Pessimistic and no faith!

Thank you Annette. I really appreciate your tips and thoughts. I shall try that. Hope you are keeping well. Enjoy your day and take care X

Hi MarieT

I have problems with eating too....and there are times when I can't eat solid food.

I have been prescribed protein drinks called Fortisip. I use them when I really can't manage to eat. I tried several flavours and prefer the strawberry one. Maybe you have tried them?

Like Annette, I'm better eating snacky things, rather than full meals. I got some excellent advice from a dietitian about managing my diet, and I didn't have to wait long once I asked for help.

Hope you feel better soon!

Kate

Hi Marie,  so happy to hear you managed a meal. The things that help my bowels are, plenty of water, fresh berries and yoghurt for breakfast and supper and healthy meals "all small " in between, I take movicol, 1 sachet early and late, if I get even slightly loose I stop the early one, any sign of being constipated I take 1 docusate tablet with my evening movicol. As for gas I eat a banana every day, a slightly under ripe one is best.

Can totally understand your motivation levels, I m losing interest in almost everything, and my PCA is not going to help.

Got back from Scotland today, glad to share the driving, I love Lesleys family like my own,  just went through a very difficult time the last time we met, but we are through that now and can move on.

I met Angie (Alana), for dinner and a lovely chat, sadly only had a couple of hours. but hope to meet again and for longer, I do owe her a dinner.

Easy restful day,  just a massage which I only booked today, Bev's a star 

Won't be going to Aurora for some time, not avoiding it, have other plans for the next few weeks, I've asked a friend to let me know how many are attending the exercise groups, if their full that's ok, if not, we shall see. I am worried if I don't find any exercise groups soon I will love interest in that as well, which won't be good.

My bad news, 3 new dianosees.

1st degree atroventricular block, AVB, a type of arrhythmia to go with my other 2,  so hopefully won't be an issue.

Ventricular septal block, I have a small hole in my ventricular septum, "the wall that divides the left and right sides of the heart" is possible it may not grow, but  unlikely and the only treatment is surgery, so not for me.

Posterior cortical atrophy, a very rare form of dementia, which affects the area of the brain associated with processing visual information, though nearly always associated with Alzheimers, mine is not, will see my neurologist soon, as it can lead to other conditions and there is no treatment, hopefully will get a time frame, maybe it won't be an issue in my lifetime 

You know me too well Marie, we are going to the Scilly's again soon, we do  have  a cottage free of charge till the end of the month, would be daft not to use it, and it's possible it may be my last holiday,

love Eddie xx 

Good afternoon. Oh Eddie I'm so sorry about your new diagnosis bad news. Absolutely heartbreaking. Makes me so sad to read. As if things aren't bad enough and you get dealt that blow. Makes me so angry. Makes me think what an awful life we live in. I don't know what to say there are no words. All things considered I hope you are as well as can be under the circumstances. Absolutely get yourself back to scilly for some of that lovely sunshine and sea. I hope it isn't your last holiday. Knowing you Eddie I don't think it will be. 

Glad you're back safe from Scotland and happy to hear all is good with Lesley's family now and that old disagreements have been laid to rest. That's fab you meeting up with Alana. Happy to hear it all went well and that you will hopefully meet again. 

Thank you for sharing your diet tips. They're very useful and it means a lot to know that I'm not alone. I managed to eat a little again yesterday. I try to be healthy too but this can sometimes not work well for me. I cooked a beef stew yesterday and I woke up at 4 this morning with very painful wind and bowels. I believe it may be the fiber in the vegetables. It did pass when I managed to go to the toilet. I went out for a walk yesterday but unfortunately came back early because of pain. The tumour pushing on my rib at the back. The pain relief doesn't seem to cut it at the moment. I'll speak to PN Helen as to my options. It it's not one thing it's another huh. And yes like you my motivation is rubbish too. Slept all day today.

How are you and have you had a good day. Take care X

How are y

Hi Kate thanks for your reply. Isn't it awful. Some days just thinking or looking at food makes me sick. Terrible. I have Fortisip. I don't mind the banana but much prefer the strawberry. Overall I think they're great but sometimes for reasons unknown they have given me diarrhea. I'll try this snacky way of doing things and the dietician sounds a great idea. I will ask about this. 

Thanks for the advice, really appreciate it. Hope you're keeping well X

Hi Marie, thank you, but please don't worry about me, I've had a good life and still enjoying it, hopefully for some time yet,  I am good,  having a lovely time with people I love in a beautiful place,  sure Mandy will be my focus for some time, so holidays will have to wait, we will still be visiting my aunties in Fort William and Dorset, which I enjoy more holidays.

Scotland was good, weather was awful but it was nice to see Lesleys family again and sort out our issues, and lovely to meet Angie (Alana), so nice to put a face and a voice to a forum friend, Angie was lovely.

