topic Re: Anyone Else hate the feeling of loss of control? in Living with cancer

Anyone Else hate the feeling of loss of control?

Dee58 — Wed, 10 Mar 2021 02:45:52 GMT

Hi, I have my first appointment tomorrow with the oncology team who are setting up my combined chemo and radiotherapy treatment (I have head and neck cancer)...

I was looking online at wig options etc last night and looking at videos about it and for the first time since my diagnosis I came close to tears... well... I did cry. Not loud boisterous sobs - just the quiet, tears must slide down my cheeks if they must and only because I am powerless to stop them type thing. And it occurred to me that the thing that appears to bug me the most in my current life experience is the loss of control.

I am no longer captain of my ship it seems and have to rely on crew members to steer my way. The fact that my body dared to get cancer without my permission also gets at me. The fact that my strong will can't determine such things bothers me. I have always been the strong one. The in control and take control one. If you look up stubbornly independent in the dictionary it would probably refer you to me 🙂

Having to rely on others for anything is foreign to me and quite frankly, I don't like it.

So I wondered if this cancer was to teach me a life lesson?

Anyone else pondered these thoughts?

Re: Anyone Else hate the feeling of loss of control?

sch — Thu, 25 Mar 2021 12:55:10 GMT

Hi,

How did your first appointment go with your oncology team?

Do you have a plan in place or still a bit touch and go?

Don't worry about the tears. Let them all out!

Yes, the loss of control can be difficult.

But at the end of the day, there's still nothing you can do about that either!

I've always tried to embrace the changes in my life and accept them for what they are.

Things will change again, and then you'll have more control again.

Appreciate the small things in life. Smell the flowers. Sit in the sun and enjoy the feel of it on your skin (but not too much!). Appreciate the amazingness of the fresh air. Live for what you can do, not what you can't.

All the best,

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Thu, 25 Mar 2021 13:33:59 GMT

@sch

Thanks "S" ... perfect advice! thank you xx

Re: Anyone Else hate the feeling of loss of control?

Pops — Thu, 01 Apr 2021 04:58:06 GMT

Dear Dee58

You might like to join our Life Force Cancer Foundation support group (currently online). Being part of a group and sharing with others who understand can be a powerful healing experience. Do reach out. We’re here to help.

www.lifeforce.org.au

and let the tears flow. It actually helps

with love and kind thoughts

jilly

Re: Anyone Else hate the feeling of loss of control?

JJ42 — Thu, 01 Apr 2021 04:57:49 GMT

Hello Dee - I echo what Jilly said. I'm the Jane whose phone number she has given you. I'm a breast cancer survivor (26 years!) and I can definitely relate to hating the loss of control, especially (and surprisingly at the time) after my chemotherapy finished. I couldn't understand why I felt so powerless and adrift. Luckily for me I found Life Force and honestly believe that attending my support group saved my life. I went on to qualify as a counsellor and have been facilitating Life Force support groups for 20 years. Since Covid hit, we have run our groups via Zoom, so no matter where you live, hopefully you would be able to join us. If you'd like to just talk to me, please do give me a call. You could email me on jane@lifeforce.org.au. There is definitely help available - I'm the living proof of it 😊

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Thu, 01 Apr 2021 05:42:18 GMT

@JJ42

Hi Jane! Thank you so much for your nice reply to me. I'm still in a bit of a state of overwhelm at the moment because I am still working - well that is, I am allowed to work from home but I have to try and fit it in and that is a struggle at the moment and I still haven't visited my local cancer support group and I was given their details 3 weeks ago! I know... I'm being very slack. I'm doing this on my own - as I realize do so many others - but it just makes it that little bit more of a challenge I think to motivate yourself to do stuff when all you want to do is lie down 🙂 I will get around to checking out the resource you mentioned. It sounds wonderful. Thanks again xxx

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Thu, 01 Apr 2021 05:43:34 GMT

@Pops

Thanks Jilly... sounds like a great resource. i will check it out... I don't know when but I definitely will!

xxx

Re: Anyone Else hate the feeling of loss of control?

Pops — Thu, 01 Apr 2021 06:29:31 GMT

Goodo. Could be the best thing you can do to help you in your recovery whenever you feel ready. Meanwhile lots of love dear Dee58.

Jilly xx

Re: Anyone Else hate the feeling of loss of control?

JJ42 — Thu, 01 Apr 2021 06:40:45 GMT

Hi again Dee, all relevant info is on the website: www.lifeforce.org.au. 🌺

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Sat, 03 Apr 2021 11:02:02 GMT

Just wanted to thank everyone for their kindness and supportive posts at a time when I was feeling a bit low. I've gotten a grip again and not feeling so helpless as I was at the time of initially writing this message. Was almost going to delete it because I don't like signs of weakness in myself but then I thought it might help someone else so I left it there...

I am trying to be proactive and make choices that put me back in the driver's seat as much as possible. I have always been self sufficient and self reliant... at my age now its a bit hard to start and be anything else... This is a good thing though because with no family here and doing this on my own can you imagine what a mess I might be if I was not the way I am 🙂 I can imagine my hubby up in heaven looking down and agreeing 🙂

I think a turning point for me was being offered the cold cap thing which saves your hair from falling out with chemo... it IS freezing... it IS unpleasant but if it means I keep my hair, even 50% of it, for me that is worth it. So I have chosen to suffer a bit more for a good reason 🙂 They told me some women can't stand the cold and actually give up on it... fortunately for me, giving up isn't in my nature...

