2nd chemo - today dec 30

Hi everyone,

Haven't had much to say over the last wee while, so today is the day for a new update!!

Last time I wrote had just bought my wig, which I'm wearing now to see what it feels like & its very hot!! No pics yet - I want to look more glam than I look now!

I worked for the dermatologist in the city again Tue, Wed, Thur last week & that was good, but tiring. Nice to get paid :) A few of us are in a borrowing book club which we call '4 South Africans & a Scot'!! we had our end of year dinner on Mon night at Belaroma in Lindfield, Our other Scot, Joy, brought her friend who is visiting from Glasgow, she came for Joy's daughter's wedding - from the pics it was wonderful!! Daniel, my son, had been in the Philippines & came back on Mon night, but as his dad only gave me 1 hr notice I couldn't go, as I couldn't go to see him off as I was in the middle of the 1st chemo session!!

Last Tue night, some of u may know from my facebook post that I went to Bronte Beach to see the full moon rising on the Summer Solstice and it was an eclipse. A group of us sat on the beach, it was wonderful, so glad Lynda & Evie were there too :) Orna led it with Nadav on the guitar, lots of Israeli songs & healing words. It was just beautiful to be there. The 3 things apparently only occur every 400 years & somehow I don't think any of us will be here to see that lol. From there we went to Orna's place for a pot luck dinner, very yummy.

Fri night after shul, had a pot luck dinner there too - really took it easy on Fri, but decided to have a pot luck dinner myself on Sat night, Xmas night as most things r closed. Dashed to the supermarket on Fri after shul, all the supermarkets closed at 10 as it was xmas eve!! (normally close at 12) & bought what I needed - I had decided to make a vegie lasagne & a salad.

Lynda & I lazed by her pool on Sat afternoon, I had prepped the lasagne before I went, we could have gone to the beach, but was nice just sitting beside & being in the pool.

Thanks to everyone who came - there were 16 of us in the end - who brought wine, food, yummy good things to eat, their company, no dancing lol. After they all left I cleaned up & read till I finished the Girl With the Dragon Tattoo, great read!!

I slept most of Sunday cos had a party to go on Sun night. Tnx for a great party HS. Met people I didn't know before, so rare for me!! Dancing in the family room, karaoke in the lounge room :) Quite a few people, who I did know, hadn't heard my breast cancer story, & I'm not shy about it - I will make a comment about that later. I told most people but not the ones I had no interest in telling!!!

Mon & Tue were public holidays here cos Xmas & Boxing Days were on a weekend, I know you Brits don't get that lolol. Mon night went with Jacqui to see The Tourist, Marilyn R & her sister & brother in law, Barbara & Colin S went to see The Kings Speech. The Tourist wasn't awful about 6.5/10. Tue had coffee with Cheryl R then met my cousins Jo & Baz & my son Daniel as Macquarie Centre to see Love & Other Drugs hmmmm in my opinion - waste of time. Yesterday, Wed, met cuz Shirley for lunch in Bondi Junction, had sushi, it's one thing that hasn't changed in taste for me. I needed a new nighty & Marilyn R had said she bought some in Target the day before, so I decided to get a new one there too. Shirley really appreciate your gift!! :) Susan B came over in the evening with her son Matthew who is in the process of learning to drive & she brought me some yummy pumpkin soup, thanks so much - oh she brought me some more fresh dates, which I kept forgetting to buy!! I need them over the next few days.

Some days I feel crap others I feel fine, just part of the process. My hair has been falling out in crate loads, but not in clumps, it appears to be quite evenly spread!! Today was the 1st day I was actually aware of the thinning. It really is the one thing that bothers me the most, losing my hair, stuck with it!!

So to the 2nd chemo session, Marilyn R came at 845 to take me to North Shore Hosp.Got there at 915, went to the admissions desk, not realising I didnt need to do that lol - could just have gone straight to Ward 12A, will know for next time. Chemo started around 1030!! & finished around 2. Thanks so much for being with me Marilyn. I was feeling just fine, so we stopped off in Lane Cove for a bite & a run around the supermarket. Just had some of that wonderful soup, tnx Sue & some dates :)

Feeling a bit fragile right now, not so much tired as worn out, did have a short nap when I came home. I think I should attempt to have an early night lol, that's not my forte!!!

