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Partner with breast cancer
Tue, 10/01/2012 - 13:54
#1
Hi all, I am totally new to this and am slightly struggling. My partner has received 2 sessions of chemo so far and it breaks my heart to see her going through this. We have a further 6 to do every 3 weeks. Friends and family are great, but often you have to be strong in front of them.. how do others in similar situations manage?
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I've just registered here as I too am struggling with being the partner of someone with breast cancer. I have no words of wisdom for you but have seen my partner go through her chemotherapy, 6 sessions, and then radiotherapy, 3 weeks and she is now having herceptin every 3 weeks and will do so until September! All I can say is that you will get through it. For us it was a grind. And that's what we do, we grind through the days and weeks.
I managed fairly well early on, she was diagnosed last January, but as time has gone on it has sucked all of the life out of me. It is difficult because obviously the person with cancer who is undergoing treatment is the one really suffering and there is a feeling of guilt for me if I have any negative thoughts/feelings. Perhaps you feel the same? As you said "...you have to be strong in front of [others]". I think it is common for partners to take on this role and neglect their own feelings. I am trying to be more honest with myself and anyone who asks now but am absolutely worn out by it all.
I would say that if you have friends you must talk to them about how you feel.
Good luck!
Hi Ital71 and theloner.com, welcome to the BCC forums
I am posting a link to the BCC 'In it together ' publication which has been written for partners of those diagnosed with breast cancer, I hope you find this helpful:
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/it-together-partners-people-breast-cancer-bcc120
Oue helpliners are also here to offer you further support and information, they can also talk to you about our one to one support service which you can read more about here:
http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support
Best wishes
Lucy
Hugs to both of you, and thank you for being such caring partners. There are a few other partners who post from time to time who will probably be along to say hello.
The disease doesn't only affect the person with the tumour, it blows holes in the entire family. Those of us who have it worry about our families as much as they worry about us. That ends up with everyone trying to "be strong" for everyone else, when what would bring most relief is admitting our fears to each other, having a hug, and a cry, and another hug, and then a laugh, with the shared understanding making us stronger even when we have stopped trying to "be strong".
Best wishes to both of you (and to any other partners who might be reading but not posting).
CM
x
Hi Ital71 and theloner.com
I went through what you are both going through now and it is a difficult situation for partners as you do not know what to do for the best.
I kept everything bottled up if im honest and tried to deal with it all on my own but I can tell you from experience that you cant do it. I did come on this forum eventually but by then the damage to our relationship was severe and we eventually drifted apart and are no longer together. I hope that at some point in the future that will change once we have both had space.
So the good thing for you both is you have taken a good step by coming on here and you can be as open and honest with everyone and if you want to vent your frustration then do it on here rather than with family or your partner.
Couple of good books to read that may help you understand things a bit better "Say Blah To Cancer" and "Breast Cancer Husband". Again I read them far too late but they will give you an undestanding of what your OH is going through and some of the thought processes and emotions that may come out.
I have also asked the site if they would consider having a "live chat" for partners etc once in a while as I think that would help people as well.
Give me a shout if I can help in any way.
Paul
Hi and thanks to those of you who have posted for your kind thoughts.
I don't want to hijack Ital71's thread but did want to comment on homerboy's post. My partner and I have had some humdinging arguments this last year as we take our frustrations out on each other. We have been within a hairsbreadth of splitting up to be honest but are hanging on in there. I don't think you should underestimate the undercurrents and ripples that living with cancer creates. For me I am here to chat and express my feelings which I haven't been able to do previously. So I guess I should start my own thread...back to you Ital71.
Hi theloner
You are correct, it does put a huge strain on relationships. As I mentioned for me it was unfortunately too late and the relationship broke down. We had some humdingers of rows to as the frustration got the better of both of us.
You have done the right thing by coming on here. take your frustrations out on here and rant as much as you want and you will be in a far better place then to deal with your OH.
I found I became very angry as well. not at anyone in particular but just at the cancer itself.
Maybe one thing you could do is book a weekend away when your OH is due to finish her treatment. That way at least you both have a goal to aim at?
Thinking about the weekend away thing, I suggest you take a look at the calendar and see if you can do a gentle weekend DURING chemo, on her "good" week which is usually the third week after treatment. By the time she gets to the end it might be just too much and she might be a bit too knackered to enjoy it. Me and OH had a lovely weekend after FEC3 or 4 and it was just what I needed to give me the boost to get through the rest of it.
