and I am still in hospital – 9th day today !! (gasp!!) The good news is that I have had the portacath out (yesterday) and after another 24 hrs of IV antibiotics will be allowed home with antibiotic tablets. I have been on mega doses of antibiotics while I have been in here which could ony be administered by IV but i have been allowed to go for walks out of the hospital during the day in the break in between doses. I’m on a public internet access computer in the hospital book shop and OH is taking me out for tea in between my next two doses (this afternoon and tonight) I am glad I have been able to escape, it’s kept me sane or at least as sane as I was!! LOL
I won’t write a big post today as I have to type this standing up but will catch you up with all the developments as regards radiation and surgery as soon as I get back home to my laptop.
HAPPY NEW YEAR EVERYBODY!!
Posted by jaydub26 on December 30, 2008
go awry. Mum has been hospitalised with another portacath infection this week (went in for radiation simulation on Tues and they didn’t let her come home) and while it threw a spanner in our festivities, we were pleased to have her home on a Christmas Lunch pass, even if it meant she got to skive off before the clean up. We hope to get her home either Saturday or Sunday and we’ll look at doing our big family Christmas thing then 😀 She’ll also do a big post on the experience when she returns.
– Yours in weary happiness, OD.
Posted by Natasha on December 24, 2008
I went for my Radiation oncology orientation yesterday – This is basically a meeting at the Cancer Society where they go through what is going to happen at your simulation/mapping session (which I have on Tuesday ) and what to expect when the treatment itself starts. there was only a couple of us so it was a shorter session, but we were able to ask questions about our specific treatments. The main thing I learnt from it is that I will probably have 3-4 different angled beams of radiation targetted to Gertrude.
I also have an appointment with the surgeon on Monday so Christmas week is still busy with Gertrude-related business.
The fact that it is coming up to the end of the year is having an effect on me psychologically and this was a conversation I had with the other woman at the meeting that also had breast cancer when we were talking afterwards. It is making us realise how long we have been dealing with our respective cancers. Since the symptoms started for me at the beginning of July, by the end of the year Gertrude will have been knowingly part of my life for 6 months. 5 months since diagnosis. As New Years Eve is also my 46th Birthday this is also adding to the weight on my psyche. I’m not getting depressed but it does make me think more of life in general and my own mortality in particular. the fact I have got another 4-5 months of treatment going into 2009 also plays a part.
I have been given a couple of boxes of goodies as Christmas/getwell/thank you presents. One from AFS the voluntary student exchange programme we have been involved in. We have several overseas “daughters” Hi I,C,B and our “nieces” A,N,M,A – I do the chapter newsletter for them. The other was from my work, It was a lovely box of goodies but I sort of felt weird getting it because I haven’t worked for a few months and it willl be another few months before I can put in any real hours. I think its wonderful I am still considered part of the team but can’t help feeling that I haven’t done enough to deserve this. Will probably do one more post before Christmas to update on my Monday and Tuesday appointments.
Posted by jaydub26 on December 19, 2008
I am having all the usual chemo side effects. but the one thing that is ever present in my mind is that this is the last of my chemo with taxotere and most of these side effects will be all over in a couple of weeks. No more feeling nauseous and unwell, no more sore feet, no more aching femurs, etc,etc. I know the radiation and the surgery are going to be tough but I am going to feel so much more like myself through those two treatments than I have through the chemo. I am carrying on with herceptin for another 9 months but that doesn’t have any of the major side effects that the taxotere does.
The countdown into Christmas has begun and I am fairly relaxed. Its a bit frustrating that my worst time for side effects is now, when I would love to be more active but I am grateful that the “normal” days start on Christmas Eve so although I will probably be tired I wont be feeling the other side effects. YD is coming home from lunchtime Christmas Eve til early afternoon of the 27th. We will have a quiet Christmas day and then have more of the extended family around on Boxing Day. YD deals with the excitement of Christmas much better this way than trying to do presents and relatives and everything all on Christmas day.
I am waiting on an appointment to do the set up and simulation for my radiation and I have an appointment with my breast surgeon next Monday, so even during Christmas my treatment goes on. My next herceptin chemo is due on the 2nd of January. The oncology department only stops for Christmas Day and New Years Day.
Posted by jaydub26 on December 15, 2008
This was the good news I recieved at my oncologist assessment – wow, what a relief. The results from the latest CT scan show the spot on my liver wasn’t cancerous.
So that means that at the moment Gertrude hasn’t sit up house anywhere else and is confined to my breast area and my collarbone. The other good news I got are the cancer markers that are floating around in my blood are going down.
Other thing that happened yesterday is we visited the travel agent who is organising my trip I won. We managed to organise that we would go at the end of June which should give me enough recuperation time after surgery. I will discuss time frames with the breast surgeon when I see her a few days before Christmas and confirm arrangements for the holiday.
As I was saying to some people while I was at YD’s school end of year prizegiving and BBQ this evening, winning this prize has given me a focus for when things get bad over the next few months with radiation and surgery.
I picked up my ham for Christmas this afternoon – I get really nice ones from a factory shop. I picked up another one to put in the freezer which we will pull out just before I have my surgery so that makes for easy meals.
I have been making good use of my time this week before my chemo tomorrow. I am pretty well organised for Christmas. Few little things to do.
I am really looking forward to this being my last taxotere chemo and having all those side effects stop. I have got used to being semibald so its going to be weird when my hair grows back. I had a quick trim and tidy of my remaining hairs tonight when OH and YD had their usual 6 weekly haircut.
