topic Re: Struggling with the uncertainty in I've just been diagnosed

Struggling with the uncertainty

Jubbly — Sat, 30 Nov 2019 14:36:12 GMT

hi, I'm just wondering if there are others out there that struggle to sleep at night. It seems like the rest of the world is able to roll over and sleep while I sit in the lounge room and my mind races, like after midnight my brain starts to process all the activities, the tears, the WAITING, the docs - mostly the ones that scratch their heads, what is going to happen, will they risk the operation... sleeping tablets, meditation. Anxiety. Fear. Impatience. Frustration. And all while everyone else sleeps. No help line to chat to, don't want to wake the sleeping. Depression washes over in waves. Scared.

Re: Struggling with the uncertainty

sch — Sun, 01 Dec 2019 00:10:09 GMT

Hi Jubbly,

I actually read your post last night, but didn't respond. Yes, I am often awake until late/early.

What I've found helped me deal with issues like these is writing them down.

Each night, try writing about what is going on in a journal. I found it helped

Maybe some meditation would be beneficial too?

Have you been talking to someone about all of this?

-sch

Re: Struggling with the uncertainty

PeterK — Mon, 02 Dec 2019 01:31:39 GMT

Jubbly

Hi your emotions feelings thoughts are very similar to mine at s4 3/4 hrs sleep at times a night so hard to switch off worried for my wife and kids mindful of what results I Well get in early Jan

Pain killers help sleeping pills only last 3/4 hrs but have found playing some mood/ sleep music very low gives the mind something to concentrate on and this does help

Staying positive having and kicking even small goals having a good support network family friends workmates is all a tremendous help and so good for mental and physical endurance

Good luck on your journey and may each and every day bring rich rewards for and to you

kind Regards Peter

Re: Struggling with the uncertainty

Lolie — Sun, 15 Dec 2019 21:25:43 GMT

Have you been able to obtain any more clarity about the next step since you posted this?

I know the feeling you're talking about. I wake in pain around 4am each day and by the time the painkillers kick in my mind is racing too much to go back to sleep.

I know that it's not at all productive to spend the early hours worrying or speculating, but it's hard not to at times.

Re: Struggling with the uncertainty

Jubbly — Fri, 20 Dec 2019 14:53:28 GMT

Update:
Mainly inoperable. Stuck between aorta, eosophagus and spine. Tissue diagnosis as risky as removal. PET scan next month will hopefully shed some light. I'm sleeping a little better but frustrated that because there is no definitive answer, I can't and won't be treated by specific specialist that I need... So, like so many of us on here, I face Christmas and a new year with uncertainty.
I send everyone a hug and wish them peace especially as they face the darkness that comes. I knoe that none of us are truly alone.

Re: Struggling with the uncertainty

Lolie — Sat, 21 Dec 2019 08:33:14 GMT

I'm sorry you haven't received better news and that so much remains uncertain.

I met with a surgeon yesterday who made clear that he wouldn't be inclined to operate. I'm still waiting for more results including a PET and another biopsy, but the surgeon's attitude was so off-putting that even if the results from those indicate surgery is a possibility, I don't think I would be able to put my trust in him.

I hope you're able to put worry aside for at least a few days over Christmas.

Re: Struggling with the uncertainty

CaptainAustrali — Sun, 29 Dec 2019 14:47:31 GMT

In case the advice is somehow helpful, I really think distraction is important.

If there is that 'one thing' in your life .. whatever it may be … music ? Let's use that as an example. Let's say you always wished you had learned an instrument, but never did. You often think back longingly, wishing you'd have learned the flute or guitar in your 20s.

Do that now.

Sitting, staring into the shadows in the wee hours of the morning - well, sometimes that's inevitable.

BUT ..

If you find that 'one thing' and make judicious use of it as often as you can .. you might find that some of the distraction actually works. Even if you're still awake at 2 o'clock in the morning, at least you're deriving some kind of enjoyment and positive momentum in developing this skill that you always wished you had.

Sure, we all have cancer. But we're not dead yet. We don't have to CHOOSE a life lived in limbo, and if your future self could travel back in time, the day before your death, whenever in the future that may be, the first thing they'd probably say to you is "Don't fret ! Don't waste your time with agonising over this death anxiety stuff, make the most of it. Find some sort of pleasure or fun or productivity".

