I don't know why some breast clinics are reluctant to carry out biopsies unless it's because they embarrass women and can be painful but NICE guidelines on investigating breast cancer make clear the triple test which includes biopsies is the only reliable way that breast cancer can be diagnosed, although it is only 99.6% or so accurate.
My own breast cancer wasn't detected despite having biopsies, it was only found when I had the lump removed.
I'm still around though as despite six months delay my cancer was found before it had spread to my lymph nodes and was still under 2 cm. I was diagnosed on 5 Dec 2003.
I was thinking in bed last night. If it seems that biopsy is the only sure way of knowing why even bother with other methods? Why do the professionals seem so reluctant to give them?
Me too. Ultrasound and mammogram showed nothing. Consultant told me it was nothing to worry about on examination too. Kept getting dismissed with antibiotics. Finally allowed a biopsy when I eventually broke down in tears and begged for one. This was despite a very strong family history.
If I may butt in:
Clinical exam + mammogram + ultrasound is NOT conclusive enough.
Only an MRI followed by core biopsy in the area IDed by the MRI found my tumour. I was "normal" on all other tests.
Both of us have used the BCC service extensively. Janine was the subject of one of your mailers earlier this year and I'm going to be featured in the January one.
tbh, my wife is a bit upset that BCC went along with the Clinical exam + mammogram + ultrasound is conclusive enough. If they had advised her to push for a biopsy, she may have done that. She has emailed the team to pass this on to advisers. Our own BC nurse at the hospital has said she will facilitate an investigation when the time is right...because their procedures need re-evaluating. It won't alter anything for my wife...but it might for other ladies!
Tina - thanks for your thoughts; the feelings are reciprocated! J will be in touch by email when she gets a moment.
so sorry to hear the news. Ur wife + I were good cyber friends throughout out primary diagnoses. We 'met' on Macmillan + kept in touch on that forum + by email. We both had young babies + were young ourselves and so had lots in common.
We lost touch a little once my situation worsened + my cancer spread last year. I didn't want to drag J down + scare her as I hoped she would recover + move forward. She did email me a few months ago to see how I was , which I thought was lovely.
Please pass on my love + best wishes + let her know I'm still here if she wants to chat. Will be keeping everything crossed that the ct scan shows no further spread. Is it possible it's a new primary? Hope that whatever it is it's treatable + curable.
Thinking of you both,
I am sorry to read about your wife's recent diagnosis, I just wanted to add that you are both welcome to call our helpline for a listening ear if you feel it would help, the number to call is 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat
First of all...apologies for not checking back on the forum. I confess that I got so scared of 'research' that I adopted a bit of a head in the sand mentality. We also put our trust in the medical professionals...and what a mistake that was!!!
My wife had a 'clear' routine mammogram in March but in June she felt a lump in her other breast. She went back to the Nottingham Breast Institute and had an ultrasound. They said they couldn't see anything and sent her away...without so much as a letter or referral to a consultant. She didn't tell me any of this because she didn't want to worry me.
In October I actually felt the lump for myself. My heart sunk instantly. She then told me what had happened and that she'd been told it was down to natural hormonal changes.
Of course I wasn't happy so we were back at the institute within days. We saw a consultant who said she was confident it was natural and another ultrasound showed nothing...but that we could have a biopsy for reassurance.
So guess what! We were called in on Tuesday and informed that it is indeed cancer. I am so annoyed and will obviously be asking for an investigation and review of practices. Knowing my wife's history and that even ultrasound AND mammogram are not conclusive, how could they neglect her like this?
We are now waiting for a CT scan on Weds with results on Thursday. Of course we are fearing and dreading the worst.
And again, I've sunk straight back into depression. I'd weaned myself off anti-depressants in spring and this time the doc has referred me for counselling.
Life is so unfair!!!!
Trouble is the OHs (only my own experience) still see rationality and practicality as we are not having to deal with both the physical and mental aspect, only the mental part. It is a bit of an adjustment to accept that control and decisions are to be shared, and only when our ladies are too ill etc to be involved can we make those decisions for you ourselves.
I like to think that we are only being annoying like that accidentally because we care about you so much and would go to the ends of the world to see you right, but I'll admit there is an element of selfishness too because if we are doing something and over-helping it makes us feel less guilty.
All the very best to you and thank you all for putting your slant on it. My wife doesn't come forward with this sort of thing very easily.
I'll have to raise my game then, as I am often spotted cooking a good spread for my wife and flowers are a fortnightly addition to the shopping/as i walk past the florist 🙂
I can see totally how the control can be taken away from the person with BC and she is incredibly independant, so it is easy to tread on her toes. We will find a compromise I am sure but it doesn't stop us OHs feeling useless and meddlesome when we can see how we think we can help :-)Though i can see that the affect can be the same as if we didn't do anything to raise a helping hand.
As if the whole thing wasn't hard enough 🙂
Off out now for a stress busting run and a wee chat with Scott!!!!
Hi Rich, I'd like to second what Choccie said: you feel so powerless that you want to hang on to any control over your life and any choices you have left. And when you're really scared and trying not to let on because you don't want the nearest and dearest to be more upset than they are, rationality has a way of flying out the window.
