Spouse of a Breast Cancer Patient

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My name is Erin. I’m 23 years old and in a civil partnership with the love of my life, Jo. We’ve been together for 6 years and have experienced so much in that time. We’ve traveled the world and feel as if we’ve lived many many lives together just in the past 6 years.
She was there for me when my father died of liver cancer, and I thought that was the hardest thing like that, that I’d really ever have to endure.
Yesterday Jo was diagnosed with Inflammatory Breast Cancer. She’s only 38 and has always been very fit and healthy so we just did not see this coming.

She is incredibly practical and is bravely facing all this information head on. Of course she’s still swallowing all this information down and has been pretty upbeat, but I can only imagine what’s going on inside her head. In a very strange way I understand that I CANNOT understand what she must be going through. We both still feel like this is all a bad bad dream…it’s just so hard to wrap your head around and constantly remind yourself to be positive and realistic.

Jo suggested that I join these forums to get some help in how to identify and deal with my own reactions (what I may face in the future, etc) and just generally get a little information on what is best for me to do over all.
I know that there’s nothing I can do to make this go away and my ‘help’ is purely narrowed down to just loving her, supporting her, holding her hand and being there.

I wanted to find out if there is anyone who has had or has cancer that can tell me if there were/are any specific things that really comforted you?
As well, if there is anyone who is in the same position as me, what were your experiences like?

I have known a couple of people fight breast cancer and survive and that does give me hope, but I am still trying to find the good balance between thinking realistically and hoping that everything will be okay.

Thanks in advance for reading this. Any words of advice will be helpful at this point.

Erin

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Hi Erin, so sorry that u have to join us here but welcome. U sound like ur doing all the right things to help Jo. It is such a shock when u get told u have breast cancer. I was only diagnosed about 6 weeks ago & have had 2 ops so far. It feels very surreal as if it’s happening to someone else & it does take a bit of time to get ur head around it. I feel that taking one step at a time helps me to cope, i don’t look to much further than the the next step. If i thought too hard it would probably drive me insane. There are other threads on here with views specifically from spouses/partners/family members so it might be worth u having a look through them.
No-one will expect either of u to be upbeat & positive all the time, u will both have down days but u sound like u have a great relationship which will help immensely.
My husband helps me by just being there for me,he’s very practical around the house anyway but just a hug when i need it makes me feel so much better.
I’m sure they’ll be someone else along in the same situation as u, take care & keep posting when u need to,love Heather x

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what a wonderful partner you are to care so much. You sound to have a wonderful relationship Some women on here are just not getting any support at all from their other halvess.

Did you know that the help line is there for spouses too?? and the can put you in touch on a one to one basis of someone who has been through the same thing, or they can talk you through what to expect and give you some practical tips.

there is a special thread too for IBC so you could post a question on there, the ladies with this type of cancer will get straight back to you with their stories. I am not familiar with the next set of test and proceedures Jo will be having but they will be able to explain things better.

Who knows what is going on in her head, it sounds as if she is worried about you too. Some people would say that unless you are like polyanna, posative is a bit of a dirty word and that being realisic and petrified is more natural a this stage, when you realy dont know the result of all the tests and what the treatments is. Everybody will tell you that once all the tests are in and they have sat you down and told you how you are going to fight it than things are so much better than they are now.

i am sorry that you find yourself here and hope someone with a bit more relevant information will be along soon

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Hi Erin (what a beautiful name, by the way)

How lovely of your OH to send you to the site to speak to people, please do tell her that she’s very welcome too. There are a good few lesbian women who are active on the site who I’m sure will be along shortly to give you some support, but in these forums support is there from all of us to all of us, regardless of race, colour, religion, sexual preference, height, meat-eating preferences or any other individuality.

As for what makes us feel good, what you described is absolutely the most important - loving, supporting, holding hands and being there is SO good. But I’m sure she’ll be worried about you too, so make sure you get the love, support and hand-holding that you may need.

Survival rates are improving all the time, and you are both right at the very start of this which is the scariest time for all of us. Once things get going for you, where you find out exactly what she’s got and what the treatment plan is, then you will feel a lot better. This stage leaves us all knocked completely off-balance and it is absolutely horrible, so what you are both feeling now is completely normal.

Sorry, rambling, supposed to be working and can’t concentrate, but wanted to come and give you a huge hug, sounds like you could do with it.

CM
x

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Hi Erin,
Just to endorse what others have already said - bcc forum is about supporting one another with, through and beyond this disease. We are a very diverse group of folk with very diverse life experiences but what unites us is love, understanding and lots of cyber-hugs. As the wise Choccie Muffin has observed, on here diversity is often celebrated and always accepted, so I hope you will feel safe to ask for the support you need.

It does take time for this to feel real - especially as people are almost always fit and healthy when b.c. sneaks up on them. Just take your time, ask as many questions as you like (there is no such thing as silly question) and remember our mantra (altogether now…) “do not google”. There is some really good info in the leaflets on this site, and both Cancer Research UK and MacMillan are trustworthy, but you really don’t need to be paniced by the outdated, wrongheaded and sometimes just plain dangerous twaddle that can be found online.

