66.5K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Deterioration of this disease

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs,
Hope the vinorelbine works for you. I had 12 cycles before it failed, and the tablets were quite easy to take. I used to have bloods done one day and then take tablets next morning at home after anti-sickness. Had to be ondanseron, the only one that worked for me. Bur certainly easier chemo than the gemcitabine/carbplatine I am on now. then had neulaster injection to boost bloods after second cycle on day 8.
Sorry to miss you at lunch to-day, always assuming I get there myself.
Grandchildren are great, I have two 4 and 6. The 6 year old knows all about my prognosis. last autumn when I was given 6 month to a year, she came into the hospital and said " I knew it was your hair thing Granny" and is very matter of fact about the whole thing. Certainly lightens the mood.
ove Marmite xx

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs

We have just moved house so no internet connection for a while just been trying to catch up.

Congratulations on the new baby its so exciting really good news. Its lovely being a Nan.

Looks like I will be starting on Vinorelbine (or maybe something else) soon just finishing last lot of Taxol but just had scan and looks like more progression in liver although Onc reckons it could be healing he said it depends who is looking at the scan (bit confusing) anyway really p..... off and also tumour markers were going steadily down they went down to 94 and last blood test had gone to 121 really scary. Anyway see what happens this week.

Take care Debs and everyone.

Love
DebsH

dawnhc
Member

Re: Deterioration of this disease

If debs doesnt mind I will add a bit to that. After the 2nd injection at the Marsden they do a quick ECG. Once you lie down on the MUGA bed they put a couple of stickies on you with electrodes. The strapping! consists of a large rubber band round the wrists to keep the arms down beside you. I usually ask for a knee rest to go under my knees and an extra padding under the pillow. The scanning plate is just over the chest area.

Dawn
xx

Guest user
Not applicable

Re: Deterioration of this disease

muga scan you have 2 injections they can both go in the small paediatric cannula half hour gap between each, you lie down and are strapped in there is a bit of noise and it takes about 40 mins. I get cannualted in chemo suit.
Hope this helps.
Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs

Congratulations on your baby news + getting the chemo. As for the other 'fruit of your loins' - I hope it ripens and drops off!"

I'm having a muga next Monday, not sure what to expect so if you have any useful tips, do let me know.

Love
Linda

Guest user
Not applicable

Re: Deterioration of this disease

Best of luck on chemo and congratulations on te new arrival.

Love

Jane x

Guest user
Not applicable

Re: Deterioration of this disease

Fantastic news on the forthcoming arrival and on the Vinorelbine, Debs - really pleased for you on both counts. Hope the effects of the chemo aren't too awful this time and that you can enjoy some good QOL.

I aim to see grandchildren too - probably a bit over-optimistic but you never know, I have to aim high! Right now am feeling very low for a variety of reasons but this thread has cheered me up.

Take care Debs
Lesley xx

dotchas
Member

Re: Deterioration of this disease

Debs,
Great news on the new arrival!
Wonder what size the berry will be by February?
Take care,
Dot
xxx

Guest user
Not applicable

Re: Deterioration of this disease

Hi Diane,
I feel so insensitive please forgive me I did not forget that others have young ones to see through life sorry...
I have been taken off avastin it was my choice I think for me it had run its course I could not do anymore taxol it was working still but at a lower speed. My big problem is the breathing thing so I hope this will improve I had a muga scan so I will find out on Friday if all is well.
Hope you are keeping well I need to catch up on some of the threads as I have been asleep for 2 days.
Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs

I am really please to see you got your chemo and hope that it works out well for me. Are you still on avastin or has that stopped now?

Congratulations on the news about the baby that's fab!

It's the things like that, that help drive us all on and give us all hope. Wanting to see my 10 and 7 year old girls grow for as long as possible is where I get all my strength from, it's only when I get under the dark cloud that makes me think that I won't that makes me freak!!

Hope you feel better soon with the new treatment.

Speak to you soon

Diane xx

Guest user
Not applicable

Re: Deterioration of this disease

Donna-Marie was born 20th Feb and we have always said she is a Pisces and that is when Bean is due. You are a warm loving funny lot but boy do you know your own mind plus expensive shoes and handbags come with the territory.
Love Debsxxx

AnneS
Member

Re: Deterioration of this disease

Actually I'm an Aquarius Celeste being born before 20th Feb but we're also highly intelligent,creative,sensitive souls!! Have lots of good friend who are Pisceans too!! x

Guest user
Not applicable

Re: Deterioration of this disease

Oh a grandchild - I want one of those.! Definately don't want to pop my clogs before I get one.

