Message for Juliana

[Nardobd]

Hi hon - I didn't want to hijack Clair's thread but was concerned to hear that you're not having a wonderful time right now. I know that you don't feel like posting a lot but just wanted to let you know I'm sending caring thoughts your way.

If you do need to talk/vent we're all here rooting for you, so don't hesitate!

Love

Nicki xx

[Ellie]

I also want to say that I am always thinking about you Juliana. So sorry to hear that you are having such a tough time right now.

Even though you don't post often, I hope knowing that we are all thinking about you helps just a tiny bit.

Sending you lots of love and strength.

Ellie

xxxx

[taylogrd]

Juliana,

Read your post and want to thank Nicki for the chance to join in here with the hope that our combined thoughts and wishes help you through this tough stage.

None of it is easy but I hope it helps to know others are thinking of you.

Miss your messages .

Gordon.

[Juliana]

Hi guys and gals,

Thank you so much for the positive thoughts, it means a lot to me.

Gordon - I'm so sorry I haven't replied to your emails on FB - you must think me so rude. I think about you often and wonder how your new regime is working out for you.

And for all you ladies, I follow all your updates - your very trying times and the little happy moments experienced, I'm just sorry I can't add anything to them at the moment.

I will update you on my situation -

As you know I'm on Capecitabine, this is because I can't go through with the CDU and the infusions any longer - it causes me far too much stress and induces panic attacks which my body just can't sustain and go through with. The capecitabine causes more side-effects, but I can take tablets in the comfort of my own home. However, the diarrhea is a major issue - I had just got to the point where I was putting weight on, which - when you have Cachexia - is a great achievement. I went from 6st 12lbs (2stone under normal weight) to 7st 2lbs and was starting to feel stronger. But 6 weeks of terrible intestinal problems has totally drained and in agony. And yes, they have given me stuff to help - I literally live on Imodium, I take iron tablets and codeine all to help constipate me - and even with all that it still happens, but not as much - but the pain in the intestines is there always and nothing takes that away.

I did go to see about the trial in Leeds, but the professor didn't want to give me false hope - and the fact I would be away from the kids for atleast 2months where he felt that time would be lost, never to be regained through the treatment itself, made me think twice.

As for complimentary/alternative I'm even finding this hard to do, I just feel like there is nothing out there to stop/slow this relentless disease. I did start on Omega 3&6 the highest form I could find and I do feel this helped me regain my weight prior to the chemo. But all my other things like, vegan, juicing, b17, turmeric and essiac tea have all fallen out of my routine probably never to be seen again.

My bloods have been at their worst, my LFT's are very abnormal and my urine is the darkest I have ever seen it. The chemo-nurse suggested that there is disease in the liver, but we won't know this until I get scanned (hopefully in the next 4 weeks). There has been a minor drop in my CA19-9 but as my readings have been more or less non-existent in this area I find it hard to gain any positive vibes from this. My red blood cells have been so low they wanted me in for emergency blood transfusion, which I declined, as twice I have needed blood and each time I get an allergic reaction regardless if they match up the anti-bodies or not. The side effect covers me from head to foot in big red welts that join up, itch and are sore for several days.....my body just cant do it.

I'm doing a lot of reading lately, I find it helps me escape reality and I love reading. I read last thing at night as it helps keep my mind from swirling over everything that is happening.

Also I am experiencing a phenominal amount of stress, courtesy of my in-laws. It's a very long story, but in essence I have put up with a lot of stress, constant undermining, being used and then dumped as and when and just generally rude and overbearing attitude. After my diagnosis I was hoping my MiL in particular would change and go easy on me, but instead it's like she's stepped up a gear. This year has been one of the worst, her uncontrollable tongue caused serious problems for my parents, myself and my estranged alcoholic brother - causing a great deal of stress and hurt. I've also been subject to being told that I have a problem, and that my problem is that I am not ready to go to Heaven, as if I should be cheering and hoping it will happen sooner.....They are Christians, and so is my husband, I converted 10yrs ago and the kids are being brought up going to Sunday school etc. However my in-laws are a law untoo themselves, to the point of being hypocritical and a cringe worthy embarrassment.

After our last holiday (last May) I promised my husband I would never ever go on holiday with them again. And with my health as it is - I can see this ring true.

The stress is taking a toll on my body and Sunday night I experienced what we think now could have been a severe attack of Angina.

I really don't know how much more I can take. It is also putting a tremendous strain on our marriage.

It's like they do not possessive the presence of mind to see what their actions are doing.

All of this coupled with the depression that comes with cachexia I feel I am about to implode in on myself.

It was my 39th Birthday last week and I felt no excitement, no target met - goal achieved etc unlike last year.

My hubby bought me a racing car - a TVR Chimaera in my favourite colour - purple - I have to say that has been a hi-light......I was speechless and burst into tears (probably over the money he spent getting it!). I have managed to take my best friend out in it when she visited - and that was nice.....so there are some good times tucked in there somewhere - they are just very very few, and ever so far between atm.

