Well I am up dressed and awake managed to do a bit of cleaning in daughters bedroom. She has been married 2 yrs and doesn't think of it as her room funny how we hang on isn't it. We are about to decorate it so maybe the word guest room will be easier to say. It is sunny and dry so Oscar and Emmy will be happy when we take them for a walk on the beach.
Katherine pleased to hear you have got BUPA to approve avastin it seems to be still working on holding back my tumours it is the new sprightly ones that I seem to have the problem with. Hope you like your new hairdo.
Jane hope you are feeling o.k. and are able to have your next dose of taxol.
Debs hope you have a good rest I feel much better, this is my week off
Cathy I haven't had any results from markers but I do fel better, saw my oncologist this morning and he has got BUPA to approve Avastin for 18 months or further progression, he is going to do 3 cycles of Taxol and Avastin and then scan and if going well another 3 so I feel better knowing that that is all in the pipeline. I am going to see my hairdresser this afternoon to sort out colour , have a party this weekend. Am glad to hear you got away at half term I went to Center Parcs but was reallt tired. I have checked with oncologist and he is happy for me to fly so been musing over options for next half term.
Thanks Cathy and Katherine
today is a tired day feel like I was out till dawn last night(I wish).
Have a good week everyone those on a chemo break enjoy.
I have been looking at the markers and they are coming down from where i started this taxol lark - but it is slow, still at least it is the right direction as of last week, i don't know how this will translate in terms of results. I think the plan is for me to have a scan at the beginning of december and see where I am....nothing worse than not going on other than having scans and finding out you don't like it,
I am tired, I tend to find it very difficult to get out of bed in the morning, really have to drag myself and then it can be difficult to sleep on top of it...On my week off I managed to get away with family for half term, to spain but overdid it one day and ended up completely crashed out....and like you am reading ALOT !
Glad the hair is hanging in - mine is actually doing really well and I just won a free cut and blow dry in a raffle. Had to laugh, I think I will even try to use i.
Debs glad it went ok I have a week off next week but see the oncologist on Tuesday so will see if there is any progress with markers.
Cathy have you been told how things are progressing in terms of markers or scans? I think the plan is at the moment for me to have 3 cycles and then another scan. The hair is hanging on in there but coming out a bit ! I'm looking forward to having next week off although I note that Jane says she is tired that week. I have to say I have been very tired and if I have been in work then tend to take to my bed for the evening. I am running out of books! Will have to hit Waterstones!
I think it's going to be the sort of wild and windy weekend when you need a good read!
Thanks for all the advice re lack of my Tom Criuse I am full of movicol, fibrgel and too many to mention. It is my own fault as it happened last time and I started the movicol etc too late. Made a lovely fig bread needless to say Ian has no problem in that department he is the other end of the spectrum. If he missed a day he would consider himself seriously ill.(sorry too much info)
No problems finding a vein so had tax and left. I feel so sorry for the nurses the dept is over loaded on Fridays. No clinic in operation on Friday afternoon so no coffee ladies or reception staff. Poor Ian usually gets involved in kettle duty administering hot pads and drinks. He always buys chocs for nurses and patients so is very popular as usual am I sat here Friday night with no chos. Just read this post out loud and have been informed chocs in cupboard.
Hope you all have a lovely weekend and thank you for your support we really do appreciate it.
Debs - I was told start the laxatives before you are bunged up - might be a bit late but once you get moving keep going. Also was told to mix softeners with movers....so at it's worst I would have two on the go. Have to say Movicol is great - you can take a few sachets to get you going!
Movicol has worked for me too.
I've had 6 weekly taxols now. Should have had no 7 this week but have been feeling c**p after voice operation so put it off. Clinically my neck tumours felt a bit softer after first couple of taxols but neither me or onc very sure now....hey ho...
I've found the weeks off taxol worse than the weeks on. On the weeks on I am good (bit high on steroids) for 4 days, tired for 2, and variable the other day. On weeks off have felt very tired all the time....lovely.
It is hard physically and emotionally...