Well as we seem committed to this fruit comparison, cherries, berries, gooseberries - I just wondered whether apples or melons will start to feature, or even worse (bearing in mind we've just had a balloon fiesta in this part of the country), whether we might see Debs slowly start to float upwards? Perhaps Debs you ought to start wearing weights around your ankles?

Oh btw - absolutely agree with AnneS there's nothing like a Pisces child, sensitive, creative, intelligent - I could go on.....and on.....and on!

Glad you are feeling better Debs, and I hope you can make the meet up tomorrow.

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs,

OHHHHHHH
Great news your gonna be a Granny....
I am really pleased to read this,
Congratulations to all.

I am pleased you got your drugs and I hope it gets a little easier for you.
Keep taking the steriods they do make a difference.

Waiting in anticipation to hear what fruit you are bearing....

Love Tess.X

AnneS
Member

Re: Deterioration of this disease

So good to see your post Debs. You sure do know how to tell 'em!
So glad you've been able to have the vinorelbine and really hope it works for you and you get some relief from all your recent woes. That sounds really trite but you know what I mean - we just want to hear about all your antics again and hope that you will feel more yourself and not like a prisoner in your own home.

So thrilled to hear about your future grandchild! Feb's a cool month to be born in and you're definitely sticking around - it'll be my 40th then too!

Really hope they sort out your berry before it bears more fruit!

Big hugs Debs,

Take care,

Anne xxxx

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs, Lovely to read your post and glad you had the vinorelbine, I have been logging on since Friday to hear how it had gone. Is 'Brian' your onc? and I hope you get the 'berry' sorted soon.
What wonderful news about your grandchild, is it the first? I have 4, age ranging 8 to 13 and it is the desire to see them grow that keeps me going.
Hope you begin to feel the treatment working soon.
Love Lesley xx

Guest user
Not applicable

Re: Deterioration of this disease

Well I have done the glitter tissues several times. We make our Christmas cards and I usually end up with glitter all over the place will make sure I don't highlight my 'berry'

I had my Muga scan on Friday steroids had helped so was able to start vinorelbine. Four tablets taken under supervision of nurse. As I have no veins it was decided to apply for tablets which is good bu then you are told to go to Dr's surgery to have bloods done on the day before. Well I don't think I am going to let nurse who could not fine a vein 5 years ago go digging in now, when we know I am down to last vein standing. So I will be going to clinic on Fridays to have bloods wait and then take tablets. Nurse said Sister B did think I may want to change plans once they were explained to me!
Not got results of muga yet and the 'berry' situation is getting bigger by the day. I always were matching panties and bra(of the tarty lacy variety) so berry is getting stuck in lacy bit. It has grown and is more gooseberry size now! Think I will go to A&E when it gets plum size.
I have been knocked out all weekend sickness under control mind you there have been a couple of yuck moments, but as long as it works and gives me more time I will cope.

GOOD NEWS GOOD NEWS GOOD NEWS GOOD NEWS GOOD NEWS

When we had to cancel out anniversary trip to France we went to stay with my youngest daughter Donna-Marie and James they announced they were expecting their first baby BUT we were sworn to secrecy. You cannot imagine how hard that was for me I wanted to shout it from the forumand post on all the active threads but I was good.
D-M's dad died when she was 4 years old and she has grown up very black/whte has none of the gray that we can have to cloud us. At the moment her and James are in Rome so she rang to say she and Bean had been blessed by tho Pope. So I have told my onc there is no way he can lose me now I have to be here to welcome our little Bean in February. 'Brian' did say he had no intention of losing me so fingers crossed.
Thank you all for your fruit salad jokes. Dreading meeting handsome Dr.
Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

Debs, I hope that all went well on Friday with the muga etc and you are now armed with Vinorelbine and it is going better than your last Taxol. However, I wait with bated breath to hear the outcome of BerryGate. Has it grown? What is it? Has it started talking to you yet? (like How To Get Ahead in Advertising?) and are any of the attractive gynaes in your hospital single, perchance?

