Evening Ladies. Sorry for my absence, been no stop over past few days. Had radiation planning meeting wire round breast and ball bearings stuck in place so would show up, they now have their measurements and I’m no longer a tattoo virgin ?. Radiation starts 26th November for 4 weeks as I’m having a weeks boost apparently. Went to oncologist who said I’m better than I was but still swollen and red. So put me down for scan on leg for blood clot/dvt. Just ready to leave hospital with blood thinners and get called back and said they wanted to do it that day. Long story but no dvt or clot they reckon it just my veins and the side effects of chemo causing the redness and swelling. Chemo is going a head tomorrow at the reduced dose of 60% apparently I can get away without it as I have had the full 100% on doses up to yet but want too just to be sure. Fingers crossed both treatments should be done by the Friday just before Christmas. On a happier note we have also been to church 
to see about the dates available and if the O/H can wing his way back here pretty sharpish, tonight we are going to book the church ??? and reception venue. Something nice to do before Halloween ? chemo session and finally ringing the bell ? for my last one xxxx
Just sat reading the latest post while waiting for O/H. We are having the best of luck at the moment, Georgie Gee, I hope your stay at hotel ? NHS is not too mind numbing and that you sort out your treatment plan as you want it. I don’t know about swinging from the rope thing after the chemo tomorrow but I can nick some of the step sons camo gear and rock up in that? Hair is very GI Jane at the moment for all of us so very fitting. Randomly have “we are in the army now” singing in my head ?. I hope everyone’s side effect are getting better? How’s the numbness, feet, swollen throats and drains and op sites? I too have had the cancer survey thing, which I won’t be completely just yet, a few q&a’s with the hospital first. Got to shoot off for now ladies, be back later, got to go see a ??? about ringing a bell ? ?? ?. Xx
Hi RedRose, so good to hear you sounding upbeat and things progressjng nicely. What is the wire and ball bearings for? Didnt know about that!! And excellent to hear the wedding planning is in full swjng that is wonderful and something exciting to look forward to. I look like a GI Jane so will suit a tank, ill watch for you swinging in too.
Ktk … Oh i have a while to put up with the numb pit then… Oh well hopefully it will feel better once tth drain comes out?? How did your first Rads go? How many weeks do you have?
Hi Kip, the wire was to highlight the target ? area of the left breast while in the CT machine and the ball bearings were taped to where they did the tattoos to highlight these areas. I was gonna joke and say that the maintenance man had them left over when fiddling with the machine and gave them me to use as stress balls ? but thought it may be too much. Church and venue all booked for the wedding ? eeeek! Going to try and get a reasonable nights sleep as last chemo tomorrow, but may be difficult as excited and body is cold and head having a hot flush. Goodnight all xx
KTK how was the first rads? Georgie hope your ok. Numbness does sound great Kip but their out, are you in pain? Xx
Red Rose very excited for you. Something lovely to look forward to.
First rads ok. They remarked the ratios with pen. No ball bearings for me! Actually I found the procedure a bit intimidating. After chemo which is so communal with lots going on and people to talk to this was very lonely. Just the two radiographers getting you into position then they leave you and you get a disembodied voice instructing you to breathe. They said the first session is the longest. Back again this afternoon. Kxx
Hi,
Has anyone finished chemo and got a very salty taste still? I finished 8 weeks ago.
I asked my oncologist re proton therapy as was considering it instead of radio as causes less damage to your body. She said that its not prooved to work for breast cancer and only things tried and tested are used by the NHS so that put me off. There is one at the Rutherford Group www.therutherford.co.uk n south Wales. I have contact details if you would like them as my friend discussed my case with them. You can google them too. They offer therapy for breast cancer. The private cost is circa £50k but no waiting time, price could be negotiated if not fully utilised?? Its £200 for a consultation. Its 4 tiles the strength of the Czech facility so less treatment time is neede. Hope that helps.
Linda
KTK - glad first one done. Yes I guess its a very different process being stuck alone in a machine, I like to be around people and chatting so I may feel the same too. I hated being in the MRI machine with nobody to talk to.
RedRose - crikey ball bearings taped to you… wow… wonder what I will get? Fingers crossed for the last chemo… yayayyyy thats a fab feeling, just ride out the SEs and then move on. Good news about the wedding, thats definately something to focus on! Hope you slept well.