Hi everyone, another BC Husband here. We are rather further trough, with my wife having completed treatment nearly a year ago now.
I think Chemo was one of the worst bits - taking someone for a treatment that will make them feel crap.
Trying to make the most of her good days.
I don't know about you guys, but we have two young boys. That just added to the challenges. At diagnosis they were three and seven.
The plus side - I think I am closer to the boys now. Having periods where I was getting them up, ready and to school as she was not well enough, then bringing them home afterwards. At least works were flexible with me!
Paul,
Tired, tired, tired. If I didn't have enough on my mind work is absolutely manic at the moment! Anyway, we do intend to have a holiday after everything has finished but as that's probably next year it's a bit of a way off. During Chemo we did have a week in Cornwall but that wasn't a success as she was too ill to enjoy it. With hindsight a week was probably too much but we were desparate to do something/anything, the trouble is cancer goes everywhere you go. We are having another attempt in a few weeks time, this time two nights in a hotel with the aim of doing absolutely nothing except eat, drink and sleep. Fingers crossed that we get something out of this. She is mostly positive in that she wants to do stuff and be as normal as possible but the downside is that it's very stressful and tiring.
@LargerBloke. Think I know what you mean about your boys, a challenge yes but also a distraction and a chance to get closer. I have a son of 10 but he lives with his mother as we are separated. I do not see him as much as I would like which adds to my stress.
Ital71, are you coming back to tell us how you are getting on?
Weekends are good, expect little and any extra is a bonus.
I know what you mean about being unable to escape it.
You don't say what chemp regime she is on. If you are going to have different regimes, it may be worth looking at a weekend just before the change. That way you are dealing with something that while crap, at that point you will better know what effect to expect when, and realistically when she may be more able to enjoy.
My wife was 3*EC then 3*TAX. The EC mainly made her nauseous, and the impact was pretty quick - the peak started around 12 hours after treatment. The effects from TAX were mainly about three days after the treatment, so a weekend planned for day three after the first dose would have been disappointing.
It is tiring, and you want to look like you are coping to your OH, and you really don't want her to feel she is being a burden.
Paul.
My stock answer to "How are you?" is usually, "Yeah, I'm fine" when I'm far from it.
To answer your question my OH has just, today, had her sixth dose of herceptin out of eighteen. She's already had six sessions of chemo and three weeks of radio. Herceptin has been described as Baby Chemo which is pretty much what it is. Eighteen sessions equates to 54 weeks of course so it's a bit of a long haul.
We lost her daughter-in-law to Cervical Cancer in November 2010, aged 29, and she was diagnosed in February 2011 so it's been a double whammy for her and her son.
What a life eh?
Indeed
I also know the line about being OK only too well.
My wife's cancer was triple negative, which means no herceptin, Tamoxifen or whatever to help restrict recurrence, but it does mean a line under treatment much sooner.
Paul.
Well, the original poster hasn't got back to us yet. Any other partners out there want to join us?
Hi Largerbloke/The Loner
My OH was also Triple Negative and whilst there treatment concludes sooner I think there is also the worry that it is more agressive nad not controlable by steroids etc?
Paul
Hi Paul. In the words of our Oncolgist, Triple negative gets a bad rap.
Overall, I think it works around evens.
On the down side, it has a reputation for being more aggressive, and there are fewer long term treatments to help control it.
On the plus side, it tends to be more responsive to chemo, and you get a line under treatment sooner. Some ladies have treatment that lasts up to five years. One can also feel a little less guilt about the use of hormone based contraceptives, or whether or not one has had children.
We must always remember that the information freely available to us (especially on the internet) is a little out of date, and that treatments and approaches are constantly being improved and refined.
Paul.
Hi all
Just signing in to what looks to be a potential partners' gathering. Never posted on the forums before, but I read them daily and keep up with my wife and friends' shared experiences.
Were halfway through her 3xFEC 3xT regime, after which she'll get a month off then three weeks of radiotherapy. She was diagnosed in August '11, MX September and started chemo in November.