Rich, you need to delegate a bit more - couldn't Scott help you out? 😉
Great news on the results, that's a big positive and a weight off your minds, but more tough stuff is still to follow.
You were so right in one of your earlier posts about men often looking for practical solutions, coming up with the answers, getting on and doing things in the best engineering spirit, and I can see how that can be a potential cause for disagreement and lots of feelings of powerlessness for you. But your description of how you are with each other sounds deep and strong. Waiting is SUCH a hard thing to do, but sometimes there are times when sitting back and letting "the powers that be" get on with it is actually the quickest way to get to the end point. (Until they put the brakes on of course, in which case a bit of assertive communication keeps them on track!)
As treatment progresses you may find your lovely wife needs a bit more support to do "stuff", so if you can, step back and let her keep control of things until she needs you to take over, and be ready to relinquish control again when she's up to taking back what she sees as her role.
Nice things like unexpected treats might be welcome (the odd bunch of flowers won't do any harm, I'm sure, or could you ask her if you can cook a romantic dinner, candles, table cloth, chocolate dessert of some kind, if you're ok in the kitchen? I don't know a woman who doesn't like being treated like a princess every now and again - still have to persuade my OH of the idea!)
I think it might be because we feel so much as if control has been taken away from our lives by the disease, we don't want any more of it to be taken away from us.
Oh, I'm sure you've got a much better picture of what works for the two of you, so just ignore any of that if it doesn't fit. As for support for me, the lovely people on here are FANTASTIC! and it's that kind of emotional support that I think I value as much as people offering me lifts to places. (Though of course people saying they'll have the kids overnight while I'm having surgery is always a good thing, and very valued.) And after my first surgery (WLE and SNB) my lovely man let me stay at his house, and he just left me to sleep, occasionally interrupted by questions of whether I needed any food, drink or painkillers. Just what I needed.
Keep smiling if you can,
At last the results were good. Out of 13 lymph nodes taken this time only one had a tiny tiny amount of nasty stuff, so as far as the surgeon is concerned the source (the lump) had clear margins and the other 12 lymphs showed nothing, so it is all out. The Chemo and rads will be the crossing the t's and dotting the i's to make sure that any cells that escaped are destroyed. So hopefully that'll be the last we hear of it. Just fertility treatment because of the chemo to go before it all starts and then rads followed by Tamox. hopefully in 2 - 3 years we can look at coming off Tamox and starting a family.
Having a down day though, because yet again I fell into the trap of doing too much and organising things without consulting her first. We are having issues with the fertility treatment and i am trying to be proactive to keep things moving at the hospital. So I am now the bad man for going behind her back despite telling her what i'd done after i'd done it. Whoops!! This is a common feature and the strain in our relationship is pretty taught, but I am not used to sitting down waiting for things to happen. I can see how this can destroy relationships.
Hopefully you are getting plenty of support and don't give them too much of a hard time 🙂
Right back atcha, Rich!
I like that charity as it's a way of sticking a middle finger up at cancer and making good use of something that would otherwise be wasted, and it took a while to grow so would be a shame to just chuck it in the bin.
If I have to have chemo I might keep a little plait for myself, but the rest will be stuck in an envelope and sent on its merry way.
Losing your hair is a bit like losing some of your identity, and I know another lady on here found having her hair cut short before chemo more stressful than the thought of going bald, but seeing her picture she does look great with the new haircut.
I hope your lovely wife's results weren't too horrible, and of course that you did actually get them. The waiting is almost unbearable, and so difficult for everyone.
Big but gentle hugs to you both,
Have suggested it and she is considering it. But I think she is finding it harder to deal with as the time for chemo draws closer and closer.
Cheers for being tremendous 🙂
I don't know if this would be an idea your lovely lady would go for, but in my hunt around I discovered a charity that takes donations of long hair and makes wigs for UK children with alopecia - Little Princess Trust. If you think she'd go for the idea, take a look at http://www.littleprincesses.org.uk for details. I was very impressed.
And I'm sure Scott doesn't mind really, he's probably happy to be useful!
Wouldn't have it any other way. My wife is the most amazing gorgeous person and despite our relationship being tested to the nth degree whilst I was moving up here, I have fallen in love with her again after seeing the awesome strength she has. She is beautiful and losing her long thick mane of hair is going to be very very hard for her. I know it will upset me too but mainly because it will hurt her. But I married her for for the way she is and the looks are just an added lottery win 🙂
It is hard for all concerned and i am told by both sides that the other side has it worse. The mental and physical anguish held by the person with BC is certainly nothing to be sniffed at, but at the end of it all hopefully only the scars will be a reminder. The family/friends and spouses have the enormity of the mental anxiety because there is nothing at all we can do but watch and just be there. The hardest thing to handle is my wife trying to push me away. At first I tried to get even closer but the rejection was too course to handle. So I backed off to preserve her independance, but have taken to doing subtle yet important things that make her days run more smoothly. She doesn't necessarily realise this and I will never seek acknowledgement for it, but it fills me with worth and value knowing that i can can help in such ways. It also calms me.
