Today was D Day

MelV83

Little update from me- I finished up at work today. My principal said the right words but with absolutely no warmth, and I spent the time after I told her scrambling to get relief notes written for the rest of the year and photocopy resources etc.

I spent most of today in tears and feeling like I was leaving in shame with my tail between my legs like I had done something wrong. There was no farewell from my school at large, however my learning team was very generous and gave me a gift card to help with anything I might need, and we had hugs and a photo together before I started packing. 

My students had mixed reactions, but mostly supportive and some were genuinely very upset (some of them I have had every year for 3 years for either maths or science) and many flooded me with cards, little pictures they drew me and little notes to wish me well. I’m going to put them on my wall to keep me inspired. 

And lots and lots of hugs today- I hugged them while some of them cried, and some of them made me cry when hugging me goodbye and telling me I was the best teacher they had and lots of little inspirational quotes. So while my leadership didn’t care and didn’t say goodbye- the people that mattered at work did and I felt the love from multiple staff and students who all gathered to hug me goodbye at the end of the day and wave me off. 

I bawled the whole way out the gate. 

 

Chemo starts tomorrow- 4 fortnightly rounds of AC (red devil) and then 12 x weekly rounds of paclitaxel (I hope I spelt that right). I have to have scans right after the AC is over to check for the response. And if it’s not shrunk enough, I may have to have more of the red devil. 

Is there anything I should know, or take with me to the hospital tomorrow? I have read the patient information sheets about the drugs and side effects, but in terms of more what are people’s “go-to” for their time in chemo? 

Katie46

Hi @Melv83 all the best for starting your treatment tomorrow. 

I took a book, and a blanket as the aircon up here can sometimes be cold. There was a TV in each bay, so I had that to watch as well. 

Wear something comfortable, but with easy access to your arms for the IV. 

arpie

(Sorry, I thought I'd posted this last night xx)

Hold your head up high, my friend  xxx. Those kids will always remember your wonderful teaching for decades to come @MelV83 xx  I am so sorry the principal showed their true colours today - but glad the other staff and kids have been supportive of you with big hugs and tears  xx

Re taking to your chemo sessions tomorrow ...  some take magazines (difficult to concentrate on books/stories) or Suduko/puzzles ... some take their ipods & headphones so they can 'zone out' ..... some take their favourite nibbles .... tho you should be given morning/afternoon tea and lunch (if you are still there during those 'breaks'.)  Some even knit or do their craft stuff.    

As @Katie46 says, loose comfy clothes that don't have long tight sleeves.   If you end up getting a portacath, a TShirt with some zips added makes it very easy to access the Port.  (My husband used these for his treatment.)


Take care & all the best xx. If you feel crook at any time, make sure you tell the nurses immediately.  They'll look after you xx

MelV83

Yesterday was the most dramatic first chemo- definitely was hoping for a calmer experience! I had 4 failed cannulas with the last into the only good vein I had which still needed to have its drama moment and need to be held by a nurse’s hand the whole time. We ended up securing it with the tourniquet but it was a lot. Then I needed an emergency ecg as my heart went haywire so looks like we need to try a different mix of pre meds before dose 2. Apparently my reaction was a mystery to the on call oncologist. 

Guess I proved to the staff why the port is the better option…

Nausea has been pretty bad today even with the meds but I’ll chat to the oncologist next week to see what the plan is.

Pictures are of the setup in case anyone else has trouble with the drip rate in their veins during chemo- it wasn’t on tight but out just the right amount of pressure, so hopefully it helps. 

MelV83

arpie

Oh my gosh  @MelV83- you really kept them on their toes, eh?   I hope they get those pre-meds sorted so you don't get those heart issues again!      I am so sorry you had trouble getting the cannula in too. 

How many infusions are you having? .... If the vein thing looks like becoming an issue definitely look at getting a portacath - it is used for taking your blood as well as giving you the chemo infusions - When do you see your Onc again?  It is usually put in under a 'twilight' sedation. ..... Before each chemo, A pain killing patch is usually put on before you get there, to deaden the area for the 'prick'.   My husband had it & found it much better than th 'picc line', which is the alternative if veins are tricky to find (his got an infection.)

When is your next infusion?

