Oncology in the bush.

jan61

so I have completed the axillary clearence and hopefully will get the drain out tomorrow. The oncology dept just rang and I have my first appointment at Orange base with Dr Lauren Bradbury on the 5/03/19. I will be signed off from the surgeon the previous week. 
The kilometres are bad. The driving stressful. I will be glad when treatment gets sent to Parkes.

I would like to ask what I should expect at this first appointment ?

Sister

From my experience, the first appointment with the oncologist is to discuss your cancer, scans and treatment options and for him/her to recommend a plan.  As my plan was for chemo and I was in agreement, my chemo treatment was booked in then and the nurses discussed the finer detail of what I could expect.

Zoffiel

Hi @jan61
Distance is something that most people don't have to deal with, so I'd suggest you really focus on how your remote circumstances are managed. Don't get too wrapped up with the actual poisons, they are nasty regardless of where you live.

 You need to figure out how you deal with unexpected complications, what support services are available and how you can access them. Find out who the social worker is. You may not need them, but if you do, don't be stuck starting from scratch. Find out about accommodation and transport subsidies and which hospital is best if you have an issue and where you will be sent if something happens that can't be dealt with at your local.  

Cancer is a bit like pregnancy in remote areas, some people just chug through it, some unexpectedly become high care and that is where a bit of forward planning is useful.

arpie

From what I remember of my first appointment - we chatted about my surgery, scans and treatment options (including whether I wanted to take part in any clinical trials that were available) and was given the 'percentages' that my treatment was going to give me to prevent a recurrence.

I am not so much in the 'bush' @jan61 - more 'regional, up the NSW mid coast'.  

The closest radiation available to me was at Port Macquarie (1.5hr trip each way.)  Port Macquarie Base Hospital has a fully kitted out 'Rotary Lodge motel' attached to the hospital for 'out of towners' like us. For a very nominal fee, I was able to stay there with my husband for the full 4 weeks of radiation - so I didn't have to do the driving (as I am the driver in the family.)

We could duck home on the weekends (or stay if I chose to) and altho the radiation was daily - it was still a bit of a holiday (sort of!)

The Cancer Institute is just a 2 minute walk from the Rotary Lodge - which makes is SO easy to 'do'.  The manager of the Lodge is just superb.  A really special lady.

There are some lovely Rad Oncs at the Cancer Institute (mine was Dr Carmen Hansen) - if you could get your  referral to THEM - you wouldn't have to do the daily travel, and have a bit of a break with the family, which should make it that little bit easier to endure.

All the best for your appt with your surgeon and ongoing treatment xxx

SoldierCrab

@jan61
Does Forbes have an Oncology unit for Chemo?
Or will you need to travel to Orange 
Sue Kuter is the Orange Base Hospital BC Nurse 

HI! I'M SUE KUTER.

I'M BASED IN Orange.

I support patients and their families in the Orange and Cabonne regions.

I've been a McGrath Breast Care Nurse since 2011, a registered nurse since 1982 and I also have a Graduate Diploma in Breast Cancer Nursing.

The most important thing I do for my patients is ensure they are fully informed so they can be empowered to make decisions about their health and treatment.

Every day I make a difference by following my patients through all aspects of their treatment through breast cancer. Exercise is an important part of the treatment plan for women with breast cancer these days. I have put together a calendar of weekly exercise classes for women who have had a diagnosis of breast cancer to attend and I also attend these classes. The classes provide support, companionship, exercise and an opportunity to build on their confidence.

Email  susan.kuter@health.nsw.gov.au

Facility Central West Cancer Service

Facility Address  Orange Hospital, 1530 Forest Road Orange NSW 2800

Phone Number 02 6369 3968

Days Worked  Monday, Tuesday, Wednesday, Thursday, Friday

Parkes is the next closest BC NURSE 

HI! I'M DIANNE GREEN.

I'M BASED IN Parkes.

I support patients and their families in Parkes, Forbes, Condobolin, Trundle, Tullamore, Tottenham and Peak Hill.

I've been a McGrath Breast Care Nurse since 2011, a registered nurse since 1989 and I also have a Masters in Breast Cancer Nursing.

The most important thing I do for my patients is to help to breakdown treatment options, and make sure they are aware of the services available.

Every day I make a difference by providing education and support in a compassionate manner during a time of turmoil. Medical interventions are sometimes limited in a rural community, but through the McGrath Foundation, I can fulfill this need and hopefully reduce the burden of isolation felt by many.

Email

dianne.green@health.nsw.gov.au

Facility Parkes Community Health Care

Facility Address Lachlan Health Service-Parkes Hospital, 2 Morrissey Way Parkes NSW 2870

Mobile Number 0428 535 843

Phone Number 02 6861 2552

Days Worked Monday, Tuesday, Thursday, Friday

Can you access Community Transport? 

