After arriving home from the Gold Coast Tuesday night. It was a pity I had to get up early and get up to the hospital for blood tests, which I normally would have had the Friday before, and to get my next lot of Xeloda tablets.
I showed Dr H my feet which had suffered greatly at Dreamworld and we also talked about the fact I need to take things a little slower.
what xeloda plus themeparks holidays do to your feet - red cicles are blisters
This was just the damage from one days walking at Dreamworld (Wednesday)- my feet were so sore we had to resort to a motorised scooter at the shopping mall the next day, golf cart at Australia Zoo (Friday), and wheelchair for another shopping excursionon Saturday – ‘Boy, did I feel like an invalid’
no pictures of me in scooter apart from this one that YD drew
- me on scooter at Pacific Fair shopping mall – as drawn by YD
because my feet and fatigue were so bad, Dr H delayed the start of my next xeloda cycle for at least a week to allow me time to recover, there is also talk of decreasing the dosage more. I must admit this concerns me a bit because I worry at a lower dosage it will lose its effectiveness, allowing the tumours to grow once again. Its very much a trade in whether I perservere with higher dose and continued good results, or compromise for more comfort and being able to do more of what I want to do.
It has taken me til now to get over the holiday fatigue and I have had to resort to blister plasters on my thumb and index finers of each hand as they are starting to go the way of my feet to enable me to type and write without pens or computer keys rubbing on my fingertips
mini blister plasters on my fingers
Posted by jaydub26 on July 30, 2011
gorgeous view from our holiday apartment
I must admit we got very lucky with our holiday apartment. We had booked a 7day discounted family accomodation package and although we knew the apartment was right on the beach I was sure for the discount price we would get one of the units without a good view. Imagine my surprise when on arriving we got told we were on the 32nd floor with views of both the beach and inland
view inland from Surfers Paradise
being so high up was a little challenging for YD but we quickly set boundaries as in ‘no taking anything out onto the balcony’ and such like. With the height also came a lack of traffic noise and all we heard most of the time was the noise of the waves.
We had fun at all three themeparks but it was quite overwhelming for YD so we were kept busy with her although a few meltdowns were unavoidable. She also wanted to go shopping but so many new shops, different money etc also was confusing for her. I think we all came home a little more tired than when we went. She did enjoy herself overall so thats all that counts and is already planning to go back again – or so she says.
feeding the Kangaroos at Dreamworld
YDs excellent photo of tiger shaking off water after being in the pool - Australia Zoo
Dolphin show - Seaworld
We managed to have wonderfully sunny weather the whole time we were there.
I managed two mornings on the beach, but due to time constraints switched to swimming the remaining mornings. I would do several laps freestyle of the small indoor pool YD joined me in that pool until she discovered the spa pools and from then on she would have a spa while I did my laps. Pampered young miss!! 🙂
I managed to meet up with my sister and niece the first night we were there and see family friends M, R, and L on the Saturday and also catch up for a coffee on Monday with my IBC internet friend P – we could have talked for hours, but we had left MD looking after YD and P also neede to get back to her kids.
We definitely achieved what we wanted to on this trip but next time I think I need a little less hectic holiday.
Posted by jaydub26 on July 30, 2011
A couple of things that didnt fit with the topics of the last two blog posts – not sure they deserve a blog post of their own but if I dont write them now I will forget. Damn that chemo brain!
Firstly – I got my results back for my semester 1 papers. I got an A for my ‘Law’ paper that was all internally assessed, and a B- for the ‘Family’ paper which I will take as my Drs advice had been not to sit the exam for that paper (because of having a chest infection on top of chemo side effects), I didn’t finish all the questions as the Xeloda made my hand sensitive to the pen rubbing against my hand and fingers and I could only manage to write for 2 out of the 3 hours allocated for the exam and ended up leaving one whole question unanswered. As I said in previous post discussing this, I could have gone for compassionate marking but I didn’t want to go through the stress of organising that, so I’ll take my B- and less stress – it is still a pass.