Anyway....enough of the whinge we all know we have so much on our plates that life becomes complicated and hard to do. I know each of us have a story to tell and I admire the ones who take it head on, regardless......I'm sure I was one of those people - but it feels so long ago I've forgotten how it feels or how to do it.....(bit like sex...lol )

Big hug to you all,

Juliana x

[lynbo]

My heart goes out to you, what a bl00dy trauma having to cope with all you have, and then the in laws! I know the feeling.

Just wanted to send a big hug, and I am saying a prayer for you tonight

xxxxxxxxxxxxxxxxxx

[Nardobd]

Hi Juliana and thanks for updating us as to what's going on. I'm sure I speak for everyone when I say that you're in our thoughts and prayers. I hope against hope that your intestines stop rebelling and that you regain some of that weight soon.

As for your MIL...Let me at her! I would love to point out how "(un)christian" her behaviour is! Actually that would probably make things worse for you but I do have a suggestion: if there are recurring themes like "you're not ready to go to heaven" then you need to have responses ready such as "No, because I'm performing the duty that God gave me - being here as long as possible to look after and guide my children". Whenever they criticise (whatever) you could drop in "Let he who is without sin cast the first stone". Having been raised a catholic (although I no longer consider myself one) I can provide an answer along these lines for many issues so if you want some tips just let me know (you can email discussionboard@pancreaticcancer.org.uk if you'd like to email me personally - they will give you my addy). You'll probably find that one or two retorts will be sufficient to shut them up!

What a wonderful present for your birthday. Wow! I'm sure that you and your friend looked very glam in the Chimera and I'm pleased that you had a good time.

Don't ever let me hear you say that you're whinging again! You have faced more than most with courage, dignity and intelligence and continue to do so. Post whenever you feel you need to and if you need to vent I'm only too happy to listen, publicly or privately.

Love

Nicki xx

[Ellie]

Dear Juliana

So very, very sorry to hear what you are going through. I felt things must have been tough for you, with you not posting, but it seems you are living through a nightmare, particularly with your in-laws.

So glad that your new car has brought you a little pleasure. Hope you will get more chances to enjoy it. In the meantime, I hope you can get a little peace and pleasure from your books, too.

My heart truly goes out to you and I just wish there was something I could say to help. Just remember that we are all thinking of you and wishing you peace and comfort.

Lots of love

Ellie

xxx

[clair2305]

Juliana

tell you mother in law to F OFF.....it may not be very Christian but from your posts, I don't think she's being very Christian anyway.

As Blue would have said, people are either a help or a hindrance......and the latter you can do without!

BL()()DY PEOPLE!

CLair

[clair2305]

Sorry if my last post offended.....obviously I'm not in the mood at the moment

But I stand by what Blue said "people are either a help or a hindrance"

Thinking of you Juliana.

Take care

Clair

[Juliana]

Lol....trust me, you did not offend and similar thoughts have crossed my mind over the years

And you are right, hinderance is definately the word - and like many people I have spoken to - Christian or not, the reaction has more or less been the same.

Currently we have no relationship, the kids still get to visit - but I haven't seen/spoken to my in-laws in few weeks and have found my stress levels improving.

Things will need to change though, but currently due to a family bereavement now is not the time.

Thanks for the support babe x

Juliana

[Nardobd]

Nice to hear from you again Juliana. I'm so sorry to hear about the family bereavement - it really never rains but it pours for you!

Just to say that all of our thoughts are with you.

Love

Nicki xx

[Juliana]

Hi guys and gals,

Just an update:

For several months I've had terrible wheezing and crackling in my chest, even painful to breathe sometimes and have been told it's my tumors.

My quality of life has been rubbish, absolutely exhausted - sleeping my life away, not interested in anything, no good days after patch swaps - just day in day out bloody miserable. Which I blamed on the chemo and constant diarrhea.

For 2 weeks I've had a really bad leg, hardened vein which was very tender - no bruising on the skin but vein was hard and seemed to be travelling up my calf to my knee (inside of right leg) - I went to GP concerned it was a clot - but he told me it was phlebitis (even though I'd had phlebitis and it was nothing like it - and told him, he patronisingly said 'yes..well....it's phlebitis....here's some cream'.

So applied the cream - no improvement - pain kept creeping up my leg to the point I could no longer straighten my leg and walk on it properly. Decided to contact my palliative care team, who got another GP to ring me. Who in turn asked me to go to the hospital for examination and depending on what the consultants thought there - a possible ultrasound scan to check for DVT.

My Mum took me down at 5.30pm. I had bloods taken and my calves measured - blood pressure taken etc by a nurse at 9pm (who then promptly lost my notes). I was seen by a Dr. at 11.30pm. The Dr. examined me, and listened to my chest - she then decided I wasn't going home and needed to be admitted....