Orange has a lodge attached to the hospital  call Sue and ask her about it ... 

jennyss

Dear @jan61,
Agree, get in touch with your breast care nurse ASAP. You may be able to discuss what the treatment options are likely to be before you see the Oncologist. I live near Dubbo, and was able to have chemotherapy in Dubbo, followed by radiotherapy at Orange. My breast care nurse was wonderful, giving me information and support. She also helped me get support from CanAssist (fuel voucher) when I was travelling to Orange, and get help from IPTAS (Isolated Patients Travel Accomodation Support). I stayed at the Western Cancer Care Lodge during the week. It was wonderful! Keep in touch and best wishes from jennyss in Western NSW

kitkatb

Hi @jan61 could you possibly find out if you have telehealth or teleoncology in your area.  My Oncologist started it up here in remote and rural areas of Qld and is really passionate about it as he truly believes that everyone deserves the same quality of medical service as those living in the city and also to eliminate the amount of travelling required by patients for chemo.  It is all linked to the main hospital and monitored full time by Doctors through all processes and  rural hospitals have someone who has had specific training in all areas of teleoncology and watched over by monitor the entire time. 
Might just be worth finding out as could save travel for you.  Good luck with everything.xo

jan61

 I’m just having a whinge. Woke very 2 hours in pain with a mouth like the bottom of a bird cage..... Di Green ( Breast care nurse ) will be here on Monday. App with the surgeon Tuesday. Had a meltdown with the old boy which doesn’t help. He tells me he is scared too. The nerves are very much on edge. Overtired, stressed and feeling guilty. No reason why.  

I did did manage to fill out the Iptaas forms. That’s a terrible website.

kmakm

Good to get the whinge out.

I suffer from that feeling guilty crap too. It's such a stupid emotion! Useless in this situation.

It sounds like the two of you both need to cut yourselves some slack. Be gentle with yourself, be kind to yourself. Tell the old boy to be gentle and kind to himself. Tell each other your fears, name them, and then metaphorically throw them in the river and watch them float away.

Then have a little of what you fancy, toast the day, and tell each other your hopes, and make a plan to do something nice when all this is over, something to look forward to.

Maybe you can both check out this website:

https://www.otisfoundation.org.au

I've been to one of their properties and it was wonderful.

If  your chap is open to it, maybe he should read this:

https://www.bcna.org.au/understanding-breast-cancer/talking-to-family-and-friends/information-for-partners/

You'll both feel better after seeing the oncologist and there's a plan in place. Big hug, K xox

Beryl C.

jan61 Meltdowns are very ok! The very fact of being diagnosed triggers considerable stress - recognise it for what it is, ie, a normal response. Isn't this discussion list gold? Make sure you take someone with you to all appointments - i have a friend who is very calm, doesn't miss anything and asks for clarification when I don't even know I need it. I agree with mmakm - you will feel better when you have more information and there's a plan in place. Hugs,x Beryl C.

jan61

The final pathology is in ... a total of four positives out of twenty four nodes on the left and micromets in one on the right.

and then we wait again lol. At least the appointments are getting closer together.

and yes this discussion list is gold. Thanks everyone.

Zoffiel

Shit bags @jan61. Was hoping for an all clear for you. Appointments getting closer together is good, I guess. If you must have appointments. Good luck MXX

arpie

Thinking of you xxx @jan61 .... they'll be having a big team meeting to discuss your treatments ... 

All the best with your appointments xxx

Sister

Bugger! @jan61 But at least you know what you're dealing with.

jan61

So I’m really struggling with what happened yesterday. 
I  was day 10 of cycle one. Went up to the local district hospital to get my blood work done. Wandered down to ED to see if someone could check my portacath. It’s been painful. I can’t turn my head easily. I have swelling and bruising. Just doesn’t feel right.
The nurse who answered my query looked confused.
There is no dr available. None on call or on duty.

She called up one of the chemo nurses that was working that day who took one look and said... that’s not right. Maybe an exray? I’ll ring the oncology in Orange and see what they say. It’s 1130 and I have been there since 10. 

My oncologists day day off so they have spoken to the BC nurse at orange who said an ultrasound... could be thromosis. I toddle down to medical imaging. 1230 and I still haven’t been seen. I’m starting to try and catch the eye of Russell the stand in ultrasound guy.... Jan’s waving over here!
its now 1300 .... Jan’s tired getting a bit dry and getting crabby. Yay Rusell appears! He asks me what they are looking for because it hasn’t been listed on the request form written by the nurse. I said dvt, thrombosis. 
He tried to brush that off but started to do the ultrasound. As soon as he put the gadget on my neck.... there it was. An 8 cm clot in my jugular going down to the sub clavicle.  He had to swallow his words...
it’s now 2:30....  no one knows what to do. They try to contact an oncologist but are put onto “ blood dr”.... who is going to prescribe 50 mg Riveroxaban BD. Umm what? Someone points out that 50mg is a huge dose. Ok the mistake has been picked up.... but I’m still sitting in ED.
3:30. Kids coming in. I’m going home. Ring me when it’s sorted I’m happy to come back up. They ring and ask me to come up at 4:30 and I do. They are still waiting on the script? WTF? I point out the chemist will be closed in 1/2 an hour...... 

i finally get get the scripts from an unknown dr. He seems to be a part of the rural health something or other. Where the hell is Quirindi? And two doses until the chemist opens in the morning. 

Wowzas. I am buggered. This is stressful. I am not feeling confident.

Blossom1961

@jan61 Wow. I wouldn’t feel too confident either. It sounds like they got it right in the end but what a pain. I think a me day is in order for you my lovely. Anywhere near you do hand and foot massages? A bubble bath would be nice. A block or two of your fav chocolate. Whatever you want today you should have. Big hugs.