Sending you a cyber-hug.

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Hi Erin you sound as if you are very intune already & loving Jo as you do is going to be one of her biggest strengths to get through the weeks & months ahead.

Everyone here is so very helpful & supportive ive found BCC a God send for me over the past few months. Its always best to try not to look ahead, just take one day at a time & don’t google too much out of date info alot that is not true that just scares the life out of you.

All the best to Jo & yourself always someone about if ever you need a chat

Hugs
Mekala x

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Hi Erin

sorry you have had to join us but i think you’ll find this forum is very supportive to you and your partner. Allow yourselves to be cross and upset, particularly at first. Once you have firm treatment plans in place it is easier to see a way thru.

This is not an automatic death sentnce - for many people it’s a year of some combination of ops, chemo, radiotherapy etc and having loving support is incredibly helpful. I know how much I have leant on my partner and I have sometimes been concerned that she has not always had anywhere to vent her own stress (I haven’t always been pleasant) so get as much support for yourself as you can.

sending you and Jo big hugs - if you dont want 'em immediately save them for later

Dawn x

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hi erin,

you have an advantage on most spouses, you are a woman so CAN have more of an understanding of what your partner is going through and how she is feeling,

its physically impossible for a man to, my advise to you would be to just be there, I dont know whether she is one for talking about things openly but if she wants to talk sometimes it helps just to listen,

dont take everything she may say or do too personally, a lot of it will be frustration, fear and a mixture of god knows how many other emotions,

apart from the practical things, cleaning, shopping,cooking etc, just be there,

of course you have to cope with all of this too, it is a brilliant forum to come on to, you can get information from people with personal experience, I myself was 32 years old when I got my first diagnosis, I am now 45,you can come on here and vent your anger, have a rant or just talk, you wont ever be judged, we all understand, you need to deal with things day by day, cope with things the best way you know how, dont expect too much from either yourself or your partner,

its not an easy path but you will do it together,

keep posting and let us know how you both get on,

love and best wishes Liz x

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Hi Erin

An IBC survivor here. You’ve come to the right place for advice. You sound like a very caring and sensible person which is just the combination your partner needs.

One piece of advice I would offer is to try to steer your partner away from googling IBC now that she has been diagnosed. A great deal of out of date and frankly scary information is still out there about IBC. It would have been true a few years ago but is no longer relevant as treatments have improved so much. After reading much of it 2 years ago I convinced myself that I had no hope of surviving. My contact with the IBC ladies on this site was the only thing that kept me positive. They are a great source of up to date info and inspiration.

I agree that practical support like taking on cooking, cleaning etc means a lot especially if your OH is normally very independent. It can be hard to ask for help if you’re the kind of person who is used to coping, so just doing it without being asked can take a big load off.

Also, I found it really helped to plan treats for my good days between treatments. Whatever makes you both happy. For me and my OH it was short weekend breaks with our dog but it could be anything you look forward to. It gave me something to aim for and then good memories to look back on afterwards when times got tough.

Hope this helps, Jan xx

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Thanks so much to everyone from the bottom of my heart for posting replies. I really appreciate your kind words and support and wish you all the best of love and hope in your own personal experiences.

xxxx

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I just re-read through all of your replies and I just want to stress again how amazing you all are.
Particularly those of you who have had IBC. It’s amazing how many women do not know about this type of breast cancer and I hope that through out all of this I can learn enough to hopefully help someone else one day or offer sound advice the way you all have for me.

Jo is also a member of these forums and has been chatting to a lot of women (probably some of you) who have steered her away from Googling anything about IBC or treatments as we have seen massive developments in technology even in the past few years.

We also went out yesterday and bought a puppy so this brand new bundle of limitless energy will hopefully give us a focus through the good and bad times. You know, the whole something that loves you no matter what thing. :slight_smile:

Thanks to you all a million times again, I’m sure coming to these forums and using this website will be an absolute blessing for both Jo and I.
xxx

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You won’t be the first or last people to go and get a puppy to help you through a stressful time, so your next task is to take a picture and put up an avatar so we can all coo over the little chap or chapess! I’m sure you’ll find lots of comfort in looking after the pooch, and he or she will give you a good excuse to get out for a gentle stroll, which is good for both of you, though obviously Jo may well not feel like it all the time, depending on her treatment regime. Having a pet’s great though, a real stressbuster.

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Hi Erin, I just wanted to wish you and Jo all the best. People can often forget how hard this can be on partners, they are expected to be strong and supportive, whilst they are dealing with their own sadness and fear at what is happening to their loved one. So make sure you take some time for yourself, and as others have said it is useful to have some support that is just for you. It is not being selfish, think of it as by taking care of yourself you will be stronger and better able to support your wife.

Very best wishes to you both. And I too would love to see a picture of the puppy! xx