Take care & big hugs xx.  Drink lots of water over the next few days, to help flush it all out xx. Sleep when you need to, eat when you can xx. It doesn't matter what you eat - so long as you do - get stuck into all your favs xx

MelV83

@arpie I have the port insertion booked for the 5th, the day before my second infusion. I’m going under general since it needs to go in on the left. Apparently that’s very quick and the wait list is usually 3 months. Thank goodness! The bruises today are literally the darkest purple ones I have ever had. I have 3 more of the AC before scans to check if we need more. If not, then I start the 12 cycles of paclitaxel. 

The metallic taste is truly gross- kept having that through the infusion and it persisted overnight as well. Had the heart pounding again today that felt like I’d been running whenever I did anything other than sit, but I had some things to do today so I kind of did them in stages with rests in between. 45 mins of rest laying down seemed to do the trick. I get bored doing nothing so this felt productive but still balanced. 

My kidneys have definitely been working because my urine is already looking normal again. I had a little nap this afternoon so hopefully I sleep tonight lol!

Katie46

Hi @MelV83, oh wow 😮

From someone who has small and wriggly veins, and who stubbornly persisted with the canula the whole way through, you've made the right decision with the port. 

Take it easy and look after yourself.

Tri

That is an epic first experience @MelV83 ! Glad to hear you’re getting a port in. Hope you can take care and rest up as you’ve been through a lot. Not sure if you’ll need it but I used to get a bit dehydrated and discovered hydralyte was a useful thing to drink a couple of times a day two or three days after treatment; it gave me a bit of pep.

MelV83

Just a little update from me:

Port was inserted under general anaesthetic this morning. No pain at the port site but my neck has been really sore, kind of like I pulled a muscle all day. Slept away the afternoon (and naps are definitely becoming a regular thing now that I’ve started chemo), but was absolutely ravenous when I got home so made sure I ate a good lunch, since I likely won’t be feeling hungry tomorrow.

My hair has started coming out thick and fast- I had thought about shaving it but my scalp is so sore and sensitive that it hurts to even brush my hair so I didn’t want a hairdresser to be less than careful and hurt me. So instead of brushing my hair I just run my fingers through my hair every so often and come out with clumps. I’ve probably lost about 2/3 of my hair now.

In terms of how I feel about that I expected to get a little upset about it but looking in the mirror things look relatively normal still, less thick so maybe that will happen. In the meantime I’m kind of fascinated with the process and how some parts of my hair are definitely not ready to go and yet other bits fly
out the second I touch my head. 

Both my kids asked if they could keep some of my hair to touch when they felt sad and so I made a couple of wefts for them to keep. This has helped them deal with the first real physical change- my son is autistic so this gives him something tangible.

Second chemo tomorrow and my oncologist wants to make the dosage rate really slow since my heart went a little crazy last time and mystified everyone. She wants to make sure it is definitely an allergic reaction before she upgrades my dose of steroids. It’s a hot one here in Adelaide tomorrow so hopefully it’s comfortable and less troublesome to have it with the port in. 

arpie

xxx  Thinking of you xxx. Do you have some nice head gear to wear ....  tho now it is summer, it may just be too hot to wear them?  Often the Oncology centre has some that have been donated, to try on and/or keep?

That's a Lovely idea re your hair for the kids xx

All the best for tomorrow's chemo - maybe ask about the 'pain killer patch' to put on the port site before they insert the needle, as there is a little 'prick'  ... I used to put one on for hubby before his chemo. (They gave me a few, so I could put it on before we got there, so it was already numb.)

take care & hope it all goes smoothly for you this time xx

Katie46

@MelV83 I hope your chemo went better this time. 

My scalp was sensitive in places when my hair started coming out. I got my husband to buzz cut it, and it was more comfortable. 

Abbydog

I'm terribly sorry for your diagnosis. It is quite similar to mine.
I was 61 on diagnosis. There is a sub-group on this BCNA site called 'Young Women"
This could be helpful to you. Just click on Groups at the top of the screen and ask to join.
As a contract worker, do you have Income Protection within you superannuation?
It could be worth asking.
There is also a group in Adelaide that you can attend events in person. Eg some morning teas and lunches.
You may have already been told of it.
It is via Facebook and called 'Adelaide Breast Cancer Friendship Group'

Tri

hi @MelV83 thinking of you today and sending you lots of virtual hugs. 🌸🌻Glad your procedure to insert the port was relatively uneventful, they are good things for treatment day. I remember being surprised a few days later how tired I felt after the port procedure, so take your time resting up if that’s possible, especially with having had your treatment in quick succession.