crossed posts
Hi Jayne
Sorry to hear your mets are growing. It’s horrible when you don’t feel yourself, but I do think that when you’re immuno-compromised it takes ages to recover from cold & bugs that “fit” people sail through. Herceptin supposedly causes fatigue, plus all those Taxols must’ve taken their toll cumulatively.
Is it heartburny/indigestion that you’ve got? Have you tried Lansoprazole? I know that when we notice changes we think the worst (I am currently there with my lung mets which symptomatically aren’t improving very much), but I have to remind myself of the people here who have improved even when things have looked bleak.
So, which NICE guidelines are these then? I have stopped Herceptin for my current chemo which is an anthracycline and heavy-going on the heart muscle. Herceptin already places stress on the heart, hence can’t have both. Are they stopping because of a conflict with chemo, or for some other reason?
Enjoy Come Dine with Me & don’t forget Strictly (and the Come Poo Dancing version - that made me laugh sooo much). I think Debs has got the wrong end of the stick and the Beeb are actually interviewing her about her notorious poo as part of the program It Takes Number Two!
lots of love
xxx
Jayne I’m so sorry you are poorly again. Immodium always worked better for me than anything else for diarrhoea (which I never could spell.)
I just hope you can grasp some more good days. Thinking of you and all of us having bad times right now.
Jane
Joy and anguish:
I have always said that that the way I deal with cancer is to fully acknowledge its awful anguish, what it destroys and damages. At the same time there are invariably some uplifters, some moments of laughter or relief which can be named joy.
I have struggled with my own mantra of late…hard finding the joy…not least because with a paralysed hand I can’t hold anything at all in my left hand.
But today I’ve had a nice day…nice meaning enjoying a shower with my partner in new fast step in shower room; nice meaning the chemist got the right dressings in’; nice meaning a lovely walk (wheelchair) through water meadows; and nice meaning yes gormless wheelchair shopping for 2 pairs of shoes which I can do up myself…and all these bits of niceness add up to joy…as much as I can get today but it will do.The anguish is still there but hidden for a few moments.
Jane x
Thank you Jane.I just got back from visiting a dear friend<j>who is terminally ill in hospital.Reading your post showed me that she may still have some happy times to come.</j>
Hi,
yes I think I can relate to the joy factor as you all know mine this week has been able to poo. I am also quite excited about the change in the season, looking at my husband and seeing a relaxed smile on his face instead of fear. Knowing that my best friend is coming to visit for a few days and hoping that once she sees me she will be able to leave me and feel a little more confident that I will make it beyond Christmas. Maybe when we were healthy we just expected too much.
Really glad you are enjoying your new bathroom Jane and it is making life a little easier. Thinking of you and sending love.
Love Debsxxx
Hi All
yes joy and anguish are good words Jane …and sometimes it’s hunt the joy…elusive little bugger at times ! but happy to hear you have pieced a bit together today - although youhad to look hard and put together - although shower sounds great and glad to see you are keeping up the gormless shopping … just taken more immodium … so hopefully some relief for a few hours!
Thanks for replies everyone - in fact they have bought a little joy - after the last few days and pretending its all ok and not worried to daughter! Juliet - will not quote you but raise the question about other oncs ignoring the guidelines …thanks Ripley - you have a good memory re my taxol… apparently the new nice guidelines are only about progression so if you have ben taken off herceptain for another reason you can go back on- I do get heartburn , Ripley but this pain seems to be a bloated stomach with pain under ribcage??? … are you worried about symptoms of lung mets …when is your next scan?..and I agree with you about BBC interview and the big POO - Debs this could put another spin on the interview - maybe slip it in at the end??? … and glad you have glimmers of joy - I always try this time of year but find the impending darkness hard to get used to …well hers to chasing a bit of joy - just so we can forget the anguish…for a few minutes!!! love to all Jayne xx
Hi all
So sorry to hear you aren’t feeling well, Jayne. It is so hard to know what is due to the cancer, what is a side effect and what is something else altogether. However knowing what I know about liver mets (and obviously I am no expert), I am concerned that what you are describing is indeed due to the cancer and the liver struggling -could what you describe as bloatedness be due to fluid collecting? Really don’t want to alarm you (and sorry if I have) but would suggest you ring for some advice.
