M.I.A

[Juliana]

Hi everyone,

Sorry I have been missing in action, especially over the awareness week. This is due to me being in Ty Olwen, its my local hospice.

For months they had tried to get me in, but i refused....mostly out of fear! But know i am here, i have found it to be a positive place to be. The staff are fantastic, the place is much cleaner than normal ward and best of all they have a Happy Hour! Baileys, baileys, baileys!

I needed something stronger Thurday, I had my latest results:

Chemo hasn't worked

My lung tumors have grown and changed shape

My lung tissue is damaged, due to prolonged untreated infections

I have an ascites in abdominal cavity

My portal vein(s) is blocked, stopping blood and nutrients feeding it, and causing liver damage

My spleen is enlarged

Not what i was hoping for....

Anyway on mobile atm, so will post in length when i am home x x x

Juliana

[ladywood]

Dear Julianna, I am new to this forum as my poor sister has just been diagnosed with advanced pc. I have been reading some of your posts and just wanted to say you are in my thoughts and I really hope you feel better soon and get home to your lovely family. you are an inspiration to all of us on this forum. Good luck. Marie x

[lynbo]

Hi julianna

Oh what a nightmare, I am here if you want to talk xxxxxxxxxxx

[millyjo]

Dear Juliiana,

What an inspirational woman you are.

Your family must be proud of you and the courage which you show daily.

Sorry to hear your latest results were not what you expected.

if I had a magic wand.

Thinking of you.

Love

Millyjo x

[Nardobd]

Hey Juliana

I'm with you on the Baileys! Ask if they have the new Hazelnut one - it's lovely.

Seriously, I'm so sorry to hear your news. If I could do more than send positive thoughts and prayers your way, I would.

You know where we are if you need us.

Love

Nicki x

[Juliana]

Hi everyone,

For months I've been suffering from night/evening sweats which I've read somewhere are quite common with this type of cancer. Anyone found something that works for them/their partner in stopping this? Ive tried paracetamol (recommended by my palliative care team) but it didn't make a difference.

I'm also aware that it could be an early menopause symptom due to the chemo.....but it doesnt come on in waves (like my Mum's/Grans etc) and I dont often get them in the day, unless I am asleep or trying to sleep as the sweats are so intense they wake me.

Any ideas would be grateful x

Thanks,

Jules x

[lynbo]

Hi Julianna

Well, my Andy had the night sweats, he was hot during the day, but on a night it was like someone had poured a bucket of water on his side of the bed.

Paracetamol didnt work either.

I bought a 4.5 tog duvet, and used a fan in the bedroom, then my best friend bought these matress protectors, which were like towelling material, they soaked up the wet and made him have a better sleep, apart from that, I dont think there is any medication that eases it, just a case of lightweight covers etc.

Bless you, hope this helps.

xxxxxxxxxxxxxxxxxxxx

[Juliana]

Hi Lynbo,

Thank you for the advice, I will try maybe one of the kids towelling mattress protectors to see if that helps, although I found the plastic coating on the mattresses in Hospice reflected the heat back to me....

Anyway, latest update, saw my oncologist today and it looks like they've run out of options to try as nothing has seemed to have worked (especially the last chemo where the cancer has grown, not halted or shrunk....infact in all the treatments I've had not one produced shrinkage). So.....kind of cut loose atm.

My oncologist had my mri results, and as per usual there were no measurements present (there never is!) so I can't determine how quickly things are moving along, so AGAIN I've had to ask for a more informative review to compare with previous MRI's.

Have my little one's birthday tomorrow - he is 3yrs.....didn't think I would live to see the day, or his first day at school - so have to say - what a bonus in all this misery.

Hope you guys are experiencing your odd moments of bonuses and blessings.....*hug*

Juliana x

[dkm jack]

Hi, Juliana, You gave me some good advice when my mum was diagnosed. Though sadly she died on 7th November. But she left letters for myself, my sister, and brothers which have given all of us some comfort, and will I am sure continue to do so in the years ahead. I know you said you struggle to write to your own children, and I know it is very different, as they are still very young.My mum was helped by a councilor at our local hospice, and I am certain there would be similar where you are.

You are in my thoughts, and I often look on this site to see how you are doing.

much love

Jackie x

[pamela]

Hi Juliana,

Enjoy your little ones birthday. My nephew was 5 on Sunday and i spent some time with him.They are lovely to watch as their eyes light up when they open all the presents.I am lucky this year as i am spending xmas day with the little lads,james is 8.I just wish dad could have been with us .

I am sorry to hear the treatments are not working,my heart goes out to you.Enjoy the moments with your family and i wish the researchers would find hurry up and find a cure for all those with this terrible disease.

gentle hugs

Pamx

[PCUK Nurse Jeni]

Hi Julianna,

There is a drug you can try called venlafaxine. it is an anti-depressant, but is used in small doses in counteracting night sweats.

You would need to get it prescribed by your GP, or if you are still at the hospice, get a consultant there to do it.

Sorry to hear your news has not been so good lately.

Hope the little one's birthday went well.

KR,

Jeni.

[Nardobd]

Hi Juliana

I can't add anything to what's already been said - just wanted to say I am thinking of you.

Love

Nicki x

[Juliana]

Hi everyone,

Thanks for your responses x

And thanks Jeni for the drug prompt - I will check with palliative care team and see what they say.

Cheers -

Juliana

[PCUK Nurse Jeni]

Actually Julianna -I may have jumped the gun a bit with the drug! I was so busy finding it in my drug book!

Have you actually tried over the counter remedies? Evening Primrose oil and red clover are also good for night sweats.

Might be as well to try these before prescription meds? But, it is up to you.

Hope you get some joy from any of them!

Jeni.

[lynbo]

Hi, i would try alternative meds, i was on venlafaxine a few years ago and the side effects are bad, i had bad dreams, jaw clenching and sweats?

I know everyones diff but, generally i think they are quite harsh

Xx

[PCUK Nurse Jeni]

You are absolutely right Lynn.

These side effects you experienced are all documented side effects of Venlafaxine.

The jaw clenching is actually a rare side effect!

However, the dose used for night sweats is much smaller than for the usual use of the drug, so the side effects should be less at a lower dose.

Jeni.