Love to all on here. So sorry about your friend, Tina.
Love, Sarah x
Sending love to you all, especially Tina, so sorry to hear about your friend.
Lavender
xx
hello everyone, thinking of you all. Had last Rads (10) today, haven’t posted much as the journey to cheltenham from wales bloody hard work rads this time round has knocked me sidewards. i see onc on thurs find out then what next going to try and just potter about tomorrow stay in my pj’s all day
love to everyone
rhi xx
Hi ladies
just a quickie this morn. Had a letter yesterday saying my appt is next weds not fri so 48hrs less to wait! Feeling really rubbish, my neck has started aching now too. Going to hav2 try + not lose my rag next week- think it’s wrong that tgey are just leaving me to let this disease progress freely 
Was asleep by 9pm last night + was hoping for a lazy day tday but my boy still poorly so will hav2 keep him off nursery…
Rhian well done with getting through rads 
Hopefully it’ll really improve ur shoulder. I also found rads exhausting + if u hav a long drive too, I’m not surprised your shattered. Any news on ct results? Enjoy ur pj day X
Rachel good luck with scan at the christie tmoro x
wendyglad ur coping ok got everything crossed for ur scan in a few wks x
hope everyone else is ok x
thanks for your support about my friend. It’s the funeral tmoro, lots of us from clinic are attending. She had a terrible time + broke her neck amongst other bones, the mets were so bad. We are going to Manchester for the day + night straight after. Hope I’m not on too much of a downer as it’s been booked since my bday. Hubby knew I wanted to stay at the Hilton so he booked it as part of my bday pressy.
Love to everyone xxx
Good luck today Rhi. I’m off to see my onc this afternoon too to see if I wil be suitable for chest wall rads as previously had to both breasts and MDT thought no def shouldn’t have them but surgeon thinks def should so off for an assessment to see if it’s a yay or a nay.
Got nystatin for sore mouth it’s def better than it was but still bleeding and puffy and feels like it’s burning… But I sleep again last night. I’m been checking my temp before bed and if ok I’m taking two paracetamol and I’m sure that is helping.
Tina so sorry about your friend. Bloody unfair disease Iv lost 3 freinds in the last 18months all younger than me (36 a d 37) and two only had 1 year from diagnosis… Both with young kids too… It’s just so sad
Glad your appointment has come through sooner. And try to enjoy your weekend in Manchester… Make some memories
Love and hugs ladies xxx
Lulu xxx
Hi Ladies
Hope your all doing “ok” today.
Tina - so sorry to hear of the loss of your friend. As Lulu said it’s so bloody unfair.
Good luck to you all on yr appointments coming up in next week, thinking of you all.
I should have had more chemo today, but onc canc cos of worsening finger nails, (taxol), but having avastin again next week. Next app with onc is end of nov.
Luv n hugs to all
Sandra xxx
Hi All - Back from Paris and we had a wonderful time. The best thing was NOT thinking about the big ‘C’ first thing in the morning, last thing at night - oh yes - and during the day too!!! Doing things TOGETHER as a family - was wonderful and my 12 yr old pushing me round the Louvre in a wheel chair was hillarious!!
Sandra - Your poor finger nails. On taxol / avastin, mine were not as bad as yours, but as soon as the taxol stopped the nails started to get better. So, hope the same for you!!
LuLu - Are you getting the rads to your chest wall?? So sorry about your friends - so young!! How are you getting on with injecting yourself?
Tina - I wish I could give you a real hug - you sound stressed! How was the funeral? How was the Manchester Hilton? Did all 3 of you go, or did you leave your little man behind? I hope Wednesday is positive and you feel looked after!
Rhi - well done getting to the end of your rads. What a long journey. I hope you had a friendly driver?
Lav Lassie nd Joey - Hi - how are you both doing?
Sarah - Hi and thanks for your nice comment!! I said HI to Paris for you.
Wendy - You said ‘gemcarb - most people cope without too much trouble’ but Im on only CARBO and i struggle - so you are not lazy!! (unless we both are!!!)
Rachel / FQ - Left hand typing, well done, but what a pain!! Gosh you are having a lot of scans - glad they are being thorough. I do hope it is more positive than you rear.