On a much happier note, I am really glad to hear that you have had a good day, Jane. When this sh*tty disease steals so much from us, it is hard to find any joy in what is left. And the more it has stolen, the harder it must be to do that. For me though the hope of finding some joy and laughter is what gets me through the darker moments.
I missed “poogate” Debs (been away on an absolutely fantastic Odyssey week - lots of laughter but also tears) but am glad you got relief (and joy!). And once again, good luck with the BBC - you are doing us all proud.
Kay x
Well it is done and I hope I have not made a fool of myself. It is hard speaking to a hand so if my eyes look to wonder it is because I had to look at the camera mans hand and as he was also holding on to his tripod
he moved and so did my eyes. Plus my scarf moved so it is a bit Monty Phython.
I am now waiting for my friend to arrive Ian has gone to Newquay airport to pick her up.
Love Debsxxx
Im sure you didnt make a fool of yourself Debs, you are the forums wee superstar.
thanks for speaking up for all of us on here.
love
Carol xxx
Well done Debs - I’m sure you’ve done us proud. Have a wonderful time with your friend - hope the sun is shining for you in Cornwall as it is here in SUrrey.
Jayne - how are you doing? Still worried about you.
Kay xx
We promise we will NOT notice the moving scarf!
Well done!..xx
yes - well done Debs - will be watchingtomorrow and enjoy your time with friend,… thanks Kay I am going for treatment on friday and will mention it to them…jaynex
well done debs a good days work… we are all so excited to see you in action,
lots of love
lenny
xxxx
Well done Debs. Can’t wait to see it tomorrow - have got it to record the whole programme! So proud of what you’re doing.
Take care, hugs xx
Thank you so much for putting our views into the public arena. I’m so looking forward to seeing you on the telly - well done, you are one very special lady.
Linda
x
Hi Debs,
Looking forward to seeing and hearing you tomorrow and I am sure you won’t have made a fool of yourself. As someone else has said you are our ‘Superstar’. I wish I could offer the same kind words and support that you do but cannot always express myself as I would wish.
Hope you have a lovely few days with your friend and that the sun shines for you.
Lesley xx
Hi Jayne
Sorry your not feeling too well, I would also suggest starting another thread on your liver problems as well - there is a lot of us out there and I think it merits it own onee.
Jayne I will be able to let you know more tomorrow as I have a just had a scan and am due for my results tomorrow. However I have had pain in my liver for months now and have needed constant steriods in order to keep the pain under control. I have tried 2 types of morphine and various painkillers that haven’t worked at all the doctors have came to the conclusion that it is inflamation on my liver as steriods and nurofen are the only things that work which apparantly are anti inflamatory’s. I can’t take nurofen(sorry for the spelling!) because my platelets are too low but I have to say the steriods stop the pain but cause all sorts of other problems such as lack of sleep.
The last time I saw my onc I already had this problem, she had a really good feel of my liver - said she’d felt it worse, that my liver functions were fine and didn’t seem too concerned did mentioned she was a wee but concerned to hear I was in a bit of pain but certainly didn’t want to investigate it any further and didn’t worry me about it. I said the same things that you are thinking that it was worrying me that some of the tumours were growing etc but it could also be down to the medication you are taking basically annoying you liver.
My rib above my liver is also sore, I have been told that there are a lot of nerves down there and just like we can all suffer from pain in our shoulder it could also be a nerve that goes to your rib and not your shoulder.
I will let you know how I get on tomorrow, however I am going on holiday on Thursday and getting an extra week off chemo so I have kind of got my mind prepared for no matter what I hear it is not going to ruin my holiday - I just hope I can pull that off. Look out for a new thread on my results I’ll let you know.
Thanks
Diane
Hi Debs
Just watched you on the telly, you were great as normal, out our point across well - well done. I know you feel c**p just now Debs and hope you feel better soon, you looked really good on the telly, how did you pull that off is because you’ve been to the loo I wonder. If only all those millions of viewer know what we do eh
Well done Debs
Diane xx
You were brilliant Debs…and you looked most glamourous too…fantastic that you got the whole questionning of the naming of the Tickled Pink campaign in so well and so powerfully…disappointed but not the least bit surprised with the BCC response from the BBC breakfast sofa. Love Belinda…x