Struggling Newbie, My Wife has BC

Friends and family Supporting someone with breast cancer
1

Struggling here. It, as they say came as a bolt out of the blue. It has completely shattered me. The problem is there are lots of support groups out, but not it seems for the other half. I have managed to get my wife into 2, which she is looking forward to, but men are banned. I know that there are telephone groups out there, fine if you can talk on the telephone. I have a stammer and TPs to me are useless.
Still at the moment Fanny is taking it well, better than I am. I am finding supporting her very difficult. We are still in the early stages, treatment has not yet started, but I am the eternal pessimist. All the tests have been done, crunch point is Monday when we find out the extent, but I think its a big lump, so not good. Although the BC nurse is making all the right noises.

I have never been a mixer so I suppose that will not help much. I do have a good boss, but I know people say its ok, but I nearly embarrased myself and had to leave her office. I do not suppose working in a school helps too much.

I know that I am not the only one out there, there are thousands of us, but I just feel so alone at the moment. Do not even know why I am writing this, but I do feel better for it. No I am not after sympathy, I could not cope with it anyway.

But if anybody knows of a group I could contact to meett others in the Luton, Bedford or MK area it would be well received.

Thanks very much for reading this.

2

Hi Javron, I don’t know of any support groups for men but I am sure someone will be along soon to offer you some advice. When I was diagnosed my husband went along and still does to all my appointments doctors and hospital, chemo and rads, he has been my rock, without him I don’t know what I would do. Just him being there is everything to me. I can remember him saying to me at the begining I don’t know what to say, what can you say but be their for your wife. It is not always doom and gloom, at first when it hits you it is a scary place, but when treatment starts it is like a whirlwind. Take care and keep coming on this site someone usually has some advice for us. junieliz

3

Hi Javron,
My OH just tried to keep normal, but did lots more for me!! nags when i do too much, cuddles when I cried, came to appointments cos i couldnt remember anything!! he was just there which as junieliz says is so important!
I know he found it hard as I’m sure every husband does and there doesnt seem to be the support out there, but other husbands have posted on here so maybe they will reply.
but do come on here there are lots of people to listen and it helps to share!
love Debs xx

4

Hi Javron,

So sorry about your wife’s diagnosis. It’s difficult to know what to say really other than to express some empathy. My wife, Janet, was diagnosed last June, had a mastectomy in July (on her birthday) and is about to have the last of 8 chemo cycles next Tuesday. I was, as they say, in a very dark place in the early weeks and months - I certainly took the news far worse then she seemed to. I feel a lot better now after a bit of time has passed and we are still here together, but I don’t think I will ever stop being scared of losing her.

Like you, I am not very gregarious - quite introvert in fact. I have found, though, that it is better not to think just of me supporting her and her being supported, but rather to think of us going through this together, supporting each other. I have tried to be involved completely in the whole thing, finding out as much information as I can, being there at all the consultations, chemo sessions, etc, asking questions, writing down questions to ask beforehand, taking notes, etc. All of this not as a representative nor as a carer, but as one half of a couple going through a horrible experience. I have found it necessary to be assertive at times as well, both with others, and at least once with Janet, when she was going through hell with the first cycle of Docetaxel (though not everyone does).

Support is difficult at times, but I think we just have to follow our instincts. It sounds corny, but I keep coming back in my mind to the words of an old song “just love her, simply love her”. She needs to know that, whatever happens to her, she is still the loveliest, most wonderful person in the World. (That’s not too difficult because it’s true, of course.) Apart from that, it is practical things - doing stuff without being asked to is really important.

To help me through it personally, I have been keeping a blog throughout the whole thing and you can find that in my profile on here. You may be able to identify with some of the things I talked about there, and please feel free to PM me (send me a private message here) if you want.

When we got the pathology report after Janet’s mastectomy, things weren’t quite as bad as we had previously thought (tumour was much smaller than thought and no more nodes than the 2 we already knew about). I do hope you and Fanny have the same experience.

By the way, you should read the BCC publication “In it together.” You can get a PDF on the web site.

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Dear javron,

Here is a link to the publication which jansman mentioned

breastcancercare.org.uk/healthcare-professionals/publications/health-and-wellbeing/*/changeTemplate/PublicationDisplay/publicationId/15/

I hope this is helpful for you.