Hope / Jo - Did you make it to Centre Parcs? How was it? I do hope your pain was under control nd you enjoyed the water slides?? Have you thought of a Hickman line cos of your veins? Ive had one since feb and LOVE it! Sounds odd - but no needles is a godsend!
Sookie - you too - have you thought of a Hickman Line? My chemo is sooooo loooonnnngggg cos…I have a 9am appointment, but the Reg does not arrive till 9.30. She then has to sort her self out nd I get seen about 9.45. (If I arrive later that 9am they put others in before me!) Then they order the drugs that can take and hour or so…and so it goes on and on!! There must be a more efficient way of doing it! It is frustrating.
Hugs and smiles to you all nd hope you enjoy bonfire night. The weather looks better tomorrow than today. Pouring with rain here!
This time last year I could hardly walk and was on megga doses of morphene based painkillers cos of my spinal met. This year I have just walked round Paris and enjoyed Disney! What a contrast. I guess Im just glad to be here now and hope this contrast gives hope to some of you who are physically finding it hard at the moment!
Sadie Xx Xx
Sadie so glad you had a fubulos time… Sounds like it was just what you needed.
I had my appt with oncologist yesterday to discuss whether I will get rads or not. She kept us waiting for an hour and a half and didn’t apologise just said she was sorry i had cancer again! She thinks tumour is probably too close to radiation field but will need a CT at end of Chemo so they can see properly where I had surgery and where Iv been treated before. So still none the wiser really but I have consented to rads if I can have them. Especially as she kept going on about my margins… My surgeon said 1 margin was under 1mm but it wasn’t anything they would worry about.
She did say it was good because it was in the margin and not at the margin. So there was still less than 1mm of normal tissue but the margin is the reason she thinks I should be having rads. And although I haven’t had a full aux clearance she said I would pretty high risk of LO having a level 2 clearance.
Oh the joy!
Love to all
Evening all
Sorry haven’t been posting this week after jumping in on the site only a couple of weeks ago - but have had my daughter down from Uni for a few days which was lovely, and what with a bone scan, cat scan, chemo, blood tests and Surgeons appt (you all know the routine) it’s been a mad 10 days. Have had my second gem/carbo so next week is a week off, luckily they got a vein first time this week - so no buckets of warm water swilling about, and SO far SE’s have been minimal. Surgeon seems to want to operate a.s.a.p but I am up for discussion at next weeks MDT meeting and then see ONC next Friday- I feel a bit in between opinions at the moment.
Gingerbud thanks for your best wishes - the scans show the recurrence but otherwise ok according to my surgeon - I really hope so.
Glad to hear Paris was so good Sadie - I am off for a bit of Disney magic tomorrow when I polish my princess tiara and go and see Disney on Ice in Birmingham.
I hope you got to Centre Parcs Jo.
The chemo unit I go to differs to yours Sadie as I don’t see a doctor on that day so it is purely in, chemo, and out again.
Well still buzzing with my last steroid dose so off to find a good film to while away an hour or two.
Wishing you all a good night xx
Hi
I know that being triple neg can get a bad press but just wanted to say that at my hospitla they say that it is actually better then being hormone + cos you can’t get rid of oestogen from your bodies.
I think that it is a random thing that happens in your body at that time. x
Hi ALl
Am sorry about your nails Sandra - sounds awful.
I am so glad you enjoyed paris sadie and had a good time. Is it your spinal met that means you need the wheelchair. I too have spinal ones so know they can be so painful. I had MRI and said new lower ones but the pain has gone again so hope is the chemo as Oncologist doesnt want me having radiotherapy to lower area as where all bone marrow made.
I hope you have started treatment again rachel and sounds good to have the trial. Hope Tina something sorts for you to relieve your stress. Check out the local electrical chemotherapy as may be good for you with local disease if no other mets.
I got to center parcs and felt rought from chemo first day and then had two great days on a bike and in pool with my little boys and almost forgot my position until sharply reminded on day 4 of 5 when pain hit again for the liver. I was in a lot of pain and sevredol did not control so last 2 days spoilt and was sick all way home on motorway and into next day so not a pleasant ending to holiday. Still had nice 2 days. Morphine has not made me sick like that before but must have been with pain. Think is chemo working in liver ( hope getting rid of again ).