One of the good things for me is to talk about how I feel, not sure if I really intended to make this a diary, but it's my journey & have been feeling fine most days since the end of the 1st week after the 1st chemo session. I also think my openness about it all helps people talk to me about it. I don't scare anyone off, except those who would never talk about this sort of thing & can't understand how I can!! It's very personal.

Day 4 is on Mon... not planning to feel how I felt on the last day 4, but prepared for it if it does. Will keep you all in the loop.

Looking forward to comments, emails, etc.

Cheers
Debbie xx

wig story

Sorry to all those who wanted to come wig shopping with me - it's been bought, it's home & I'll just tell you the story.

My sister-in-law, Anne, had said let's go wig shopping & because I now have work again tomorrow, Wed & Thurs, today was the day. Jacqui & I went to meet Anne, Shell & baby Chloe in Bondi Junction.

There is a cool wig shop on Oxford St, near Harley Place & thats where we went. I had the idea to get a 'normal' wig and a funky wig. - long blonde curly or straight, etc, sort of thing I'd never have in real life. So I'm in there pointing to this blonde creation & that blonde creation. The assistant went off to get me my heart's desire which when put on top of my head was so absurd & ridiculous we were crying tears of laughter!!!! it was so funny. I even tried another one after that - oh well have to try!!!! so back to reality it was so strange trying on all these wigs, some were ok, some were just so totally awful, then she came back with the triumphant one!!! & its again funny but when its right, its right!! & it didn't take all that long. Have to thank Anne, she surprised me by saying she had decided to buy it for me!!! As it happens private health insurance should contribute something, so I'll take the receipt to MBF  with a doctors certificate. I also bought a black turban, just to have something to put on when Im at home. Say I have a delivery in the morning, can just put that on top to have more than nothing there!! I dont imagine I will sleep with the wig when I'm alone...........

I'm not going to describe the wig, or even post a photo, when I'm wearing it I'm curious to see who recognises the fact :)  all I will say is it's not short & funky hahahaha.

Feeling very good about working tomorrow, Wed & Thur, I will get the bus rather than the train.

Speak soon..... debbie xx

haircut

Hi again.
It's Sunday morn & TG I've been feeling 'normal' since Fri eve. It took so much effort on Fri to shower & dress, blow dry hair & put some colour on my face that I had to rest up!!! However I went down to the hospital & had more blood taken! followed by some grocery shopping in Lane Cove - vital!! Took some sushi to Cheryl R & had a chat till it was time to leave for Shul.

I was sitting in Shul feeling so much better, even though I was flaking that I decided to go for dinner with my friends - had to eat!!! Tnx Chloe! after picking Jacqui up from work Xmas party didnt get home till 1130pm, but I felt back to normal, relief!!!! Sat was good, lunch out with friends, followed by haircut - see new pic, short & funky in prep for it all falling out!!! lololol.

Went to see Nadya, Giga & 101 candle orkestra at Camelot last night. Danced with lots of you :) so even though I went on my own, I knew probably 1/2 the people there. Went to Double Bay for coffee after, its the only place in town where the coffee shops stay open after midnight. Got home well after 2. Very therapeutic listening to great live music, chatting to friends, dancing & more dancing!!

Today planning a quiet day - but going to see that wonderful new movie The Kings Speech this eve - will report on it :)

Debbie xxxx

Day 4 & 5 after chemo...

As some of you may know from facebook, I didn't have the best day yesterday. Was supposed to work again. Got up at 6.30am, felt very odd, but got showered & dressed very slowly & by 8am was ready to go. Told Jacqui I felt very strange, but walked out the door, 1/2 way down the path & turned round & spent the rest of the day in bed....

Fortunately I have 2 wonderful Ruth friends!! & they came round in the evening with a fruit plate & freshly made cake & I felt better than I had felt all day. Tnx for your support.

