You just stay on that cloud Karen. You deserve to be there xxxx
Congrats karen lovely news.
Thanks for all your wishes. came out of hospital today. White bloods droppe3d to 0.7 today and yesterday but as they now seem stable have let me home on condition I stay at home for few days and keep taking temp regularly
They gonna give me emnd for next cycle and also the neulasta injection
having portacath fitted on Tues. I have had 6 lots of blood taken from my poor hand since Sat and am in agony bruised and battered!!!
CHEZZA!!! Lovely to have you back. Portacath is the way to go cos bruised and battered isn’t an option (know how you feel though). Very good that they’ve got stuff sorted for next time. I was admitted after my first one last time and had neulasta as a matter of course for the rest of the treatment and had no further problems. So glad you’re home and hope you can chill a little now xx
Cheers Tamsin. How are your SE???
Piggsytrotter how long did your diarreah last as mine wont bloody go away despite the immodium. I feel well though and only going bout twice a day but its a persistant so and so!
hiMHz jj.s , so glad your back chezz, , hope your all ok today and the ladies that are up today are feeling less worried now they have actually started treatment, I was doing just fine… Then this morning just like a de ja vu from last week got another out of the blue letter for yet another scan, this time abdomen ,waiting for a call back from BCN , to see if she can shed any light on this one. At the moment I feel sick and like my head is being messed with, one minute all clear then they want to look at something else, I know I ought to be grateful they are taking such care, and I am… It such this one day fine and next something else to worry about, I thought my mental health was strong but right now feeling very fragile, sorry to whinge on, but needed to vent I think. Lynda
hi jj,s so glad your back chezz, , hope your all ok today and the ladies that are up today are feeling less worried now they have actually started treatment, I was doing just fine… Then this morning just like a de ja vu from last week got another out of the blue letter for yet another scan, this time abdomen ,waiting for a call back from BCN , to see if she can shed any light on this one. At the moment I feel sick and like my head is being messed with, one minute all clear then they want to look at something else, I know I ought to be grateful they are taking such care, and I am… It such this one day fine and next something else to worry about, I thought my mental health was strong but right now feeling very fragile, sorry to whinge on, but needed to vent I think. Lynda
you are mentally strong Lynda. This thing not only stretches us to our full physical capacity but also is mental torture also. Call them again and ask them what the rationale is for the scan.
I feel for you so much. As Chezza says, this thing tortures us mentally as well as physically - but your mental strength will bring you through. Get on the phone to the BCN and ask what information she has - if at least you can be proactive then that will help. I feel for you so much with the goal posts being changed weekly and just want you to know that we’re all rooting for you. Let us know if you get any info. xx
Hi chezza. Posted on Maisies, but feeling better today. Not much energy, but OK. Fingers crossed it continues. You look after yourself xx
Karen…congratulations!!! /having something to look forward to is a must i think going through all this xxxx
Hi Julie
how are you now as I know you suffered with your first too? have you had second cycle yet and if so are they gonna change your meds so not as bad this time round??
Hi Guys,
Welcome back Chezza and well done Karen. Keep your chin up Lynda we’re all behind you!
Went to see the onc yesterday pre #2 tomorrow afternoon. Looks like emend is the drug to be on now lol, pity we all had t =o suffer a shitty #1 to get it, he has also given me lansoprazole to ward off the indigestion lets hope it works!
Good look to those of you in the chair today the rest of you take it easy
Lots of love xx
Hi Lynda I’m over from August thread, just come home from a lovely lunch with my mum down the marina and there was a letter for appt for bone scan which I have been assured was not required. After some major panicking and phoning around found out that gp had requested it ages ago when I was having a meltdown, phoned bcn and she’s just got back to me wires got crossed somewhere and scan now not required, stress or what. Keep chasing it Hun to put your mind at rest. I’m sure they want to finish us off with worry its cheaper than chemo. Hope it’s all ok do they realise what these tests do to us!!! Goodluck I’m sure it will be fine though x
Hi ladies, well BCN got back to me and she hasn’t got a clue as to why they want another scan of abdomen, she checked all my results from ct and said all showed clear apart from suspected liver cyst, which has now been confirmed. So all seems a bit of a mystery at present, she did say would phone around to try to find out, but prob will be tomorrow before she gets back to me, got onc app Friday so will hopefully find out then exactly whats going on, thanks so much for your comments , it helps so much to get other opinions, and had to smile at lols comment on finishing us off cos it’s cheaper than chemo, love to you all for your continuing support. Lynda x
Hi chezzap, am waiting for the hospital to call me back, also rang the helpline today regarding chemo and all the se’s I had, my 2nd dose is due next wed 14th, but ive been struggling with the decision to continue. I am hoping to see someone at oncology to discuss facts/figures/statistics that i was never given at the start and then take it from there.
