Logistics with children/ country girl going to the city

Stone90

Hi BCNA,

I'm currently awaiting my results post WLE/ lumpectomy and sentinel node biopsy. (Dx late Dec 2022) I've been told the whole way along that my treatment will most likely be surgery, then radiotherapy, then hormone blockers. I'll find out this Thursday. 

I have a 4 year old son who has just started Kindy and an almost 2 year old daughter. I'm trying to plan what might be the wisest way to tackle radiation. We live rurally (4.5 hours from the city where I'll go for Rx). Initially my husband and I planned that I would go to Perth by myself and he would stay in Albany with the kids and our large support network of family, friends and church community. I had initially thought this was the best idea, but now looking down the barrel of being away from my babies for a week at time (I plan to come back to Albany on the weekends) I'm not sure I can do it. 

Definitely triggered by my son coming out half an hour after bedtime last night and bursting into tears asking me 'why do you have to go away mummy? I don't want you to go away'. I've told him I have to go to Perth for special medicine to make me strong.

The worst bit is they are currently building an radiation oncology treatment centre 10 minutes drive from my house, but they aren't due to open until April (with no actual date set).

I'm assuming there's some Mums in this community who've faced this challenge before? Is it possible to manage with the kids at Crawford Lodge (with help from Perth friends to babysit during Rx). Or should I just accept it's going to be awful being away from them? I've only ever spent one night away from my son (for my 30th birthday), and never a night away from my daughter. 

Thanks for your collective wisdom. 

Blossom1961

@Stone90 I am so sorry for your predicament. Having children puts this whole BC thing into a different perspective. I concentrated on what was best for me. For you, best includes being with your children. Is it possible to start on to the hormone blockers after surgery and then start radiation once the new centre opens? It may be worth speaking to your team about this. This would also give time for your surgery scar to heal before radio. Sending prayers your way as you consider the next step. Big hugs. 

arpie

SO sorry to see you here & what a dilemma - having your boy so upset would be very tear jerking!  xx   Such a shame the local Rads dept isn't opening a month or so earlier .... 

I was told that I could have had my rads AFTER my holiday to Norfolk Island ... but I chose to have it before, so I could enjoy the break (it was my gift to myself after all the BC stuff. .... so preferred it over with before heading off!)  It's taken a long time for you to get your results already tho .... I had my surgery in Mid Jan & ended up finishing my Rads before Easter - so that was around April, I think .... maybe ask if it CAN be delayed until the local Rads is available? But often they prefer the rads to be done within a specific time frame.

DEFINITELY have your kids with you!

Is Crawford Lodge a part of the hospital where the Rads is being done?  I am regional in NSW & stayed the 4 weeks in the Rotary Lodge (which was fantastic!) instead of driving home 2hrs every day ..... it was just a 3 minute walk to the Rads area.  They are very caring in the lodges & other residents are going thru similar stuff, so are very supportive of each other as well. 

If you all stay at the lodge, is your husband able to look after the kids for the hour or so each day (Mon to Fri) that you'll be having your treatment?  The treatments aren't really 'that long'! 

I also didn't feel fatigued at all during mine - and was with my husband (who had dementia - so a bit like having a child in care) and it worked out pretty well ..... tho he did fall off his exercise bike & cracked a rib, so ended up in ER himself!   

Maybe you would like to join the Young Women's Group?  I am not sure how active it is, but reading the previous posts may be helpful?   You can whack this post up in it as well.  Tagging the mods may help with that .... @BCNA ... 

Check out this thread - lots of general info there too on the rest of the forum (even some fun posts, just for a laugh ...) 
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care & all the best with your results on Thurs xx

Stone90

Thanks @arpie.

Yes Crawford Lodge is the hospital accomodation for country people. But unfortunately it's still a 20-30minute drive from the hospital. Crawford Lodge is on site at another hospital but I'm in the catchment aread for the other hospital.

I'll search throught the young women's group - thanks for the suggestion. 

I'm not sure if my husband can come with me - he's just started a new job 2 weeks ago. Great timing I know. I'm sure we can figure something out. We do have lots of friends from our old church in the city. And I know I can't really plan until I get my results, but just keen to hear some wisdom.

Congrats on being 5 years clear - all the very best to you. 

I hope your husband recovered quickly from the fracture rib - they hurt a lot!

Stone90

@Blossom1961thanks for your reply. I'll chat with the team this week - I hadn't even considered asking that. Thanks for the suggestionx 

arpie

@Stone90 ... what a shame the Lodge isn’t on the same hospital grounds. That would have made it so much easier .... 

Oh dear, yes, the timing could have been better  . ..... It would be wonderful if one of your friends (or a family member) could stay with you at the lodge just to take a bit of pressure off you and the kids (and look after the kids during your treatment ...)  then they could ‘go home’ on Fri pm and hopefully your husband join you for the weekend (or you all go home, but the packing and unpacking is a pain ... and if hubby visits you, it is almost a ‘holiday’!) .... just a thought.  Sometimes the lodge may ASK you to go home on the weekends, but we were allowed to stay the while 4 weeks.

When you get your results, definitely ask them if your rads can start that little bit later .... it would be about the same timeline as mine was ... and it would just make everything work SO MUCH EASIER for you and the family.  Xx. Good luck ... dig your toes in ..... you may even be the first patient there!!  What an honour!  Is there a resident Radiation Oncologist as well at the new centre or do you still need to travel to see them.  Have you seen the Rad Onc yet?

Have you signed up the the PATS scheme yet in WA? You can claim for some of your fuel and accomodation costs whenever you have to travel to appts or treatment .... even if staying with family or friends.  There are forms to be filled in initially by your GP and Specialist/surgeon/Onc ... then, usually you can do it online after that.   We have a private group for Rural and regional patients too .... feel free to join that one and read up on the posts. Xx. Once again, the mods can sign you up to the group ... @BCNA

take care and all the best best for your results.

Make sure you grab copies of all your results and reports (I have a big box to put them all in!) .... and also consider recording your meetings on your phone.  It is so easy to forget what was said ..

Have you been assigned a breast care nurse yet? They will become your first ‘port of call’ for questions (other than us, of course!)

Annie C

@Stone90

Another West Australian here, very remote and treated in the WA Public Hospital system.

Like yourself I always thought that I had to go to the public hospital located in the "catchment" area for my region. You do not!

My initial treatment was in a large inner city hospital in Perth. My follow-up survivorship monitoring is, I suspect at the same hospital that you have been referred to for radiation. That was at my request, as I did not "gel" with the clinic at the inner city hospital.

In June last year I needed further investigation on a suspicious area that showed up on my annual mammogram. My appointment was at the hospital located very close to Crawford Lodge, although I would have preferred an appointment at my surveillance hospital clinic.  

I was offered appointments at the three major hospitals in Perth, so much for WACountry Health's "catchment" areas.

Remember, "catchment" areas are all for the benefit of bureaucracy, not yours.

At your results and treatment appointment present your case that radiation, for childcare reasons and accomodation, be undertaken at the hospital close to Crawford Lodge.

All the best.

Annie