I don't care if it's knitting sweaters for miniature dogs, doing incredibly arcane and difficult crossword puzzles .. but if you can think of that one thing .. or even three things .. and lay in whatever supplies and planning is necessary to fulfil it ------ you may still be awake at 3am, but at least you'll have something to do.

And yeah .. even if you don't feel like doing it - give it a chance. Don't let cancer suck the remaining joy out of your life.

Re: Struggling with the uncertainty

Lolie — Mon, 30 Dec 2019 05:27:18 GMT

My great love and great distraction for years has been my garden. Unfortunately, the extreme water restrictions we're under now make it impossible to maintain that - something I was already feeling disappointed about before I knew I would need a distraction.

I will no doubt find another but it's hard to rustle one up on cue.

Re: Struggling with the uncertainty

Lampwork54 — Mon, 30 Dec 2019 22:30:18 GMT

Good morning to you all. I've read through these posts and it's really a normal reaction and she of the advice is really good. CaptainAustralia is right with the distractions. I make glass beads but have not been able to make any since my diagnosis. I'm determined to start again once the weather cools. In the meantime I have knitted about 20 scarves from all the left over wool from years of knitting. Finished embroidery for some of my quilts too. I've also been challenging myself by cooking from an amazing patisserie book and feed my grandchildren the results when they come over after school.

I've said this in other posts but will repeat it for you. I had been on an antidepressant for years before my diagnosis. It was prescribed by a rheumatologist as I had osteoarthritis in my shoulder that did not respond to a cortisone injection. The drug is called Amiltryptolene and the brand name is Endep. It is used for nerve pain, has a side affect of sleepiness so only take at night and strengthens the bladder. It also has a side effect of thirst. It's very mild and my GP said she's had people on it for years and years into their 80's. When I was in hospital they increased my 25mg dose to 50mg. The best time of day for me is when I take that tablet at night and I know I will get 10 to 12 hours of deep sleep. I think there's nothing worse than those midnight hours of sleeplessness so I really appreciate it. I think all the sleep has also helped me to recover because it is good for the body to sleep. It's the only medication I am on. I hope that helps.

My garden has also been a great comfort. 43 degree days are not the best for the garden or for my bees but we survived it yesterday and had lovely rain overnight and cooler temperatures for a few days to come. I am growing sunflowers from seeds I collected from last year's sunflowers so that my bees have really good resources. Also lots of bee friendly flowers.

I hope your journey through this nightmare is a good one, even though there's nothing good about it. I hope you come through this and the news is good or as good as it can be. If you're not happy with your surgeon go to another one. You have to be confident in him/her completely. Please keep us updated on how things go for you. We're on this journey together and I have loved having this forum to discuss these issues within.

Re: Struggling with the uncertainty

Lolie — Sun, 12 Jan 2020 02:19:14 GMT

Like you, I have been on Endep for years for osteoarthritis. I don't find it makes me sleepy but increasing my dose has helped control the neuropathic pain which was making me wake up every couple of hours throughout the night.

I ended up getting hospitalised last weekend with critically low sodium levels after becoming dehydrated and hypovolemic during the heat wave.

The positive consequence of this was that my pre-chem workup was fast-tracked and I have started pre-phase with my first cycle of chem to start this week. I've been too busy to do much worrying.

The reduction in pain and swelling from the first 24 hours of pre-phase was unbelievable. I've heard about the effect before but it's hard to wrap your head around until you experience it. Naturally, massively reduced pain and discomfort makes sleeping and eating easier.

I'm now purely under haematology and I absolutely love the registrar who is managing my case. I trust her implicitly,which makes this voyage into the unknown a lot easier to face.

Re: Struggling with the uncertainty

Jubbly — Thu, 16 Jan 2020 04:26:09 GMT

update: its either osophageal or gist behind the osophagus. I am terrified. They are saying that its likely that I will need my osophagus removed! Holy moly!!