We've got three boys (10, 8 & 5) and my work are being great about giving me whatever time I need, but family are all many miles away and - yes - I'm just starting to flag a little. Chrtistmas was particularly sh*t and if I never have to another "how's things?" enquiry with my usual line of meaningless wiffle then it won't be a day too soon...
r.
Hi paul
Yes you are completely right.
I have tried to assure my OH about this but she is still scared senseless. I think that is one of the reasons that we split up as she is terrified and thinks about nothing else.
Paul
I can understand the fear. The scary bit for me is the realisation the the fear may never totally go away.
It is particularly awkward at times like Christmas. As I say, we are a little further on than you guys. My wife had surgery 23rd December 2010. Christmas was a little subdued that year
Paul.
So do all you guys have deep and meaningful conversations about cancer and what if? We talk about it but it's mostly practical stuff and trying to be positive, I think we're now in a bit of a rut with it but it's difficult to know what else to do? You live the life you can under the circumstances. Occasionally when things get a bit fraught she breaks down and wishes that she could die 'now' to get it all over and done with. Of course, she could live to be hundred. We just don't know. Hopefully in a year, with Herceptin behind us, she can begin to recover and we'll get our lives back. Hope you lot do too.
Rarely deep, sometimes meaningful. My reserves of positivity are severely depleted, however, and I'm getting less adept at masking my annoyance when she dives off into another bout of beating-self-up over the 'why me?' business, blaming anything from too much red wine to insufficient consumption of salad. 7cm IDC/DCIT 11/16 nodes incl. apical plus extranodal spread; it's a shi**y picture which, of course, you *have* to spin positively, but five months on from DX I'm realising this is only the very start of a longhaul trip.
Discussions with my wife have been mainly practical. Mainly around what/when, arrangements for care for the boys (both sets of grandparents are reasonably local so helped out hugely). As I am a techie, I tend to follow the medical talk better than my wife, and often went over it later. I think I also managed to detach a little and thus listen better - I definitely heard more as my wife sometimes switched off a little when she got overwhelmed with info.
The deep meaningful stuff has been here, as I don't want her to think I am worried too much. It is only a year on I have mentioned when I was most scared. My wife opted for chemo first then surgery. One of the chemos has a risk of causing heart failure. As she was getting ready for surgery she was tiring quickly, swollen legs, out of breath easily. Basically the symptoms of CHF. The side effects of one of the steroids used were also similar, and she had just had six months of reduced physical activity as she was on chemo. I was seriously worried abut how she would cope with surgery.
Fortunately, she has been very matter of fact about it, with no obvious bouts of self pity.
Hi Gent's,
First of all I would like to express my deepest empathies to you all for your unfortunate circumstances, and I send you huge hugs for all the support that you have and continue to provide to us ladies.
Secondly I would like to apologise for crashing this thread, it's jut that I'm not entirely sure where to post this topic to be honest, so I'm hoping you can shed some light on my question of 'what support partners entitled to through their employers, if any at all?'.
My partner and I are in a bit of a unique and unfortunate set of circumstances as I am 28 years old, we have one daughter 16 months old and I am currently 27 weeks pregnant with our second child and I was diagnosed on 12 January this year.
So far my employers have been excellent, but my partner's employer seems to operate a 'one rule for one, and one rule for another' policy when it comes to dealing with people thrust into our situation. His collegue for example was permitted to take whatever time he needed to help his wife through therapy without the need to pay it back to the company even though his wife was his only dependant to take care of (as the kids had all moved out), whilst my partner has to work back the hours when he is not in the office whilst caring for me and our children. This to me seems very unfair...
Again, so sorry for crashing this thread...
Lorna
Hi Lorna,
You haven't crashed the thread, you've revived it! You raise a very good point about what, if any, support partners get from employers. It probably does vary from employer to employer and, I'm not surprised, even within companies. There are some rights for employees who 'care' for others such as being able to request flexible working whether hours of work or being able to work from home for example. At the moment I have an informal agreement with my line manager that means I am able to leave work earlier by adjusting my hours. It may be in the future that I might need to arrange/request something more formal but the current arrangement works for now. Your partner would also be entitled to request flexible working but the employer is not obliged to agree it if it doesn't suit their operational needs. Unfortunately the "one rule for one and another rule for another" is all too common. Often managers are given local discretion as to how they operate and inevitably this leads to unfair situations. If your partners company is large and has a HR department he could talk them about what his options are perhaps. Is he a member of a trade union? If so they could advise. If your partner is getting stressed, and who wouldn't, it might be worth him going to his GP and getting signed off. I have done this when I needed to be around when my partner was in hospital.
