topic Re: Finding friends in Living with cancer

Finding friends

Foxyjade — Tue, 11 Aug 2020 04:09:44 GMT

Hey:)

in 2018 I was diagnosed with breast cancer and went through treatment. A couple weeks ago I found out it’s back and in my bones. They’ve given me 5 years with treatment. I’m honestly not on here to talk about the shit we have to go through but to find like mined individuals that I can relate to.

Re: Finding friends

Jill53 — Tue, 11 Aug 2020 04:55:05 GMT

Just wanted to send you hugs xx

Re: Finding friends

Foxyjade — Tue, 11 Aug 2020 12:36:27 GMT

Hugs back🤗

Re: Finding friends

PhilPepper — Wed, 02 Sep 2020 12:38:17 GMT

Hi Jade

Three weeks and you've got just one hug. When I joined this forum last year, it seemed really popular. Activity seems to be waning. Don't worry. It's not you.

Sorry to hear about your condition. I'm at the point where you were. Had my treatment. Things are looking good, but the future is still uncertain. My obvious concern is getting the bad news.

what is your next treatment step?

cheers

Phil

Re: Finding friends

Foxyjade — Wed, 02 Sep 2020 16:07:50 GMT

Hey Phil:)

thanks for reaching out to me. I’m actually surprised that there are not more cancer support groups out there considering how many people have or have had cancer.

sorry to hear about your condition as well. It can be very difficult to manage emotionally I find. It really helps having people who have gone through similar things to connect with.

Since my last post they have also found cancer in my liver and lungs. So, my prognosis is not looking that great right now. I’m going in to the hospital tomorrow to start some new meds through a clinical trial. I’m really not looking forward to it obviously lol

How are you dealing with things? Are you still “cancer free”??

Re: Finding friends

PhilPepper — Thu, 03 Sep 2020 21:06:55 GMT

Hi Jade

The prognosis so far is good. And the further I get from treatment, statistically speaking, it's improving.

I come to terms with it early. Just accepted that if my number is up, that's it. Surprisingly enough, it wasn't good enough for the people around me. I kind of stopped living for myself and set my goals on being here for them. That was my mental fight against cancer and it was an easy win.

With that said, surviving the treatment was its own battle. Chemo was cruel and kept sending me to hospital. My body didn't cope with it. The outcomes of surgery are a constant reminder of what I went through. Although I consider myself lucky compared to what others have gone through. So I try not to play the pity violin too much. I focus on doing things that make me happy and try to put the past behind me. Quite optimistic for a long future, but certainly not taking it for granted. I don't my head will let me.

I suppose you are now on a major roller-coaster with your latest news. When you try to think of something supportive to say to people in your situation, you get a lot of repetitive and polite sentiment. I've been on the receiving end of that and I kind of think it's funny to watch people dance around their own tongues. So I'll just be blunt. That really socks! I don't know you very well, but I am saddened to learn of your worsening condition. Reach out any time you want to beat up on life, fairness or consequence. If it helps, I could write you a poem.

Take care

Phil

Re: Finding friends

Lolie — Sun, 06 Sep 2020 06:45:33 GMT

I'm also surprised by how few support groups there are online and by how quiet most of them are. There was a large and very busy American one which closed at the end of last year with very little notice and it was a huge loss.

I've recently gone from getting news on 14 August that I'm in remission from lymphoma to having it confirmed last week that a mass in my lung is primary lung cancer, so I can somewhat relate to trying to wrap your head around something new and its implications for your current and future life.

Please keep us updated with how you're going.

Re: Finding friends

cemo-queen — Sun, 20 Sep 2020 15:47:46 GMT

Hello new friend! Don't except that time line. They don't know, I was given months. I gave up my life with horses had a yard sale sold my stuff dirt cheap thinking the worst. That was 6 years ago. Little did they know I was to mean to die. My favorite saying is what's hard by the mile is easy by the inch, well many miles later here I am. I'm not as mean as I thought. I have learned so many things, people do care. I love my cancer center, they are the one's who gave me the name cemo queen but I no longer receive I V treatment's so I rarely get to see them. With oral treatment's at home and covid 19 I go day's with out talking to anyone. So if you want someone to talk to no matter the subject here I am.

