hi ladies
just a quickie to bump our thread up Would love to hear how everyone is doing as things gone very quiet on here??
Sarah best of luck with your onc appt this week do lets know how it goes x
margaret, Kelly, sandra- thinking of you please let us know how you are x
hello also to claire, sadie, nelima, breastfriend, jo, laura, jane + any other newbies I have missed - hope you are coping well as can be with treatments etc. X
lets get this thread going again- weāre all in a similar position + itās good to support each other along the way
back on tomorrow after chemo. Take care all
tina xx
Hi Tina been to the Marsden got on v well Iām gona have my treatment up there had blood test today then a kidney test 6 may then chemo 18 Iām on taxol plus carboplatin seems to think will work v well gona get all my notes and look at my scans hopefully will start moving now hope y ok tc laura x
Hi Tina and all,
my dearest friend has been for her second tax / avastin today and I am worried because she is not replying to my textsā¦hope she is just sleeping. She had a quick recurrence and skin mets whilst on chemo I think like you Tina, forgive me if this is wrong. I have just found out that her latest āsick noteā says that she is off work due to palliative care. Silly how this is so upsetting even tho we all knew the score before. We both foster children with severe learning disabilities, and I have promised I will look after her 10 year old, who has been with her since he was a baby, when she canāt. we have been best friends for 30 years, brought up our families ( 4 each) two grandchildren each. She was my rock when, like you Sadie, I lost a son, and now its this strange balance between helping her to live, and preparing for her to die. thanks for listeningā¦I pray strength and peace to all the ladies here, and for us who try to support you the wisdom to do and say what is needed. hope this is not too depressing, I think Iāll go on Sadieās 3 words to describe your day thread, that always makes me smile. Its just that āpalliativeā just sounds like āgiving upāā¦ hope chemo is ok tomoro Tina x
You certainly are a wonderful friend BF! So sorry to hear of your loss, and Sadie tooā¦I canāt imagineā¦Hope everyonesā chemos go without a hitch.
I know it has been a long time and for that I am sorry. I have had a bit of a bad time (who hasnāt!!) recently. A few weeks ago I had my first Zometa bone treatment. I had such a bad reaction that I ended up in hospital being pumped full of fluids. It was the first time since this had all started again that I felt so ill. Although I was taken into hospital on the Friday I was so ill on the Monday that I could not even turn over in bed to call for help. Anyway all is well now thank goodness. My onc wants to try me on another biphosphorate but I am extremely nervous in case I have the same reaction. Anyway tomorrow I restart my Capecitabine chemo cycle six. The dose has been well reduced as I did experience so many horrible side effects so hopefully they will be minimised this time. Anyway a girl can hope.
Again my apologies for the delay in writing this thread. I know it is so important that we stick together and give support. I certainly appreciate everything I have got from this thread.
Hope everyone is doing ok and I send my best to you all.
Lovely to hear from you again, Margaret - both myself and Tina were worried. Sorry you had such a nasty reaction to Zometa. Hope you are feeling better now. Good luck with the chemo.
Hi ladies
margaret- so good to hear from you Please donāt apologise for yur absence at all- yu sound like youāve had a rotten time. We are just relieved to hear you are ok. Best of luck with the new bone drugs + yur next round of chemo. Thinking of you x
BF- glad your friend is ok. Iām sure she wonāt mind you stalking her lol! Yes you are right about myfast recurrence and dx with skin mets. It happened within a few weeks of my last tax + was very nasty. My team are also taking a palliative approach- itās the norm in this country once a stage 4 dx is made. Ice been upset that they havenāt been more aggressive with my treatment especially given my organs are clear but I canāt change the system We just have to pray for quality time x
Sarah when is your onc appt? Why are you up so early?? Hope you are not to anxious about it all x
love to everyone else will be back on later- I must get dan ready now so he can go to his nannies whilst Iām at the hospital.
Tina xx
Hi All - I agree Tina, we are the best source of support for each other, so lets share!!! I hope your chemo went OK today and the week ahead is not too horrid!! At least you got some Easter sunshine! Sounds like a fun break!! Sorry your skin mets are causing you hassle - is there a treatment plan??