We have a set of incredible family and friends and I would not be in a sane way if i had not used them as support. I am, however, tired of having occasional break downs in front of them as this is hard on them too. Hence Scott the spruce who takes all my abuse, literally standing up 🙂 I just hope I am not carted off to the funny farm for shouting at a 30 foot tree. My running times are faster and distances longer as venting anger in that way is an excellent cure for sudden emotional downturns.
I am frankly sh****g it for tomorrows results, and I am expected her to be stressed tonight, but a nice meal and a hotbath should at least take our minds of it for a couple of hours. Little battles won 😉
I am interested to know of anyone in the Edinburgh area of a similar age (35) who is in the same boat as Paul and me, as a chat over a pint and a pie is often a good cure for stress and to share with outside third parties.
All the best CM to both you and Paul, in fact to everyone who is in this boat.
Paul and Rich,
I've just read this thread and I have to say how I admire the pair of you. Thank you for being there to support your ladies. It's a really tough job and you too need some help to get through all the crap associated with this horrible disease. I just wanted to give you both a virtual hug of thanks, because you're brilliant.
I hope you are managing these days much better than you were earlier last year. I am still in the relatively early stages myself of dealing with this inconvenience to bioth our lives.
4 weeks before our wedding my, now, wife was diagnosed with grade 2 stage 1 BC. it was HER-2 negative and hormone positive, so out of a bad lot it could have been worse. The prognosis for treatment was only radiotherapy and Tamoxifin. Her first reaction was about the delay of starting a family (we are both 35 years old), my reaction was I am going to lose her and then the family issue kicked in after I rationalised the survivability issue ( athought not too far after losing 4 friends to cancer, one to BC). We were told that the Tam would be for a minimum of 2 years and no kids within that period. She would be 37/38 before we could even consider children. This blew both of us away. But she is Scottish and therefore a natural half empty glass take on situations, where-as I saw the advantage of spending the first 2 years of our marraige together being able to do what we wanted to do.
She was determined to go ahead with the wedding and put the surgery off until the week after. Having just moved cities to be with her, bought our first house together and just moved in and me starting a new career and also planning a wedding, I was already on a height. She is a difficult girl to fathom and is A-grade at stone walling emotions (she is not a teary cry at films type at all). She finds it hard to deal with and talk about emotions, whereas I am completely the opposite. As you can imagine the run up to the wedding was a stressful and emotional day as we told all the guests prior to it so that no-one would find out during the wedding and it then spoil the day. But we made the most if it and for a few hours we forgot about the whole thing. We managed a three day spa break in the lakes, but it was difficult to relax.
Prior to all this I cried a huge amount in private, sonething i haven't done for a long time. This all seemed so unfair. After 5 years we were finally getting our lives together sorted out and ready to take the plunge into family life etc. I went through the anger, denial, eotional wreck etc. This is so unfair. Could it get any worse?
She went in 5 days after the wedding for a lumpectomy and sentinel node removal. After the op she became allergic to what we thought were the painkillers and anti-inflammitory drugs. She had a burning bright red rash that lasted a week and included a rushed trip to A&E when the agony became too much for her to bear. 12 days after the op we went in for the results, she was healing well and the lump had good clear margins then WHAM !!! 2 out of the 3 nodes removed showed cancer deposits and now she had to go in again for the full lymph node clearance and chemo and rads was the only option. Our rads only treatment snowballed into seriously pushing back the time we could consider starting a family, notwithstanding that this BC was even more serious than first thought. The following day we began IVF treatment to start the process for freezing embryos, as the chemo might well destroy her fertility (another punch to the stomach). Xmas and NY were a blur and she was in for the op on the 7th Jan. Immediatley she reacted to the GA or antibiotics and went rashlike and bright red again, despite the efforts of the surgeons changing her post op meds. So now she has to go for allergy testing on top of an egg harvesting operation and before she begins chemo.........We await the results from the second op this wednesday and praying that the rest of the nodes are clear.
Now the point of this diatribe is that as you can see my wife has had a rough time of it already, and the only medical procedure I have been involved in was at the fertility treatment (details not to be shared!!! :-))I do not cope well with seeing other people in pain and it is killing me to see her go through all this and the complications on top. She is so strong and gives a could poker face when things are troubling her, so that i feel i have to match that so i can be strong for her, even though she is hurting inside. I deal with that by taking control of everything I can, and this is the error. She also likes to be in control too and this weekend we had a chat about giving her her independance back with the things she can do. And i made her promise that if she needs to she needs to give up her pride for a bit and let me help her if she is struggling. This is so hard for me as it means i am more on the side lines, however, just being there as a safty net and being 100% reliable in that regard it just what she wants and appreciates.
I have also spoken lots with the BC nurses and asked lots of questions and been proactive by pushing the doctors into bringing allergy tests forwards and keeping the fertility dept upto date whilst my wife was in hospital recovering from surgery, so they can be proactive rather than be reactive.
