My bloods have been rising steadily recently and are now at scan stage , but rising more slowly than they were before I had open surgery followed by six months of chemo about two years ago. I know it means the b#stard must be back, but it's slower and I think less aggressive than before. I used to get my blood results monthly, but it sent my other half into a meltdown in the run up, and I now have the bloods taken every month but only collect the tests every three. I don't know how to handle the fact that my partner is convinced I'm coming to a sticky end, and that she'll be left without me. I totally understand it, but she can only see blackness, and tortures herself with images of how she just wouldn't cope without me. Honestly, I hope for the best, but have no real idea of how things will pan out for me. I'm hoping that an additional drug added to my cocktail will slow this down again, as I have a rare and fairly unknown kind, so it's a bit of an experiment to find what might work. I really hope to be living with this incurable but hopefully manageable illness for a long time, but I find her dramatic meltdowns so hard to handle. I know she can't help it, I've persuaded her to take some medication for it, but her life is so painful and it's all so destructive and pointless. I know it's not ideal that things are on the rise, but that's what this thing does, we just have to switch and ditch treatments! Then there's always more surgery. She is convinced that we are racing through the options too fast andnthat we will run out. If she could, she'd take herself out of the equation but says she loves me too much to do that, and I get so upset that she could thinkmof killing herself when I'm right here!
Sorry for the rant. I love her to bits and do my best to gee her up and tell her that I'm going to live for a long time, but she sees no point in today if we have no future....any ideas, apart from braining her?! She also feels hugely guilty about what she's doing, but I could really do with some ideas to help her see things more positively.
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Madmarilyn
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Unfortunately, your partner isn't do you or herself any favours. We need support, not doom and gloom. There is lots out there to explore, other than traditional treatment. Perhaps you can persuade her to do some research on your behalf. There are many good books out there and at present, I am reading Rick Simpson and his hemp oil remedy, which is amazing. Hope things improve for you both. Jan. x.
Hi Marilyn. I have to say that reading your post got my hackles up. Who's the patient here you or her??!! You need her support, damn it, not to have her acting like a child. Tell her to grow up and do something useful for a change. If cancer can be caused by stress, then she's doing her utmost to bring your cancer back.
Apart from the rant, I agree with Jan's post above. Best wishes. Pauline.
Please tell her having oc, & even having a recurrence, doesn’t mean you don’t have long to live, & you need her support right now. I have a rare type of oc, & it recurred for the first time about 2 years after initial surgery. I am now living with another recurrence. But it is now over 12 years since diagnosis, & I have been on hormone therapy to control my recurrence for 2 years. I feel well, & there is no suggestion that my life is nearly over, so my husband & I are getting on with our lives between check ups. Di
Hi, it’s Di again. I forgot when I first read your post that you have gct like me. I’m sure I remember one of the oncologists I’ve seen saying that you can stay feeling well for a long time, even if you’ve had a recurrence. After it’s a very slow growing cancer, & not aggressive, & there are a number of options for treatment. On the Facebook gct sites, there are ladies who have lived for years after diagnosis. Does your other half come with you to your appointments? If so, could she maybe be encouraged to ask a few questions to help her calm down? Di
Thanks Di, just seen this! I do indeed have the same type, though mine hasn't quite got the memo about being slow growing and not aggressive, but there are so many women living with it, you are so right. She does come with me to all my appts., which is amazing, but I sometimes find myself worrying more about her reaction than the news itself. There isn't also some new research starting in NZ, into juvenile GCT too.
I can sympathise with you worrying about your partner's reactions at your appointments. My husband comes to a lot of mine, & I'm always concerned about his reactions, & what he might say. One time, when we were told I had another recurrence, he felt so angry I had to spend quite a while sitting in the car calming him down afterwards, which I didn't need at the time, especially as my sister had recently died (not from oc) & I was having to deal with her affairs as well as a recurrence.
I remember being scared at first myself when I had my first recurrence, thinking I may not be around very long, especially as I had been told initially it wouldn't recur for around 20 years, & it was back after 2. But as you can see, I'm still here enjoying life 10 years after that.
I hope your partner does get the help she needs, so you can support each other. Di
Isn't it funny that we are so concerned about the other one?! Glad it's not just me, and it somehow helps o be the one voicing hope, in a weird way, as the reassurance I vocalise must get in my head and stay there! I am usually pretty positive, and I know there are options, and know there are many successfully living with this thing. I'm just floored by a horrid and conflicting succession of events in a few days, and need to take some decisive action to help myself out of it. As ever, talking to you helps, as no one else really 'gets it.'
I feel a bit angry and let down at family too right now, but I think I just want to be angry with someone, and I hate that!
I've asked Ovacome to see if they can find out what monitoring steps are usually taken month to month, and am going to ask my (fairly useless) CNS nurse in London what the process is. Then I'm going to wait for the scan results, and meanwhile offer help on these forums on subjects I have experience in. Thanks again!,
Thanks Di. I have a feeling you and I have the same kind, GCT?
This is precisely what I am trying to persuade her of. it is a manageable illness, there are many drug combos and surgery works well. I just need to extend the times between surgery for as long as possible each time, and like you, I feel generally well.
Her issue is that all she can see is life without me, which is her nightmare, and it's preventing her from seeing anything else. I think she has a kind of PTSD from seeing me through the first surgery and diagnosis when they said it was so unlikely to come back, then it did six months later, and we've been dealing with it ever since. I just spend so much time and energy reassuring her, when sometimes it's me that could do with a bit of that! Maybe it works in a weird way that the very speaking of the words that we do have a long future helps me too? She is grieving for a life she thought we'd had, and can't see a way forward. I thought it was self inflicted, but I think it's an illness of its own. Thanks for the support, I do hope you continue to be well and enjoy life!
My partner has mental health issues including anxiety. Let’s remember that people who suffer this way are unable to get past their own illness...it’s not always helpful to say ‘get a grip’. Some separate support for your partner, if they will accept it, might be a way for them to get some perspective on their behaviour and how it’s affecting you.
Meanwhile, you may need to make sure you are getting plenty of reassurance and fun from others in your life.... it’s really hard I know cos you just want that bit of a glimmer, not a rain storm in the corner xx
Spot on, Lyndy, I accept it's an illness like mine, and neither of us can help it. We talk about it a lot, and how she's feeling, and one of the best things for her is knowing how many strong women like us are all just getting on with it. She is having counselling, but is intelligent enough to know that there is no fix to how she feels bar a cure, I was just wondering what coping mechanisms others use. She has got into beach casting (fishing) which is very therapeutic, said ho we've been unable to do it for a while, obviously, and scoffed at colouring books but loves a jigsaw!
Hi, have you considered talking to your team to see if they could offer your partner counselling then maybe broach the subject with your partner? This disease is tough on us but equally tough on our partners. Big hugs to you both xx
Thanks Katmal. She does have counselling, but it doesn't stop her from these feelings of impending doom. It does give her an outlet that isn't me though, and formthat Im grateful!
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My mam
Still hoping
2019
