Waiting, waiting, waiting + frustration

ruralmum2

I’m sorry, I’m really making the most of the solidarity here. It’s been almost 3 weeks since my diagnosis (43yr old, Grade 2, ER+ PR+ HER- mixed lobular/ductal) & I’m usually a super patient person, but I’m feeling quite down.

 I go for my PET scan & MRI tomorrow morning, early. I’m then seeing the surgeon again next week for hopefully a bit of a plan for treatment. I’m sick of not being able to plan or commit to anything. I’ve kept working as much as I can, but I’m getting sick of being told about friends of friends who have died of BC, or at the other end that ‘it’s so treatable & nothing much to worry about’. 

This morning I had my first real big cry, which made my 10yo daughter cry too, which made me feel worse. I cried because she has a grotty cough & so we had to take her with us for the 4 hr trip to our nearest imaging place & not send her to school or expose our neighbours to her germs. I cried because my oldest daughter had to stay behind. I cried because my oldest daughter turns 13 very soon & wants to be excited & plan her birthday, then she flips & apologises & says ‘don’t worry about getting me anything Mum’. 

I really know now how it feels to feel like a burden. I told my husband I should have just gone alone this trip,  but he insisted on coming to keep me company, which I do appreciate. 

I’m so lucky really to be surrounded by so much love & well-intentioned support, but I think reality is really starting to sink in. I’m already sick of doing the 8hr round trip for the nearest cancer care, yet this is only the start. 

How do I decide what surgery is best? I don’t care much about my appearance, & I think a mastectomy & going flat makes the most sense, causes the least disruption to my family, but I feel quite sad still about losing my breast. 

Ugh. Anyway, no need to reply, just needed to get this off my chest. 

Blossom1961

@ruralmum2 You do need to be kind to yourself as your body has betrayed you and that is traumatic. I dont have young children anymore but yours sound amazing. Is there another family member or friend who can do the organising for your daughters birthday? My stress was so high I was useless. My adult children and husband did everything for me and just let me get through it. Sending big hugs. And please, never apologise for ranting if you need to, most of us have, numerous times, so we certainly understand .

arpie

Everything you are feeling is absolutely normal, @ruralmum2 .... and sadly this bloody disease mucks with our brains even more than our body, I reckon.  You can be fine one day & ratshit the next.  
Just try & take each day at a time - try not to get ahead of yourself! Your actual surgery decision will be in consultation with your surgeon ... I went in, prepared to have my breast off - but he reckoned a lumpectomy would 'do it' so I went with his suggestion (I asked him what he would suggest if it was his wife or mother - and it did not change ....) and so far, 6 years later, so good!!

All the best for your scans tomorrow xx

The added distances you need to travel also puts extra pressure on you.  Make sure you get your GP to fill in all the forms for IPTAAS .... you'll need one for each specialist/scan/rads that you need to travel more than 100k for (or a combination of 200k in a month (double check that) if there are lots of shorter trips.

As @Blossom1961 says, your kids sound terrific as does your hubby xx  Great idea to hand the reins over to a family member/good friend who LOVES a party - your eldest daughter deserves it xx

My brother suggested I take a pic of my boob before surgery (in case it wasn't there afterwards ....) so I did, (just in the mirror in the bathroom.)  You could incorporate your hubby in it, as the photographer if you like ... even the girls if you think they are up to it.   I continued taking pics afterwards too, at various stages of the healing etc.  Being regional, I took pics of anything I was concerned about (as my surgeon was 4hrs away) and sent them to him for consideration, between appointments.

Also, please consider chatting with the helpline here, too - they have a wealth of experience & just talking about it will help xx 1800 500 258 - Mon-Fri.   Have you been assigned a Breast Care Nurse yet?  They are another point of call too, for support and/or information. xx. When my husband had his cancer surgery in 2010, she sat in on all our appointments in Sydney, arranged all the ongoing appointments & scans & took a lot of pressure off me - which was terrific.  She was my rock, even after we came home.

Try & keep yourself busy if you can - maybe you need to take some time off work, if you can - spend time with your kids xx Maybe cook up some meals & freeze them, so you (and they) don't have to worry too much about it when you are in hospital and after you get home.  One less thing to worry about later on!    
 I don't have kids & my stepchildren are in NZ - and my husband had dementia, which added to the mix when I was diagnosed .... I blundered thru xx.  My brother & wife took me to the hospital (with hubby) and I BAWLED when I was being admitted to hospital (fear of the unknown, I guess) but once I was in my room I was fine - and AFTER the surgery, it was amazing - the relief was just unbelievable, knowing that 'the beast' was OUT! xx

Have you had a listen to Charlotte Tottman's podcasts yet?  She is a BC specialist Psychologist, who had a double mastectomy & stayed flat - who'd been 'counseling' patients for years - but only realised just HOW debilitating a BC diagnosis is, when she was diagnosed herself!  Start on No 13 (the first of the first series) then go back to No 1 - the first of the 2nd series. She is incredibly easy to listen to & is very calming xx


take care, look after yourself - you need to put YOU first just now - once you've had your surgery & got your game plan, you will just feel SO MUCH BETTER xxx

GinGin

@ruralmum2,  don’t be too hard on yourself. I cried several times when first diagnosed. My cancer is similar to yours ( hormone +, Her2- but I am stage 3, grade 3).Even though I have no kids, I found it hard to plan anything during the period I was going through chemo andRadiation was everyday.  My hubby did everything including cooking as my hands were extremely sensitive when it goes near heat (during chemo). 