The proton therapy sounds interesting, shame its not suitable for BC, but there are always hopes for the future hey. Thanks for the information though.
Im still attached to my drain, hoping tomorrow might be the day we part company. Still stiff, but not too bad, bit sore underneath and the numbness makes me feel weird under the arm but musn’t grumble.
GeorgieGee - are you ready to be rescued?
Kip
xx
Hi Reddi, good to hear from you. Seems you have a lot of decisions to make too. Sorry only had straight forward MX, no nipple to save unfortuantely, but well worth discussion if you can save and swap. Sorry to hear the SEs are bugging you, is it T? If so, I found the SEs varied each cycle (with exception of the lardy mouth which was there everytime). But glad to say, 5 weeks post chemo, everything fading, now just dealing with the ANC op SEs instead.
Hear’s hoping you get some good answers from your surgeon. I find I see one person for a couple of appoitments and then never see them again. I have an appointment on Friday to have dressing removed/changed and its a lucky dip who I will see. I saw one surgeon to discuss my ANC and then when I went into hopsital found the surgeon I had wasn’t her at all… pick n mix at Ipswich I think. At least the ONC has remained the same, although I have only seen her 3 times I think (only twice throughout chemo too).
Kip
xx
Hi Reddi. I felt dreadful after T3. Onc had suggested that he could reduce the dose but I said to hit me with the full dose. I have only really felt better this week, four weeks post chemo.
I am on 15 + 4 booster sessions. I’m moisturising like mad!!
I had TM on both sides. They cut off my nipples and stuck them back on!! They look ok, and there is some sensation although not the same as before.
Hope everyone is well and that Georgie has escaped and is enjoying birthday celebrations ? Kx
That is so interesting CDC and so impressive that you will get to speak out about this issue. I am sure when I had my initial mamograme and then subsequent U/S and biopsy the doctor said that due to my age my breasts were dense and they couldn’t see anything on the U/S. Its one of the things I will be asking about as/when I get to a point of discussing future check ups.
Sorry to hear the SEs are plaguing you again, but good it isnt the nausea. Those steroids are devils aren’t they and it does start to feel like this journey is never ending. I am so fed up of the drain being in, still no sign of it leaving any time soon and its makign me feel like a patient too. Im at the hospital tomorrow for the dressing check so hoping that can advise on whether this is normal to be draining so much still. Just another thing to worry about.
Reddi - Sounds like you had a nightare day waiting around and then the needle thing… grrrr. I had 2 lots of chemo using the vein under the thumb… painful!!! And I got a big bruise there too. Is the ice on your hands helping with the neuropathy? My tingle thumb is still a bit tingly but I think it is coming back to life slowly, I still get pins n needles going through my hand occasionaly though. But now I have a numb armpit and arm to deal with so focusing on that sensation now.
KTK - good that the rads are going well, what are you using to moisturise?
Kip
xx
CDC - sorry I wanted to add that I think intimacy is last on a lot of our lists… my husband is still not keen to see my scars, especially now I have a drain in tow! I think thats something we need to work on once treatment is over and I can start to feel like a woman again… still look in the mirror and don’t recognise myself (facially or bodily)… In fact hubby has been sleeping down stairs since this last operation as he is scared he will pull out the drain by accident… I think on the whole he is very squeemish…and must say double bed to myself is rather nice but a big lonely.
Ooh… just got the post and I’ve received my NHS survey to fill in…something to pass the time
xx
Red rose ???brilliant news everything booked for wedding ???it’ll come round before you know it now 
Kip, after my op, I got my oh over his fear of love iking at me by asking him to just check something out, it made him feel useful and like the protector again if that makes sense? Worked for us so thought I’d share with you ???
