Hello,my wife had a mastectomy 5 weeks ago ( invasive,2 lumps) and then was told that her lynph nodes were clear. She was advised to have chemo because it would give her an extra 10% on top of the 60% chance that it would not return (hope i have got that right !!) Anyway, she joined the tact 2 trial and has had her first horrendous session of epirubicin (her words) At the moment she is also taking diazipan and her doctor has today prescribed sleeping pills and she is down to 7st 10lbs…you can imagine the sort of days/nights we are having at the moment !! On May 1st my wife was a 9 stone mega fit women who hadn’t seen a GP for 27 years (she is 56). Now she is a quivering wreck who is dreading next weeks 2nd session and who spends too much time crying about this THING that she has got. Whats the point of going for the extra 10% when you are going to come out the other end with a body & mind that may never fully recover. I want my wife back. I was going to put all this to one of the cancer nurses but I only got an answer machine so thought i’d ask “the experts”
Hi,
I am on the TACT2 trial and just had my 4th epi on Tuesday, so not feeling brilliant but ok, as in no pain and not been sick. My lymph nodes are clear but only had one lump so did not have a mastectomy. I am really sorry to hear that she is not well clearly, but this could be for a number of reasons. firstly she might need the drugs reducing as it is based on weight and height so the dose might be too high. Have you contacted your BCn if her symptoms were every severe or taken her to the GP for something to help reduce them. Many people have to change their anti-sickness drugs and are obviously much better then for the next doses. I had 8 prescriptions to take home on the first one, does that compare to what you ere given? Some people are not getting so much support. Also things may have moved so quickly that she has not even come to terms with the mastectomy and may need a different type of support to deal with it. She may still be coming to terms with having cancer. I do have to really go to town in my good bits to remember why I am going through this at all. So you could maybe think what you have all done since she got brighter, feeling drugged up afterwards would definitely make me feel worse as you won’t feel the epi passing. I drink like crazy on the day of treatment and next day, to get rid of it and you can see from when the colour of your urine changes back to normal. I aim to get mine back the first night or you can get bladder infections.
Finally I think maybe you need to get her on this forum because she may just feel totally on her own and need to talk to us. Hearing it second hand is not letting us hear how she feels so she is not downloading her feelings. It is the feeling that someone understands that I found most helpful. I know you are doing your best and she is fortunate to have you but the first step might be her searching for help herself. Hope this of some use.
Good luck and tell her we want to hear from her
Lily
Hello Wockey
Ive had 5 sessions of epi now and cry at each one it makes you feel so awful. My partner has to put up with me crying, not eating, lying in bed for days, looking dreadful, wishing I didnt have to have it, vomiting but it does pass.
Mine is to gain an extra 2% and that means a lot to me. She is grieving and she has to do that at some stage to move on and feel better and more in control about it all. All you can do is be there. You wont have the answers and she knows that but you’ll both come out the other end much stronger having been throught it. You obviously love her and dont want to see her upset and poorly.
It has taken ages to get my antisickness tablets sorted as well. Phone youre GP or the chemo nurses on the ward as they can change them.
Take care of each other.
Lyn x
I can so sympathise with your wife. Like others say it is a grieving process. I too am 56 and before all this dx Feb 08 also thought I was very fit for my age. I have also had a mastectomy with no talk of reconstruction and now I look at my body and see only mutilation but am told by others I have to be grateful as they have cut the cancer out. Whilst I have so far not had the debilitating sickness I have had other very stressful symptoms and so far little support in sorting them. Others on here seem to get lots of support and lots of different tablets to counteract the effects. I have only had anti sickness which thankfully seem to work if you start taking them almost immediately the chemo has been administered I find. As you will read elsewhere on here the advice given is conflicting. Some nurses/onc say one thing some another. Which is little help to the patient at the other end. Equally at some hospitals counselling/alternative therapies are readily available at others not at all and left to the sick patient to organise and pay for themselves.
In my case I try to organise trips out to the beach etc as treats for my good days to have something other than cancer to look forward too.
We cannot complain about the help we have recieved from all involved and she has had her meds adjusted to ,hopefully,make things easier on her 2nd course. My wife openly admits to being a poor patient/wimp (her words)…the last time she had a needle was 28 years ago,and that was an epidural !!! She isn’t a “fighter” by nature which doesn’t help at the moment. Unlike some we have no financial problems nor does she have to work (6 monthes sick pay) so she “only” has this THING to deal with. My main concern is, will she come through the treatment scarred for life (depression,unable to sleep etc) and will she return to her normal fighting weight. Many thanks for the support,sadly my wife is a bit of a technophobe and may just skin me alive for coming on here BUT I will get her to read this thread when she in one of her rare responsive moods !! She does need to speak to people in a similar posion IMHO.
Hi there
Hope your wife won’t skin you alive!