I start Uni again this coming week but miss the first class for one of my papers and the second of the other due to YD’s trip. Having to fit it round chemoscans and uni made this the only time we could go as any later would start impinging on assignments and exams
….and wouldn’t you know it when I started writing I forgot what the other things were that I wanted to write about. This just shows how insidious chemobrain/brain fog is – I will edit this post later if I remember the other topics
Posted by jaydub26 on July 16, 2011
I named my previous post about the web video series “Video Stars” and have publicised the videos on facebook, twitter and in our local paper. You can read the online version of the article here – Papakura Courier
I have had a lot of praise as well as people joke that I am famous, and to tell you the truth it makes me feel a little uncomfortable. I don’t do this sort of thing to build myself up and make myself look good but just because I think it needs to be done. People need to know that all breast cancer isnt the same, and I am passionate about making that happen.
If you are on Facebook or Google+ you will have seen my update :- “Nobody who knows me well is going to be that surprised that I joined the committee of Breast Cancer Aotearoa Coalition last night – these are the people who organised the videos I was in. They are willing to support me in stuff I want to do around IBC in New Zealand and I am also doing something constructive for the wider breast cancer community in New Zealand”.
They are a national organisation of volunteers doing things around breast cancer that I really believe in , such as the webvideos. They act as an umbrella group for a lot of different breast cancer organisations and are very pro-active. I feel like I have found a bunch of like-minded people and that with working with them I can achieve some of my own objectives as well around publicizing IBC.
Some people worry about me over-committing myself especially with the level of fatigue I am feeling under treatment, but getting involved with this sort of endeavour, and likewise my uni studies, makes me feel like I am doing something worthwhile and not just sitting around being a “cancer patient”
The BCAC (Breast Cancer Aotearoa Coalition) committee is aware of my limitations and are just happy to have me onboard with whatever I can give them. They are particularly interested in the fact I am an avid user of Social Media (Facebook, Twitter, Blogging, and now Google+) and even though I still think of myself as somewhat of an amatuer they are interested in my input in those areas.
I am not a star – but I do plan on continuing to be a starter.
Posted by jaydub26 on July 15, 2011
The holiday I am going on next week is a very important one. It has been two years since we first came up with the plan and because of treatments and other time constraints we couldn’t do it until now. I have pushed my oncologists to allow me to take this trip but it is not ‘my’ holiday. It is YD’s. She wanted to go to Dreamworld and she wanted Mummy to be the one that took her. Because of her autistic tendencies , as far as she was concerned it wasnt going to happen unless Mummy was coming with her. So we have made it happen, OH and MD are coming to do a lot of the actual looking after her at the theme parks(Dreamworld, Seaworld and Australia Zoo – MD will go on a lot of the rides with her) because I know I will just not be able to keep up with her.
With the amount of fatigue I am feeling I am worried about how fast, or not, it will wear off on my week off xeloda. People have been advising me I can hire wheelchairs and/or mobility scooters. I really dont want to go down that route but I might have to – I really hate that thought!! I will push myself because this is such an important holiday for YD but I am concerned about how I will handle it.
The things I want to do for myself on this holiday are meet up with P another IBC lady, see my sister and niece and meet up with old family friends who used to live down the road from us. I also hope to have a few minutes each day to myself to swim in the apartments indoor heated pool to get my exercise/fitness back up. With the issues with the xeloda side effects on my feet there are not a lot of other exercise options. I also want to spend a few minutes each day alone on the beach where I can just sit and breath in and out. I doubt the beach will be deserted but by alone I mean without anyone I know. Hopefully OH and I will get a chance to do a few things by ourselves if we leave YD with MD but it is very dependant on YD’s behaviour. She is so excited about this trip but I am so aware that that excitement can turn, very easily, to over-stimulation, and overwhelm her.
This holiday is going to be hard work for the rest of us, but if we can pull it off and give YD the holiday of a lifetime it will be worth it.
