I had my 18mnth oncology review yesterday. Unfortunately my regular oncologist was away and I ended up spending three hours in the car to see a 14 year old minion. I wouldn't have bothered going if I knew that was going to happen. I really wanted to discuss the AI drugs as I am pretty much over them. 14 months on, life is not too good, I didn't think I was getting worse, but in the last month I've developed achilles tendonitis, which on top of persistent neuropathy in my feet is more than irritating. Off to the podiatrist who, predictably wanted to sell me orthotics. That whole performance cost over $200 buck, after the chronic care subsidy. Now I have some shitty thing happening in my 'bad' arm that feels very much like cording except my skin is also so sore i can't bear anyone touching it. That's moved from my wrist upwards in two weeks, if I have to extend my arm I help and it feels disgusting. The minion thought it might be nerve damage but because my arm in now swelling it's off to the lymphoedma crew on Thursday. What's the bet they want to put me in compression garments. I've lost my casual job--a combo of the business not having enough work for me and my being too slow to be hired out by the hour. My brain is porridge and when I could work through things in my own time then bill for what I thought a normal person would I could fudge it. Not when I'm temped out and have to work in someone else's office..to top it all off my blood pressure has become such a concern (wonder why) that I need to wear a twenty-four hour monitor. They really hurt when they need to get up over 170 to get a reading. Sigh. Sorry for the rant, but this is not the way I thought things would turn out.

@Zoffiel What a rough time you're going through. Bugger! Frustrating to be having multiple health issues piling on top of each other. It must seem to be just one mental juggling act after another. And costly! Especially when you're out of work.Be kind to yourself, while all this gets sorted.I'm also fed up with the replacement child minions. I had another one yesterday for my 3-month followup to the three lung clots I had a fortnight after my breast surgery. He said, "The best way to avoid further clots is to stay active. Don't just lie around." FFS - ever tried having chemo, boy?! He chose the wrong person to say that to - ex-swimmer and mountain trekker.Fran x

Hi @Zoffiel - it's really shitty that you're having such a bugger of a time. I don't have much to offer by way of similar experiences - just to reassure you that you have plenty of 'ears' here. As you have helped so many of us, I hope that the opportunity to have a good 'ol rant, knowing that we're all listening and wish we could do more to ease it all for you, will bring you some comfort when you're feeling so crappy! Sending you lots of hugs xxxx

Ahh, they want to hang a thingo around their neck and wear pointy shoes, but it's easier to talk dogma than make a decision. It's all good. Looks like I'm going home with a canula and have Hospital in the Home come out and give me a blast once a day. Yay. No wine though. Phooey.

Well, no clots. Yay. My IV line has finally given up the ghost and I've been sent home with oral abs and will have to monitor the last remaining angry red spot. Back in for review for the next couple of days but short of putting another line in, it's wait and see. Lovely to have that tube out of my arm even though, thank you Lou from ED it was, without question, the most comfortable canula I've ever had.I don't talk to those around me about all this stuff if I don't have to. Thanks to this forum, I don't have to--i can let off steam in a place where I feel supported, but I'm not imposing on anyone. Bless you all. Marg xxxx

@Zoffiel I’m so sorry you’re having a rough patch. Your posts for others are so articulate and understanding and humorous and if any of us could wave a magic wand here we’d be spinning like tops for you. Seeing the minions takes patience and humour, I have my first post chemo onc review tomorrow and know that my regular onc is on long service leave so will likely get a bright young thing so I’ll be relying on the BCN for experienced feedback. I do hope some small things or moments raise your spirits this week, so many women just out of sight are walking with you.

One of those weeks | BCNA Online Network

120 Replies

Flaneuse
Member
8 years ago
It's wonderful to come on here and not feel so alone - in having had old ladyhood zoom up on me without warning, and in feeling low because of discomfort, pain or hating the sight of my chest, and in being doubtful about how long it's going to take until I'm no longer conscious of all this most of each waking hour.
Romla
Member
8 years ago
It should @kmakm but will take time just keep edging forward with occasional treading water - you will get there and old lady hood will fade into the background.
kmakm
Member
8 years ago
Yep, feeling like a fully paid up member of the old ladyhood here. Creaking about, body locking up and tablets galore every morning and every night. I'm hoping that as I'm now getting back into exercise everything will loosen up.
Kiwi_Angel
Member
8 years ago
@Zoffiel isn’t it sad when we consider 4am a good nights sleep - it’s like a sleep in. Glad u r feeling better - going to the gym sounds positive and hopefully something comes from your job applications. I generally feeling like an old woman at the moment - moaning and groaning about all my aches and pains. I’m off to see my physio tomorrow about my lymphodema tomorrow - will still have to wait and see if it is chemo related or not. Hope u have a good day xoxo
Sister
Member
8 years ago
That's what I was thinking the other day - that I've turned into an old lady who exists between medical appointments.

Glad to hear your getting back on top. Good luck on Monday - even if you don't want the job.
Zoffiel
Member
8 years ago
Another day above ground, Steph. Backwards and forwards for reviews, reviews of the reviews, physio, lymphoedema nurse, podiatrist, centrelink ... Who the hell are these people and why are they running my bloody life? The arm still has one manky little spot which I'm hoping behaves itself.

Had my first decent night's sleep (yes, I know it's 4am) so today will be a better day--only one appointment! I feel like one of those old woman who live to go backwards and forwards to medical appointments....oh god, I am one of those old women...
I'm going to the gym this morning after I send off another couple of job applications. Missed an interview on Friday so I can kiss that one goodbye but got another for a different gig, that I don't want, on Monday.
Kiwi_Angel
Member
8 years ago
@Zoffiel - how r u feeling?
Sister
Member
8 years ago
Until they bite!
Zoffiel
Member
8 years ago
@arpie , no. Maybe a burn on my wrist from pulling something out of the oven. I'd also had a splinter in my thumb. Neither of those wounds looked infected. Much focus has been on how i should have been avoiding scratches, chemicals, cuts, burns, bites and stings. Terrific advice, and there is only so much you can do.

I fucking hate hospitals. I've been been concentrating really hard on being pleasant because it is in everybody's best interests. It is very tiring and against my natural instincts. Which, I guess, shows that ferals can be trained.
Eastmum
Member
8 years ago
Brilliant news Marg! So great that you’re taking a bit from this forum as you give so much! You’ve been the voice of reason and support in many a head - glad to see that it’s a place you can let off steam - you are MOST definitely not imposing! Xxxx