Debs...I've got a Hickman and it is a relief not playing hunt the vien (but get a portocath if you can...hidden under skin. For some reason doctors in my area do Hickmans and not portocaths..not sure why...)
best wishes to all on weekly taxol
I use the movicol and then take something after 48 hours - find ducolax works wonders, doing reasonably well on that. I think it actually gets easier as the taxol gos on - number 8 for me next week,,,,(arrggg) are you still having the avastin as well?
kathryn - how are you doing ? How is the hair? this weekly business really is a bit much . I find it quite hard physically and emotionally, trying not to get worked up about it - eg looking a markers etc, but its not easy....on plus side I am finally having my new kitchen started....
Movicol is great. Comes in sachets and you add it to water. Doesn't taste bad bud it tastes slimey if that makes sense.. Got it from oncologist and then on prescription from GP. Works wonders.
Hope it all goes ok, do push them about a port to stop the messing with your veins, it really does take away the stress. As to the toilet end of life I have every sympathy, has anyone found anything better than senokot?
Have a good weekend
Ready for my second taxol. Fingers crossed they can find a vein! Not been to the loo for a week. Great isnt it?
Really sorry to hear about your little uggers. I always smile when you describe your liver in cheese terms, although I'm not a fan of blue cheese myself. :0 Let's hope that the Taxol kicks in and does what it says on the packet. I always take comfort from the fabulous response you had earlier this year when it was all looking so grim, and so I sincerely hope that you get a good response this time, too.
Take it easy
Just wanted to say I know exactly where your coming from reading through your threads I just keep thinking me too! if the taxol did for the uggers before then it should do it again, enjoy your rest make the most and be pampered
Just wanted to send you a big hug and say I'm thinking of you. So sorry you have had to go back onto the Taxol, but I really hope it does the trick.
love wisps xx
Sorry to hear you've had to go back on Taxol but I hope it will get rid of the pesky blighters! You've sent me several positive and helpful emails and as one who's been on Taxol/Avastin since March and looking to stay on till next April I'm thinking of you and rooting for you and have some idea of what you're going through.
I've just had my week off (3weeks on 1 week off)and have had a fantastic social time ending in a great weekend in Glasgow but came down to earth with a bump today with an awful migraine with sickness etc. and the planned tax/Avastin for tomorrow has been delayed for a week so it's a real rollercoaster. Keep going though and I'm thinking of you and your family.
well thats today gone only just lifted my head off the pillow. I am so glad Ian has worked really hard in the bedroom(decorating not the other) it is really comfortable.I dont feel sick it is just sleep.
Thank you all so much for kind wishes and advice re line hand looks o.k. but vein in inner arm looks like a pleated b.oody curtain.
Hope you are all well and have enjoyed the sunshine.
So sorry to hear you have to go back to Taxol and that you had such an awful time. Just to echo Cathy , is a port not a possibility. My veins are awful and CT scans a nightmare but with the port I can have bloods done and chemo no problem. I'm battling on with the cold cap and Taxol to see if I can hang onto my hair! Thinking of you
I am so sorry for you! Hope the Taxol gets it under control again. Please do consider having a port put in. They put mine in during mastectomy and I hardly ever notice it's there. Really only think about it when kids ask Mummy what is that? But no fiddling with needles etc. They put needle in port, take blood from there and then I can go for chemo. No messing about.
yes do consider having a port in, mine is tiny and I hardly notice it, its a small bump on the cleavage area and it saves so much trouble...I had no pain with it afterwards at all - healed up really nicely..I think you have put up alot with your veins and they should offer this if you want it,
Really sorry to read your news. I hate having the Taxol, and so completely understand how you feel. I started it in May, and as far as I know will be on it for at least a year with the Avastin. However for the last couple of months my hair has been growing back while still on it, which is nice!
I really urge you to have a port put in. I went for 13 weeks with my nurse muttering about how poor my veins are, and then finally decided to go for it. Although it is not so nice to have a lump protruding on your chest, you only see it when undressed. Plus the pain that I experienced for a few days after it was inserted was excruciating. BUT the benefits far outweigh the disadvantages. I have no stress while I am being plugged in, they can take blood from it, and I have both hands free to do the crossword puzzle. It is fantastic!!