I am a 59 year old non fighting ‘wimp’ who’s had breast cancer for nearly 5 years now. I had a poor prognosis at diagnosis and still surpirse myself that I did chemo first time round for something like 5% chance of better survival stats. I have a vomiting phobia and was lucky in that I was never sick on AC chemo (similar to epirubicin). In the end I did 6 cycles of AC and then another 4 cycles of taxotere. I was then in remission for two and half years and got an incurable regional recurrence and have had four different lots of chemo in the last year and now face having to dceide whether to do more. I get utterly exhausted and brian dead and depressed on chemo. Goodness I hope I am not sounding like a brave bore…all I can say is that its only by giving myself permission NOT to do any more chemo that somehow I have been able cycle after cycle to continue.
I think there’s enormous pressure to do ALL the treatments at whatever the costs…and sometines I think for some people taking all the treatment isn’t right for them.
I have been a quivering wreck many times over the last five years…I haven’'t got any good advice except to say that however bad I’ve felt at times…and bad I have like cut my throat end it all now kind of bad…always this far I have come back and had good days and good times.
Like many people with bc I’ve puit on weight through treatments so sorry to hear your wife is losing weight. She’s ll probably put it back on after treatment finishes.
Please tell your wife not to burden herself by thinking she has to ‘fight’ cancer or be specially brave or ‘positive’…as the Amercians say…cancer sucks…but mainly we find a way of living with it…stink as it all does.
very best wishes
Jane
Hi Wockey
I’m sorry to read about your wife. As well as the support you are receiving from the forum users you may find it helpful to talk to one of our trained members of staff on the BCC helpline. Here you will be able to share your worries and concerns and they are able to offer you support and advice as well as a listening ear. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I hope you find this helpful.
Kind regards
Sam
BCC Facilitator
Hi Wockey
your poor wife does sound really down but it is so hard to be positive (something everyone is always telling you to be!) when you feel like shit. I am also in my fifties and feel as if my life has be hi-jacked from me but I have to go through all this (no alternative) in order to get a life back it may not be exactly the same but it doesn’t have to be that different. I find it is very hard to feel mentally o.k. when I feel physically bad (actually it is impossible) so when your wife is feeling better physically and she will do our bodies really want to heal themselves given time she will feel better mentally. She must be gentle with herself and not beat herself up for being a poor patient, we all are afterall who wants to be one, just tell her to listen to her body and get plenty of fluids inside her and rest when she wants. My daughter told me to think like a child as a child does not think about yesterday and does not think about tomorrow but only the present (may not be too good when she feels bad) and like a child if she wants to have a paddy then let her have one. She is not alone in this crap and we do feel sorry for ourselves but we are not going through this alone and with your support she will get through it. Good luck to you both and hang on in there.
love Bevy
Hey wockey
Chemo is so brutal it feels almost barbaric sometimes, especially when it wipes out your immune system and leaves you feeling like a trashed version of the human being you were the week before. The only upside to it is that it does the same, no worse to any lingering cancer cells that may have got past the lymph nodes.
I struggled with the idea of doing chemo because it does seem so extreme and I’m not one for drugs, painkillers or anything like that. Before I was diagnosed back in January I hadn’t taken a pain killer in over 10 years, sure I had the occasional headache etc but preferred a hot bath to a paracetemol if you know what I mean.
I don’t know if this will help you and your wife but my and my fiance are actively planning what we’re going to do to make me a healthy and happy person at the end of all this and just doing what were told (mostly) and bidding our time until then. I am going out walking with the dog almost everyday, some days further than others and I’ve found that really helps improve my mood, and sometimes my energy levels too, sometimes not but I’ve stopped expecting too much and trying to enjoy the good bits as much as possible so when she does have a godo day try asking her where she’d like to go and take a little drive somewhere, or a little walk.
We’re making a point of going to see a movie at the end of every 3 week cycle, something stupid or funny. Wall-E was the last one and we did laugh. Rubbish to the think positive thing, think what you like but laughter really does help I’ve found.
Good luck getting to the end of treatment and then I hope you both have a long and happy life together.
Angie
xXx (half way through max dose of Fec)
Wife read the thread and ended up in floods of tears…“why cant I be stronger”…“cant face the pain” etc etc Took herself off to bed at 8pm and spent 3 hrs crying !!! Had a DVD and a bottle of Red which never got used and my Plan A didn’t work (getting her to read about other people with similar problems)
Plan B was put into action. I told her in my bestest hard voice that she didn’t have breast cancer and that she had decided to take a precautionary course of Chemo just in case AND that she needed to show her family that she had a bit of fight in her . Anyway,she took herself off to the spare room for the night !!
Anyway, she got up,had a bath and took herself off for a walk this morning. I prayer that some clarity arrives because if she does have the 2nd course of treatment,hairloss will come into play (can she still lose her hair after one course ??) On the other hand, Thursday will arrive and she wont go !!! HELLLLPPPPP
You seem to be flailing around trying to impose reason on one of the least reasonable things anyone can face.I think Plan B was possibly a big mistake and convinced her that you had no idea what she was going through.I suggest not talking about it any more and treating her to some special time.A drive and a picnic maybe or a shopping trip.Ultimately she has to decide herself and trying to force the decision wont help at all.You could say ok if you choose not to have it we will go to the appt and talk it through with someone there.It is in the end her cancer,her life and her decision.Vx
Horace is right, there is no reason behind the feelings you get… have you ever had the flu? Do you recall how it feels when you’ve just totally run out of energy but there’s nothing you can do to fix how you feel but wait… it’s torture but it’s all you can do, well it’s a bit like that I reckon.
