I would like to connect with other carers....
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This discussion was created from comments split from: Community Guidelines September 2019.
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Hello I am new to this network. I am a same sex partner of a woman in treatment for BC and I'd like to connect with other partners. I've looked around but can't find a group or a section specifically for partners. I have read the info for same sex partners but I'm wanting to connect with other partners. Guidance as to where and how much appreciated.
Bridget11 -
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I am not same sex partner but I have been on both ends of caring for my palliative dad at home (he passed away at home two weeks ago) and being cared for by my husband. Fortunately I am clear of treatment now. Caring for dad who had a gold card veterans we used Ozcare and the Blue nurses through Palliative care Qld who got them for us.
If you are wondering does the sex come back into a relationship, not for me as yet as both hubby and I have drifted apart in intimacy with both of us having depression, but we still flirt and will love each other forever. I imagine we will get around to the whole thing eventually.
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Hi @Bridget1
It's true that there is not a huge support network for partners.
I have found a number of people through work, but to be honest most of the meaningful support I have found on here. Some of the (mostly) women here have been incredibly supportive and patient.
Its a funny place to be, as a healthy partner of a Cancer patient. And when I say funny I mean shit. There are some dark places your mind goes and personally I found guilt to be a big one, but fear has been the worst.
Please don't let yourself be alone, though. There are some resources you should definitely use.
I'll PM you.5 -
@Bridget1 - I am so sorry that your partner has been diagnosed with BC. It really is a bitch of a disease & having a caring partner for support and comfort is SO important. I am not a same sex partner - but know exactly how it feels when your partner is diagnosed with cancer as it happened to my husband in 2010.
I thought that I 'knew' most of what went on - until I was diagnosed myself with BC in Jan last year. It is difficult to describe the depths of despair that you feel when hit with the diagnosis - the fears, the anger ....
The fact that you are on here, trying to find info that may help you and your partner thru this, is terrific.
Take care & all the best for your partner xx3 -
Thankyou all for your welcome.
Tonight, Friday night I am alone with our dog as my partner is asleep after Chemo today. It was the 3rd Praxitaxil after the 4 AC. She is getting weaker, white cell count dropping, hemoglobin dropping and now a temperature we are monitoring.
Not having been down this path before it is hard to know what is 'normal' chemo side effects and what is worrying. To watch someone you love who was healthy and well but found a lump, to be made to feel and look like someone who is dying is so hard and upsetting. We are told to trust the process, trust the treatment... it is so counter intuitive though don't you think, putting toxic chemicals into the body and take it to the brink ....but what else is there? Sometimes I wonder if this is the right path to choose, is there an alternative but I don't think there is I think I need to trust western medicine on this one. Its the best we've got for treating cancer thus far.
I am upbeat most of the time and manage holding our lives together and do everything but sometimes I find it so all consuming I just want to cry and scream and say 'I want my old life back'. I guess I'm not alone in all of this.
Thanks for listening people2 -
Much love to you and yours Bridget1. You are doing the right thing.
Do you know what we call eastern medicine that works?
Western medicine.
I can say that because I am from the east. Its literally true. The drugs and chemicals with X and Z in their names come from......nature. Where else would it come from? You have noticed that the taxanes come from tree bark. Western medicine just means we found a way to filter the other rubbish out.
Sorry, rant over.
You are doing this right. Ask for help because we all aren't very good at that.1 -
Hi there @Bridget1, I was diagnosed with stage 3 grade 3 triple positive breast cancer in 2016, aged 58. I have other medical conditions, and the cancer was in fact found by chance on a chest CT for another complaint. During the shitfest that was AC chemo, I spent a total of 57 days and nights in hospital. I had febrile neutropaenia after each dose, even with the Neulasta injections. I also had two blood transfusions which I referred to as tea with Count Dracula because of severe anaemia. I also had acute pancreatitis as a side effect from the neulasta. I tell you all this, not for a big boo hoo for me but to give you and your partner hope. The pathology on my removed breasts and axilliary nodes removed showed no, repeat no, active cancer left at all, just the dead tumour beds where it had been. (I had chemo before surgery). Aside from other side effects during the 12 cycles of Paclitaxo and Herceptin for a yearl, chemo was completed without further hospital admissions. Three years later, although on Letrozole, my active treatment is finished, and I am officially NAD...no evidence of disease. I shared a quote before which was by an oncologist who made the following observation. He said that chemo was like using a flame thrower on your garden to get rid of the weeds. It does an excellent job on the weeds, but buggers up all the other vegetation at the same time. I agree. My personal analogy was that it's like carpet bombing a terrorist village. You get rid of the baddies, but unfortunately civilians are also killed. That's war for you, and believe me cancer is war on us. If we don't kill it, it will kill us.2
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@Bridget1 For many of us it is exactly as you describe. You're trucking along quite nicely, then WHAM! a cancer diagnosis...then all of a sudden you're sick...from the treatment... It's one of the hardest things to process about this disease. And it doesn't go back to what it was before. Chemo is a tough gig. My kids (3 x teen/preteen) were magnificent during my treatment but I can look back on it now and realise how much I wasn't there enough for them when they needed me. But we all know I was doing the best I could. As were they. And 12 months on, we're all still trying to work out what happens now. All I can advise is to be there, understand it's a crap thing, and do what you can, when you can.
I do wonder @Giovanna_BCNA, if it would be worthwhile having a private carers' group (or is that outside of the parameters?). I don't know how many carers look at this site but I can imagine that there's probably some stuff they'd like to hash out that may be not so nice for us all to see but may be beneficial to their bc people.4 -
Thankyou all for listening and making the time to reach out. Of course I'm feeling better today and realising that high temps are part of the deal at times and it doesn't mean a catastrophe. I am gob smacked at what people go through and AllyJay your experience in particular sounded horrendous.
Cheers and all the best to everyone. I haven't yet figured out how you do individual responses so this is a group one.1
