Search found 53 matches

by Michaela1
Wed Nov 07, 2018 6:34 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1563

Re: Feeling morbid!

That would be great Erika, my e mail is (post edited).....thought that might be easier just having my email address? I read on here yesterday about somebody going to Germany to have the whipple and whom is doing good, did You read it?
Michaela x
by Michaela1
Mon Nov 05, 2018 7:41 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1563

Re: Feeling morbid!ng

Unfortunately Royal Marsden is a little to far for me as I live near Hull, childcare would be an issue too! :cry: Would of been great to meet you. I am feeling a little better, I too find my self snappy at the family, but not only that, I seem to have little patience for anybody at the moment! But I...
by Michaela1
Sun Nov 04, 2018 8:36 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1563

Re: Feeling morbid!

All taken on board and digested. I do have a Macmillan nurse and I think she has picked up on my low mood and is maybe going to recommend I see their counsellor/psychologist. She has also put me down for yoga. My ca19 levels went back up the 1000 they had lost from my last chemo so that was a punch ...
by Michaela1
Fri Nov 02, 2018 7:32 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1563

Feeling morbid!

Hi people, I don't know if everybody goes through this? But I'm feeling kind of morbid, for example wondering how I can work out how much time I have left (which in reality I know we cant). I keep thinking will the end be quick, will all of a sudden I will go downhill really fast, or is not a slow p...
by Michaela1
Sat Oct 20, 2018 5:03 pm
Forum: Patient Experience Forum
Topic: Just my story....Michaela1.x
Replies: 19
Views: 5997

Re: Just my story....Michaela1.x

I am going to find the milk thistle and give it a go! This round 5 I have just suffered tiredness and really funny fingers! When I had mine delayed for two weeks I suffered more on round 4 so you could be right there! I don't think I want to have a break, I'm not sure. Are you up now? Sickness and n...
by Michaela1
Sat Oct 20, 2018 5:07 am
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 28
Views: 5384

Re: Just diagnosed

I third what Toodotty and Kate say, it gets better the more rounds you have, I've just had round 5 and am feeling ok with my usual symptoms. I think a lot of us keep a diary and that helps us track good and bad days so you can plan what you need to do and when, simple stuff like the shopping etc. An...
by Michaela1
Sat Oct 20, 2018 5:02 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 37
Views: 6831

Re: Folfirinox Round 7

Wow, the no typical abated scar tissue sounds good! I hope mine come up similar when I have my scan on the 31st! I would love to try extra treatments, but I think the nanoknife you try is private yes? I would not be able to afford private treatment, and don't think there are any clinical trails out ...
by Michaela1
Sat Oct 20, 2018 4:53 am
Forum: Family, friends and carers
Topic: My Mom’s journey - advice appreciated
Replies: 7
Views: 2444

Re: My Mom’s journey - advice appreciated

Hi again, Toodotty is definitely right in getting the creon, it helps with the digestion of food, you can't reallynoverdose on it either. Say if I eat two weetabix I would take 3000 creon. Then I do not gate any pain or sickness after. I personally do not get on with any of the nutrition foods, bu I...
by Michaela1
Fri Oct 19, 2018 7:06 am
Forum: Family, friends and carers
Topic: My Mom’s journey - advice appreciated
Replies: 7
Views: 2444

Re: My Mom’s journey - advice appreciatedm too far gin

Are you on about her having the whipple operation? This is a huge operation, that's pretty much all I know, I think if she is only opting for palliative care at the moment she would be willing to go down that route. What has her oncologist/surgeon suggested? I am afraid i am all quite new to this to...
by Michaela1
Thu Oct 18, 2018 7:32 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 37
Views: 6831

Re: Folfirinox Round 7

Wow great that means no tumours!I hope they let you try the nanoknife, I know if mine went away I'd be pushing for the same thing, but I'd have trouble raising the money going private!😔 I will look out for the milk thistle, but if tastes horrid I won't be able to drink it! Wish I could do a bit on e...
by Michaela1
Thu Oct 18, 2018 7:22 pm
Forum: Patient Experience Forum
Topic: Just my story....Michaela1.x
Replies: 19
Views: 5997

Re: Just my story....Michaela1.x

I hear you wishing our lives were normal again! Do you have a break halfway through your treatment? How did round 7 go for you?x
by Michaela1
Wed Oct 17, 2018 10:31 pm
Forum: Patient Experience Forum
Topic: Just my story....Michaela1.x
Replies: 19
Views: 5997

Re: Just my story....Michaela1.x 1st

Well it was round 5 today and so far feeling o.k, even had a bit of home made lasagne my daughter made at school! Just to let you know they messes up my blood results that said my ca19 marker had gone down to 27......it was in fact 5030! Apparently the mistake was in the lab as I saw the print out o...
by Michaela1
Wed Oct 17, 2018 10:23 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 37
Views: 6831

Re: Folfirinox Round 7

I hope so. I have a scan booked for 31st of Oct, then round 6 on 2nd Nov. They said the results will take a couple of weeks, but they are going to try and get them before that. I think they feel guilty about giving me a wrong blood report saying my ca19 was down to 27, when in fact it was 5030! This...
by Michaela1
Mon Oct 15, 2018 3:16 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 37
Views: 6831

Re: Folfirinox Round 7

I wouldn't be able to do the gardening as dexterity and tingling won't allow it.....have trouble pegging out the washing!😂😂 I have cycle 5 on Wednesday...i always dread it now, seems like a vicious endless circle! As for hair, mine is so thin now it only just looks 'normal' .if you are taller than m...
by Michaela1
Sat Oct 13, 2018 8:44 am
Forum: General chat
Topic: Time
Replies: 30
Views: 10113

Re: Time

Hi Fairy, No it is ok, you have not scared me, only this God awful disease does that! I wouldn't say I am scared, although moments of dread do go through your mind when you read others experiences. However equally so the words of stories also bring you comfort and hope. You were a star for your mum,...

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