Day 31. Sue gets very anxious when “forced” to leave the house. She feels uncomfortable when she has to hang around at the GP’s or hospital. Luckily everything running on time today (not the norm sadly) so 3rd lot of Epi was given ,although it took twice as long to administer because the candula was very fine compared to the PICC line she had before she insisted it got removed !!
Hopefully the 3rd session will be as comfortable as the 2nd AND I hope that the depression lifts in the next couple of weeks, I have to return to work.
Hi Wockey, I remember those days on epi a few months ago. It really saps your strength mentally and physically. The xeloda is better - not a breeze by any manner of means but much better than epi. No steroids or gcsf which I think made my moods worse.Wishing you and Sue all the best.
Rachael
Day 33. Thanks for that Rachael,you are so right what you say. Anyway,it is Sunday and day 3 of the 3rd session and sue is up early,eating and has not taken to her bed yet. We were expecting things to get worse but each session has been easier (touch wood) On the plus side,Sue is now an expert on the Olympics and is also watching football which is certainly not the norm for her…didn’t know it was a side effect of the steroids !!! 7pm and still not taken to her bed and she is still eating. She has got a cough though.
Hi Wockey
I too am on arm4 of the trial and am due my 3rd epi this Friday. I’m dreading it after being much worse after the 2nd. I can sympathise on all of your wife’s side effects. I’ve had everything from nausea (a little sickness), throat full of razor blades, swollen glands, constant oral thrush, ‘runs’ to the extreme tiredness, but the worst for me is the phsychological effect which has crept up on me. I’m a very positive person most of the time, although I’ve had some weepie days, but I’ve drawn a sort of mental comfort zone around me. I only feel comfortable seeing family and very close friends at the moment. Will not go out if it means talking to anyone I don’t know etc.
The good thing about the trial is that we’ll soon be over the epi and are so hoping that Xeloda will be much easier.
Take care
Mal x
Hiya Mal,I hope you’re right about the xeloda. Sorry to hear you’re experiencing so many side effects.Sue had terrible pains in her head after the first session and she now takes Codeine Phosphate 3 times a day for 3 or 4 days following chemo. As for the phychological problems, she is taking a very low dose of an anti-depressant but that wont kick in for a few weeks ( although it certainly helps her to sleep) Our daughter is coming down next week but she doesn’t want her partner to come because she doesn’t want to go out and she doesn’t want him to see her hairless !! They’ve been together for 7 years so he’s no stranger…and I need the male company (selfish male !!!) Take care
Hi again
When I went for my 2nd epi A woman sitting next to me started talking to me (I wasn’t really in the mood but didn’t want to be rude). She was on the same arm (4) and was sympathising over the epi side effects but she was there for her last dose of Xeloda and said how easy it had been. And her hair was growing back! I know we’re all different but even the onc said that I should find Xeloda so much easier and I’m taking him at his word.
Your wife only has one more epi so not long.
Mal x
Day 35. Official…3rd session has been ,quote “easy”, albeit not enough to lift her depression !!! Sue now worrying about the next session and she still cant cope with going out,still feeling vunerable etc. I’m off to see my consultant to get clearance to return to work following my hip replacement. Most probably will be harangued for this but after 5 weeks at home caring for sue I need work AND sue needs to start to look outside of this cancer she has and start looking after herself a bit more. “Take one day at a time” is a common quote on here and today I feel like a ME day!!!
Try not to worry too much, the chemo has affected me in the same way, I hate going out now and I was always on the go before this happened. In my case I feel everyone is looking at me knowing I wear a wig I absolutely hate it. My husband works shifts and I know that when he is at work I have to push myself to do things, maybe it will be a good thing for you to get back to work and focus on something else for a short time.
The thing which has lifted my spirit a little is that I have finished the epi and my hair has started to grow a bit. I’m half way to completion and I am looking forward to getting my life back (if it is possible) it is extremely difficult to think positive but you have to try. I always check your diary to see how Sue is coping and it helps me to understand your side of thing too.
Thank you for sharing with us.
Take care,
Liz x
Glad to be of some use Liz !!! Must admit,yesterday was a bad day personally BUT today is a different day and the sun is shining AND I will be going back to work in a few weeks and I can now drive. Sue is having a session of councelling later this week which she asked for so hopefully things will improve (head wise) before her final Epi. Take it easy one and all.