love julie xxxx
HI JJ’s
Debs I was given those for heartburn too, they were little miracle workers and I have been given enough to take the day before #3 next week to see if that stops it!
Kat, dear me you have been through the mill, as have you Chezz…hats off to both of you lovey ladies. It is a huge fear of mine to be hospitalised so can only imagine how scared all of you have been. Chezz glad you getting the neulasta it has been great for me but top up on the pain meds as it knocks me for 6 for 18-24 hours but that is my only SE. I agree that it is a shame its a case of wait and see how sh*t it gets before we are given something to help.
I guess because we are all getting different se’s and to differing degrees they cant help all at once. I also have been given the emend from #1 but last time they asked if it hadn’t worked there was something else but I haven’t needed anything and also didnt want to tempt fate.
It’s been a lovely day up here in the NE today, took my OH’s aunt out for a walk today. She was admitted to hospital on 25th March 2013 (day before my dx) with a fractured skull so she has been recovering too. So the pair of us walked along the sea front and then I took her to Sainsbury’s shopping. All in all it was 3 1/2 hours out and I was glad of my sofa when I got in this afternoon. My legs feel tired and they were yesterday too but it is not suprising after all I never seem to bloody stop. My OH is away for his annual boys beano to Blackpool (punk festival) otherwise known as a 5 day p*ss up ha ha. Looking forward to the bed to myself and the remote but not looking forward to having sole responsibility for the boy and the mad dog ha ha. Prior to #1 we thought he might have to cancel so it is great that I am well enough to be left on my own. I thought I would be scared but it does feel like “normal” life again and I have to say thank fek for that!!!
Lynda, I just wanted to say that I too had every scan, test and mri (twice) and I too felt that it was terrifying but someone said to me it must be SO reassuring that they are ruling out everything so that when your treatment is finished you can be sure that everything was clear. I must admit initially I wanted to punch them and say your kidding, I am terrified of my own shadow but now I can say it does give me peace of mind so hopefully you will get to that place too. It doesnt stop the wobbles but it does help maintain a level of positivity.
I have my 2nd counselling session on Friday, I am looking forward to that as I am struggling emotionally with how I not only look but also how my body has changed and sometimes find it hard to “believe” that my OH only see’s me and not the bald, one boobed unsexy girl who used to be “me”. He has said from day one that the mastectomy or scar/scars would not matter to him and also said the same about no hair but I have changed beyond recognition and in fairness to him he has been as he said he would be (luckily) but I don’t understand that…does that make sense to anyone else?
Cancer took over every part of our lives, conversations and existance for 2/3 months and it’s only in the past month that we dont speak about cancer or chemo every day (I and I am sure he does think about it) but no longer is it the only topic but the fall out from that needs to go somewhere; how do you all feel?
Karen
x
FEC-T cycle 1 fec - day13
Good evening fellow JJs. I’ve had another good day, long walk with daisydog this morning, lovely lunch with friend, an hour or so deadheading in garden and now cuddling on sofa with daisy whilst waiting for OH to get home from piano lesson. And still over a week until next sesh. I am so lucky and really feel for those who are suffering from horrible SEs.
Nazgirl, CONGRATULATIONS. Lovely to hear some happy news. Gorgeous ring. Personally I feel hair is essential on a wedding day lol! You will look beautiful and feminine on your wedding day, cos that’s what love does. x
Chezapp, what a time you’ve had. Welcome back. Line is definitely the way forward. I’m still not entirely back to normal but not had Imodium for 36 hours. It started 6 days ago but didn’t take imm until Sun.
Pollyanne, it’s one thing after another. Poor you, your nerves must be shredded. At least you’ve got good BCN on the case.
Debsalicious, good luck for tomorrow. Hope the new medication does the trick.