By the way being there as a punch bag is a tough place to be. She is scared, worried, angry, frustrated and on top of that she is a bag of raging hormones due to the fertility drugs. So to be able to take it without fighting back is a test of patience, understanding and your love. A battle i have come close to losing on numerous occasions. I have found an out of the way tree in the local country park that is the subject of my shouting, anger and ranting. You shoudl try it it is very theraputic. Getting fit again is another focus. If I am fit i am healthy and less likely to pass on something when her immune systemis down. It gives me time in the fresh air and later this year i hope to be running in a mountain marathon raising money for breast cancer care and Maggies. That way I feel like I am putting back something into the system, a worthy cause don't you think?
We also keep a diary. She doesn't open up very well face-face and I feel that I cannot vent all my emotions in a one way stream, so everyday we write down how we are feeling from physical symptoms (so we can possibly see a pattern and predict/plan our activities around them) to our concerns, rants and general mental balance. Very useful when you realise that something happened which seemed irrational at the time, but had a good reason.
I also have friends who have been through cancer treatment and give me their side of the story, but I also have friends who have been on our side of the fence and can advise or just be an ear.
It is hard to release the build up of pressure but occupying your time with positive things and achievable goals is the way ahead for me at least. Eg, my Shed project is the first step to getting the garden sorted ready for turfing and the raised herb garden to be built. There is a relatively flexible time line but the main goal is to have it done so that when the weather gets more pleasant my wife can tend to the herb garden she wants thereby giving her something to do and we can have grass to lie out on and read our books. If I fail to achieve the building of the garden she cannot do those things so i am motivated and have something occupy my mind with.
Sorry for the novel but hope some of this helps you know that there is a way for coping and you are not alone in this boat!!!
All the best
Hi Paul, I PM'd you before I read this post. Keep in touch with us to let us know how you both are coping. We all remember how lonely it can be and are here to support you both. Love Val
Sorry for the delay. I have responded to your PM.
My wife had the op and has been doing as well as can be expected in that respect. She is back on Thursday for her 2nd lot of chemo...but finding things very difficult at the moment as she is losing her hair (the bit she dreaded the most). Thankfully the sickness and tiredness weren't too dibiliating. Having 2 young children is tiring enough and in a perverse way, helped prepare her for it.
Thanks for your continuing support.
Hi Just bumping this thread up as I wondered how Brooktops wife was doing and have not seen any recdent posts.
Bydand, or Anne I should say. Just wondered how you were doing too? Any news from your end of the country? LOve Val
Please don't ever feel ashamed at having a dip it is perfectly understandable and shows what a loving caring husband you are. The pain does lessen in time and having fluid drained is a simple proceedure so advise her not to suffer but to get it drained by bc nurse. I have had two ops so far - third tomorrow to remove lumps from under my arm and always have to get fluid drained several times afterwards, it is not in the least bit painful to have done.
I am glad you are going to the QMC group it may well help to talk to people in similar position. You are right about every day being different and hope you are feeling better soon. I also think good advise about taking ad's as it should help you get through this difficult time. As advised keep slapping on the cream it really helps.
Sending you both cyber hugs. A strong relationship is such a wonderful help going through this horrid time together.
Love Anne xx
Thanks Val and Electric Landlady
On the sunburn, the consultant did say for her to slap moisturiser on and said the pain will lessen with time; she's obviously endured a lot of nerve damage. They said they'd aspirate the fluid if it got worse, but they don't think it needs it just yet; some days she says it feels hard and sore and other days like a hot water bottle.
My wife and I are obviously handling it very differently and she's not as much of a 'talker/sharer' as I am. I was leaning towards going to the group at QMC that's for cancer support...as opposed to BC. The group leader had been very supportive by e-mail and I may contact her again. To be honset, the timings of the last two meetings hadn't been good AND I'd been feeling a bit better. I dare say I'll have better days than I've been having today.
My friends (male and female) are very supportive, but there's not a lot they can say. Can anyone really??? It's hard to describe, but I feel very lonely. Although my wife has told me to share my feelings, I want to get my strength elsewhere so that I can be strong for her.
Sorry to hear your news. The last thing you should feel is ashamed about feeling depressed (although I realise this may be easier said than done). You are both going through a horrible thing and it is totally reasonable to feel depressed about it. I found I had to make a huge conscious effort not to concentrate on all the worst case scenarios. I hope if you decide to do what the health visitor has suggested, that it helps you, even if just to get through this horrible uncertain phase where you are waiting for results and to find out what will happen next.
Speaking as someone going through treatment, I have found it is easier to stay quite matter of fact about it while I have all the physical stuff to focus on. Once the physical treatment is over, I'm expecting the emotional stuff to come to the fore a lot more. Maybe the same is true for your wife. I don't think your reactions need to depend on how your wife is feeling though...you are entitled to have your own feelings about all this and they may be quite different to your wife's at any given moment, and I'm sure she understands this. My good days don't always coincide with my other half's, and vice versa. I also think it can be far harder to watch someone else going through the physical treatment, without being able to do anything practical to lessen what they are having to deal with.