Loved the postage stamp story. Have you heard the one about the woman who had a quick bush trim before gynae appointment, ran late dropping child off at play group en route & arrived a bit sweaty, so popped to loo for a quick wipe? Male Dr said said something like "My, my, we have made an effort today" as he examined her which struck her as slightly odd. When she had her bath that night she found that her foof was sprinkled all over with her kid's glitter that had somehow spilt in her handbag and wormed its way into the very tissue she'd grabbed for the wipe. Always check your tissues!

love
xxx

Guest user
Not applicable

Re: Deterioration of this disease

Oh my goodness.....

What a lot of reading and laughing I have just done......
Debs I think your just showing off, you'll be growing an
apple tree next........

New dress from Monsoon bought with plenty of accessories and two pairs of shoes, heels and flats....
huge hole in the plastic and a very big smile on my face.
Thanks girls you were so right!!!

Guest user
Not applicable

Re: Deterioration of this disease

Oh Deb, sorry, have been away for a little while but coming back to read your story had my crying with laughter, so so funny. I do hope that you can get your little 'berry' sorted to your satisfaction though 🙂

I accompanied my mother (we are more sister / sister than mother / daughter) to a clinic for her to get help with painful sex, which was really getting her down when she had a nice new fella. Well, we nearly had hysterics when the Doc handed her a little glass item and said she needed to insert it to stretch the whole area again after a long absintance. Jokes about born again virgins were flying around, then my Mum looked at it and said 'but what if it pops up there and I can't get it out again' I fell about. Poor Doc was mortified at our behaviour, and you would have thought he has 'seen' it all!!!

Anyway, it all got sorted and did the trick for her, plus gave us something to laugh about to this day.

Good luck hun and hugs from me
Nikki

Guest user
Not applicable

Re: Deterioration of this disease

More lady garden tales. After my appendectomy one of the docs told me of a punky girl who had had to have the same op. She was fond of colouring her hair, and not just that on her head. When he had to shave her green nether regions, he left a little note apologising for having to mow the lawn.

Guest user
Not applicable

Re: Deterioration of this disease

Nearly died laughing at the postage stamp lady garden tale! Had a 50 something, sensibly dressed friend who was in a car accident; she was wearing saucy red suspenders at the time. She also had a hole in her coat pocket. A dishy A&E doc was examining her when she realised that her money had fallen through her pocket (all coins) into the crotch of her frilly knickers. The poor Doc had to go out of the room as he was trying not to laugh and her son, panicking that mum was in an accident came into the roomto witness his mum picking coins out of her thong.....Scarred for life....

Wishing you lots of luck Debs xxx

Jane x

Guest user
Not applicable

Re: Deterioration of this disease

Oh Theresa, how embarrassing for you. But maybe not as embarrassing as my friend, a fellow teacher, who on parents' evening found herself face to face with a parent who also turned out to be the doctor she had seen at the sexually transmitted diseases clinic the previous evening!

Good luck with your appointment today, Debs.

Deirdre

dotchas
Member

Re: Deterioration of this disease

Debs,
Hoping that the clinic give you something positive.If your berry gets any bigger you will need a wheelbarrow to push it around.
Thanks for sharing it with us and giving us all a giggle.I am like you and try to find something to laugh about.We were out for lunch on Sunday with friends (while in limbo waiting on results of a biopsy on a new lump) and my OH ordered pannacotta for desert ,well it came in two little mounds but one had a slash through the middle .........just like my mast/recon side.I was in hysterics!
Love n hugs
Dot
xxx

Guest user
Not applicable

Re: Deterioration of this disease

THANK YOU SO MUCH FOR THIS THREAD !
I'm having a bad day today and nearly wet myself larfing !
take care and keep larfing girls xxxxxxxx

Guest user
Not applicable

Re: Deterioration of this disease

Good luck today Debs, xxx

Guest user
Not applicable

Re: Deterioration of this disease

Off to clinic with a bag over my almost bald head. My berry seems to be growing it is nearly as big as my head, no second thought nothing can be that big.
Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

......actually he has offered me the opportunity to 'shadow him' on ocasions - what shall I do?

Guest user
Not applicable

Re: Deterioration of this disease

I've got a smear test tale as well...