Very best wishes

Janet
BCC Facilitator

6

Posted on behalf of new user Martin

Hi Javron,
It seems like an eternity since I went through what you’re going through now, although it’s only two years past October.
Unfortunately for us, Jane’s diagnosis only came to light as a result of her appendicitis which meant that the cancer had spread from the primary site thereby rendering a “cure” impossible. Totally out of the blue, no warning and suddenly bang! Have some of this.
We have a bit in common. I’m not a great mixer, have a small circle of friends and I’m more than happy to spend my time with my wife and family. I’ve been described as quite aloof, but that’s not a bad thing in my books.
Nothing I can say here can really reflect my feelings over since the diagnosis as they’ve gone from one end of the spectrum to the other. I would certainly concur with the advice you’ve been given so far. However, there is one piece of advice I would like to give. forget about all the “what ifs”, ” what will I do without her?” , “What if they tell us this?” etc and concentrate on today.
It’s taken me a long time to realize it, but worrying about what “could” happen just adds to the misery and puts you in a frame of mind where it’s not only harder for you to support your wife, but it also makes it harder for you to support yourself. The latter part is equally as important as the former and it’s only by keeping yourself strong that you’ll be in the best position to support your wife. Take each day as it comes and deal with whatever happens, as it happens. You can’t change what’s going to happen tomorrow.
Jane has survived well on hormone therapy until recently but has now had to start chemotherapy. So just when we were getting to grips with things, it’s “here we go again!!” However, I’m better prepared for it this time and don’t get as emotional as I used to. I am determined to be strong for her as she’s obviously got enough on her plate without having to worry about how I’m feeling.
I wish you both well for tomorrow and hope the news is not as bad as you fear.

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Javron,I hope the news is as good as can be tomorrow and that you both feel better once you get a treatment plan.Its usually easier when you get started on treatment.
Love n hugs
Dot
xxx

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Hi Javron

I think Jansman hit the nail on the head when he said think of this as going through it together. I used to smile to myself when I heard my OH talking to other people about “our” breast cancer nurse and when “we” have had the operation (I had a mastectomy in Oct 2008).

Good luck. Let us know how you get on.

Love
Maude xx

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Javron, I am so sorry. I feel in some ways it is harder for my husband than for me. I started treatment 3 weeks ago and can attest that the period you are in was by far the worst. Once you have all the information and get started it is much, much easier - the not knowing is hell. Try not to torture yourself with what ifs, just focus on what is in front of you.

Don’t worry about breaking down - everyone does it, everyone understands - and a good cry does you the world of good. I have a routine now where I have a good cry in the bath every morning and try to get it out of my system before I start the day. And almost everyone has had a friend or relative with cancer, and has some knowledge of what you and your wife are going through. I know I have found email much easier than phone or face to face, and have long email chats with a couple very close friends. You will find as the news spreads that everyone offers to help and to be a shoulder to cry on - try and take someone up on the offer to be your confidant. Just typing the words helps.

Also, all the old cliches are true - one day at a time, just being there … etc

I know everyone is different, but my husband’s coping mechanism seems to be doing masses of research - I can’t do it as get too depressed, but it works for him, and as a result my onc has changed my treatment regime, so has been a huge benefit to me.

10

Just to say thinking of you and your wife, I hope the results go the right way for you today.

Katie x x

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Hi Javron

Am so sorry to read about your wife - I know its an awful shock to hear such news. I was diagnosed on the 2nd Novmeber also at the Breast Screening Clinic at the Luton & Dunstable after a routine screening. Things do get a little better as time goes on and your wife starts treatment and knows exactly what she is up against but its still really really hard…
I am waiting to start Radiotherapy at Mount Vernon after sentinel node biopsey/lumpectomy & excision of margins. Hope things go as well as they can today.
Your wife should receive a purple folder (see through so everyone can see whats inside!) & you will find a leaflet there about a support group which is on the first Tuesday of every month at the Breast Screening Centre in Lewsey Road which is for partners as well. I haven’t attended as I’m not sure if its for me…but it may help you and your wife.

You say you do not communicate well verbally but I have to say you message was so touching it made me cry…you do know the right words and I’m sure as time goes on you will be a brilliant support for your wife. I think you may find your wife copes well at first but as time goes on it gets more difficult as friends and family get over the shock and start to get on with their own lives etc etc…(which is totally normal) but I feel the effect/threat of cancer will never leave me now…but I hope I am wrong.

Take care
Kyra

12

Javron,

You may like to get hold of a book called ’ Breast Cancer Husband’ by Marc Silver. This was lent to us when I was diagnosed and I know my husband found it very useful. It’s written by an American, so it’s not all relevant (eg the chapter about dealing with the insurance)but it is a chronicle of his experiences throughout his wife’s diagnosis & treatment from his perspective.