Bestfriend - so sorry to hear of your loss. Loosing a child is very difficult and friends are very important. I relied heavily on my bestfriend at the time, Maxine. Sadly, she died of bc a few months before my diagnosis. My life has had more ups nd downs than a soap opera - who needs Eastenders!! Glad to hear your friend is ok after your scare lastnight. I do miss Maxine so much! We never had the opportunity to do the bc āthingā together. Im glad your friend has you. Im pleased you like the three word thread - it is fun!! Nice quick way to see how everyone is and fun to try and get your bit in three words!!
Margaret - Hello! Nice to āmeetā you. Im sorry you have had a rubbish time. It will take a lot of thought to try another bisphosphonate! Hope todays chemo goes well for you too.
Sarah - Thank you for your kind words. It was a bit rubbish!! But I have two wonderful children (twin of the little one I lost and big sister) who keep me going! Well done loosing 1/2 stone. That takes some will power in the middle of chemo!! Good luck for your onc app.
Laura - So pleased your app at the Marsden went well. How exciting to have your chemo there. That really is good news and you sound more positive. I hope that is the case.
Hi to everyone else nd lets keep this thread up there!!
I have chemo tomorrow (delayed from Monday cos of BH) so an extra few days āoffā!! Feel almost normal and have been doing the school run - not done this since October cos of spinal op and then chemo. So enjoying doing normal stuff!! My chemo this week is the looonnnggg one (Avastin and Taxol) so plan for 8 hrs ++!! Still I have a couch as I can not sit that long and can snooze etc! I think it is the Avastin that is messing with my temperature (dropping 2 degrees frequently). So, I will monitor it this time and try and keep warm! The hot flushes almost help!!!
Hi all on here - great thereās more activity on this thread!
Had onc. app. today - nothing much to report, thank God! He had a good feel around my neck/back/collarbone and said he couldnāt feel anything worrying - so I donāt need a scan now till July, which Iām really pleased about! I did have bloods taken, though, so I expect theyāll check tumour markers as well as other things, so, hopefully, these will turn out to be uneventful!
No Tina, I wasnāt up worrying! I hadnāt been to bed yet - this is a regular occurance in the school hols! I donāt know why it always happens, and itās probably my fault ultimately, but my sonās sleeping habits have always been crazy! As a baby, heād take 2-3 hours to have a night feed and as a toddler we were often going to bed at 6.30am, when his Dad was getting up to go to work! School nights, he generally wonāt go to sleep until midnightish and has to have me there to get him off to sleep! Not sure if itās an autistic thing, as he has ASD and gets totally obsessional (even more than normal) at night. Itās totally mad, though and I make it worse by needing lots of sleep anyway and not getting up till about 1 or 2pm in the holidays! Sorry to go on here!!! Heās the most wonderful child, but it can be a bit tough sometimes! Saw on other thread you mentioned you were a teacher, Tina - what do you teach? You have my admiration as I was a French teacher at comp. during my 20s (in the 90s) and havenāt been in a classroom for 13 years. Havenāt got the nerve these days!
Sadie - Iām not that good at slimming! - Iām not on chemo. at the mo. and havenāt been since last July (taxol). I really appreciate relative normality now! My heart goes out to you all on chemo.
Wishing good results for you all.
Hi Sarah, sorry I got confused about your details!! I should keep notes on whoās who!!
So glad all was good at your onc app. Gives us all hope!!!
Interesting about your Son - Im a Speech and Language Therapist who works with ASD!! FAB that you can fit round each other nd sleep whenever!! Must be tough in term time though. How old is he?
My Onc said Tumor Markers were not worth doing, but I see you have yours done. Would be nice to be able to monitor via a blood test. Are there different sort of tests? Which do you have?
Off for taxol with a little avastin nd pre meds on the side!!
Hugs to all and hope you get some sleep Tina.
Sadie Xx
Update. In hospital at 8.45 ready for 9 am appointment. Just been told drugs not ready till 11!!! Two hours of my life just waiting for NHS cogs to slowly grind to an almost halt!!! And this happens every single week no matter what I do!! Fed up with it. MOAN!!! Why is it so difficult!!
hI Sadie/Ladies
Just wanted to say hello (I spoke with you before - Iām the taxol and avastin lady and TN)
Your hospital visits sound PANTS!!! Its absolutely ridiculous that you have to sit and wait around so long - as if the traetment isnāt long enough. Is there anyone you can talk to about the delays?.
My teatments are plodding along OK - I get an horrendous burning sensation in my arm when Iām having the Taxol but they give meheat pack to try and alleviate it - do you get this pain.