Back in 1993 i had to go for my routine smear test and it was done by a gp i had not seen at the practice before... All went as normal - although i was slightly embaressed as i had never had anything that intimate done by a male doctor before...

Anyway came the time for him to be putting it in the bag and writing on the details to be sent away.... And i pipe up with - oh by the way we have just moved, i now live at 55 .... Drive.

Oh he said... i live at 59... !

Jane and Debs - I am so sorry that this disease is doing this to you... I've read so many posts by the two of you over the past year and gained so much from them... Thank you... I just hope you are both around for a long time yet (painfree) to make us think and question things and enjoy more precious time with your loved ones...

Theresa

Guest user
Not applicable

Re: Deterioration of this disease

LOL Deirdre! That made me laugh out loud!! He he! Thank you!!! (you do wonder what they think as they walk away and, even worse what they talk about in the bar when having after work drinks *cringes*)

xxxx

Guest user
Not applicable

Re: Deterioration of this disease

Just a little anecdote about lady gardens. My cousin had to have a smear test and gave herself a quick going over with a tissue from her handbag before she saw the gynae. She was a little perplexed when, during the examination, the gynae reached for a pair of tweezers and carefully removed something from her lady garden and put it in the bin. She was so embarrassed when she looked in the bin while she was getting dressed to find that the gynae had found a postage stamp in her lady garden!

Deirdre

Guest user
Not applicable

Re: Deterioration of this disease

Please no you are being wicked please you are not related. I will have a sack on my head and will not be wearing my jans.
Great to see you back Diane think we all need a break at times.
Love to all
Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

I've just realised Deb that the Latino Dr. is a close relative of ours - I will ask him if he's seen anything untoward when I next see him - or would you like me to forewarn him?

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs/Jane

Sorry I haven't been on for a while, I felt I needed a wee break as I wasn't in a great place a few months back and you all helped me through fantastically.

I have just read this thread from start to finish. I think I got to about the 5th comment before I started to cry (which isn't like me!) because I just couldn't bear the position you are both in with this horrible disease. I so want to say every swear word in the dictionary but can't be bothered with all the *** I would have to insert.

I do feel over the past 16 months I have got to know you both and hate the thought of either of you feeling scared and frighted because of the disease. Debs you have gave me so much strength over the time I have spent on here and your words have encouraged me to go for it with the media etc. Jane - I have always read your comments and admired your utter honesty regarding this disease, that and the fact that you are also have the same type of breast cancer as myself. It's your turn to get the support from the rest of us know and boy have you both earned it so rant away!

I will be thinking about you both and will not be going AWOL from this site any time soon - I feel guilty that you have both being going through such a hard time and I have been oblivious to it.

I will be hoping and praying that you both get through this hard time and that your new treatments work out well.

Love

Diane xx

nicky08
Community Champion

Re: Deterioration of this disease

Hi Debs
I've not been on here for a few days but it's quite amazing what a little rain and warm sun produces - a blueberry no less! Thanks for the laughs and keeping your pecker up 🙂 especially for the latino doctor. Good luck with all treatments and examinations tomorrow.
Nicky x
ps your tale of investigating your lady garden reminded me of a similar escapade in Dawn French's autobiography where she had to remove a piece of glass from her Mother's! You need to read the book to find out why but I hope the Dr's facial expressions or fears, as described by DF, are not the same.

Guest user
Not applicable

Re: Deterioration of this disease

Debs,

Have just found this thread. Wishing you all the best with your treatment. Thanks for the laugh about your fruity problem! I needed a smile today.

Take care of yourself,

Snoogle
x

Guest user
Not applicable

Re: Deterioration of this disease

Hi,
well yesterday I took my first steroid and today I had the second lot. I say lot as I have to take 4. Well I was up and dressed at 10 am not usual for me and I have entertained Magsi and D for morning tea we had croissants and cheese cake I served it in my Cath Kidston breakfast set and I think they were impressed. We had a lovely chat and a laugh she doesn't know about my 'blueberry' problem yet but she will when she returns home. Magsi gave me a lovely bracelet that E.J. had made I was moved to very happy tears. A priceless moment which I will treasure until, well you know when.

To all my cyber friends I want you all to know how special you are and how you have helped me along the trials and tribulations of this disease. We are all very different women and I embrace the differences.