Shi xx
Thanks ladies for being open about your (lack of) intimacy with your OH’s. We’ve had little too since March but I read a book by a lady who had had BC and she and her partner seemed to be at it loads which left me feeling like it was just me, or us as OH hasn’t been interested either. Like you say chemo is not sexy, surgery is uncomfortable and having rads now isn’t putting us in the mood either. I was overjoyed to find out lack of sex drive is a SE of Tamoxifen too! It does make me wonder how we will ever get back to a ‘normal’ sex life. X
Oh ladies, seems we are all lacking in the bedroom department. Not suprising really, a bald head, no eye lashes and tingley fingers and toes doesn’t exactly scream “love goddess” does it! Actually I am feeling particullarly unattractive at the moment, hate how I look, mainly due to the weight gain. I’m off out tonight with some friends and have been trying to find something to wear in my wardrobe which (a) I can fit in to and actually do up and (b) covers up the drain! Having virtually failed on all fronts I braved the scales and really depressed myself with my 2 stone weight gain… can’t even do up any of my winter coats. I know in the scheme of things this shouldn’t matter but I am so annoyed with myself for letting it get this way, although I know I haven’t exactly been in the dieting exercising frame of mind lately. In all honesty I keep saying I will address it when treatment is done and I can exercise properly again but I feel so fed up with not feeling like me… grrr Note to self… must step away from the biscuit tin… Rant over… only self to blame… fruit bowl you and I must become friends again!
Reddi - sounds like you had a productive meeting… lots to mull over and fully understand why OH opted out… my hubby is very much “English stiff upper lip” and would have died of embarrassment.
Kip
xx
Kip,
With with my first op I went to the shops with my drain in my coat pocket. 
That was a good look.
I must be lucky in that my weight hasn’t changed at all thru this bar the 1-2kg fluctuations that I’ve always had. My husband has had a good look at my scars, they don’t bother him but I was already nipple-less since 2006 since the first cancer so it’s just an extension of that really. And now that chemo has finished normal service has more or less resumed in the bedroom department.
Good evening everyone,
Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.
I am just getting my head around it all, and have been catching up with rest today at home.
When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter. We ordered pizza as requested, and enjoyed our afternoon.
As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether. I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward. She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body’s reaction. I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T. I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca.
I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy.
I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured. With an incomplete chemo course, I am also more of the opinion that I need to have RT. I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.
I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you. My surgery has been completed, and I do not have to consider reconstruction or anything.
It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital.
Bye for now
Georgie Gee xxx
Hi Georgie,
Glad you have finally got home and enjoyed your pizza.
Re stopping the chemo and only having radiotherapy, that’s all I had 1st time round. My cancer didn’t come back so don’t worry on that score. I got a separate different, unrelated cancer second time. I also had left sided radiotherapy and there was never really that much said about heart damage because it was angled rather than pointing straight at the heart area. I was told any damage would be minimal, to less than that of a light smoker if I remember rightly. 12 years on and I’ve never had any heart issues.
Hi Ladies, thanks for the kind words yesterday regarding weight etc… would definately welcome some support in the New Year! Bring it on… for now just trying to rein in the eating…
Georgie Gee - so glad you managed to escape the hospital and got to have pizza with your daughter… not what you planned but lovely nonetheless. Regarding the stopping of chemo… I think you have to go with your ONC, it makes sense that given all you’ve been through with the last chemos, it is doing you more harm than good and the rads will blast at the area too. Although we moan about the Oncologists sometimes, they are the experts and ultimatey want what is best. That said, if you don’t feel happy with that decision don’t be frightened to say so. Take care and rest up, and enjoy the fact that chemo is in the past, get your strength back up for the next part of the journey.
Reddi - I am now baldish, eyelash less and have a leaky drain to add to the sexual goddess look…oh I’m hot to trot now :smileylol:
Kip
xx
I discussed proto therapy yesterday when I got my results etc. He said radiotherapy will be fine for me. The Marsden are getting a machine next year too. My right side was affected. Anyway just to let you know my good news I got clear margins due to my amazing surgeon. My response to chemo was good. It killed 9 out of 10 cancer cells so makes the last 6 months or so worthwhile!
I need to wait for another fish test but unlikely to be positive. I now need to wait for my oncology appointment on 4th december to duscuss radio and letrozole.
Awaiting a call re finally getting my picc line removed as it needs doing locally as they have all the mesurements. Has anyone had theirs removed as I go to the nurse rather than the hospital so altho she can do it on Monday I want to make sure it’s done by someone who has all the measurements. It can snap so want to ensure it’s all removed.
X