I was hoping to make this blog only positive, but then that has turned out to not be the reality.

Today I felt marginally better, had lunch out with my lovely sister-in-law Anne, just locally, bought some fresh dates at the suggestion of Corinne, great idea! they are delicious. I even ate sushi which I am pleased to say tasted quite normal, it was the right thing to eat. Suddenly flaked & Anne took me home, slept again, all afternoon & I made it to my psych appt at 6pm.

I was supposed to work for the dermatologist again Thurs & Fri, but just got a call from the agency saying they dont need anyone for those 2 days, in some ways I'm relieved, but in most ways I really need the work.... lets see what eventuates.

Seems that I can eat tasty things rather than bland or sweet, Jeff F's idea of lime juice cordial has made water taste so much more palatable!! still cant face green tea & thats what I drink most of!!

Working hard to maintain my positive attitude, though it is just a natural way to behave, not contrived at all.... right now Im wondering why I agreed to chemo, was feeling so well before it started. dont know that its worth this to do it 5 more times..... have to be talked into it I think. what r the good points to me having chemo? since Im only having it as preventative not treatment. so it takes me to 30% recurrence, & then radio to 20% recurrence, I have to find out what the recurrence rate is if i just go straight into radio & forget this nasty chemo stuff. very interested to hear views.

monday 13 dec

Hi Guys
Well I'm not long home from my first day work since before I had surgery 6 weeks ago. It was good to do something so constructive. I've got a temp job working for 2 weeks for a dermatologist in macquarie st, in the city. & it may become longer term, all their staff have left & the girl above me only started 4 weeks ago!!!
Im using a medical software I haven't yet used before called Genie - I like it!!
I had a quiet weekend, but did go out on Sat night to the Seymour Centre to see a show called 'Thank Gd its Xmas' hilarious!! really good therapeutic laughter. I've had a bit of nausea, but I find the Blackmore travel calm ginger tablets that work for me when I go out on boats or even water beds!!! work for me here too. So basically now that the stuff the hospital gave me to take over the weekend is finished, thats all Im taking, except I'm having the most awful headaches, not migraines, so I'm taking a few neurofen a day... could do with taking a couple now.
The only other annoying side effect so far is that my sense of taste has changed. I can eat things that taste ok & i had a coffee this morning (rare for me) that was sort of all right, but green tea tastes awful,. water tastes disgusting, fruit juice is barely bearable, I can eat a small piece of dark chocolate but that's enough. I think savoury is more successful than sweet, but water?? its slightly better very cold, but im meant to drink litres a day!!! I'm presuming this is all normal!!
Finally bought a digital thermometer, even when the kids were little, we didnt have a thermometer, I used my lips to assess their degree of fever!! But as it wouldnt be useful for me to get even the slightest fever now, I have to carry this damn thing with me!! I took my temp last night, was 36.9 C, so perfectly normal!!!
Bit tired tonight, had a snooze when i came in.
Hope no one feels that Im writing to elicit sympathy or worse that I might have deserved to get this horrible thing happen, as the amount of support is just so enormous, I hope I'm giving something back. I'm not doing this for any ones benefit but my own really.... just that someone has suggested it has been a good thing to get right now!!!!!
Debbie xx

The night after...

Hi again.
Well I was wrong, didnt get a chance to read or listen to music or write a post on this blog! Even though I was there from 8am to 330pm. Lots was happening.
Firstly I will start at the end of the day, because I want those who complain that I go to bed far too late.... :) to know that I suddenly at around 1030pmish started to feel very unwell, nauseous & even thought I was going to vomit!! I didnt, but Jillian was there & she made me get undressed and get into bed, I soo needed mothering right then & she coped brilliantly. She left & I slept till nearly 1am waking with a dream where I was falling off something & the shock woke me up. I didnt even hear Jacqui arriving home an hour or more earlier & smsd her to see where she was when I read her sms that she was close to home 90 mins before or so.

Anyway thats now & I'm feeling great right now!! so I decided to check emails, write blog then go back to bed :).