So try and make her feel better but accept that you might not be able to. You may just have to wait it out with her. I don’t know how she’s reacting in detail and how it’s making her feel none of us can answer that one and maybe it is too much. But then again I’ve seen a few people feel like giving up the chemo on here and feeling differently when the time for the next dose comes as they realise that after 3 weeks they are nearly themselves again and know that the side effects do pass.
She should certainly talk to the nurses about the side effects though, because we’re all different we all have different needs and sometimes the first time round the drugs aren’t the right ones, there may be others that allow her to do the next dose and not repeat the suffering.
actually you say she had the op only 5 weeks ago, yikes she is going through it fast. To give you an idea there was 12 weeks between my op and the chemo and I needed all of it in my opinion, I recovered a lot in that time and it’s now 7 months since my diagnosis and it’s only really in the last month that I’ve been able to think about other things in life again. Before it was like ever thought ended with Whumppph… did I mention Cancer?
It’s really early days, really early, she’ll get there in the end, just be patient.
I can see that you are trying your umost best to help your wife, but unfortunately as others have said rationalising/planning etc deosn’t always work. Sometimes you just have to roll with the punches and take it a day/an hour at a time.
Everyone developes thier own coping mechnisms. With me (like some others) silly videos/magasines and some treats worked. This is not to trivilaise the situation, but if a good movie helped to prop me up for an hour or two, I couldn’t see the harm. The treats etc may be where you could help - some will be appreciated, some rejected (I was pretty mean to my partner a few times when he was just trying to help) but you never know what may work till you try. Short walks and drives also were good.
If your wife still feels quite desperate, a quiet private chat with her BCN may help, or even counselling.
In the end its her decision. None of us felt we were being brave or strong, it was just that we decided that we would give it a try and take it one step at a time. Knowing that I could drop out made me feel less trapped, so in the end I made it through the whole course.
Sarah
Hi wookey and wife
I still remember how helpless I felt after diagnosis. I had cancer and it all seemed hopeless.I went to bed thinking of cancer, woke up thinking the same. Cried, hated everone who didnt have cancer. I watched a lot of DVDS as well. The whole 4 series of Doc Martin in a week Im a lot more calm now. Not due to Doc Martin!
She will work throught it. It might take days or weeks or months but she will get there. She wont think so at the moment. You unfortunatley cant speed up her progress but you must not take it to heart any rejection to youre plans. Youre going to need extra big shoulders.
Lyn x
Hi,
I think I can see how it might have gone wrong possibly. she read the posts of people trying to explain how they had overcome it, reply and support emails. These are all answers to cries for help and make us sound invinsible, putting her even lower down. She needs to get down into words her own cry for help. Showing her some of the threads that others have put up saying how they feel at the start might give more empathy with how she feels right now.
Think if there is someone in her life who can pull her out of it, don’t take offence if it is not you for this one thing though
Good luck
Like your wife my treatment started really early I only had my surgery 4 weeks ago and have had one session of chemo. I feel as if I am going through a grieving period in that I am grieving for the person I was and have to come to terms with who I am now and the journey I have to go through. I have tried going out but at the present time I only feel safe when I am in my own home. I had a fragile day yesterday, don’t know why, but it took very little to set me off crying and then today I have been out in the garden doing some gardening albiet nowhere near as energetically as I use to. We all need time to go through the process all I can relate it to is as if there is a feeling of despair and grief and that has to be worked through. Just try to let it be and let her do what she wants and just be there to do whatever that is. It is a difficult time for you both but just be gentle on yourselves and if your wife needs to retreat into her home for security just let her do that until she is ready to go one step further.
Thinking of you both.
Bevy x
Many thanks for the wise words of advise,all have been taken on board. My wife actually took herself off this morning for a walk which actually turned into a bit of retail therapy and she has been much better today. She also bought some pre-syringe stuff because she didn’t enjoy the “day after” needle she has after the epi. so she is possibly looking ahead to thursday. We shall speak to the nurse although the oncologist has lowered her meds after the horrendous “burning in the head” she experienced after the 1st session . Once again, many thanks.
Hi wokey,
my hubby found this site for me 4 years ago, I hadnt worked a computer since 1986 and at that time I never agreed with it . It never typed what I wanted it to and when I spent hours putting things down they got lost. Ian would log on for me and I would read the posts for some reason I wanted to reply Ian would do this but alter the odd word so it never felt like me speaking we would have a row I would sulk a bit.
Anyhow now I am mates with his laptop do my own posts. Not as good as some but I am improving.
Breast cancer and technology in your 50s no its not easy.
Retail therapy priceless.
Love Debsxxx
Hi Wokey,
I highly recommend a trip to a Maggie’s centre for both you and your wife. This is precicely what they are here for. It will give you both a chance to speak to people who understand every aspect of treatment and also offer practible help on diet, meds and alternative therapies which can really help the mind. And it is the mind, that can help to mend the body.
I am no new age hippy believe me but I know they will help you both.
Best of luck to you both,
Gillian