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struggling

i am sorry i havent been here and havent been as supportive as i normally would. i have been really busy but also my mental health has really gone downhill along with my physical health. i am in the middle of getting some tests to confirm whether i have a form of cancer or if it something else causing these symptoms/  i am struggling quite badly where im at the point that im struggling to even ask for help, see the point in seeking support or even wanting to ask now. its not really the way i wanted to come back and i know i dont deserve support esp for being so neglectful here but it would be much appreciated if i could have some support and help. 

scared01
scared01Posted 26-07-2019 08:18 PM

Comments (8 pages)

 
 
 
 
 
scared01
scared01Posted 01-10-2019 06:50 PM
Hi @Jess1-RO

there has been a lot of organisation which is good. at least it means less stress.

im feeling very alone though. ive tried reaching out for help but they all just tell me I need to make changes myself and its unhelpful. no one wants to hear whats happening for me so I guess its better to just be quiet.
its a lonely place to be, but I should be use to it by now.
 
 
 
 
 
Jess1-RO
Jess1-ROPosted 30-09-2019 01:39 PM

Hi @scared01,

 

It sounds like your planning has meant you have a well thought out structure for you family, the animals, your caree, and most importantly- yourself! 

 

The last few weeks seeing the amount of things you had to organise and manage, I just want to say how amazing, resilient, strong and capable I believe you are! There were so many things beyond the health aspect that you have managed, and while it may feel like that weight is still there, it sounds like the plans you have in place have everyone else sorted. 

 

Now that you have planned and organised all the big things on your list, I hope that you get the opportunity to put your responsibilities aside for the time you are in hospital and focus on you and your health. You are equally as important Heart

 

We will be here for you too if you need to check in Smiley Happy I met with the community manager for Carers Gateway's online forums a few weeks ago, and I want to echo the suggestion of checking out that forum too! 

 
 
 
 
 
scared01
scared01Posted 29-09-2019 09:38 AM
Morning @Taylor-RO
It is a lot to have to pay for a majority of this myself. ive decided that I wont be paying for extra expenses the family want to do or most of their meals. im shouting dinner on the first night but beyond that they'll have to sort that out themselves, ive already paid for the hotel rooms (both of them- mine and theirs) which was over 1000, my own nursing care afterwards for an overnight stay, brought all the feed for the pets and put money aside for those people coming to feed them for me while we are away. also sorted out my caree as well and anything they'll need while im away including care. so the only thing left is meals, fuel and other expenses however im working out just what ill need now.

it really is difficult, it feels like I have to go through this alone. im use to it and sometimes its comfortable that way but it would be nice just to have abit of help finding my way around one of the biggest hospitals in nsw actually.
um not yet with the medications, im only allowed to use it for 4 days then give it a break then 4 days and so on. it may take a little time to set in properly or enough just till I try the other more longer term one.

yeah it is good to have some advice from carers who have been in a similar situation or may have ideas well. that may be helpful in working out the best way forward too.
 
 
 
 
 
Taylor-RO
Taylor-ROPosted 29-09-2019 09:25 AM

Hi @scared01, I really agree.. the progress is lovely to see! Such a great way of doing it.. I never thought about doing something like that. It is amazing that you got a loan - I remember that was causing you to worry a lot. It sounds like you have had to get so many bits and bobs organised and a loan relieves some of the pressure. It is a massive deal that you are paying for a lot of this yourself!! Heart Definitely something to be proud of.

It is difficult to be in a situation where you don't know where to go or what to do.. it can add to the mix of feelings. Hopefully some staff can help you find your way... or your mum and stepdad end up helping you. I am sorry that you feel like your family doesn't care though. I can imagine myself wanting my family to be there as soon as I get out. It isn't very comforting or reassuring to feel like you are not a priority.. but hopefully when it comes to the day, they become more flexible and supportive. Have you noticed any differences with the medication so far? Smiley Happy

 

I am glad the Carer's Gateway Forum might be something you can use! Like I said, you are always most welcome here. I just know that it can be really helpful to speak to people dealing with similar situations.. plus they have all kinds of information and forum topics too. 

 
 
 
 
 
scared01
scared01Posted 28-09-2019 08:56 AM

hey @Taylor-RO
its good to be able to see the progress rather then just putting it into a savings account and trying to work out if its enough etc. I was lucky enough to get a loan which was a big help in getting my 2 major expenses out of the way, new car tyres which was a little urgent and get a few things like some icepacks and other things to take away with me when im discharged.
I had a look at the websites you linked me too, the UK one is for residents of the UK or more benefical to those who live their as all the resources are for that country. but I didn't know carer gateway had one so might be worth having a look into.

ive always been worried and scared about my upcoming surgery, theres so much that's out of my comfort zone like being so far away from home, in an area I don't know, in a hospital I don't know and I have to try and navigate it myself for pre-admissions as I have to leave at 430am as the appointments at 7am and might be there most of the day and cant expect a young sibling to wait around all day.
im hoping that my mum or stepdad will help me find my way to the surgical ward though but by the way they keep talking they are pretty much dropping me off and when THEY are ready to pick me up then they'll come. (ie if the nurses say im ready at 1pm and they aren't finished doing whatever till 5 then they aren't coming till 5) I guess in a way its ok as itll be quiet and still monitored while im there but at the same time it also feels like they don't care that much. they have a few activities planned for the day before and the day of my surgery as my step dad has to leave the day after for work but mum will take me home. 

