Pessimistic and no faith!

Good afternoon and a happy New year to you. I hope you and yours had the most wonderful time. 

Yes, they do flush. Every time. And they leave the unblocker in for the right time. It just doesn't seem to want to work. Monday chemo day was absolutely dreadful. I arrived at 10 30am as requested and was still sat waiting for treatment at 6pm. Absolutely exhausted isn't the word. The reason being the treatment was delayed. And when it arrived the picc line wouldn't work to which they had to send me for an x-ray. I had to then wait till they confirmed it was okay to proceed with treatment. And it was so late there wasn't time enough for the unblocker so they said they would do that when I'm next there. Absolute nightmare honestly. I shall speak to oncologist next week at my appointment. Deary me!!

Oncologist dropped the steroids which I believe has brought about the feeling of pain. I am on increased pain relief. I'm taking a 5 ml, sometimes 10ml, Oramorph on top of my Zomorph. Helen said the dose is so small it doesn't warrant upping my Zomorph. I feel as if I have it in a happy place again at the moment. The pressure from the tumour on my heart isn't great. I really am having to recognise limitations. Like the stairs have become more of a problem sometimes. I already keep a diary. Helen is coming tomorrow and I will meet with oncologist next week. I will discuss these issues with them. 

I'm sat laughing here about your 5 Christmas dinners. It sounds absolutely awesome. What a wonderful time you must have had. Ace!!!! I believe that 4 Bells is on our to do. I have had a lovely, quiet time of it. Not done much but enjoyed all the same. Dave has been working so it has been limited as to getting out but it's not bothered me. Lovely with grandson here. He has gone home today boohoo!!

How did your scans go? And dinner with your allotment neighbour? I hope all is good with you and yours and looking forward to hearing your news. Take care X

Hello lovely, and thank you, It's been lovely Marie, as I hope it's been for you, and a happy new year to you my friend and all your loved ones.

Wow Marie,7.5 hours waiting for treatment,  I'm dumbfounded by this department, and so sorry you had to go through this, and even having you there all day, they couldn't do their job, absolutely tell your oncologist everything, especially how it affects you emotionally, I think deary me, doesn't quite explain it.

That's so nice to hear, your in a good place with your pain relief which I hope remains so for some time, and at such a small dose too is wonderful, and well done keeping a diary, they can often shine a light on things and give answers, it's great you have Helen and your oncologist on your team, regarding your heart, were you having tests on your pericardium, and the fluid within it?.

That's a shame Dave having to work, though fab, you had your grandson with you, I hope Dave gets some time off when you can make the most of it, well Marie, our trip to the 4 Bells was on your recommendation, but the food was good, but don't sit near the doors.

It's not funny Marie, all those dinners meant no room for pudding, lol, but it's been nice, my stay in hospital was a pain, literally, but it's easing and hopefully soon I will be able to sleep laying down again, been out to family most days, and friends, Lynn my neighbour is lovely, and great to talk too.

Scans went well, as did  bloods, I  had a referral for gastro on the 24th, and tomorrow just 8 days later I have a gastroscopy, Mandy starts chemotherapy tomorrow as well, and Friday we are expecting 2 new members of the family, and Saturday I'm taking Jean and Joyce home and if the twins arrive on time, we shall make a little detour to see them.

love Eddie xx 

Good morning Marie,  the newest members of the family were born this morning Lesley and Pauline arrived just after 3am, Lesley the eldest is 6lb and Pauline 10 minutes younger is 6lb 6oz, mum and babies are all doing well, granddad couldn't be happier, will post more later as I'm visiting friends in Scotland, after taking my aunties home, I've been lucky to avoid the weather your getting down there, but it's coming here and as I'm in the Cairngorms would get snowed in, so home today, catch up soon.

love Eddie xx 

Aw Eddie that's the most fantastic news and thank you for sharing it. Awesome!!! Good to hear all is healthy and well. Ace!! Good to hear too you are enjoying time in Scotland. Yes, the weather is dreadful. Even though I love the snow, that and the cold means that you just can't do much or venture far. Be careful and have a very safe journey. 

Well, no chemo today. They kept it as my week off. Unfortunately neither did I make it for a picc dressing change on Saturday. Amy has an upset tummy cold bug and I too have not felt that great although I did pick up yesterday afternoon and feel better on waking today. 

Helen called to see me on Friday. She is happy with the pain situation in that she is happy with the dose of Oramorph I'm taking in addition. But she said should it rise above 3 x 5ml a day she would review the Zomorph. Not there yet. The last heart thing I had was another echo and they said things were not that bad. The fluid near the heart wasn't a problem as yet. When in certain positions means it is difficult for me to draw breath, when laid on my back for example. Or, when I climb the stairs can be difficult. I am learning to recognise my further limitations. 

