I’m now at the stage whre I don’t knnow what is causing side effects and what if anything might be the impact of cancser in my shoulder and neck.
I am constantly sleep,really asleep from:
30mg zomorph night and morning
3200mg geberpantone in 3 daily doses (reduced from 4800mg)
50mg at night of amitriptyline
Oramorph as and when
effentora experimenting with doses of 100mg-400mg when pain occurs
Without drugs and often with them I get awful nerve pain from tumours in neck and chest wall(pain in back and arm).
On high dose of gaberpentone I had hallucinations: weird thoughts, weird speech, zombie like.
Trying to balance pain with finding a painkiller which will work and drugs which don’t send me to aleep.
I have no idea wheter the chemotherapy I am on (caelyx) is causing any of these side effects or not.
Jane thinking of you and wish they could sort out your pain. All those meds it is a wonder you can function at all. Is it your 2nd lot of caelyx this week or have I missed it with all the sleeping I have been doing?
Love Debsxxx
You don’t know me and I should not be on this thread. Except that I feel I know you both from the forums. Just sending you love and thanks for everything (well nearly!) that you have said on here. Since I came here in 2007 you have both been part of my life. And will continue so.
Hi guys, glad to see you posting. Jane, I personally couldn’t get along with oromorph, but I do take oxycontin 80mg per day - slow release plus my paracetamol and goodness knows what else. My point is why not try oxycontin - it pretty much knocks my pain on the head.
Debs I hear tomorrow is going to be a good day, so try and reach for that lilo!
DilysP - I can think of no earthly reason why you should not be posting on this thread-you are welcome
Just wanted to say that you have really helped me with your honest posts on this c***** disease. Wish there was something I could do for you and so hoping that your pain can be controlled.
HI Debbs,
My heart goes out to you.I have only just joined discussions and you have helped many of us you are a truly brave lady.We all try to put on a brave face and try to joke but people don’t understand why we still want to try and carry on enjoying what we have.
Thank you Darling for being so honest about life.I am off for Zometa then more Taxol but I know whatever the results I still have a long battle ahead,we all know.
Maureenx
Hi to all you wonderful ladies especially Debs and Jane,
My second time around diagnosis came on Friday 13th March 2009 (IBC). i joined this site at the same time and have followed all your threads and wondered how you could be so brave and still find time to live and laugh.
I have found that spirit and also God. I will be fighting as long as I can and I will be saying prayers for all of you.
Debs and Jane please DON’T GIVE UP AS YOU HAVE GIVEN US ALL SO MUCH HOPE. I know it’s hard but fill thoses glasses with whatever you can find and accept all the treatment that you can. I really hope that it can give some releif or extension on your lives.
Tess, buy that dress or even 2 and hold your head up high. You deserve it and we all need to feel as good as we can at this time.
I send my heart felt love to all of you and I will be praying.
Tina xxxxxxx
Hi all on this thread - especially the little Cornish pixie -aka Debsincornwall -I had stopped logging on to site and posting -then saw your name and posting Debs - just want to send love and thanks for honest postings - I just want to say how much I admire you …all of you on here…the air would be bluer than the bluest thing there ever was should I be in your shoes- its good to rant and say exactly how you feel- love and hugs from one of the “lucky” ones - Chebsy…in Cornwall
Hi everyone,
to all those who have ventured back on the boards thank you so much for your contributions.
Chebsy… stay luckyxxxxx
Well I staggered in clinic yesterday had to ask for an old ugly Dr as I have a very strange personal problem. All the Dr’s are young surf dudes or pretty petite young women.
Shhhh this is a BIG secret and I can only tell you if you promise not to joke or mock me, should we ever meet.
I think I have testicular cancer! I know hard to believe but true. I have a funny thing that resembles a blueberry in where would be my lady garden. It appeared about six weeks ago and as it was itching I must have scratched the top in my sleep and I bled for England. All over Ian’s expensive white cotton egyptian sheets. He was none too pleased. Over the past 2 weeks it has come back and is getting really big. So now you know why I need older uglier Dr to investigate.
Nurse takes us into consulting room and promise to send in suitable Dr
I get young pretty girl but she is leaving tonight to go to Oxford so I will never see her again. Felt like a one night stand. Ian sat in chair trying not to die of embarresment. Bless her she was really good said she had never seen anything like it before and she would like ‘Brian’ to have a look. Well we gave a definate no she could see I was more than a tad uncomfortable so off she went to have a chat about my ‘blueberry on my cherry’ so to speak.