Juliemb, hope you get some answers that will allow you to make an informed decision. Not carrying on is the big one and you need to do what’s best for your current well being as well as your future. I don’t envy you having to make the choice.
Have a good evening all, and good luck eveyone with apps and visits to the bar tomorrow. xx
Hi Junkies
Naz your OH will love you MORE now than before as he sees the strong woman and mother you are and will righfully so be so in awe of how you are managing to keep things as normal as possible for your boy. I too have huge body issues now. I was always the " my body is a temple" and flaunted myself in bikinis etc and I now feel unattractive and unfeminine. I cant ever imagine wearing a bikini ever again. I honestly still think Id feel better with having other one off too as its seeing the difference that upsets me so much and cos Im 34G wearing a bra and comfie starts aching after about half an hour. Are you gonna have recon after this is over??? Im really torn and dont know what to do
Julie as Piggsy says you take your time and make an informed decision. If they are able to minimise the SE for next time Id say try and stick at it as magnus Magnusson said Ive started so ill finish but of course its a hugely personal decision and everyone will support you no matter what you decide.
Lynda hope you feeling little calmer that comment from lols made me chuckle too
Thanks again for all your warm wishes
who is stepping up tomorrow???
Nazgirl, posts crossed. To be honest I’m not worrying about the future, about whether it will come back or whether it will get me. Despite the horrible surgery, the every day discomfort from the expander, and the picc line I’m finding it hard to believe I’Ve got cancer. Because apart from a couple of days this cycle i don’t feel ill and haven’t done since the diagnosis. In fact I’ve never felt better. So I’m just going along with what they’re telling me and although I don’t like it, I’m pretty accepting.
My darling OH and I did spend an intense month talking about it when I wasfirst diagnosed, and we’ve talked aboutreconstruction, but we’re living our lives pretty much as we normally do. I’m sure that will alter as I move through the cycles and the se’s increase, or change but I’m very lucky so far. From the beginning he said it doesn’t mafter what you look like, it’s you I love and he’s never wavered. Not for a nano second. And unclothed it’s not a pretty sight. Mostly I avoid looking at myself, but that’s not so easy in the bathroom as there a big fixed mirror above the basin. I’ve still got hair, so clothed don’t look that different yet. I have lost weight so have opposite problem to you. At 63 I’m starting to look a bit stringy, but I’m sure I can plump up without too much effort lol!
Idon’t do much inward looking, and mostly live my life in the moment so all in all i’m doing pretty well. But as I say, at The moment I feel well and don’t look very different on the outside. We’ll see … Xx
Ah Piggys your post makes so much sense and I too am and have been since diagnosis been well. In fact my friends have commented that I have never looked healthier or happier - a bit of a reality check I think in that I can see clearer in my life than I ever have before. It’s not that I am on a downer per se about my body image or my image in total it is just so different from who I was in that mirror. I do feel that we as a family have benefited from this experience if that is not the most ridiculous comment ever but it has given us a perspective that perhaps we didnt have before.
Since dx and through both cycles I have had, I have been out of action for around 8 days in total which is pretty damn good considering that includes 2 op’s and 2 cycles so I am very strong as you say Chezz it is just I have been in “right lets kick it’s backside” mode from day 1 and that has not changed but I think perhaps I haven’t acknowledged that I have had cancer either Piggys as by the time I got my head around having it, they had taken it away!
I too have lost weight, a mix of walking almost every day since I got my drain out and maintaining the healthy eating from the portions I had in hospital so I am happy with that but I do feel “not pretty” right now so think that is making me feel ugly fat heffer lol. I have had an expander put in Chezz, I have had 3 fill up’s including the original at theatre so whilst I say one boob that is not strictly true. In a bra, in clothes and looking down I don’t look or feel any different however face on it is half a boob or less and yet it has changed me from a large b/ small c on my natural boob to my new one being a large c/small d which is mad! My plastic surgeon is going to lift the other one to match at some point in the future and I also have the joy of the tattoo nipple to come (I did ask for OH’s initials but they were having none of it ha ha). My scaring is already minimal so she has done an amazing job it is just so different from the other one that it sometimes still takes my breath away!
Anyways, thanks for your replies, it is good to know that on many levels I am not alone in this so thank you all
Karen
x x
you are doing so well Naz wish I had your inner strength. Did you have a pig mesh strattice with the expander? Ive been reading about them but not commonly used yet