Might be worth talking to McMillan! They give very good advice.
Hopefully some others will be along with further advice>
The very best of luck to you and your family
Lorna, I'm in the mood for handing out electronic hugs this evening, and it seems as if you could do with some. The helpline might be able to help, so give them a ring in the morning. Also your BCN might be able to suggest some practical support.
Good luck, and repeated thanks to you lovely chaps for being their for your loved ones.
CM
x
Hi Lorna
I was diagnosed in October. My husband was advised to go to the doctor and get signed off with depression due to the stress of caring for me. He was signed off for 6 weeks in total which helped as I got an infection from the operation and had to have skin grafts.
maybe he could chat to his doctor, my husbands was very understanding and is work encouraged him to go to the doctors
hope it gets sorted for you.
To all you partners writing on here we are lucky that you are all understanding. hope all goes well with your partners treatment
xx
Hi theloner.com, summer20 and ChoccieMuffin,
Thanks for the advice and support from you all, it's very kind and much appreciated
x
I don't know about you ladies and gents but I find thinking about the logistics of the entire situation to be worse than thinking about the treatment at the moment (I'll be starting Chemo in a week or two, no date yet! so I guess my feelings could change by then, lol).
Thanks for the advice from you all about getting signed off, ordinarily something I wouldn't advocate, but if you can get no support through anybody else, then I think it's definately worth a shot! My partner and I certainly wouldn't have though of that!
My partner has a meeting with his trade union this morning, so I'm very much hoping that they will be able to get him the same treatment as his colleagues received in their hours of need! and if not I'll suggest the 'getting signed off scenario' and see how that sits with him.
Hopefully it'll be good news from the Union, but I'll keep you all posted with any development that could be of benefit to the lovely caring partners
Hugs to you all,
Lorna xx
So anyway, here we are on our weekend away. Partner in bed asleep and I'm watching match of the day. Herceptin side effects have meant she hasn't got a lot out of this weekend. A nice hotel and good food doesn't mean a lot if you don't feel well. We've agreed not to do this again until she's finished treatment and is feeling better. Feel old, tired and lonely...
Good luck everyone.
Just as important as the weekend away is the care that you've shown in wanting to do something to make her feel special.
So you enjoy your football, and I hope you'll both enjoy someone else doing the washing up. It's not the sort of weekend away that you might have had 6 months ago, but the little things like someone else changing the bed and hoovering up the crumbs can be very relaxing.
You can also have a think about where you might want to go and what you might want to do for your next little jaunt. If a weekend is a bit much, then just a little day trip can lift the spirits. If you're not too far from the seaside, take a drive down there, have fish and chips, a walk on the beach if your OH is feeling up to it, or just sit in the car or on a folding chair and watch the waves. then come home again.
Little pleasures.
How I agree with you choccie muffin about the little pleasures in life. Certainly, in my situation, I don't need grand gestures all the time just the feeling that I'm loved and thought about.
Currently going through second chemo with herceptin and pamidronate so some days are not very good and then my OH comes in from work with a little gesture like a bar of choc , a magazine or even a takeaway so I don't have to think about dinner and suddenly the sun is shining again. To feel loved is the most important feeling when living with this horrible illness and to know that there is somebody by your side willing you on and not letting you give up when the dark clouds descend is a really good feel factor.
Now the sun is shining here so just going out for a walk with my OH holding my hand every step of the way.
How blessed am I.
Liz x
ChoccieMuffin and NannieSpiky, I know what you mean about enjoying the little things etc and we will continue to do that as best we can. I wrote that last message from within the hotel room, we're back home now, and was probably feeling a bit sorry for myself. I found myself reflecting on how it would have been before all this kicked off. We had a leisurely drive home today and stopped at a pub for sunday lunch which was nice. We did agree that all said and done it was just about worth it to go away but that second, and even third, thoughts might be taken before we do it again! Speaking for myself I seem to have entered a kind of twilight zone whereby I am feeling very disconnected from life and am finding it very hard to enjoy anything at the moment.