I have never envisioned myself as an old lady, maybe this is why... I trust my doctor, but I just don't know if I can do this. Family support is low. No real friends. Live a lonely life to begin with. This is just scaring the last few away. Sorry peeps, feeling sorry for myself I guess

Re: Struggling with the uncertainty

CaptainAustrali — Thu, 16 Jan 2020 10:11:21 GMT

I have one friend. Yep, one.

By choice.

Estranged from broader family, also by choice.

I have three kids and a happy wife, and we share mutual adoration, so I feel supremely, utterly lucky.

And yet cancer has isolated me like nothing else.

It does that to you, it's an insidious disease, it's greedier than most diseases in that it wants to take everything from you. Your sense of place, permanence, hope.

The thing is, any aspect of the disease can be fought.

Clinically, you appear to have a surgical solution. Yep, it's scary - but it's a pathway that will (fingers crossed) get rid of the cancer or prolong your life.

Loneliness and Isolation ? Likewise, that has a pathway. There are professionals who can help, or there are peers who have gone through or are going through the same thing, and I'm sure some of them would be willing to pick up a phone and maybe form a new friendship.

You're still alive, you're still viable, there's hope. Don't allow cancer to eat away at your hope, if it's inside you, try and stay solution focussed. I know it's hard.

Can't sleep ? Exercise more at night before bed.

Can't exercise ? Do other non-physical work to occupy your brain.

No work ? Try reading or computer games.

You know what I mean … isolate any given problem and navigate to some kind of strategy to solve it.

Even if you fail, in the trying, you'll feel better and more in control.

All the best.

Re: Struggling with the uncertainty

Lolie — Thu, 16 Jan 2020 10:31:58 GMT

I'm so sorry Jubbly. It's a lot to process.

I do have support but my family really struggled for the first week or two and it's only now that the treatment plan is clear that people have defined roles rather than just reacting to the latest crisis.

I did phone the Cancer Council and found them a great resource both in terms of what they can offer and referral to other resources. It might be worth giving them a call. The social worker on your oncology team should also know of local resources and be able to refer you to those.

It's OK to feel sorry for yourself. You've been dealt a crappy hand. The choice of how to play it is up to you but it still doesn't make the cards you were dealt any better.

Please take care of yourself as much as you can while you work through this. And please remember that we're here for you as much as you will allow us to be.

Re: Struggling with the uncertainty

Picara14 — Thu, 16 Jan 2020 16:13:26 GMT

Yeah, I'm struggling with this problem as t the moment too. I've just finished Round 1 of chemo and while I should be pleased that the infusion bottle is off and the side effects were minor, this afternoon and tonight I had racing anxiety I couldn't control and couldn't stop crying. I think it was a combination of exhaustion from the chemo and all the worry and panic I had during it...all the uncertainty of the first time.

I have great support from my family and with the help of Valium and sleeping pills was able to get to sleep for a few hours. But now it's 3sm and my mind is racing again... I can't stop thinking about everything I have to do, all the upcoming appointments, etc, and all the uncertainty.

I don't have any useful suggestions to offer anyone yet about this stress and wakefulness, just that writing this down does make me feel a bit better. Here's hoping we can all find effective distractions/cooping mechanisms in time!

Re: Struggling with the uncertainty

Lolie — Thu, 16 Jan 2020 16:27:06 GMT

I just woke at 3am after having my first infusion yesterday, too. Hoping I can get back to sleep for another few hours once my tummy settles, and that you can too.

It does help knowing I'm not the only one.

Re: Struggling with the uncertainty

Picara14 — Fri, 17 Jan 2020 16:21:17 GMT

Yeah, it really does help knowing you're not alone going through this stuff in the early hours, since it feels so scary and isolating!

Woke up at 3am again, but listening to a podcast is helping me calm down and fall back asleep.

Re: Struggling with the uncertainty

Lolie — Sat, 18 Jan 2020 02:14:08 GMT

Hope you're doing OK Jubbly.

Re: Struggling with the uncertainty

tisme — Tue, 05 May 2020 07:52:50 GMT

I so get that , never felt so alone , so angry so scared so tired, watching the clock tick round , i know i should sleep but ............... theres no where to turn no means to solve the problems around the big problem