Bill collected us as promised, thanks so much, really appreciate it, I know you would have come Cheryl R, but it was really out ur way, even if only a bit.

Jacqui & I lined up at admissions at North Shore Public, such a pain there, u sit & the girl was so slow at the desk, there was only 1 open. As each person gets called you all move up to take their place!! I got up to the ward, 12A at around 845 & was put in a bed where we waited for me to be called to have the port inserted. The nurses there are just so lovely. I had a canula put in the back of my hand as they needed to give me a dose of anti biotics. Then they took the bed - I could have walked!! with me lying on it - yeah really lolol, & took me down to level 2, Jacqui waited in the waiting room down there & they took me into the theatre where they inserted the port under sedation, its on the top of right boob, which is fine. I lay there waiting ages before the surgeon came in but I wake quickly & well from sedation, had it before for teeth extractions by the oral surgeons, before, also when I had the first dental implant.

It was 12noon by the time we got back to 12A. We had yummy (not) white bread sandwiches, fortunately I had made salmon patties the night before & took a few in a box with tomato sauce on!! that was much more yummy. Jacqui had taken the left over beef curry from dinner last night & thats what she ate, tho she did have a sandwich too. I was tired after the sedation so I had a short nap.

The chemo nurse started the line with anti nausea infusion, followed by 3 different types of chemo all administered separately, so that took a while, then they have to flush the line with saline so it doesnt clog up. Then they took out the line, leaving the port under my skin. She had previously removed the canula from the back of my hand. I got dressed - gee those white gowns really make a fashion statement, specially when you wear 2 one backwards & 1 forwards lololol.

Jillian collected us around 330 and we came home. I felt really normal, no issues with anything. I have antinausea meds I have to take for the next 2 days, but not till the morning. with maxolon to take when I feel the need & I bought the blackmore travel calm ginger tabs (aussie brand) to take whenever - they work well for me.

We were deciding what to do re dinner, shul etc & I just didnt feel like going to shul, even Chatswood. so we went down to Lane Cove where there are lots of restaurants, including the vietnamese one we all had dinner at the night before - we didnt go there!! I fancied Italian & so we checked out 1 which is middle of the road price wise, but not so brilliant food wise. The best restaurant in Lane Cove is called Carlos Place - whenever I have eaten there it has always been fantastic quality, its a wee big dearer than the other one, but it was so worth it. The night was pleasant, so we sat outside & had pan fried salmon steaks with salad, just as great as I remembered. Jill & I sat talking till about 10 when I started to flake, so we came home, the rest is written above!!!

Pls post comments & become a follower. I will email & fb so you know this is here!!

Debbie xxx

the night before...

Hi all

Its Thurs eve, tho its quite late, i have been asleep, but I thought I'd write a short note before getting to the hospital in 5 hours.

The amount of support, caring, heart felt feeling, etc is astounding. I have been to lots of lunches with you, occasional dinners & movies & even bookclub. So far my wallet has the same nbr of $$ in it as I started with. Its gestures like this that get to me more than anything. I so appreciate all the generosity coming my way. The only way I can accept it all so easily is because I know & you also know that if the situation was reversed I would be doing the same for you. so thank you all - you know who you are, for helping to take care of me.

So to chemo. I have been considering the alternatives to it, but as i have already said, at least chemo is proven & medicare is very generous!!! so off we go. Not that I'm looking forward to Bill arriving at 740 to collect us... not personal Bill!!! Jillian, I look forward very much to seeing you in the afternoon to take us home!!! Jacqui, thanks for being back home & being able to be with me for this first treatment, Im going to need your support heaps, hope its not too heavy for you.

Well as usual its got late, though I have been asleep for a couple of hours, heading back for another 3 hours kip.

Will post again during the day from my phone.

debbie xxx

some thoughts...

Hi again, everyone - pls say you are a follower if you read my blog, thanks :)

Today I took a doona (duvet) day to just chill & take stock. Just had a long chat on skype with my brother & sister-in-law in Jerusalem - Michael & Nechama. & the things I was saying to them I realised I didnt actually put in my last email.