My dad always used to go around telling us things like, laugh and the world laughs with you, cry and you cry alone... funny how I remember things like that these days but I think it helps keep me in check. After all, I am still alive. There are millions in the world who don't have cancer and who are worse off than me.

I am always remembering the analogy about the man who felt sorry for himself because he had no shoes... until he met the man who had no feet. Snaps me out of anything negative I might have been feeling, every time.

Anyhow, as usual, I am waffling... sorry 🙂 Thank you everyone for your very kind support! And I hope you are all enjoying a safe and if not healthy Easter, then as enjoyable an Easter as you are able!

xxx

Happy Easter

Donna

Re: Anyone Else hate the feeling of loss of control?

Posti — Thu, 29 Jul 2021 10:26:30 GMT

Hi,

Even though I was diagnosed a while ago now (November last year) I've only now felt like seeking out support groups. I noticed your post because loss of control is exactly what I felt when I first found out, and what I've struggled with the most ever since. Particularly hard has been how my mother has reacted; I know she wants to help, but she's been very pushy and controlling about it, and that just intensifies the feeling that I'm not in charge of things.

I'm glad to hear that things are heading in a more positive direction for you. Things improved for me when I returned to work - it was a way to reclaim some normalcy and feel more in charge of my life. It also helps that there's some light at the end of the tunnel now, as I've finished chemo and radio therapy and have surgery ahead of me. At the same time, I have to travel to Sydney for my operation (I live in Adelaide), so I'll be all alone there, which again makes me feel like I won't be in control of things. Still, I'm trying to be optimistic.

Anyway, it was good to see someone else put into words what I was feeling. In particular, you mentioned in your first post feeling like you were in some way being taught a lesson by your diagnosis, which I have definitely found myself thinking. It's good to be able to voice these thoughts, even when we know they aren't always rational. I hope you continue to find positivity and ways to cope.

All the best,

Henry.

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Thu, 29 Jul 2021 15:37:29 GMT

@Posti

Hi Henry, I'm 2 months out of treatment... next petscan isn't until end of August... I'm feeling slightly more in control now although the side effects tend to rob me of it now and then 🙂

Good luck with your surgery in Sydney... I hope it all goes well for you x

Donna

Re: Anyone Else hate the feeling of loss of control?

DeniseDuck — Sun, 05 Sep 2021 09:09:42 GMT

Just diagnosed with ovarian cancer (early stage thank goodness but still need 4-5 months of chemo) and I totally relate to the way you feel. Suspect that’s completely normal. Cancer did not have my permission to invade and I’ve always prided myself on being the healthiest, fittest person I know. Was in a wonderful space in my life. This wasn’t supposed to happen! So I’m allowing the tears when they pop out of nowhere, think I deserve them. But there’s this sneaking thought it’s here to teach me something … and I intend to learn what it is.

Still, it’s very stressful. Medicos are appalling at communicating and you flail around with no clue to manage what’s going on or who to talk to. It’s taken a few weeks after the op to reach out to others (this is my first attempt). Supposed to be resting after a full hysterectomy (plus ovaries and tubes), but haven’t got a hope as trying to pack - moving next week down to Victoria in the middle of a lockdown. Plus Covid concerns, car being shipped down so no transport for 2 weeks, dealing with anger, horror and fear while trying to educate myself, farewelling folk and trying to remain upbeat … it’s overwhelming at times.

I know you’ve moved past this, but I also suspect we swing back and forth between stages. Isn’t it fun! And if anyone says “you’ve got this” one more time, I may have to kill them 😉

Re: Anyone Else hate the feeling of loss of control?

Dee58 — Sun, 05 Sep 2021 11:36:26 GMT

Hi Denise, wow... you have a lot on your plate right now... good luck with everything, your move included... and especially with your treatment.

I had my follow up scan a couple of weeks ago and got the all clear and will be checked every 3 months by my ENT specialist and oncologist, taking turns... I actually only have to see them every 6 months but they're booking me so it works out I see one of them every 3 months...

My biggest problem is pain still... I'm off painkillers and just relying on Panadol Osteo because its slow release but I have to remember to take some in time for dinner or I can't eat... great diet though! Not being able to eat guarantees weight loss ha ha 🙂

Take care of yourself ... and I wont say those words to you... unless you've been through it yourself, the best imagination in the world cannot help you I've found... so friends and family who haven't personally battled the big C, really have no idea so just have to cut them some slack because they struggle to find the right things to say... AND if they do say something that annoys you, I think they'd want you to tell them... 🙂

PS: I hated it when people said that too!

xxx

Re: Anyone Else hate the feeling of loss of control?

Jim644 — Mon, 28 Nov 2022 08:30:14 GMT

Wow

Yeah I feel ya.

I was diagnosed with Squamous cell supra glottis carcinoma bout 6 weeks ago and start Chemotherapy with radiation therapy next week for 7 weeks!

From everything I've heard and read, not looking forward but we'll see.

But, yes, I've been in charge of my ship my entire life until now!

We'll see I guess