 

so far the day has been ok, except the pain that is associated with my new diagnosis but I have some new medications to try out while im waiting till after surgery to try another treatment method 

 
 
 
 
 
Taylor-RO
Taylor-ROPosted 27-09-2019 10:59 PM

Hey @scared01, I love your idea of sealing envelopes. I would imagine that to feel very satisfying! It sounds like you have got a plan for saving money, especially as it gets closer to the surgery. I can't believe how far you have come with getting everything prepared and planned for your surgery. You must have been working so hard to get the money organised as well as making everything come together. You make a really good point about the services available for carers. I had a look and I found this website that has some forums for carers which are based in the UK. You may not have to be a UK resident but the Carer's Gateway also has a forum here. You are of course most welcome to post on ReachOut Smiley Happy

 

It sounds like from some of your previous posts, that your feelings about the surgery have changed? Did you feel comfortable expanding on that? Heart No pressure as all of this can be a very private and sensitive topic to talk about.

 
 
 
 
 
scared01
scared01Posted 27-09-2019 04:51 PM
hey @Bre-RO
I am super nervous and worried about my surgery. its coming up so fast now. most of the major things are done now but I still have abit to save for as well. every time I save to make it look better I have a few envelopes and once I have what I need for that specific thing I seal it up e.g petrol so far ive sealed 3 envelopes but still have another 3 to go. ive only got till next week to get it all sorted but if I don't the day I leave for the surgery (so the day before) its my pay day anyway so I can put off a few of my usual payments to bills if I need then catch back up again.

ive had a look at carer gateway, they do have some good resources but everything like counselling or just to talk to someone requires me calling and im not comfortable in doing that. they really need to make some helplines for carers that don't require ringing up.
 
 
 
 
 
Bre-RO
Bre-ROPosted 27-09-2019 11:48 AM

Aw @scared01 you have a lot on your plate. How are you feeling about your upcoming surgery? 

 

It's good to hear that you connected with some people that have the same condition as you. Sometimes it's just such a relief to talk to people who really get what you're going through.Heart 

 

I can see how it makes it hard for you to get respite if your caree wants to be cared for by family. It sounds like it's difficult for you to talk about how you feel at home, without it being taken the wrong way - that must be really difficult to manage. How do you respond when your caree reacts to you asking for help? 

 

Know that you are safe to speak freely about your experience as a carer on the forums Heart Your feelings are valid. Also - just wondering if you've ever heard of or used the Carer Gateway

 

 

 
 
 
 
 
scared01
scared01Posted 26-09-2019 07:51 PM
hey @letitgo @WheresMySquishy
thanks for the responses, sorry I haven't been online much. with a surgery fast approaching, some family issues, and the latest news I haven't had much time to think.
@letitgo - im not to sure a letter would be helpful, its a really weird feeling but I did speak to a few online on social media with the same condition as me and it was helpful in trying to accept it and to know how im feeling is quite normal too. I just have to let the emotions flow I guess and just adjust as I go..

@WheresMySquishy umm, my caree is very hesitant in getting help even at home unless its from family. he thinks that me asking for help means he will be put into a nursing home or that I don't care about him so it puts me in a really hard position. I thought id see how I just giving a little meantion of it- not saying respite but just getting some help and it didn't go well at all.
so stubborn and in denial atm I think..

 
 
 
 
 
letitgo
letitgoPosted 21-09-2019 10:11 AM

Hey @scared01 I'm so glad to hear that you managed to get a bit of sleep last night Heart

I'm sorry that you got some heavy news at the appointment 😞 It sounds like it'll take some time to adjust, and I hope you're able to give yourself that time, and to grieve if you need to. Maybe write a letter to/about your loss? That's something that helps me...

Thinking of you Heart 

 
 
 
 
 
scared01
scared01Posted 21-09-2019 08:46 AM
hi @TOM-RO
I did get some sleep last night which was good, mostly on and off but I got a few hours after 3am. I was hoping that maybe yesterday was some kind of dream but unfortunately it isn't and now its changed my mindset about a few things. what was once my decision is now something I cant do anything about, it wont happen now. 😞
I don't really know what to do with myself. at this age its hard for me to see a reason this would happen esp this early in life.
 
 
 
 
 
scared01
scared01Posted 19-09-2019 06:31 PM

Im not really coping that well tonight. my family makes me so damn nervous I get beside myself. I feel like I cant do anything without them noticing or critizing me. everytime I do something its why am I doing that or why am I selling this or that like I have to answer to them all the time. it makes me want to hide away and delete all social media accounts. I feel like im always being spied on by them. im an adult, why do I have to answer to them esp when its teenagers and younger kids. 

