beautiful. What a wonderful way to get married. I am feeling much better now thank you elliekate. I'm back to "normal" whatever normal may be, eating and drinking, up and about, less pain, going to toilet etc. etc.  long may it last and unfortunately no more radiotherapy. I have really dark days too, i cry and cry until i can cry no more, over the same things, i don't want to die yet, i don't want to leave my loved ones, im scared i will suffer at the end. I don't deny these feelings because that is how i feel and i don't think that will ever change. I just know i haven't got a choice. And some days i wake up and although them thoughts are still there i can shelf them and get on with things. I hope you sorted your zoom relaxation and thats great you can now access the reflexology, fab. Let us know how goes it. We have a gloomy day here, raining. I believe we're going shopping. How about you? Enjoy your day and take care X

morning eddie, the home aids came late afternoon so didn't get chance to go out. Typical huh lol No worries though, did some weeding and tidying in the garden. The sofa thing was funny. They just couldn't fit it through the front door. They had no option but to take it back. We have requested a refund and ordered another from ikea. It will arrive more flat packed which hopefully means we'll get it through the door. Just means Dave will have more assembling to do but he's cool with that. It's due for delivery tomorrow so here's hoping all goes to plan. And no, we still have the old sofa thank goodness. I hope your recuperation is going well. I hope you are resting. I don't doubt you will be bored. I believe we are shopping today. Only food so nothing exciting. Still, will just have to get myself a cream cake huh. You take it easy and enjoy your day as best you can X