John
Day 45. To get to the hospital, Sue needs her diazapan…even though this is the final Epi session!!! Getting to each session has got worser (?) and even the offer of a slap up meal after the session was declined. As usual they were running late,which is not good when trying to prevent ones wife doing a runner !! Sue much calmer back home , and she got a Xeloda DVD to while away the weekend !! Her anxiety and vunerability still a problem, and it will be tested next week on my return to work . Hopefully,this session will be as physically easy as the last. I will keep your informed. So,lets delve into the side affects of xeloda !!
Take it easy
John
Day 46. No chemo side affects yet and a good nights sleep also. District nurse came to give the dreaded (and final) needle in the stomach. If its any help to new tact 2 patients, Sue’s side affects became minimal after the 1st session when the dosage on the 3 day course of steroids was doubled . Also, Sue has been using Ametop Gel prior to having the stomach injection. Rest of day quiet then went for an “after dark” walk.
Day 47. Sue slightly nauseous in the afternoon but we now know that eating regular small snacks combats the nausea. After being told that Epi is usually the worse of the 2 drugs and ,having had a good final 3 sessions,the pressure is on xeloda !!
take care one and all
John
Hi John,
It’s good to hear from someone other than the person themselves how breast cancer is affecting them. It’s easy to forget that I am not the only one this is about and just how worried my family and friends are. It sounds like you are doing a great job of looking after your wife, it must be incredibly draining to be in your situation.
I am in two minds as to whether to have chemo but have been offered TACT 2 so it is useful to hear Sue’s experiences.
Best of luck with going back to work.
Cassie
Hiya Cassie, my first 10 hr nightshift went OK thanks . Sue did consider not having chemo after she had a mastectomy and lymph node clearance but decided to go for it when given the percentage improvement…she was feeling brave back then !!!
You do get “spoilt” on Tact 2 and it has helped Sue not having to spend so much time at the hospital.
I’m sure you have looked into the effects of Epi and you know that it affects everyone differently; Sue has been fine on the final 3 sessions,it a case of learning from the first session.
You have a big decision to make so best of luck. I also think it’s a time to be a bit selfish because it’s happening to YOU. Take care of yourself.
John
Day 60. 3 days into xeloda and no side effects. Since my last visit Sue has gained confidence and is now venturing further although still not comfortable in crowds.
She is still taking an anti depressants which coincides with the confidence boost (25mg Amitripyline)…although the end of the dreaded Epi may also have helped.
We bought some nice white gloves and socks and some E45 which Sue puts on before bed. Hoping that this will help the hand and foot probs.
On the down side, Sue’s eyesight is not great…she sees hair growing that I cant !!!
Best wishes to you all and I now believe that there is a bit of light at the end of the tunnel. Although I’m not forgetting those black monthes not so long ago.
Take it easy
John
Hi John
So glad that Sue is ‘on the up’. Also glad to hear about Xeloda and the absence of side effects (I begin them on Friday).
It’s strange I have the same problem with my eyesight as Sue!
As for light at the end of the tunnel - great. At the moment I’m planning a holiday for next year and I couldn’t even think about the future a few weeks ago. It does get better and we’ll soon be thro’ it.
Mal
Sue has not wanted our future son-in-law to visit (they live 160 miles away) because of the hair loss, even though he’s been part of the family for over 7 years. All of a sudden its OK and we can even go up to see them. I’m real pleased because they were coming down for her birthday in 2 weeks either way !!! our son is also flying down from Scotland .
Anyway, still no probs with the Xeloda although I gather it is a poison that stays in the body quite some time so will keep you posted either way.
Good to hear you’re planning things Mal…and i’m sure you’ve got lots of hair…even though it’s invisible to others!!!
Take it easy
John
Hi John
Please keep this going as it is great for me.
I am also on Tact 2 Arm 4 but only had my 2nd epi last week.
It is giving me something to look forward to - the X-eloda.
Wish Sue all the best
Liz
Hi liz,im having my 2nd epi on friday im tact2 arm 4 also how you finding it?
hi john,also loving your diary,ive been checking to see how sues doing.
louise
Hi Louise
Apart from being very weary day 5 coping with everything else. Wig is much better than I expected and got my prosthesis today instead of cumfy so feel almost human despite chemo. There is another thread on tact 2 arm 4 that several of us are on
Liz