I am going to carry on with herceptin for the year, so will be going up to the hospital for that every three weeks until at least August. I am so pleased that Herceptin is funded for more than just stage 4 metastatic breast cancer.
Posted by jaydub26 on December 10, 2008
Today I met a fellow IBCer in person for the first time. (yes – I am talking about you L). We had spoken on the phone after being put in touch with each other by my breast surgeon. L is a 9 year survivor of IBC so gives me great hope. But we met this afternoon, it was so nice to just chat, and have someone know exactly what I was talking about. We talked for about 2 1/2 hours and could have talked longer but the coffee shop was closing and we both needed to do other things. It was wonderful just to go blah blah blah and to have someone else go blah blah blah back.
I haven’t joined a breast cancer support group because IBC is so different to normal breast cancer I am not sure that I would get anything out of it, and also because of my experience with the special needs support group that I ended up running because of YD and the sort of person I am, I would end up supporting people more than they were supporting me and I am not strong enough at the moment to deal with that. But the trouble is that there isn’t enough of us IBCers around to have a local support group of our own. I belong to the IBC network that is done by mailing list out of the USA which is also a good source of support and information.
So thank you L for a wonderful afternoon and I’ll shout the drinks next time LOL
Posted by jaydub26 on December 8, 2008
Well, Christmas is definitely here – yesterday OH and YD went out and got the Christmas tree. YD was very adamant that we had a real christmas tree (even though OH and I were thinking of getting a fake one this year just for convenience with everything else going on) as she was having a fake one at her house. I am sitting beside the decorated tree as I write this blog post. After we had decorated the tree yesterday afternoon we went out for dinner for OH’s birthday. It’s not his official birthday til Wednesday but it just fit in easier to have the family dinner on Sunday while YD was with us and OD wasn’t working. I am taking him to see the latest James Bond film on Wednesday evening to celebrate his actual birthday.
We have got one of those family calendars where every one has a seperate column to write their schedule in. December’s page has to be the most filled in. We have all got so much on. And somewhere in there I have to fit in Chemo LOL!!
Don’t worry people I am making sure I dont over do it. Anyway I’ve got my dentist appointment later this morning so I better go and eat some breakfast because I probably won’t be able to eat much for a while afterwards
Hope all you guys are enjoying your holiday preparations
Posted by jaydub26 on December 7, 2008
I got shouted a ticket to the Alicia Keys and Jordan Sparks concert in Auckland tonight by MD and Soulja Boy. MD came too – it was a lovely night with two very talented singers. When Alicia was singing “Superwoman” MD turned to me and said “Soulja Boi(except she used his real name) told me to tell you when she sung this song that it’s your song.”
Awwww, it just about made me want to cry. But I definitely appreciated his sentiment. and I think it will become one of my theme songs. the other one I use for motivation is Queen’s “The show must go on”
“For all the mother fighting
for better days to come
All my women, all my women sitting here trying
to come home before the sun
and all my sisters coming together
saying yes I will
yes I can
Beccause I am a Superwoman
yes I am
Yes she is
Even when I’m a mess
I still put on a vest
with an S on my chest
oh yes I’m a Superwoman”
When I’m breaking down
and I cant be found
and I start to get weak
because no-one knows
me underneath these clothes
but I can fly
we can fly ooooh”
Posted by jaydub26 on December 5, 2008
I had my first consult with the radiation oncologist today. After discussion and an exam, the decision was made that I would do radiation before surgery. So now the plan is that after my chemo next Friday there will be 4 weeks of recovery time , with a consult with breast surgeon (looks like I am going back to my private breast clinic for surgery) on the 22nd December and a mapping consultation with the radiologist sometime between now and the middle of January. Then my radiation will start middle of January for 5 -6 weeks 5 days a week (Get weekends off) Then there will be another recovery time then surgery. Radiation before hand does mean the integrity of my skin will be worse for healing after surgery, but its the best chance of me beating Gertrude. Good news is that at least to start with I will be able to take myself to radiation appointments I will get a cumulative sunburn which may get pretty painful towards the end. I may need OH and others to take me to the latter appointments depending on how sore it becomes to drive myself.
I have been a bit on edge with the uncertainty of what was happening next but feel much happier now we have got more of a plan.
Posted by jaydub26 on December 4, 2008
I am starting to read my chemo cycle very well. Today is the day that I can start getting out and doing stuff. My next cycle’s normal days start on Christmas Eve – excellent timing! I will do more Christmas organisation in the lead up to next Friday’s chemo and then it will be a relaxed run into Christmas. OH is taking the 2 days off before Christmas so that he is around to help with any last minute stuff (like the food) that needs doing, and the girls will be helping too.
I had my CT scan on Monday and we will see what the results are at my assessment next Wednesday.
I also got the report on my private mammogram done when I first got diagnosed. I have a cyst or probably benign lump in my left breast as well as everything that is going on in my right breast with the IBC. Even more reason to have them both off I say.
I am waiting on a surgeon consultation appointment in the public sector, and it is contingent on that as to what happens from here. If they do not want to take my left breast off or at least do a biopsy to check that it is benign I will go back to my private breast clinic and get them to do it. Thank good for Southern Cross Medical Insurance. We have had our money’s worth for me over the last few months. Being able to go private for initial diagnosis and consultation with breast specialist and oncologist made all the difference to the early diagnosis and treatment of the disease.
I have made an appointment at the dentists to get my tooth temporarily fixed next Monday so that’s all good.
I am still finding out the details of my competition win so will let you know whats happening there when I know.
Posted by jaydub26 on December 2, 2008