I hope the Taxol works well for you, and that you don't feek too awful from it all. BTW, I negotiated my treatment down to a week break every 3 weeks. Yay! It really helps.
What a rough time you had and are having Debs - sending lots of hugs and good vibes! I asked if you were around yesterday - I was in haematology/ oncology dept. Had a job to find vein after all intravenous bit for antibiotics last week - not a patch on your trails tho- I asked if you were around and they said no! Keep in touch and we WILL meet up & with Abi'smum.
Thinking of you - remind me - how old are the family?
Thank you all for your good wishes they really do help.
Well, what a day onc said as I was due avastin and pamidronate today he would try and arrange for taxol to be added. I got a phone call at 8.30 to say toxology would be making up my treatment so I could go in an hour later. Great I had breakfast in bed and then got another call to say another hour later. I nearly had lunch in bed!
Nasty accident held us up a bit on A30 soit was after 1pm when I got there.
I, like alot of us have spent most of this year in the chemo ward so they know me and we all knew I was only on a chemo break. I convinced myself it would prepare me for my return to chemo and would free me of that'oh my god is this the beginning of the end" All very dramatic I know but no matter how many times we have to return to chemo I really do think we have those horrid thoughts that this could be it..
My avastin was on the ward before me I needed blodds doing as I was quite unwell last week with an unknown infection and was sent for an urgent scan. That i itself was a nightmare as they could not get in any vein and in the end the radiographer was in tears and I had to comfort her! Anyhow as I predicted my veins are totally wrecked. After 4 attemps by 2 nurses they called Sister Bridget and she gave me a hug and then everso gently got in a delicat patr of my under-arm. Job done bloods taken, pee sampled and blood prssure done I was able to have avastin. Anti meds and 1/2 hour wait and then good news bloods just passed, infection under control I was able to have taxol. Then the bloody vein crashed and we had to find another one.( how the hell the likes of Amy Winehouse Pete Docherty manage) I was let lose at 7pm with a very tired chemo nurse and sister. We all kissed goodbye, how I wanted to take them for a very long drink but not really advisable ater all the poison they had just put in me. Thank goodness Ian always buys them lot of chocolate.
So I am now home buzzing my boobs off due to steroids. My hair was just looking cute my eyelashes had grown back nice and long, eyebrows, well as a sixties mod I havent had any decent ones for years.
Thank you so much again for your kind messages.
So sorry to hear your news it really sucks. I hope the taxol kicks those suckers into space.
Sending you are huge hugs thinking of you
This is just sooooooooo crap and I am really sorry that you are going to have to repeat the process.
Thinking of you
Love Anne xx
I am so sorry that your uggers are not behaving themselves and you will need taxol again.
Don't you just hate the yoyoing with the hair.
Thinking of you
Really sorry to hear your news and that you have to go back on the taxol again. I hope that it works again for you though and that you dont suffer too much with it.
Take care and thinking of you
Oh Debs, sorry to hear that you are back on the taxol....what a pain. That seems such a silly thing to say and not much help to you....glad that your onc feels that taxol is still good for you and that you can go back on it Do you start againnext week ?
. I meant to write to you Debs as my MP has written to me asking to meet me about co pay - will let you know how this gos....
Sorry to hear this, Debs. Really hope that the Taxol works well for you again and gets those little uggers. Telling the family the bad news is always the hardest thing for me - as a mum, you just want to protect them from that hurt/fear, don't you?
well it is confirmed the results of my CT are not good, mind you I was not expecting them to be as I have been feeling crap.
Oncologist has just telephoned to say how sorry he is but the little uggers have grown again so I will be going back on taxol. As it worked well for me from Feb to May and I had good shrinkage he thinks it is time to go back on it. Funny because most of my tumours are responding well to the avastin and seem to be holding back it is the new clusters that are taking over. Fingers crossed they will respond and fade away. Giving me more time with my lovely family not looking forward to telling them, I just hate to see the fear in their faces.
Just got use to my trendy crop, oh well I will be able to wear the new wig I bought, just in case, thats a laugh isnt it?