Thatās really annoying about your hospital wait, Sadie. I had chemo. at home last year and a similar thing used to happen with the nurses waiting for an hour or two most weeks to collect my drugs - so it seems commonplace, but still v.irritating. I didnāt have to wait for them, either, so it is much worse for you. Yes, thatās funny that you were a speech therapist working with ASD kids - Dan had some really nice ones when he was in primary. Heās 12 now and in Year 7 in Comp. I bet they miss you in work, Sadie, you seem like a really sunny, lovely person!
Hope you all donāt think Iām being insensitive moaning/reporting good news when a lot of you are going through worse times? Of course, nothing is definite with cancer and I donāt know whatās going on inside me - sure I havenāt seen the last of it etcā¦Iāve been agnonising about all this - something Iām very good at. I have OCD and my son is always saying āFor Godās sake, woman, stop checking/washingā etc. Good luck and hugs to all,
Hi all, just had to say,Sadie and Sarahā¦I work as level3/tutor in our local āSpecialā school, my son Leon, who I lost 6 years ago aged 14 was autistic, and my permanent foster son who is ten and has been with us for 4 years is autistic tooā¦ small world!
My friend Heather gave me her letter detailing her condition and treatment thus farā¦it says she has a hilar mass and adnexial mass, both mets, is adnexial her ovary? anyone had experience of these? she also has mets in mediastinal node, another node in her back, a tumour in her remaining breast that is ibc and a small pleural effusion right side. she says she is more comfortable after first two taxols and feels things are improving, it just seems to be in such a lot of placesā¦Sadie, it is strange how some people have so much hard stuff to deal with in their lives, I am so sorry about your friend, I canāt imagine losing Heather. o I have gone all doom and gloom again, sorry everyone! enjoy the wedding lol x
Hi - First, I am so pleased we have each other. Thank you for being there!!
Linda - I have a Hickman line so do not feel anything when the Avastin goes in. Sorry you do! Not fun!! How are you doing with the SEs? I really struggle Day 3 and 4 (Thurs, Fri) - very tired, spaced out and unable to think straight or move straight. Just about recover by Sunday nd then back in on Monday. It is hard going. How are your nodes on examination. Do you think it is working? Sorry lots of questions!
Sarah - Please please please keep reporting every little positive detail. I am delighted for you - but it also gives me hope and a massive positive feeling that āI can do thatā. It is wonderful to hear. Please dont stop and enjoy sharing.
BestFriend - It is a small world. Interesting we all seem to cross over teaching / therapy / children - a research project?? They do talk about a cancer personality - we do sound similar!!! Sorry to offload all my difficulties on you a few posts ago! I think i was in a āwhy meā mode and felt I had had enough! Sorry, I am no help with the Ovary mets and the other mets Heather has. Im sure someone will, and a cyber hug coming your wayā¦did you get it??
Tina - hope you got some sleep and ive just posted on your holiday thread - i like holidays!!
I complained today in hospital - very proud of myself. Arrived at 9 and nothing happens till 11 this is NOT OK!! They said sorry and will track back to see where it all went wrong.
Sorry I feel a bit like I have taken over this thread today - you can always skim over it and speed read bits!!!
Sadie, didnāt feel you were āoffloadingā (nothing wrong with that, we all need to!) Its just that Heather also has had more than her share of tough things to deal with in her lifeā¦ it sometimes seems as if some people have very calm, uneventful lives, and others have to ride the rollercoasterā¦Heather also has found the hickman line much more comfortable when having chemo/avastin. She is convinced she is already seeing improvment with this treatment, praying you all do. she is seeing little se so far, but I remember yours seemed worse after 3rd treatment? xxx
Hi Heather - it was actually number 1 that was the worst. But now im in a routine. So, I write off couple of days, sort out lifts for the kids to and from school and sleep!! My Onc has said I do seem to be suffering a bit more than ānormalā (whatever that is!!) but is reluctant to reduce the Taxol as it needs to work!
Thx for hug, I got it!! And a smile back to you and Heather!
Hi Ladies, forgive me for butting in on a thread that I am not part of - but Linda mentioned about the chemo burning and I thought something I was told might help. The chemo nurse said if you drink plenty of fluid the day of chemo it helps to plump up the veins and they carry the drug better. I also used to have the heat pad too. Now I will butt out
Would love to hear how everyone is doing as things gone very quiet on here??
We just have to pray for quality time x