When she came back in the room I had put the blanket over my head and told Ian to hide under his coat so ‘Brian’ cold not identify us.
He must have felt the same as he did not show Lady Dr said she had described it to him and he is refering me to gynie man. I asked was he old and ugly. she said no he is mature (his name is foreign and exotic sounds like a dancer or if very lucky a latin lover) Bloody great she said he was very handsome. It is times like this I wish I was under the old dr at Christie hospital in Manchester.
I had also told Dr I had not taken streoids the word back from ‘Brian’
was to start them and if my bloods are o.k. I will start vinorelbine tablets on Friday after muga and pamidronate.
Well I haope you are all still awake and that I have been able to give you a bit of a laugh. Albeit at my expense. Such is life.
Thank you all so much for helping me through my cloudy summer.
Thank you for giving us all a chuckle at your expense.
Why is it that the doctors who work “down under” are so damned good looking??? I had a colposcopy done by a guy who made me weak at the knees and then made me watch the procedure on a colour monitor - eek.
I get “problems” from cycling, hence the udder cream on my profile. I hope your cherry shrinks and disappears without trace …
D
P.S. Cherries are in season right now … but possibly not a “must have accessory”!
Oh God Debs - and I thought I had embarrassment today! Wishing you all the best with your blueberry and hoping that all your Doc’s are old and ugly. Mine are none too pretty so that is a blessing, I suppose. Result with the steroids (I think).
A note for Celeste and (anyone else who might know)
Celeste suggeasts oxycontin. I take zomorph and oramorph? Does anyone know the difference between zomorph and oxycontin? All experiences really gratefully received…
Many thanks for anticipated nice morphine suggestions.
Dear debs, you made me laugh but I could hide under a blanket for you with embarrassment, Hope that your “blueberry” on your “cherry” is nothing more than a dried up old “raisin” (no offence intended)
Good luck with your chemo this week, hope it goes ahead and thanks for the laugh.
None taken. I suppose I do feel better today knowing they are going to do a biopsy on it. Just why oh why did it have to be there? I was going to keep quiet but I promised to tell my story warts and all.l.o.l.
Sorry Jane I have no knowledge of the pain control drugs as of yet. Hope you are able to stay awake I started my steroids today and feel a bit more awake.
Oh Debs, you still manage to find humour behind(no pun intended!)what must understandably be worrying and embarrassing! I do hope the blueberry does turn out not to be anything sinister. You need a bit of good news at the mo! The sun’s shining here and very warm after an extremely rainy day yesterday!
Am knackered after 5 days at my mum’s (good to see people but my mum is very draining and won’t really accept that I may not have that long left - she rolls her eyes every time I talk about the next adventure I’ve planned - she thinks she’s the only one worrying about her own death!!)but enjoyed seeing my brother who stayed last night as I’ve not seen him for 5 years. Feeling very proud as we went to see my 21 yr old nephew in the lead role of Sweeney Todd last night in Bristol and it was fab.
Hope Ian’s precious sheets have recovered! Thinking of you xxx
Thanks Anne,
yes the sheets and the mattress protector recovered after 2 washes with special vanish for whites. The mattress protector was pruchased after he read about body fluids leaving body in death process. I have not found his little bag of tricks ‘in case of’ but I am sure he has one! Bless him.
I am so pleased you are out and about I know what you mean about mothers. Mine sadly died 5 years ago but m.i.l. is more upset about her tinnitus which she only suffers when I have a blip.
Oh just to say I was going to call it a blackberry but when googled by techs it may of confused them!
Love Debsxxx
JaneRA - apparently one is morphine Zomorph and one is similar to morphine oxycontin, both are slow release. Other than that - all I know is that one works for me and the other doesn’t!
Debsincornwall - I’m not quite sure what you are talking about here, - gardening - cherries - could that be baking? Could you please provide photo’s to clear up any confusion?
Dear Jane
Oxycontin is an opioid as is Zomorph - Oxycontin being Oxycodone and Zomorph Morphine Sulphate. Oxycodone is said to be very similar to Morphine sulphate in effect and side effects. I have not got any personal experience of either one but have found, through working with patients, that response to any analgesia is very variable from person to person, and what works brilliantly for one does not do the same for another. I can only suggest giving the Oxycodone a try - I really hope it works for you and that you can get some relief from the pain soon
Well I wouldn’t want it in a pie. There will be no photo so you can all continue to log on with confidence.
Oh gosh did I do the right thing in sharing this.
Love Debsxxx