Supporting partner though secondary BC

Well Bruce that’s a serious crappity crap crap scenario for you, your lovely lady and the 6 and 9 children 

Right... 

1. Glad you have found this forum

2. There are other elements of the forum that could be of amazing support to you alone . A carers Group particularly

3. There is a secondary BC group too

Now then .... I’m old school in many ways so the alternative approaches dont tick boxes for me but others will have better advice

But where the children are concerned I’m an ex headteacher , mum and nana . So ..... please inform the people who care for them as in teachers etc 

Be as open and simple as you can be with them. Do not  allow Chinese whispers as they do more damage than good . There are books you can read to them and macbe do some good leaflets at addressing the issues 

Keep open as many channels of support as you can

Agree with family and friends that yes means yes and no means ...... well sod off basically

Keep in mind your emotional and mental health please

Leolady56

Thank you so much for the tips. I will seek out other support chats too.

I feel like we’re old hands at this after the initial treatment. My wife had neoadjuvant chemo, lumpectomy and radiotherapy. Then TMX ever since. Not so much good that has done :(

I too am a little skeptic of ‘therapies’ but the book my wife read is very interesting and not only does it track the story of a person with cancer (the author) it also has a happy ending (so far).

I am pretty analytical by nature and it makes a lot of sense. We’ve been open with the Onc and they are happy for us to explore some of the ideas as they have no interactions with treatment.

Now being Stage 4 means all bets are off. We will not be passive in the treatment of this disease. We don’t expect any miracles but even if it empowers us to fight and learn more about the cancer then I think that’s a good thing.

i agree though it is not for everyone, although I would encourage anyone to read the book. Even if just to form an opinion.

With respect to the kids, we’re just biding our time. We have no prognosis as yet so we need to deal with that ourselves first. We thought it was the end three weeks ago when they told us... but this always has a tendency to make you feel like this. I worry about our next visit because we can live in cuckoo land right now but we know that’s going to end very soon.

right and So the wheel of life has been massively unkind ok let’s go with crap

And I’m thinking a lot of straws are  being grasped ?

The straws sound thin and have not too much substance 

Am I being rude and not being fair? Apologies if that is the case

Are you looking for the magic wand

Now then - rude and honest OAP that i am-  is it time to make memories . Build simple futures 

whatever please keep posting the site is safe  . It is unconditional in its support. There will be a golden nugget of support that will make sense to you 

If needed I’ll be here

Leolady56 

While I find the tone a bit blunt, I understand and appreciate what you are saying and no we are not expecting a magic bullet/wand.

we just want the best chance of beating and or reaching the prognosis. That doesn’t mean evade. If indeed it doesn’t go that way then we will have tried.

And as yet we have no real prognosis, until that is delivered we will not know how our future looks. Or if indeed there is cause to look at our options.

Hope and fight is important, as is blind faith for some.

I am probably not allowed to post links but there is a site which is run internationally providing free research based nutritional advice specifically for your cancer. ‘Care across’. I’ve just received a guidance sheet which is quite good. It’s doesnt say ‘hey we can cure you’ but it does say why you should eat or not eat x, y or z.

Hi , i’m Sorry your wife finds herself in this position. I too took Tamoxifen but sadly still developed Secondaries in the bone! However I just wanted to add, bone mets can be very well treated/managed. I don’t know how advanced your wife’s mets are. But I have been ‘living’ with Secondaries to the bone for 3years now and fingers crossed, things have remained stable during that whole time(awaiting scan results)! I currently have the Zoladex injections to shut down my ovaries, as my Cancer is ER+ but that’s all. 

I have been offered a bone strengthening drug but have declined it at this point as a DEXA scan showed my bones are currently strong! But if and when that changes I have that drug and Letrozole waiting in the wings to take on any changes that might happen! In fact there is a long list of treatments that I will hopefully not need for a long time yet, but that are there if and when required. 

I think the biggest piece of advice I can offer is, don’t assume the Physical Cancer is the most difficult part in all this. Yes having cancer is physically exhausting some days, but it is also emotionally exhausting and frustrating some days too! In fact most days (for me)!

’Living’ from scan appointment to scan appointment is tough, it will be a tough time for both of you. But take time out to talk, whether to each other, to counsellors, specialist nurses or on here. Just don’t bottle things up. You are both in this for the long haul, which is great news.......but there will be days when it doesn’t feel like goods news. Days when she’ll need that extra hug and a reminder that you are in this together and that she’s not alone! Secondary Cancer can be a very solitary place some times. But together you will learn to ‘live’ with this disease, NOT die from it! 

Hoping that made some sense. Wishing you both all the best on this long journey. Sal xx

Your story is very reassuring and similar to my wife’s in many ways. I know it’s no guarantee but still illustrates there is often life beyond stage 4 diagnosis.

We’re definitely in it for the long haul and as of yet don’t know  the full picture. We know there is no other soft tissue involvement. Which is good.

However two vetebrae have pathological fractures so bone strengthening is imperative now. Possible strengthening surgery to come if bone treatment goes well.

We’re waiting and I know there will be much more waiting to come. 

Thanks

Chris

My like button has disappeared! Just want to say sal , your post is perfect .....when the words incurable secondaries are mentioned it is the pits , but like you say ,there is life , just a different life . Hope your scan results are stable and you find the energy for a swim , it is great for aching ! Getting dressed after exhausts me ! so this warmer weather is good as it means less layers ! 

Callmebruce .......best wishes to you and your family , this disease is so sneaky but there is masses of reasearch and new treatments coming along all the time .....keep posting .

best wishes for the bank holiday to all !  X

Sincere apologies if my post hit a nerve I would never intentionally be unkind especially as I read your anguish in your post

LondonLass

has posted a great  response she has given great advice

Hoping that you get continued support and advice from here and others as I did. One thing I impressed on people as I went through BC was that when I said  no I meant it and when I said yes I meant it. In that way they kindly tailored what they did to be as supportive as they could 

Take care

Leolady56

Thanks puzzler

we feel this is definitely the case regarding treatments. The next generation of treatments is coming through and things are moving so fast.

i read an article in the news about how, in a decade or so, cancer will be a manageable chronic disease. This is very exciting time for research. 

And our thoughts are also that some of today’s complimentary treatments could well be the building blocks of these bigger ideas. Time will tell.

But thanks for taking the time to wish us well. 

Frustrated with the choice of language perhaps. Talking about clutching at straws seems a bit premature.

but I do understand the sentiment.

As for No and Yes, absolutely agree. We were about to be thrust into a big family meal. Too much too soon. I had to be more straight forward than I wanted to be whenI declined.

I think a laying down of ground rules with all of the support network would be very useful.

Thanks

Chris