Re: Finding friends

CiennaR — Sat, 03 Oct 2020 04:32:35 GMT

Hi Lolie,

I read one of your posts regarding finding friends and wanted to say I belonged to the cancer forum that closed down suddenly. I still miss it! It was a great cancer forum with a bunch of great people.

I am sorry your cancer reappeared in your lung. I know how you feel. I was in remission for 18 months and just found out recently that the cancer is back in my lung. This is hard to accept.

I would be interested to know more about you and how you are doing.

Re: Finding friends

Lolie — Sat, 03 Oct 2020 07:46:26 GMT

Hi Cienna

I had the first of 4 SBRT sessions for the mass in my lung yesterday. I have 2 next week and then 1 the following week, then it's a waiting game to find out how well it's worked.

The lung mass isn't a relapse. I actually have two different types of primary cancer. The lung cancer was almost certainly present prior to the lymphoma.

I feel quite well. I'm just a bit tired. It's been a long year and once this treatment is over I'm hoping to have a couple of months of my life not being dominated by medical stuff.

I'm sorry to hear about your relapse, and also about your vision problems. I hope your team are able to find solutions to both.

It all gets a bit exhausting sometimes, doesn't it?

Re: Finding friends

CiennaR — Sun, 04 Oct 2020 01:14:28 GMT

Hi Lolie,

When I was diagnosed with lung cancer the first time I had 5 SBRT treatments every other day. It went really well with no problems except tiredness. I'm sure you'll do fine and I'm assuming you will have 3 months until your first CT scan after treatment. It is so nice to be free of medical stuff!

Do you have cancer in both lungs or just one lung? I have had it in both lungs but each time it has been small and supposedly slow growing. I go this coming week for a consultation about what kind of treatment I need. My main oncologist wanted me to have SBRT again but the radiation oncologist doesn't like to do it twice on the same lungs.

Yes, it does get exhausting. The minute I was told my cancer had come back my first thought was here comes the tests and more tests.........

Anyway, glad you are going to get a break after SBRT is over.

Re: Finding friends

Lolie — Sun, 04 Oct 2020 02:33:41 GMT

Hi Cienna

I have a single tumour in the lower lobe of my left lung.

They will do a CT at 6 weeks post treatment, but that's to check that there are new nasties. The first CT to evaluate the success of SBRT will be done at 6 months. I'm due for a CT to check on my lymphoma around the same time so I will probably have a single scan to check on both.

I don't think people realise how many appointments precede treatment. I had 8 appointments with 4 different places prior to starting treatment (it would have been more if I didn't have recent bloods and a PET) while treatment itself is only 4 sessions.

I had the option of surgery, so that will remain available to me if this treatment doesn't work. Options for the future will depend on the exact nature of any relapse. My radiation oncology registrar and I were talking about it the other day and new treatments are becoming available every few months at the moment, so there is good reason to be optimistic that there'll be a range of options should I relapse.

I hope that the MDT is able to come up with a treatment plan you're happy with and that you're able to start treatment soon. The workup period seems to drag on forever, doesn't it?

Re: Finding friends

CaptainAustrali — Wed, 21 Oct 2020 11:53:01 GMT

Hey Hey

Cancer is a shit show - there's no two ways about it. It's an insidious disease, it doesn't just want to take away your life, it wants to rob you of your hope, connectedness, any light that's available to you.

Having a finite expiry date - that sucks, mate. I'm really sorry. Dealing with an uncertain expiry date and a high-ish risk of recurrence (alongside a bunch of cancer-like side effects) is it's own special type of hell too.

My advice:-

Just for a minute, put aside the cancer. Completely park it. Forget all about it. It's gone. All the ways it's impacted your life, your relationships, your feelings. Gone.