 
 
 
 
scared01
scared01Posted 04-09-2019 08:29 PM
never mind its not important
 
WheresMySquishy
WheresMySquishyPosted 27-07-2019 07:15 PM

@scared01  That sounds so difficult. Smiley Sad I remember being tested for cancer a few times and it wasn't fun at all. Once, I was told that there was a possibility I had leukemia, but thankfully I didn't. It's so hard not knowing what is wrong. It's almost impossible not to worry about it. All we can really do is trust the doctors and the process.

If you are being tested for a gynecological kind of cancer, it could reassure you to know that having symptoms doesn't usually indicate cancer in young people, or at least that's what my gynecologist told me when I was going through some tests. Unfortunately, the tests can be pretty invasive. There are also some things that can look like cancer but are benign (which is what happened to me), and the only way to tell are through biopsies.

I'm praying for you. Heart

 
 
scared01
scared01Posted 27-07-2019 07:23 PM
im glad your tests came back clear @WheresMySquishy i can imagine how you wouldve been feeling. ive been put on the urgent list and see the specialist in 2 weeks then go from there.
 
 
 
WheresMySquishy
WheresMySquishyPosted 27-07-2019 08:06 PM

@scared01  I think it's a good thing that you are being seen quickly and your concerns are being taken seriously. Generally, the earlier that things can be treated, the better. I was a private patient so there was no waiting list for me.

Another thing my gynecologist told me as I about to have surgery was that if he found something, he would tell me my options. There are lots of different treatment options now depending on the extent of the cancer. Medicine has come a long way with these kinds of cancers. So if worst comes to worst, the prognosis might not be too bad.

 
 
 
 
scared01
scared01Posted 28-07-2019 07:13 PM
why cant i just be ok even for a few days. its hard to know im failing at everything i do 😞
 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 28-07-2019 07:22 PM

@scared01  I'm so sorry you're feeling so down. Going through your own health issues whilst also being a carer is so hard. Smiley Sad I don't think you're a failure. I think you're pretty resilient. Heart

Is there anything that's made you feel this way that you wouldn't mind sharing on here?

 
 
 
 
 
scared01
scared01Posted 29-07-2019 02:09 PM
hi @Jess1-RO long time no see Heart
 
 
 
 
 
Jess1-RO
Jess1-ROPosted 29-07-2019 02:28 PM

Hi @scared01,

 

I am so sorry to hear how hard things have been- I am just catching up on posts from the weekend Heart I can imagine the financial stress on top of worrying about your physical health would be really overwhelming. Saving up for surgery can be challenging- have you spoken to a doctor about accessing public health care if the cost privately is expensive? Are there are financial support options you can access to get the healthcare you may need? 

 

What have you got planned this week to keep you busy?

 
 
 
 
 
scared01
scared01Posted 29-07-2019 02:40 PM
its ok @Jess1-RO its nice to just see you around Heart howve you been?

my surgury is through the public system so the operation itself isnt an expense however to get what i need done i have to be spent to another major hospital where they specialise in what i need doing the down side is its over 2hrs away so my big expense is things like hotels, and transport costs and those sorts of things. if it was close to home it wouldnt be so bad because i wouldnt need to book hotels and things. i could just come home when i was discharged.

i have lots of phone calls, appointments, horsing around and cleaning up to do so thatll keep me busy but it doesnt help keep me mentally stable. just gives me something to do i suppose
 
 
 
 
 
Bre-RO
Bre-ROPosted 31-07-2019 10:24 AM

Hey @scared01 

 

It sounds like there's been a lot going on for you. It's never easy having health challenges on top of financial strain. Thank you for reaching out and @WheresMySquishy your suggestion around patient accommodation is really helpful. Heart

 

I'm just wondering if you receive NDIS at all? If so this could be an avenue to explore for some financial assistance. There are some other options I've also thought of that may help to alleviate the stress you're going through. 

1. Apply for a centrelink loan. This can be done on the mygov website and there's a step by step guide here on how to get an advance payment. 

2. In regards to transport costs I would encourage you give The Salvation Army a call - they provide financial assistance and the number for the emergency relief can be found here

 

Speak to your local doctor and they also might be able to suggest some options for you. 

 

Please continue to lean on the community while you're going through this difficult time. Heart 

 

 
 
 
 
 
scared01
scared01Posted 31-07-2019 12:13 PM
hi @Bre-RO its nice to meet you

im not on NDIS but it was a good suggestion. I have already done my centrelink loan and i dont qualify till later in the year now i think after the operation unless i can pay it off earlier.
thank you though ill take at the salvation army and see what they have avaliable. they may have other options besides transport too.
 
 
 
 
 
scared01
scared01Posted 01-08-2019 12:34 PM
im really struggling today. i dont know how im going to get through all of this. i just dont know
 
 
 
 
 
TOM-RO
TOM-ROPosted 01-08-2019 01:21 PM

Hey @scared01,

 

I'm so sorry to read how difficult things are.  It sounds like there are so many stressors right now. I just want to check in to see if you are safe?

 

Is there anything going on today especially that is difficult for you?  If so, do you need to speak to someone about this?  If so, places such as Headspace have phone and webchat counsellors to help you.  Here is a link.  Even though you are going through so much, just opening up to a counsellor is often helpful.  Of course, we are here for you as well Heart.  So please continue to reach out :). 

 

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