That day I'd had cereal for breakfast (cold) and my chemo, a sandwich for lunch as it was all I could manage, I missed tea to get to the hospital and was offered a sandwich at 9.30pm, and still needed to take my chemo at the end of the night. I had - out of habit - packed an over night bag and left it in the car, just incase. But as I was told the ultra sound scan would be an outpatient appt. and that I was only going to be examined and offered this I couldnt understand why they would want to keep me in.

So basically I said:

If you want me to stay, you will have to rovide me with a hot meal so I can take my chemo and offer me a scan tomorrow morning, allowing me to leave by lunch so I can make it to the family funeral. So they did.

I was having a chest x-ray at 1am in the morning, eating hot Heinz chicken soup with toast by 1.30am - and finally in bed by about 2.15am.

Went down for my ultrasound at 10am - and guess what......yep....a clot.

And guess what too.....my x-ray shows I have pneumonia.

Over 3 months ago I asked my team/nurse and consultant if it could be pneumonia and was told it was probably just a mild chest infection or the cancer causing the symptoms. If I'd been allowed to self diagnose, something all GP's moan about and make fun of - I would have done a better job on both occassions! Pay me their money!!!!

Anyway.....blood clot & pneumonia - I still managed to get to the funeral

I'm taking some strong antibiotics for the pneumonia, I've been given a pump to help me breathe and I have some clexane injections to have daily.

So....how is everyone else doing?

Juliana

[lynbo]

Juliana

what an absolute nightmare? I am sick of hearing these kind of stories, how can they get it so wrong? I think they forget that people know their own bodies?

I hope you are ok with the pump and stuff xxxxxx

keep us updated

[pauline]

Hi Juliana

glad to hear from you

I hope all the meds help iron out a few things for you

take care and have loads of rest you need it

BIG HUGS AND KISSES TO YOU ALL

Pauline XxXxXxXx

[Nardobd]

Hi Juliana and thanks for the update. Let's hope that now you've been proven right and they are treating the right things you start to feel better. You really deserve better than all this!

Love

Nicki x

[Juliana]

Sheeesh......these antibiotics are cleaning me out - seriously, it's like I've taken 10 packets of picolax - sheer water coming out in large quantities.....is this normal???

The injections ain't much fun either - don't mind sticking myself with the jab - but the clexane liquid burns.....can't they make anything pleasant for us cancer sufferers or what?

Whinge over

Juliana x

[taylogrd]

Hi Juliana,

I just read your post you're so noliedgeiable on medical stuff you could do my diagnosis any day and I'm sure make a much better job. I'm gonna have to get out my medical before attempting a proper reply but for know I'm wondering if it was the MIL's funeral you went to ? Surely things can't all be bad? Living in hope.

Thinking of you,

Strength and Resilience,

Gordon.

[millyjo]

Hi Juliana,

You are an inspirational woman, and I send you all my love and thoughts.

Thinking of you.

Millyjoxx

[Nardobd]

Hi Juliana

Hopefully the 'clearout' has now abated a bit!

If the liquid burns, surely that's not right? Check with the doc.

Nothing about cancer is pleasant but I'm sorry you're having such a particularly hard time of it.

My thoughts and prayers are with you.

Don't forget to vent regularly! We like to know how you're doing.

Love

Nicki xx

[Juliana]

Hi all...

Well, the clean out didn't stop - it even affected my appetite (yes I know....surely not, not me.....but yes...) and I struggled taking on fluid. So....basically said to my team.....no thanks. But....did let them offer me an atlernative, so hopefully this course will do the trick without trying to turn my inside out. I have to say - after the 4 months of diarrhea with the chemo, this last week with the antibiotics has tipped me over the edge. I feel so weak and exhausted I am actually down for admission to the local hospice for respite and symptom control.....and I am looking forward to it! Even though my Mum helps me so much and is more than happy to look after me, and I love my children soooooooo much (and my lovely hubby too) - the noise, distractions and stress just isn't helping atm. So maybe a few days away is just what I need.

Gordon sweetheart.....as long as it ain't your feet I need to check out I will do my best.....I just don't do feet

How is the new regime btw - please let us know if the stuff from Dr Hembry has had any beneficial effect - we would really appreciate some feedback or advice ourselves!

Plus incase of any further confusion.....it was my Father in Law's Mother who passed away.....not my MiL - although she did offer/threaten to move away from the area as to not interfere with our marriage, to which I advised it was not my decision, but would support and condone their move if they did decide to leave the area.

As for the liquid burning, that is how it is unfortunately - anyone who has had a spell in hospital and has had to wear the special socks and get daily injections may remember the experience. I am now injecting myself - and find it not as painful if I use the top of my thighs instead of my tummy.

Thx for the messages everyone x

My thoughts are with Clair - just don't know what to say.....

Juliana x

Any update on Ted Nicki?