Thursday a week or so ago, I went in for a contrast dye CT scan of my abdomen, followed by a nuclear bone scan - just to make sure there was nothing lurking about that should be dealt with & fortunately, those 2 scans are clear.

When I was at hosp last Thur having my appt with the chemo oncologist and the intro to chemo meeting. It also included a visit to the chemo treatment ward where they had a look at my veins. They can only use my right arm, as my left arm is on the side of the breast cancer. They could only find 1 vein usable for chemo! & they dont think it would be good to use it 6 times, so what that means is that when I go in on Fri I will have a small procedure where they insert a 'port'. They showed me what it looks like & it is a small round plastic piece with a soft middle which they insert into my chest wall & leave there!! Each time they need to start the chemo infusion, they just put a needle into it & start the infusion - not sure of the detail of how until it happens!!

You may remember that I said there was 1 cancer cell on the 1st lymph node that was removed & they found that during the fine pathology testing after surgery. That cell was on the node, not in it - the oncologist called it a 'tourist'. The surgeon most likely took it with her when she took the lymph nodes out.

However there is an advantage to this - it means that I can have even stronger chemo drugs!!! wooppee doo. the govt is the one who decides what drugs they are allowed to give - seems strange to me that the drs are not the ones making that sort of decision! however we can use that one wee cancer cell to our benefit (not mine I dont think lolol) however im sort of stuck with all this.

I have made the decision to make having chemo my choice. Some have suggested alternative therapies, etc. Yes its probably not a bad idea, but I would never do that instead of conventional, I might go there to do a combination, however those alternative therapies cost fortunes & I dont see the need to go there. For one I dont have the $$ for the other, are they proven? at least all this I am having is covered by Medicare & the govt does pay for it all....

My mind set is still that I dont want to do it (have the chemo at all) but Im aware that is just cos its an unknown & once I have had it the 1st time I will hopefully be in a different space - I may want to stop right there, hahahah, but guess I gotta go thru with it all.

As chemo is a poison that kills the bad cells, it also kills good cells - which is why hair falls out- the hair follicles are constantly growing, the mouth is another area, as the cells inside our mouths turnover quickly too, I had a dental appt on Fri which was already planned & very necessary before starting chemo. The bone marrow is another area of quick cell turnover which is why the white blood cell count goes very low during the chemo period. I have to have blood tests weekly to start with the check how my white blood cells are going.

If anyone is planning to visit me during this period & you have a minor infection, or cold, etc, please dont visit me, I will be very susceptible to anything. In fact I have to buy a digital thermometer to check my temp. I have never had a thermometer & even when the kids were little I used my judgement to see if they were feverish or not. With chemo if I feel a bit off colour at all, i have to take my temp & if it is over 37.8 I have to go straight to hosp!! no second chances, it could be fatal. Interesting! not something I would have known before.

Hope you decide to post a comment or two.... looking forward to reading your thoughts on all this...

ldxxxx

today's appt, email nbr 4, 2-12-10

Hi again everyone

Thanks again to Fran for coming with me & to Jacqui for being back from London now & coming today too. Thanks to everyone else for your wonderful support, care, concern, etc as I say in each email!!

This morning's appt was with chemo oncologist at North Shore Private. When I walked into his room, Tracey, the breast cancer nurse was there, she's like a constant light in the dark room. I can call her anytime, with anything, I haven't - yet!

Alex got down to business & all the info I had taken on board about chemo is now different! Because the cancer I had was a very nasty one & had no hormonal receptors I have to have an interesting compound of chemo, 6 times, 3 weeks apart starting next Fri 10th - it will take 18 weeks. They cannot give me the usual cocktail of hormone drugs to complement this chemo treatment - it wouldnt work with me. 

Chemo will reduce the chance of recurrence to 30% and following it with radiotherapy will reduce it further to 20%. Im going to be one of the 1 in 4 & have it erradicated!!! positive thinking here we come.

After the appt Fran, Jacqui & I went to Neutral Bay & had a wonderful lunch at Thelma & Louise overlooking the Bay - thanks Peter!!

