Ovarian cancer

[Rach44]

Diagnosed 6 weeks ago.

stage4. Advanced. 

Being treated as ovarian cancer but biopsy confirms cancer of unknown Primary. (CUP) Doctors can't confirm cancer start location could be pancreatic, colon,bowel??

scheduled for 18 rounds or Chemo about to attend my third of just 6 I have decided this Friday. Total hair loss within 3 weeks. Busy trying to organise paperwork, my Will, advanced care plan, enduring power of attorney, superannuation claims, income protection insurance, funeral plans, memo of wishes etc etc..,,, have two young children 10 and 2, live rural am a single parent. Taking alternative therapies gumby gumby, naturopathic supplements, cbd oil, Turkey Tail mushroom, and starting liquid bovine tracheal therapy when it arrives within the fortnight. Started acoustic sound therapy as well this week. Is it ok to have Chemo and alternative therapies at the same  time? What did you do when you were diagnosed with stage 4 terminal illness? Who can help with completing superannuation claim forms? A social worker? I don't know if it's best to claim Terminal Illness or Total Permanent Disability and the implications of each? Have any of you made TI superannuation claims? Is it possible to receive national disability insurance scheme (NDIS) if you have cancer? How does one get all necessary paperwork done while receiving treatment? Is there  such a thing a Chemo brain where you can't think properly, start forgetting things? I feel there is so much to get in place before the end comes. Not sure when the end will be, next week, next month by way of a miracle 5 years. What does the end look like? Love to hear from you my cancer sisters and brothers. 

[sch]

Hi Rach44,

Welcome to the community. 

I'm sorry to hear of your illness. It's never an easy message to receive or information to digest.

Do you have family or friends who you can take with you to medical appointments or assist you?

Am I correct in understanding that you intend on completing 6 of 18 rounds of chemo? Can I ask why? I am not passing judgement here.

If you are trying alternative therapies, I would be letting your oncologist know. They can then let you know if they think these therapies/medicines are not going to be compatible with your other therapies you are receiving. 

I was only diagnosed with stage 2 bowel cancer, but in the past I was involved in an auto-vehicle accident that incapactitated me for 8 months.  I made a claim for Total Temporary Disability (TTD) insurance.  I received help in completing the paper work from a hospital social worker. The paper work can take a while to be processed, so I would recommend getting on to that sooner rather than later.

As for Chemo Brain, yes, there certainly is such a thing! You are not imaging this. It's general abscent mindeness, but just a bit worse.  To work around this, you might need to get a bit better at note taking!

When you go to meetings or or a doctor tells you something, writing down in a journal. This will be a good strategy that will assist you.

Finally, a stage 4 diagnosis doesn't necessarily mean you are going to die soon. Talk to your doctor/oncologist about the prognosis, but it's not uncommon for life expectancy to be for many years. Obviously that depends on the specific circumstances.

Keep hope alive. *hug*

-s

[Rach44]

Thank you very much for your reply s.

It gives me great hope that you say stage 4 does not necessarily mean I will die soon. 🌺 Also

I worry that I'll become too Chemo brain to fill out forms, can this be the case?  Thinking of completing  6/18 Chemo treatments as Chemo is apparently bad for the immune system and having it may only prolong life for mere months. To much Chemo arguably can be the cause of organ failure and lead to death not the cancer. Has anyone else had 18 rounds of Chemo? 

[sch]

Hi Rach,

Have the doctors spoken to you and set any expectations here? What have they told you?

-s

[Rach44]

What questions should I list and ask my dr during my next 3rd weekly 15min consultation of 18 before 6 hours of chemo, another pet scan, surgery discussions? 

 Are there medical trails?

am I having Pallative chemo? Why?

why is surgery considered? When I'm terminal anyway? 

Should my hair be growing back after 9 weeks and total loss in 3? 

What do I leave/write/ say to my children? 

Apparently im 10% of population that plans my own funeral. What do I need to do? 

Live, dance, sing, listen to music, love, time with family, friends, preparing kids treasures boxes, paperwork inc super claims day to day stuff. Sit breathe and relax. 

Children in trusted care of Mum, sister how? 

Visited great grandma today. Very peaceful. She's 95. I told her we would be in heaven together. She looked me in the eye, held my hands told me everything's going to be alright. Xx

[Budgie]

Hi Rach44,

It's horrible not knowing what's going to happen, but your great grandma sounds like a lovely woman, & she is right.  Everything will be alright.

I was diagnosed with terminal kidney cancer back in Aug 2012.  With my type of cancer there is only an 8% chance of making it to 5 years after diagnosis.  But, 7 years down the track & I'm still here & going strong.  I'm one of the lucky ones I suppose.  I was never given a prognosis of how much time I have left - probably because I don't follow any of the text book rules of kidney cancer, & they don't like to guess in case they get sued.    I would take it with a grain of salt anyway, as I believe that attitude has a lot to do with how long a person will survive.  Don't give up!  

I don't know anything about the alternative therapies you are using.  Are you getting them thru a naturopath?  If not, I would find out if there are any conflicts between them, as well as your chemo, like sch suggested.

I think everyone should plan their own funeral.  I keep saying that death isn't talked about enough in society these days.  We're all scared of it when there really is nothing to be scared of.    The only bad thing about dying is the "how", & the "when".   It would be fabulous if we could all just die peacefully in our sleep after having a wonderfully happy, long life, with a family that we love & who loves us in return.   But that's not always the case.  I have planned my funeral.  All you need to do is get in touch with one of the funeral palours & take it from there.  These days, you can have pretty much anything you want in the way of funerals.  While it can make you cry organising it, it's much better planning now & getting everything sorted, than leaving it for your loved ones to have to cope with when they are greiving for you, & often can't think straight, or are agonising over choices thinking about what you would have wanted etc.

Regarding what questions should you ask - absolutely anything you want to know the answer to that's relevant to your situation.  All the questions you've listed are great.  The only silly question is the one that's not asked!

Don't hesitate to ask questions. 🙂

Budgie

[PhilPepper]

Hi Rach 

My catch cry is... Chemo sucks balls. You'll probably find that little rant on about 20 odd threads on this site. However, you make me feel like a sook. I'm about to start cycle 2 of 4. I decided chemo suck balls after one day. Having 18 cycles is tough. Stick to it. I hope you've getting the most you can from it.

Thank you for sharing your story. You've made me rethink some things I should have put more thought into. I've got a healthy and positive frame of mind to my cancer and treatment plan, but who's to say I won't be hit by a bus tomorrow. We are kind of lucky in a way, by having a time limit thrown in our faces, it kind of pushes us into getting our affairs in order. Maybe being too positive has made me complacent in this area.

I hope your oncologist appointment went well. I am seeing mine this morning. I need to focus on all the questions I need to ask. I'm feeling quite unprepared.

I've been lying awake for 4 hours. The alarm clock just went off. Now I feel like sleeping. I've not spent a lot of time on this site in the last few weeks, but I've been making up for it this morning. I worry more about starting my 2nd round of chemo than I do about cancer. I feel the effects of chemo. Didn't really feel cancer at all. Except when they cut the bugger out of me. Still feeling that actually.

Good luck with your treatment. Take one day at a time and get the most out of each one.

Cheers

Phil