Well will I wont I start my new treatment tomorrow. Will I meet the Latino who will remove my berry. I have to have a local but doubt I will be as chatty as I was when I had the port and hickman lines put in.

Love Debsxxx

Guest user
Not applicable

Re: Deterioration of this disease

Debs - you so did the right thing in sharing this. It made me laugh out loud - especially the image of you and Ian trying to hide your identities from the doctor.

It sounds as if you have sprouted an interesting fruit in your lady garden. Mine is barren of all growth. It's a desert, in fact. Why does the bloody chemo succeed in holding back the growth of my body hair but not the growth of the cancer?

Hope you get some results of the biopsy soon.

Deirdre

Guest user
Not applicable

Re: Deterioration of this disease

Hi Debs,
Thankyou for sharing that with us at your own expense and embaresssment.
Hope it is nothing to worry about.
Looking forward to seeing you at browns in Bristol next tuesday.
I was having a chat with friend about embaressments of cancer and chemo and having occasional faecal incontinance. She said I should carry spare pants in my bag and then bought me a frilly yellow thong. My favourite colour but not the sort of thing I usually wear beats boring old sloggis anyday!
Much love
marmite x

Guest user
Not applicable

Re: Deterioration of this disease

Debs, you have made me laugh so much with this thread - you have an amazing ability to find humour in these situations and I think it's absolutely brilliant, I take my hat off to you (or even my wig)

I really hope your blueberry is nothing to worry about and that it will disappear very soon of its own accord. I have to say that I'm quietly relieved there will be no photos 🙂

Don't ever lose that sense of humour, you're an inspiration and I really hope you can get your vinorelbine this week and that it will work really well for you.

Love from Lesley xxx

Guest user
Not applicable

Re: Deterioration of this disease

I started this thread when I was full of dread I am laughing my last remaining bits of hair off.
Ooops head hair that is.

Guest user
Not applicable

Re: Deterioration of this disease

Scampi fries in the delivery room! I've heard it all now. If I were you ostrich I would check back in my hospital notes just to be sure.

Guest user
Not applicable

Re: Deterioration of this disease

Thanks for sharing your story Debs, it really made me chuckle whilst cringing with empathetic embarassment for you.

Its not close but the embarassment reminded me of a time when I went into premature labour with my son (now 17) and lay in a delivery room with a friend with a rather tasty doctor examining me and suddenly noticing a rather strong smell of fish and feeling very embarassed. After the doctor left I turned to talk to my friend and saw that she was eating a packet of scampi fries! I just hope the doctor noticed too and didn't just go and write something about my personal hygiene on my notes!

Who'd be a woman!

dawnhc
Member

Re: Deterioration of this disease

Debs I don't know how you manage to find so much humour in tragedies! You just make me laugh. I hope life is giving you just a little of something to smile at cos you deserve it!. Anyone looking up fruit pie recipes on google might find a surprise ingredient!

Forgive the aside to Jane here:

I did say something similar to you on pals Jane in a pm. I was on a Marsden generated trial to compare oxocodone and oromorph. Oxycodone is used extensively in the USA much as oromorph is here. The trial is looking for a common factor in individuals who suit one more than the other - something in the bloods/genes so that when these medications are indicated - the best one for that patient can be given. I notice a huge difference between the two in the effect they have on me. I just would not touch oromorph now. Somehow on that I seem to lose 'me' if that makes any sense. I find the side effects are far less drastic on oxycontin. I am also finding that rather than top up with oxynorm when I need more I am using the fentanyl lozenges which react with the pain episode a lot faster.

I am hoping to be accepted on another trial to test 'sativex' which is basically extracts from the cannabis plant. It is being prescribed for MS sufferers and now being extended through this trial to cancer patients who have breakthru pain on oxycodone or oromorph. I will know on Friday if I am going to give it a try, otherwise it will be another nerve block.

Guest user
Not applicable

Re: Deterioration of this disease

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

annieE
Member

Re: Deterioration of this disease

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

best wishes

Anne

Guest user
Not applicable

Re: Deterioration of this disease

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?

Guest user
Not applicable

Re: Deterioration of this disease

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

AnneS
Member

Re: Deterioration of this disease

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

Guest user
Not applicable

Re: Deterioration of this disease

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.

Love Debsxxx