Good to hear all is good with you and your scans and tests went well. Great news. Hope Mandy is well and all went well with her chemo. A little sad I've not been able to get out for one reason and another but hopefully that will all change now. 

Anyway, enough of me! What news have you and how are you keeping. Thanks again for sharing the wonderful news YAYYYYYY  

Hi Marie, thank you my friend,  everything went well, apart from the little ones wanting to spend another day with mum, before making an appearance, Lesley and I are going to see them later in the week, I was hoping my aunties could have seen them, I'm sure they will one day.

Scotland was lovely, the drive up was such fun, 'mostly " and my friends were wonderful, but the drive home was the scariest drive of my life  

That's good regarding the chemo, and I'm not surprised you didn't  get to hospital on Saturday, we saw the weather reports, we were in Scotland, and it wouldn't have been safe to go out, and sorry Amy isn't too well, I hope she picks up, like her mum.

If Helen is happy, so am I, she's fab, and the news from your Echo was reassuring, what positions are most comfortable with you Marie, how do you sleep, have you had to work out what's best for you, or have you been offered any advice.

Endoscopy results good, will get heart and spine results soon, I'm not sure about the heart, but  not hopeful regarding the spine, we will see 

Mandy, got through chemotherapy well, and I hope all her cycles go as well, I'm ok, only 10 appointments this month, so can catch up with family and friends, as long as there's no ice, with my bones, I'm not sure if I would get up if I fell, so won't risk it,

I'm sure you will get out, the snow has almost gone, and it's forecast sunny if cold, how are you doing with your walking, and did you contact Maggies about the relaxation course?.

Other than Scotland, I've just had lunch with friends a couple of times and spent time with family, we will see the twins Wednesday/Thursday, and out for lunch with Emma on Wednesday and see friends tomorrow between appointments, where/what would you like to do this week Marie, sometimes just being outside is all you need, I hope Dave is ok,  no doubt he's working. PS the babies are not identical, and thankfully they don't look like granddad. 

love Eddie xx 

Good afternoon. No I haven't had any advice regarding what positions are good for me. I've kinda, like you said, worked it out myself. I can only lay/sleep on my right side. The tumour is on the left and prevents me from laying on that side. Sitting upright back straight is comfortable for me. I can lay back on cushions but it is difficult finding the right angle. Because the tumour is growing up into the neck means that should I get the wrong angle bunches up my neck and this is when breathing can get difficult. I have to hold my head up, look up kind of thing. What a palava. Also the growth of the tumour puts more pressure on the heart and that doesn't help. 

Good to hear most of your test results went well. And so glad to hear Mandy's chemo went well. They will all go well she's a toughie. Give her my love. We were going to have a stroll round West bridgeford today but it was so icy and cold. Not unduly bothered I have an appointment with oncology tomorrow and will have a stroll round Sherwood afterwards. Friday I'm back at the hospital for bloods. Ughhh what fun lol 

Didn't contact Maggie's re the relaxation as I will be attending Hayward House on the 16th. I shall see how that goes first. How are the beautiful twins. I hope they do look like granddad and hope they inherit his strength too. You shall have to send a pic if that's ok with everyone. I expect they are utterly gorgeous. Amy and Dave are both good thank you and yes Dave is working lol. Thankfully he mostly works from home so he's still around if needed. There are things I can struggle with sometimes. 

Glad to hear Scotland went well. Shame your aunties didn't meet the twins but yes, next time yes. There's no surprise the journey was scary with that weather. Just thank goodness everyone is okay. 

How are you diddling and what news have you. Take care X

Hi, Marie, what a palaver indeed, trying to get comfortable enough to sleep, do whatever you must to do so, have you discussed this with Helen, I'm sure she would have something to help. You could ask about a hospital bed for home, 

Bloody appointments yay, good luck with yours tomorrow, and mention last weeks fiasco and hopefully Fridays will be good, well it couldn't be worse than last weeks, only 6 appointments for me + 1 for Mandy. and Hayward House a week tomorrow, I hope you enjoy yours as much as I mine.

Freezing here as well Marie, luckily very little ice, but minus 10 tomorrow, I'm stopping in bed, well I can dream, 2 meetings and Mandy's chemo tomorrow rule that out, though like you I'm staying in, just took Poppy out, and your wise not to go to West Bridgeford and I hope Fridays a lovely day for your walk, The 4 Bells and Woodborough? Is nice.

The twins and mum are all good thank you, I  haven't seen even a picture of them yet, but Lesley and I are hoping to see them on Friday, nearly 3 hours away, but that doesn't matter, I can't wait, bloody appointments, and I will see about a pic, though not on the open forum, good the family are ok, and Dave's at home most of the time.