(Having said all that, some practical things! re the sunburn - I have this too and found that generously applying moisturiser several times a day helped to lessen it. re the fluid if this is still a problem - I'm sure you and your wife know about having fluid build up (seroma) drained - I have had this done 3 times now and it made me feel so much better afterwards. The BI nurses won't expect your wife to just put up with the fluid if it is uncomfortable or think she is making a fuss)
Support groups aren't for everyone, but for what it's worth I can't believe anyone would think you were a "fraud" for seeking support without your wife accompanying you. I hope you continue to use this forum as long as you find it helpful.
Best of luck to you and your wife for Tuesday xx
Hi Brooktop, I am sorry things are difficult for you at the moment. I think it is sad that you feel ashamed that you have had this dip. There is no shame in accepting help at times like these and you have been puting off the antidepressants for a while now. My husband was on antidepressants when I was ill. I am pleased that you are taking your health visitors advice. Your wife may be worrying about you too so I am sure that she will be relieved that you are going to try the medication but they do take a few weeks to work. Please let us know how your wife gets on next Tuesday. Val
I've hit rock-bottom today. We went for the biopsy results yesterday and they did nothing to cheer us up. The lump was 3.5cm with pre-cancerous cells around it. Worse was that of the 20ish lymph nodes removed, half were cancerous. We have to go back next Tues to see the oncologist but have been warned that many consider her to be focussing on the negatives and will be spelling out the risks of recurrence.
Our health visitor has advised that I start on the anti-depressants and then go see the GP in a few weeks with a view to being referred for counselling. I feel ashamed that I've had this dip again because I was starting to function as normally as could be expected. I hesitate to say 'positive' because I admit to being 'glass half empty' over this because the stakes are so high.
My wife is being much stronger than I am but has definitely decided that she does not want to go to a support group - but she is going to go on the Young Womans BCC weekend at Swindon. I'd feel a fraud going to one of the support groups without her.
Thanks all. I sometimes don't know how to act, because I think I need to respond depending on how my wife feels about it and what pain she's going through from moment to moment.
She has told me that she doesn't want people continually asking her about it...because that reminds her she has cancer and she wants to try to live as normal a life as possible. Yet other times she is in obvious discomfort....she has some fluid build up which is going hard and she says that underneath her arm feels like it is sunburnt. Unfortunately, there's nothing I can do to take that away and although I've suggested she have paracetamol, she says she doesn't want to keep taking painkillers. I can only offer love and affection...but I can't do that too much as she'll feel that I'm smothering her.
I also don't want to force her to talk about her fears and feelings because she doesn't like being backed into a corner. But there's also part of me that benefits from that because I'm not getting reminders that everything isn't 'normal' (or should I say 'how they used to be'?).
Hi Brooktop - So sorry to hear about all your troubles but it's sounding very familiar. Only recently have I conquered anxiety from going through all the treatment and I feel it's that you have to be kind to yourself and patient. You're bound to be feeling helpless as you watch someone go through it all - and it isn't nice - but stay smiling when you're with her and helping her through will hopefully help you. It doesn't matter how small the gesture as long as it's kind - and you sound as if you are. I had some wonderful counselling offered to me at the very beginning which equipped me with some coping strategies and some understanding that I wasn't alone. I also listened to music and had a relaxation cd given to me which was useful at the beginning. Going for walks in the park is nice too. Hope if improves for you. Susie
Once cancer has entered your life there is no avoiding it - every news programme, every time you open the paper - it's everywhere. I think head in the sand is fine - I certainly started that way, and have gradually researched more as I've felt more under control. This is by far the worst stage, and you will cope better when the treatment is under way. But well done for coming on here and asking for help - many men wouldn't, and that is a very good sign that you will find a way through this.
At the moment I'm staying in the back bedroom because my wife only had the drain out last Friday. Now she's picked up a very bad chest infection but has started to take antibiotics and steroids which seem to be working.
I too have been avoiding reading anything because I always fear the worst. I even just looked at the Nottingham Evening Post and a story jumped out at me about a lady that had died. Perhaps foolishly I decided to read it....breast cancer...mastectomy and lymph node removal....cancer came back as a lump on the neck. Even just reading stuff likes this makes my heart stop and I feel anxious again.
Other than that, I've been adopting a 'head in the sand' attitude and trying to carry on as 'normal'. I've not taken the anti-depressants because I haven't felt I need them. That all may change next Tuesday when we go for the results of the biopsy.
I so sympathise with sleep problems. I've always been an early waker, but during treatment it has been very difficult. My onc recommend Nytol (non prescription), and I have been very surprised at how well it has worked. I only take a third of a tablet - a whole one was leaving me feeling hung over - but have managed some decent sleep during the high steroid phase, which before was impossible.
The other thing is that my OH has moved to the spare room temporarily so that when I am wakeful I can have the radio on - this definitely helps me get back to sleep, or at least doze on and off without feeling anxious that I will never get back to sleep.
My latest chemo was delayed a week - due to go in an hour (ugh) - but that meant I had a week when I had the odd glass of wine - still hated the taste but was determined to have a treat nonetheless. What a relevation - one glass of wine and a tiny speck of a sleeping pill = full 7 hours sleep! Sadly unlikely to be repeated dring chemo for me - but fine for OH's I would have thought.