Sorry to hear your bowels are such a problem, good to hear your eating something, fiber is important for  healthy digestive system  and  good Bowel movements, but too much can cause problems like wind and a painful abdomen, maybe you should cut down on green's, they can cause bloating and gas, especially broccoli, Oh Marie, the pain from your tumour must be awful, is the pain relief never effective, are you allowed to regulate the dose, glad your going to speak to Helen.

Your not wrong,  there's always something, my run of good luck is well and truly over, just happy Mandy keeps  getting good news.

I'm ok, resting again, wet and windy till 2pm, had a walk to the botanical garden then back to cottage, I've been catching up on my Emails, for some reason I have about 40 texts, I usually only get a couple a day.  Might ignore them, just my WhatsApp friends to answer them bed. My motivation is worrying me, and I'm sleeping longer and longer.

I hope Helen can help you tomorrow or refer you to someone who can, take care my friend.

love Eddie xx 

Morning Marie, sorry I did post you last night but it seems to have disappeared, hopefully more luck with this one 

Please don't get upset and sad for me,  I've had a good life and still enjoying what time I have left, my latest diagnoses are not causing me any issues, and may not for some time yet. 

So sorry your bowels are such a problem, the right amount of fiber in your diet is usually so helpful, but as you say certain vegetables can cause bloating, wind and constipation, it's good to hear your eating something, it's so important to your digestive system you do, absolutely if you think certain foods are causing problems, don't eat them, PS I often substitute a meal for a treat, plenty of water and exercise is just as important, so the pain you experienced yesterday needs to be seen to,  im glad you have Helen to help you, your tumour pressing against your rib must feel awful and the pain relief not working must get you down, so not surprised you slept so much, I'm sleeping more than I've ever done,

We got to the Scilly's on Saturday, we missed the train "don't ask ", so had to go by car, didn't know you could get to Exeter airport in under 4 hours.

Scotland was emotional, as expected,  but good, glad we managed to put some things behind us and move on, Angie (Alana) was lovely, it's so nice meeting someone from the forum,  I will be visiting my auntie in Fort William next month and hope to meet up with others from the forum in Glasgow.

 No plans for today other than to get out of bed soon, lovely sunny day here, I'll see where the girls take me, good luck with Helen and treat yourself to something yummy, that's an order.  take care my friend, and please don't worry about me.

love Eddie xx 

Hi Marie, just noticed my 1st post turned up, here's what I wake up to 

Good morning. Ahhhh wow that's absolutely stunning. The sea looks crystal clear blue. Beautiful!!! Oh to wake up to that. Awesome. I'm so glad to hear you are back in scilly. However did you miss the train lol It will do you the world of good and I hope you're having a wonderful time. Thank you for sharing the pictures, I love them. 

Thanks for your well wishes. I'm doing better than I was at the moment. Fingers crossed long may it last. Not that it ever does lol You're right about foods and trial and error. I can eat something one day and it upsets me but can be fine with it another day. Some foods I loved I can't now touch. Even food smells can make me nauseous. PN Helen has not got back to me re the pain yet. That's unusual so I'm guessing she's either day off or holiday. I'll ring the office to find out later. You're right in that the pain is dragging me down. I'm very limited to what position I can be in without it hurting. The DN came yesterday to redress the burns. They have put these new dressings on, Honeymed. And yes they're very sticky. I couldn't help but think is that going to stick to the wound and pull it when taking off. Hmmmm we shall see 

Good to hear you will be returning to Scotland. That will be fabulous meeting up with more people from the forum in Glasgow. I can't believe you're with ease from one end of the country to the other and back again lol Good for you, it's amazing. 

Good to hear you had a lazy day yesterday. Hope you enjoyed. I'm not up to much today. What plans have you? Take care and enjoy X

Hi Marie,  so happy to hear your feeling a little better, I hope it continues for some time too, I know it's difficult working out the best foods to eat, foods you don't have to cook work well for some people and being less aromatic can decrease nausea, unfortunately we are all individuals, so it's mostly up to you, but little and often with plenty of water work to some degree for most of us 

I hope you managed to get in touch with Helen, and she's managed to help with your pain, you're right about pain, it can be so demoralising and take over. I can imagine how awful it is to not be able to sit and relax 

Was your DN happy with your burns, and have you been seen by the TV nurse yet, did she recommend the medihoney dressings, don't worry about them, they are very effective and the dressing is usually moistened before being carefully removed.

Hopefully, if Mandys Operation goes well will go to see my auntie on the 18th Nov, hopefully no hiccups so will get on the train,  havn't driven for 5 days, and couldn't manage driving to Glasgow, let alone Fort William, had a few lazy days recently and I am getting to like them, unfortunately my heart doesn't, hence the missed train 

The sea's around the Scilly's are clear , shallow  and not cold, you can walk to some of the islands at low tide, not tried it yet, we've been sat on the beach at 10pm as the temperature barely drops at night, only walked Poppy, short walks, the girls have gone to Cornwall for the day, hoping they bring some supper, they "forgot' on Saturday, quiet day for us both it seems, l hope there sorting/sorted  your pain out, and you feel better soon.

love Eddie xx