13

Hi my name is Daniel a couple of weeks ago my wife got told she had breast cancer,she is only 30,she had found a lump and the doctor refered her to the hospital,she had an ultrasound and biopsy and within 30 mins we got told the news,it was never what we were expecting,i never felt so numb we both looked at each other and cried,driving home from the hospital i was in a complete daze…she has had a bone scan ,ct scan and now awaiting mri scan she has already been told she has got to have a masectomy ,she is a very strong person a lot stronger than me im a worrier,we have 3 children together and i work full time, i am slowly getting down i want to know my rights at work as i will have to take time of for her as well as the children.is there anyone who knows.i am getting tired and worring about stupid things like housework and bills, i cant seem to take it all in…

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bumping, thanks xx

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Hi Daniel,

Welcome to the Breast Cancer Care Discussion Forums. While you’re waiting for replies from fellow forum users I thought it might be helpful to post a link to the BCC Publication ‘In it Together’ aimed at people whose partners have been diagnosed with breast cancer:

breastcancercare.org.uk/upload/pdf/In_it_together.pdf

Please do also remember that the BCC Helpline is there for you if you need other specific information and/or support tel. 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm

With best wishes,
Anna, BCC Facilitator

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Hi Daniel, it is a huge shock and really. Your life changed forever that day of diagnisis. However I am 2 months into diagnosis and this is the waiting game you now have to play. Once you know the results of scans etc and have a treatment plan I can honestly say it does feel easier. Bc comes with so many uncertainties but you will become completely exhaust yourself with “what ifs”. Sleep doesn’t come easily and your worst fears are played out in your mind. You will be given a treatment plan and then you can head for each hurdle together, and it does feel that something is being done about it.
If I could offer any advice it is to talk to a select group of people you know and trust, not all my family know even 2 months down the line, and let them help with the kids and practical house running. That way you can work thro things together. I have had 2 surgeries and my OH (other half) has had the day off for each but otherwise has been at work with the help of frirends. Do you have good support network? We also decided he would attend appointments where I got results that would be significant but otherwise would get a friend to go with me. Pace yourself as it is a long haul. I also tend to get early night sometime to allow my OH to watch some “shoot em up” film and relax. McMillan give advice on rights/benefits etc, but also call the helpline on here. Have only rung once but they were very kind and used to listening to people who are distressed. Good luck, and hang in there

17

Hi Daniel
I can’t offer much other than to say my husband, of just 3 years, is a bit of a wimp, one of those blokes who cries easily, worries a lot, etc - but he has been just what I have needed through all this. He doesn’t always say the right thing, but he’s good at walking the dog (we don’t have kids), emptying the dishwasher, and letting me sleep when I can - even willingly heading off to the spare room when I am finding it difficult.
We don’t need superman, just a good man.
I often have to remind myself that its just as bad for him as it is for me. I have had more than one ‘meltdown’ where I’ve just lost all rational thought and he’s had to put up with more than most men have ever had. But he has managed not to take it personally. What I’m trying to say is it won’t be easy, but please please just try to be there for your wife however she needs you to be.

Good luck
Sheila

18

Hi Daniel

I’m sorry you’re here, but you’ve come to a good place. There are a few partners on the forums but they aren’t on here all the time. If you give the helpline a ring in the morning they may be able to put you in direct contact with others in a similar position to you. They will also be able to answer some of your practical questions, so do give them a ring.

And you can always come on here for support from people who understand what you’re going through like no-one else can understand. We women who put our partners through hell are very very happy to give support to someone who’s there for someone in the same boat as us.

I wish you and your wife well, the first part of the whole thing is the absolute pits, with waiting and not knowing and worrying about what might be. Once things become clearer, results come in and you get a plan for what’s going to happen next, it becomes easier to cope with. Not that it’s ever easier, just not as crazy and mixed up as it is right at the beginning.

CM
x

19

hi daniel i have sort of been in your position but in a different way my hubby was diagnosed with aggressive brain tumour and passed away over 8 yrs ago , what i am trying to express is that i was a worrier and when he was told i went to pieces but eventually pulled together, breast cancer is beatable your wife will go step by step through this and you will be her rock,take one day at a time get support for yourself but somehow god knows how we do adapt and come through i wish you both all the best and send you my love rachel x

20

hi, wish there were more men on here to give you support.

i think one thing i have realised lately is that my husband is going through it so much too. and there is no one there to help him, except me(he is not the generation or type to go on help lines)

I think your wife is going to be helped so much by your concern and support. Dont know how much you both talk about it all, but what would help me would be for my husband to just say if he was scared, and what aspect he is scared about. I think he is trying to be brave to help me, but if we could both be scared together it would be better for me. (what am i saying? my results are going to be totally possative and I am going to need no furthur treatment --so there!)

I was silly enough to ask him if he was worried about what my breast would look like, and he had not prepared himself for the answer, so his face said it all. again there should be a site for men to honestly discuss this. (hopefully i only had a ping pong ball removed so i could assure him it would not be so bad)

anyway, you have found this site, and if you are anything like me, just keep putting up questions or expressing feelings --it helps keep you sane