Good luck Brooktop - I hope this phase will soon pass.
I am being treated at Nottingham Breast Institute too and just wanted to say that I have found them to be brilliant. They seem to have the latest everything and the most expert doctors and surgeons. My breast care nurse has been invaluable on the end of the phone (and in person) and I'm sure that your wife's breast care nurse will be happy to talk to you too if you need to. They also have a support group at which partners are welcome, although this may not be your thing.
Everyone is different but my coping strategy was NOT to read up on everything as I found this to do more harm than good - I could not stop thinking about the scarier aspects, especially in the middle of the night when I could not sleep. So in the end I stuck to just reading the leaflets they gave me and talking to the nurse. Me and my OH also found ourselves making (sometimes quite tasteless) jokes about as much of it as possible, so don't be afraid to laugh, especially if that's what your wife is doing.
Accepting help from others can be hard but is really necessary - especially with such small children. I have no children and can't imagine how hard it must be to try to keep life normal for them while dealing with everything else.
Incidentally I was prescribed Citalopram a few years ago (nothing to do with BC). At the time I was very resistant to the idea of taking antidepressants, but I did find that they cleared my mind and helped me to see the wood for the trees, and to sleep better. On the flip side, they also made me feel a bit dizzy and spaced out for a few days until my body got used to them - but not to the extent of feeling like a zombie. (I tried Kalms and rescue remedy as well,and they did absolutely nothing for me at all.)
And do keep offloading on here! There is always someone who will understand. I feel for all the partners/friends/relatives out there who are being towers of strength. Mine has been brilliant (foot massages on tap!). He too likes to analyse the situation and find a practical solution, which of course can't be done here. I have been so conscious that he has been freaking out too, and needs to have time out somehow.
Best of luck to you and your family. xxx
At the moment my wife is under no illusion how much she means to me....but she would always want me to do more round the house/with the kids 🙂
I do cook for us quite regularly though. Curries and chillis are my speciality...
Hi again Brooktop, Please keep posting on this thread to let us know how you and your lovely wife and family are doing. We are there to hold your hand and listen to your worries and concerns. Some of us are even on the site in the wee small hours if you cannot sleep! I wouldn't be so well if it wasn't for my wonderful husband. We have been together since we were 17 and have been married for almost 35 years. Our life has been difficult at times but you are right this whole thing has brought us so close together and made our marriage stronger for it. I love him so much....but he is a shy man with little words....but the small things he does for me , show me just how much he cares.....like making the evening meal if he thinks I look weary. You just need to be there for her. Try not to get ahead of yourself and take on more than you are able....as I said before....one day at a time....Val
Thanks Anne - I take all that on board and the tablets are by the side of my bed (in a drawer away from our 3.5 (going on 9!) yr old) ready to be called into action.
My wife, her mother and sister are so strong...or at least outwardly, because I know we're all going through hell on the inside.
I feel very humbled by their 'can do' attitude. They also seem to be able to continue laughing about things, yet I almost feel guilty if I laugh about anything...and I know that is wrong. Ordinarily, I've always prided myself on my counselling skills (maybe that's why I do have female friends). I'm just rubbish at taking my own advice!
I think good idea to wait to take SSRI's but don't hesitate if you really start to struggle. I have only taken Prozac once when my mum was ill and only then for 4 months but they certainly got me through a bad patch so I wouldn't knock them. I know there are women on the forum who benefit greatly from them. I only meant an occasional sleeping tablet if it gets you back into your pattern wouldn't want to take them regularly.
So hard for you all with young children but you will get there. Just take it one step at a time, you will all be amazed at how it flies by. Your wife sounds like a wonderful person and we all want to keep our lives as normal as possible, so getting up with baby is typical. Hopefuly she can nap during the day when baby sleeping but I do hope she accepts help with your other wee one when tired. Now is a time when you find out who your friends are but please, please take care of yourself. Your health is very important too. Hope you all over your gastroentetiris. Glad you feeling more positive today and hope you get more of these.
Love Anne xx
The doctor prescribed Citalopram which is an SSRI. The jury is still out on whether I start to take them. I have good days and bad days...and that includes the sleep. The previous 3 nights I'd taken Kalms and Bach's Rescue Remedy and woke up after 3 hours and then struggled to get proper sleep again. Having said that, I did have gastroenteritis and was feeling down.
Last night I slept better and was only woken by our 9 month old crying about 5am (that's good for her!). I was feeling a bit more positive last night and decided not to take anything.
My wife has tended to be the one that has gone into our youngest to calm her because:
a) she's a very light sleeper and a fly breaking wind would wake her!
b) I'm at work Mon-Fri (hope that doesn't sound sexist because I wouldn't swap for the 24/7 role of housewife)
c) Even if do wake up and try to sort Rosie, she tends to insist on taking over if the dummy insertion doesn't work immediately.
HOWEVER...all that is now going to have to change - post surgery and during chemo. So sleeping tablets aren't really an option. Even with half an amitryptelline tablet I'm a zombie until dinner time. That's why I was hoping Kalms or Rescue Remedy might help.