I am back to marsden this week for testing for androgen receptor and a protein inhibitor I think.
Found first cycle capectitabine and gem very tiring and nauseous and only had first dose not second booster week two. I start again next week.
Hope others all doing as well as can and great that we can still get away and enjoy these little breaks as you reminded us sadie.
love jo x
Hello ladies
Hope everyone is as well as can be today
Sadie and jo great to have you both back. Sadie it sounds like you had a ball Im so glad! Jo so sorry your symptoms spoiled your break somewhat but as you say, thank goodness for 2 nice days with the family xx
I’m not doing loads of personals today sorry girls but I’m not a bit well and writing from my sick bed! Dan was really poorly all last wk and Ive got it now (serves me right for still snogging him whilst he wasnt well lol!). Been in bed all day, sinuses terrible, sore throat, pounding head etc. D-day is this weds, terrified if Im honest Feel really angry that Ive just been sent away and left to deteriorate. Im just hoping and praying that things arent too far gone and the carbo works again for me…
Good luck to all with treatment this week and to those awaiting scans (rachel and rhi and anyone else too) xx
Speak soon xx
hope you feel better soon tina,its so easy to pick up these things from our little ones isnt it, i remember it well.good luck for wednesday have got everything crossed for you,had my heart scan today he was a lovely man but asked if i had an implant as my only breast is huge and rock hard so that made me smile a bit but he said heart was ok but could see lots of fluid around lungs and i have been so breathless this week so will have to see what ct shows i too am dreading it tina,love to everyone still typing with left hand so keeping posts shortish but thinking of u all hugs xxx
Thanks rachel, when do you get full ct results? Hope the travelling to+ from the christie isnt wearing you out too much. Sorry to hear about the fluid around your lungs- I know you have mentioned it before but its all pretty scary I know. Im sure your new team will have a plan in place when you see them next- Ive heard of a procedure where they put talc in the cavity to stop the fluid building up so maybe this will be an option for you? Keep us posted xx
Hi all!
Love and good luck to Rachel and Tina for scan results.
Sarah x
I’ll second that…
Hugs to all from hibernation, feel so yach!!
Sadie Xx Xx
Thanks ladies, my nerves are shot + Ive got a real sense of dread in the pit of my stomach. Mum + hubby coming with me. Will post later with news.
Love tina xx
Hi everyone
i hope you dont mind me joining your thread. Im sarah and im 31 years old. I was diagnosed with bone mets in april shortly after finishing TC chemo for hormone neg cancer. i then tried EC chemo but was taken of this as it wasnt working and a new lump appeared in reamaining breast. this has turned out to be hormone pos cancer 5/8. i am currently on xeloda chemo and managing good on this. after a few bad months of being told cancer spread to lungs ( it hadnt but was pleural effusion) my consultant wouldnt let me have mastectomy as he said it was pointless and i was too ill???. i went for my apt 2 weeks ago and he said that i can now have it done more for piece of mind. does anyone have any info on the benefits of this. im in two minds because i have two toddlers at home and feel rather selfish for wanting it done. does anyone have any words of wisdom?
hope u are all well xx
sarah
Hi Sarah, I’m sorry I can’t help, but just wanted to welcome you nd say ‘Hi’. My story is different, but I’m sure someone will be along soon who can help.
Hugs,
Sadie Xx Xx
Hi ladies
just a quick update from me. I am back on chemo next wk following progression on latest ct scan. There are multiple nodes in neck, chest+ clavical. All very tiny but more showing than last time. There is also a very small but suspicious nodule on left lung and 2 small lesions on my liver My onc insists it’s all very small etc but still very scared + upset. I’m puttin on a brave face (as ever) but naturally panicking. She thinks my breathing probs unrelated to the possible single lung met. She said it’s possible there could be some activity in my windpipe, or maybe a node/ nodes nearby ate causing some restriction. Whatever is causing it, I’m hoping the carboplatin works as well as last time.
Love to all, tina xx