Grab all support you can get your hands on esp that you have teenage kids. It’s good that your hubby goes with you. My hubby went to all appointments with me and I felt supported with his presence (like you, I told my hubby I can go alone but he insisted on taking me).

I’ve just completed ‘active’ treatment. It’s almost  10 months since I was diagnosed in July 2023. Hence, like what  Blossom1961 suggested,  find friends / relatives who offer to help. Some of my friends helped prepared some meals and some help with shopping our groceries. 

All the best with your treatment plan. Sending you virtual 🤗 hugs.

ruralmum2

@Blossom1961 thank you for your lovely message. That’s a great idea about my daughter’s birthday, I might ask my bestie to plan something small but special. I’m very fortunate really to have such good kids, who are handling it as best they can. 

Thank you also for normalising my ranting, it certainly helped me feel a little bit lighter. 

Sending hugs to you xo

Tri

Hi @ruralmum2 sending you encouragement and hugs. It’s admirable that you can give voice to your feelings. I was triple positive and am now looking at my last hospital treatment this week after diagnosis 14 months ago. I hear you and agree the phase you’re going through is super challenging.
The idea that my week/months or year ahead had just been upended, without any sense of what the alternative new calendar would be was deeply unfamiliar and unwelcome. It is a crummy phase even though we know it will pass. It sounds like you have a wonderful nurturing family around you- well done you. Sending you good vibes and best wishes. 

ruralmum2

Oh @arpie, you are so right! I was cruising along, trying to be strong for my family & friends the last couple of weeks, but the last couple of days I definitely have felt ratshit!
I’m definitely getting ahead of myself, so thank you, that’s a good reminder not to look too far ahead just yet. 

I’ve got my travel forms ready for tomorrow & am keeping my receipts for accommodation. 

I’ve got spoken to my two nurses, one at my base hospital, and the other is the McGrath nurse for my region. They are both so lovely. I will give the helpline a call too though, I think a chat would be good. 

My gosh, you have certainly had your share of trials these last few years, thank you for being so kind in reaching out & sharing your knowledge & helpful tips. I really appreciate it xo

ruralmum2

@GinGin thank you for your lovely message, I appreciate you reaching out, even though you have only just come through the other side. I hope you continue to feel better xo
I am lucky that I do have such a lovely husband & kids. I also have some beautiful friends who have already been helpful in cooking for us, helping transport the girls to school, gym, etc. and just being amazing company.
Thank you for replying to my rant & helping me feel normal for doing so. It’s such a weird experience to live through. Anyway, your comments have certainly helped xoxo

Locksley

@ruralmum2 take any help that is offered.  Planning kids party, meals for the freezer.  Great your hubby is supporting you.

Great you have your patient transport forms and receipts as things can get expensive.

I also had people tell me of other friends etc they knew had passed away from bc.  I'm sure these people mean well but I would have liked to clock a few of them. I even had strangers in the supermarket ask me if I had cancer as it was obvious I had lost my hair at that time and was wearing a cap. 

I would have a cry in the shower as I was also putting on a brave face for my family. 

The fear in my mums eyes was the hardest so I would keep a lot of my feelings in.  I did chat with a counsellor and let the feelings out a little. 

Sensing you hugs. Xxx

ruralmum2

@Tri - thank you for your lovely message. Gosh, what a relief to be on your last treatment this week. Though I’m sure there will still be a lot of emotions to work through for you. Sending hugs & positivity right back to you & wishing you all the best going forward xoxo 

ruralmum2

Thank you @Locksley for your thoughtful message. I think this week has been a bit of a struggle, just getting a bit sick of people stopping me for a hug & to tell me how they feel about everything. I’m considering skipping the Anzac Day parade this year, as I live in a small town & we all know each other & my news is starting to get around. 

I know they mean well, but I just need a day or so break. Might go to the Dawn service instead, then go for a bbq with my best mates. Thank goodness for them, they are so fantastic & have helped out already in these few weeks. 

Gosh, my Mum is 6hrs away, I have only talked to her on the phone, haven’t seen her in person since my diagnosis. My Dad sounded pretty shaken on the phone though. I’m sorry that you had to go through that, your poor Mum. It would break my heart if anything like this happened to my daughters. 

Hope you’re doing ok now. Sending hugs right back at you, thank you xo

JenD

I have spent a lot of time these last few months reminding myself to breathe since my diagnosis.   It is all a head mess!   Definately draw on what you can (this group, supportive trusted friends, clinic nurses etc) to just get your head where it needs to be to get through each day.  Some days are better than others....  

As you go through scans, byopsys, blood test etc, it is all to give specialist doctors the info to correctly access and advise their recommends...query and question, and dont be afraid to mention anxieties or sleeplessness. 

Small steps, one day at a time, and..... breathe!