I think one of the things my wife is going to struggle with is accepting help from others....especially if it means overnight guests.
Just another quickie about medication. Like someone else mentioned there are many different anti depressants out there with less side effects. I, like you, don't particularly like taking tablets but if you are getting into a bad sleep pattern and it's effecting you through the day why not ask doc for a few sleeping pills just to help you get back into routine.
My husband as been absolutely wonderful throughout my journey and I am so pleased your wife has a loving partner to support her.
My poor husband is the one that always has the tears on my bad days (which are few) but when I get a chance to offload and have a wee sorry for myself cry I always feel so much better afterwards. I would not have that support without him as no-one else would do.
And try and sometimes focus on the funny side of things - I was feeling low today and read the on a brighter note thread. A laugh always helps.
All the best for future treatment and as everyone says don't be afraid to shout for help and take all you can get. My husband and I planned a lovely holiday at the end of treatment after I had a chance to recover and it was lovely to look forward to and gave us a chance to get off the planet for a while. I know that is difficult with young ones but perhaps you could start planning some treats.
Love Anne xx
Teresa's idea of off-loading your worries in writing is a good one. For me, that has been on this website. The support has been incredible and I truly do not know how I would have managed without these lovely people. Yes, they are mostly ladies who are, or have been, going through the same, but occasionally men use the site and contribute just as much. I am sure you will find it invaluable whenever a new situation arises and you want information, or to have a rant. It really is cathartic.
Try not to read too far ahead. Just take the information you need at any particular stage. Some of the stories are truly scary and, hopefully, will never be relevant in your wife's case.
Like you, my husband enjoys analysing a problem to come up with a solution, but sometimes there are no immediate solutions and just being there for each other is what is needed. I know that being the supporter can be even worse, as my Mum had bc before me and I felt so helpless at the time. As others have suggested, it is important that you look after yourself, both physically and emotionally, so that you can be there for your wife and children.
It must be incredibly difficult with small children and I hope you have lots of support from family and friends. Make sure you take advantage of it. When people offer, they really do want to help. If they don't offer, then ask. Don't feel too proud.
I wish you and your family all the best.
Love Ann x
Gosh...where do I start? Thank you SO much for all your kind words and reassurance. Being a bloke, I do try to analyse a problem, weigh up the options after research and then decide on a course of action. It's situations like this that I really struggle with because there's very little I can do regarding the outcome of it all.
I'm not an overly emotional person ordinarily, but my wife and children are the most important things in my life. 2009 was a difficult enough year: my wife was made redundant 2 months before she was due to start maternity leave and then the day after our 2nd was born she fell and dislocated her kneecap and had a small fracture. My 2 weeks paternity leave was spent looking after my wife a toddler and a newborn. That put the biggest strain on our 8 year relationship...but never to a make or break point if you know what I mean. Just the week before she found the lump, I remember feeling how happy I was that we'd come through 2009 and how blessed I felt. Little did I know...
I don't generally consider myself a 'glass half empty' person; in fact - I generally have a (possibly niaive) attitude that things work out for the best. The only good thing that I can possibly see coming out of this is that we'll be stonger/closer as a couple - as some highlight in the partners booklet (which I found useful). However, all the positive stories do give me hope and many people tell us that we're in the best hands at Nottingham's Breast Institute.
I was a bit wary about posting in a predominantly female forum and that's why I posted in the 'partners' section. I have as many female friends as male friends so discussing feelings has never been a problem for me. In some ways, my wife could be considered more 'stereo-typically butch' than me if you know what I mean. She doesn't often talk about her feelings...but it seems to be working for her through this ordeal.
Hi brooktop, my OH is ver much like you, I don´t know how long you have been together but we have been together 21yrs although never married, i´m 42yrs and my OH is 59yrs old. He has always been my brick, whatever my problem he´s always sorted it, until now! it´s not something our partners can protect us from, and I know by talking to him, this has effected him so much. Your not Superman, same as we are not Superwoman and I know with him when i was in pain, he was so frustrated and it hurt him so much this hurt me more than the pain.
Then someone suggested that we both keep daily diaries, at first I thought and he did what aload of rubbish but hey you give anything ago, so we did, and still do, it´s not for anyone else to read, not for your partner unless you want her to read it, you put all your thoughts, emotions ever feeling you have down on paper, or in our case on computer.
I don´t know why but we have both found this helps tremendously, it´s like your off-loading all the crap, but not offending anyone.
Maybe worth ago for you. Good luck, and your always welcome here. Love Teresa xxx
Dear Brooktop, I was just 39 when I was diagnosed with BC and had chemo followed by a mastectomy. It had spread to my lymph glands too. That was in 1989.....and 21 years on I am still around. My husband was wonderful when I was going through all the treatment and had to look after our 2 daughters who were 7 and 14 at the time. It wasn't until I returned to work that it finally caught up with him, all the stress and coping through that summer. But we both got through it and although it has been a difficult at times. Our daughets are now 27 and 34 and I never thought that i would be around all these years later. I just wanted to give you a wee bit of hope that there are people who survive the disease and go on to have many years together. One day at a time is what I always say.... If I can help in any way...just ask. love Val
I admire your courage to come onto a website that is used predominately by women. You will find lots of help from this site.