Now slip into big picture mode, look at your life untethered by any of that stuff. Time travel with your mind a bit, and look at yourself just the year before your cancer diagnosis.

Then - just imagine this outlandish scenario. After a global event, human beings are going to evacuate the world. In five years. We're all hopping on various rickshaw-like spaceships and getting the fuck out of here. Until then, business as usual. Live your life. When the time comes, you jump on the spaceship and we all fly into the unknown, hoping for the best, aiming for Alpha Centauri (avoiding some incoming asteroid or solar event or something).

OK. So .. just for the exercise, imagine that.

You've got five years. A finite amount of time. What do you want to do with it ?

My answer: nothing much. Just hang out with my kids. Hug them, make sure they know they're loved. Hang on. I always wanted to walk across China or Japan or maybe parts of Europe. Hmm. Maybe I can scrap together the money and take the kids with me. Hmm. Hold on, if I wasn't so old and fat, I might want to porn star up and bang like a champion for a few years. No. Too old. Let's stay dignified. I wouldnt mind learning to sing. Hmm. Get good enough at the guitar to go busking, then give the money to a homeless person ? That sounds fun. Hmm.

So I start to tick stuff, cross it out - not thinking so much about cancer. Dealing with cancer. The consequences of cancer - psychological and physical. Thinking about what I want to do with the time that's available to me.

You know one thing I wouldn't want to do ? Worry about some shitty disease. Complain about it to my friends and in my other daily dealings. Chitty chat in online forums to other people struggling with the same brand of nasty, fearful shit that I'm dealing with. (Yes, and I get that I'm doing that right now - but I'm trying to quit 😉

You seem to have a great attitude, a clever, open-eyed person. Get out there and live, make the utmost of the time that's available to you.

That's my advice.

Sorry if it's shit 🙂

All the best.

Re: Finding friends

CiennaR — Fri, 13 Nov 2020 00:20:55 GMT

Captain Australia,

Very well written and very good advice.

No one knows how long they might have, life can be gone in a minute or go on for a long time.

It helps sometimes (for me) to get out of my own head. Toss the cancer to the curb for even a little while.

Yeah, cancer sucks big time.

Thanks for reaching out.

CiennaR

Re: Finding friends

Wegotthis — Sun, 03 Oct 2021 13:46:49 GMT

I'm sorry to hear that you are going through this again. I can't relate to that you have been through or will be going through.

I still don't know what I have but the doctors have lead me to believe it is cancer. I believe it's going to be ok.

My life is about making this world a better place for others . No matter how long I may have.

My family and friends always expect me to be strong and in control of bad situations.

Something this means faking a smile while I struggle in silence while I'm trying to keep my family feeling positive. Unfortunately I cant take away the fear my wife and kids are going through waiting to hear about my surgery results. But I have control of how they see me dealing with it.

If I have cancer I'm fine with it. My family will come out stronger and closer than ever before.

I call that a blessing.

I hope you can find a way to make the best of what time you do have.

Remember every week is full of days no matter how healthy we are. Make the best of each one. Tomorrow isn't promised to healthy people.

Re: Finding friends

CiennaR — Thu, 07 Oct 2021 20:39:13 GMT

Alishan,

Thank you for responding. I will look up this site. Yes, going through treatments, doctor visits, etc. it is hard to keep track of everything.

Glad you are doing good and living life!

CiennaR

Re: Finding friends

CiennaR — Thu, 07 Oct 2021 21:01:43 GMT

Hi Wegotthis,

I hope you do not have cancer but you have a very good attitude. It can be hard at times to be positive but it is better to keep this to ourselves because by being strong we make our family strong. Just because we have cancer doesn't mean we can't laugh and be happy.

It is very true what you said, even healthy people aren't promised a tomorrow, so be happy for today.

Hope it all turns out good for you and your family.

CiennaR

Re: Finding friends

Rico2018 — Thu, 07 Oct 2021 22:26:41 GMT

Be strong and pray to Jesus and believe me trust him. Jesus will cure you.