This afternoon, Jacqui came with me to a meeting for cancer patients who have not yet started chemo. It was about support, side effects, what to expect, how we may feel, logistics, etc. with a video talking to patients who have had chemo in the past & how they felt about it all. 

Right now Im completely overwhelmed with information, & just want to run away! I feel that since I have had surgery & feel just fine - LEAVE ME ALONE... my normal sense of well being & down to earth pragmatism has disappeared for now, maybe its a good thing. Im starting to feel angry at this damn thing that has come into my life uninvited.

Since mouth problems are very often part of the chemo, never mind losing my hair, i had already made an appt with the dentist for a hygiene clean tomorrow, timing is impeccable.

I'd like to make a fun day of going to wig shops & working out what sort of wigs I should get - Ive got a list of some in the city & north shore. If you would like to come along & help me choose, pls let me know.

I probably should make a blog of this, but not sure where to start, so wont bother for now!!!

Hope my thoughts & info make at least for some interesting reading!! Thanks again to you all

Debbie xxx

saga continues, 17-11-10

Hi everyone

Fran came with me again today, gee she is tolerant & so wonderful, wouldnt cope without her being with me. Thanks Fran, I know u know how much I appreciate ur time, love, care, concern, etc

I was asked to participate in a trial. The surgeon put tiny wee pins in around where the tumour had been that show up on ct & will be of use in showing how the space created by the tumour shrinks as time goes by. A radiotherapy nurse is using it for her phd. had long chat with her about her research, etc

saw Katrina, the surgeon & she is happy with how its all going, i dont need to see her for 6 months again now.

Dr Ahern, radiology intern talked to us about what is involved with chemo & radiotherapy. 

Had CT scan regarding the above trial & they showed us the wee pins. 

On Dec 2 I have next appt & this is with the chemo oncologist. Looks like I will have 4 lots of chemo 6 weeks apart, wait a month & then have 25 sessions of radiotherapy every day for 5 weeks. so basically the next 6 months r taken care of!!!

I have a job interview next Mon, so fingers xd - I wont be telling them anything about this in the short term, wait till i get a job offer which I accept!!!

gonna put this on facebook now too....

Debbie xxxx

ps still feeling down to earth & fine with the whole thing :)

follow up appt - 10-11-10

Hi again everyone!

Thanks so much for all the love, care, concern, thoughts, etc that you have all shown to me in buckets!! really appreciate all the support. Sorry I didnt respond to all the emails - I tried to find a way to combine them all to write once, but havent worked that out yet!!

Today I saw the surgeon for follow up. Fran, thanks again for being there, came with me. I was hoping to find out everything the future holds.

We found out quite a lot! 1st,  Katrina, the surgeon, is very happy with the way it is all healing & my arm movement, which I have not had any issues with at all. 2nd the cancer is a very nasty, aggressive one & will probably recur, which means chemo! It is not hormone affected which means I can do hrt, eat soy, etc. She took out 3 lymph nodes & there is one - ( 1 ) malignant cell in the 1st node. In days gone by they didnt have the technology to find this & its considered clear. So thats good. However  I have to go back next Wed to meet with her again & the oncologist re the chemo. I wont be in on that decision as its discussed at a team meeting where all the doctors meet to discuss all the patients. They didnt have that meeting today because they were all in Melb!!! When she cut out the tumour, the margins are very good, so no issues there.

Hope i have done this justice & it is all clear (as mud) to u all!! Basically I dont know anything about the type of chemo, the length of time, the effects until next Wed.

Im going to start looking for work in the next very little while, its all taking its toll....

email 1 - lumpectomy posted 1-11-10

Hi all
Tnx for all ur care, concern & positive attitudes. Went last night to such an amazing wedding, tnx jen & gar for invite, i had a fantastic time :)
Well had surgery this afternoon. So far so good! Feeling fine, no pain, no drain. Sentinel node is clear. What more can
I ask for at this point. Ldxxxx
Ps have posted on facebook
sent from my Telstra NEXTGT handset