I've had to use every coping strategy I could find as my breast cancer was 4 years misdiagnosed. Basically, my GP was incompetent and I'm actively taking things further. I've had to cope with a late diagnosis + the pitfalls that come with it which haven't been easy.
I haven't really got one answer for you because we are all different but my advice to you would be to try everything and find out what you feel suits you best. In other words, experiment. I've tried counselling, clinical psychology, anti-depressants, EFT (emotional freedom therapy), NLP, healing, support groups, meditation, yoga, and a whole load of other weird and wonderful stuff which I sometimes didn't understand. I've found great strength in support groups, listening to healing music, meditation and yoga. I used to read a lot and, for me,knowledge is power. I'm not reading so much these days but I do find being a selective reader helpful.
You may also like to know that when my cancer was found it had reached stage 3b. The cancer was in 15 of my lymph glands. I can remember my oncologist saying it was almost at my collar bone. Whilst this was very frightening for me, I have survived 5 years with good health and to date I'm not aware of any cancer. I had an appointment with my oncologist yesterday and all is well.
I wish you and your wife well.
I hope you don't mind me chimimg in.
I was diagnosed nearly 2 years ago and I think it's harder for those watching/on the outside than on those actually going thro' it. I was very close to my dad who had cancer/chemo etc the year before my diagnosis. I found that unbelievably hard and had panic attacks etc etc. I really couldn't cope with it. Six months later I was diagnosed. I coped but my hubby found it very hard. It's harder to see someone you love going through this than it is to go through it yourself.
Just give your wife time and love and you can do no more. My hubby (for example) has given me a back massage every night for the last two years - that to me is true love! (Not everyone's idea I'm sure)Whatever makes your wife happy and more comfortable is the order of the day and you'll soon be 'on the other side'. Sometimes I wonder if it really happened to me!
As well as the support you are receiving from the other forum users you may find it helpful to read the BCC booklet 'in it together'. This booklet has been designed specifically for partners of people diagnosed with breast cancer and has information on the emotional and physical effects. If you would like a copy or to read this on line just follow this link:
I hope you find this helpful.
Sam (BCC Facilitator)
First of all, I want to say how sorry I am about your wife. There is no good time to have cancer, but having very young children to cope with must be extremely hard for you both.
There is a vast difference between being anxious and worried about your wife, which is understandable, and being clinically depressed. Anxiety and depression often go hand in hand and if you are clinically depressed, you need proper treatment. Kalms and the Bachs remedies are OK if you are a bit jittery before an exam etc but won't touch depression. The treatment protocol for people with moderate to severe depression is antidepressants with a talking therapy such as cognitive behaviour therapy or counselling. Your doctor has prescribed a tricyclic antidepressant which have far more side effects than the newer SSRI antidepressants which wont make you tired. It would be really much better to go back to the GP, tell him about the meds he has given you and try something else. Now is not the time to be stoical and try to fight off depression without help.
Thanks to you both. I realise that people have different coping strategies and my wife is patently a stronger person than me. I do like to talk to others (especially those that can empathise rather than just sympathise), whereas my wife tends to put on a brave face.
My mother tends to take tablets whenever possible, but I prefer NOT to if there is an alternative. The reason I didn't take what the GP prescribed was for a number of reasons:
1. I had one the first night and I was dreadful. Although the side effects warning did say that it would get worse before it got better, I know it was largely because I was fearing the worst.
2. If they do affect my reasoning etc, then I may be less of a support to my wife.
I'm not saying I won't take them, but for now, I'm trying to manage without. I was hoping the Kalms and Rescue Remedy (that my mum sent me!) might at least help me get a decent night's sleep...but no joy!
I know everyone's journey is different, but when I hear people say "Luckily...it wasn't in my lymphs...' or that cancer tends to be more aggressive in younger women, the more dark thoughts plague me.
My mood swings from hour to hour - never mind day to day.
We were the complete opposite to Meggy! We have found that taking a day/a step at a time is really the only way for us to cope happily. We deal with problems when and if they arise-reading about all sorts of terrors/failed treatments/ghastly side effects, seemed to us to be counterproductive, and wasteful of time which could be more usefully harnessed to staying as well as possible-both physically and emotionally. I don't think this means we live our lives in denial (not that this would be an option with my secondary diagnosis)-rather it keeps us focussed on the part of the treatment/illness which needs our attention at any given point.
Neither my hubby nor myself has needed counselling nor anti depressants. But many find both very useful, so I would urge you to take the medication prescribed-if only for the short term, as you will have a lot to do in the next few weeks so your wife can recover as quickly as possible. Incidentally, the surgery itself is not as painful/limiting as it may sound. I had a mastectomy on a Thursday-and was helping prepare Sunday lunch a few days later! She will however, have to be careful about lifting (or should I say, "not lifting"), the baby. Best wishes to you both.