Scotland was lovely, the drive up was a little sad at first, with J&J, not seeing the little ones, but they will in a couple of months, and Angie and Annette were so lovely too.

I have DN and therapy Thursday, and Mandy, then clear of appointments till next Tuesday, though I think lots of rest after seeing the twins is needed, so will crash at Mandys for the weekend, and maybe a couple of take aways, I'm sure the boys would love that.

How about you Marie, anything on for the weekend, maybe stock up on cheese, or tick off 1 or 2 thigs, on your to do list,

Sheila, Lesley and J&J are taking me to the Scilly's in March, Christmas present, as that's where they are to be married,  FAB. Marie, I sent you a  private Email, did you receive it?.

love Eddie xx 

Good morning, good morning. 

Getting to sleep is a chore. I just have to keep trying until I eventually find a comfortable position where I feel able to breathe easily. I don't think it's the bed to be honest. It's what position I can get in the bed. I have discussed it with Helen yesterday. She has referred me to occupational therapy to look at further aids and adaptations and exercise. They're coming on the 23rd. Maybe it will be discussed then. 

Hope your appointments went well. I saw oncologist, well, her registrar, day before yesterday. I told him I believe the tumour has grown bringing about pain and pressure on my heart in breathing. The Zomorph has been upped to 20mg a day. Started it last night and no pain so far. They're also sending me for a scan. I shall be scared about that as I know deep down the growth is bringing me closer to my time. Anyway enough of that for now!! 

Oh this is amusing. They have taken the steroids of me. They're saying as I'm only taking 1mg a day means that it's not doing anything anyway. It's just a placebo. All in my head so to speak. They want me to go without but will consider reinstating should I ask. Lol!

Yesterday went to get bloods done. Picc line didn't work. Discussed this with registrar and they will try the unblocker when I go for chemo on Monday. More fun and games huh. 

How did Mandy's chemo go? Good I hope. Temperature has been -5 here. Gives you no incentive to go out but I have been enjoying other activities so not concerned. It's meant to pick up after today anyway.

Did you get to see the twins? Ooh I hope so. How exciting. I hope you have a wonderful weekend at Mandy's. Sounds marvelous. What takeaway will you have? I'm laughing about the cheese as I had cheese and biscuits last night yummy lol Today, chilling and indoor activities day. Tomorrow, possibly out and a Sunday roast. Maybe at the Four Bells huh. We shall see. 

That's awesome about Scilly. Ace news! I didn't receive an email no. Send it again. 

Enough of me, how are you diddling and what news have you X

Hi Marie, sorry it's such a struggle to get some sleep, going through something similar "heart and back pain", with an occasional good night, and it wears you down, I do hope your OT can help, do you think the Zomorph is helping with your sleeping, as well as your pain. Oh sweetheart,  we all know our time is limited, but don't give up on the chemo helping, or the scan bringing a little good news. 

1mg of steroids is very small Marie, and I've never come across it before, but even at such a low level it must have some effect, anyway if you believe it's helping, you tell them. The placebo effect is amazing, it's unbelievable even taking something like a sugar pill, the positive effect it can have on many conditions, it really is true that being positive boosts your immune system, well-being and health.

Your PICC line woes continue, did they get enough blood?, and best wishes for Monday, it's been too icy for unnecessary trips out here too Marie, just the usual therapy and hospital appointments, but as you say next week looks lovely 

I stopped at Mandys Thursday and Friday, as it was too cold to go to see the twins, so we waited till today, we're about 30 minutes away, we will be celebrating Christmas again as Lesley and I couldn't get down at Christmas, I have lots of hankies ready 

Thanks Marie, everyone is looking forward to the Scilly's, it's a little sad it's difficult finding accommodation and the traveling is difficult, but there will be at least 5 plus J+J, it will be fab.

Well Marie, I got up this morning to 7 letters from various hospitals, and I left them unopened for when I get back, and only 2 appointments all week, plus Mandy, fab, it will probably change, LOL. I forgot to ask how did your catch up  with your friend from Scunny go?.and what's on your calendar for next week. Enjoy Sunday dinner,  the four Bells does do lovely food and deserts, I hope everyone is well.

love Eddie xx 

Hello Marie

Hope it's OK to drop in!

It's just your comments about the steroids.....I have to take them all the time, as my adrenal glands don't produce any cortisol any more.

I'm on 25mg per day. If I start to feel unwell, and 'low' on my steroids, I'm supposed to double my dose, but I just take an extra 10mg, which usually sorts it.

1 mg per day does seem a very low dose indeed! But as Eddie says, if it works for you, then it works for you! every body is different, and reacts differently to medication.

I hope you can find a comfortable sleeping position soon!

xxxxx Kate