Posted by jaydub26 on July 15, 2011
I got the results of my scan yesterday and am pleased to announce it was positive news. And that all systems are go for our trip to Dreamworld. They have even decreased my xeloda dosage slightly to allow me to enjoy the trip with fewer side effects. Yay!!
The interesting news was that unbeknown to me the final report on my March CT scan had shown another lesion/tumour had popped up between my December and March scans. I didn’t see Dr H yesterday as he is away for a couple of weeks and so when the Dr standing in for him, Dr J said”they’ve both shrunk” I was like “what?!!” as I tweeted yesterday it appeared that the original tumour in had a baby brother I didnt know about.
Because I know some of my family are nurses and there are other people who read my blog who want to know the medical stuff. I found a diagram of the liver and have drawn a picture to show the original size of the tumours and the size they are now.
from the Radiology Assistant
The large one of the tumours diagrammed below is in segment 7 the smaller one in segment 2. The darker pink outline is the size they are now and the lighter outline their original size in the March scans
The larger one went from 4.2×3.9 cm to 3.2×2.8 cm. The smaller one was originally 3.1×1.8 cm and is now 2.6×1.4 cm. As you can see there has been a quite good reduction in both of them so we will keep on with the xeloda and hopefully when I have another scan in a couple of months time it will show further shrinkage.
Dr J also signed the mobility card application – we discussed how I didn’t always need it but that there were days that I did and rather than me be stuck at home like I was last week with my feet and also when fatigue was the worst this would allow me to get out a bit more on those sort of days.
She also decreased the dosage as the hand foot syndrome has got worse this round and also been affecting my lips – which are very dry and cracked regardless of what I put on them. She partly decreased the dosage to aid my enjoyment of our time away on holiday without too many adverse side effects.
We will reevaluate the dosage levels when I have my appointment on the 27th.
Even though it was a bit of a shock to find out that there was two not one liver metastases, I’m feeling really happy. We get to go on our trip and we know the Xeloda is working.
That is all I need to make me happy right now.
Posted by jaydub26 on July 6, 2011
Last night I went to the Breast Cancer Aotearoa Coalition launch of the web video series I took part in, “Kiwi Stories of Breast Cancer”. It took place in a movie theatre with the videos shown in a continuous screening. I am glad that I had managed to watch myself in the videos on the computer before the launch as seeing myself on the big screen and seeing how it was edited together was quite daunting, and it meant I had processed some of that feeling before last night.
Even if I hadn’t been actively involved in these videos – I think they are amazing !! Each video concentrates on a certain aspect of the breast cancer journey and although they are short pieces approximately 5-6 minutes long each they cover a wide range of personal experiences and give some medical information as well.
I have put links to the whole series on the right side of the page but I will put the links to the whole series and some of the ones that feature my 2c worth about my experience with IBC. I encourage you to watch the whole series and share it with every one you know.
Kiwi Stories of Breast Cancer
Getting through Breast Cancer
Secondary Breast Cancer
The only ones of the series I don’t feature at all in are the ‘hormone therapy’ one and the ‘clinical trials’ and the ‘life after breast cancer’ because those are things I haven’t experienced.
I want to applaud all the other women and the man who took part in these videos, most of whom I have never met although I did meet a couple of them at the screening last night. I especially think Brian was wonderful to put his story out there to educate men about Breast Cancer. Even though I never met him I vastly admire him for his participation in this project.
Last night we were informed that Brian had died 3 weeks ago.
Thank you Brian for this legacy, this gift of your experiences. May you rest in peace.
Posted by jaydub26 on July 6, 2011
This post is going to be public but I am not publicising it on facebook, as time goes on there may be more of these posts which only my more dedicated readers will see.
I’m waiting for the results of my scan to make sure the chemo is working. Its time’s like this my WSWI voice become the loudest. OD had a bit of a breakdown about it too last week. She worries that I will not be around for her wedding in a year’s time or that I will be too sick from cancer or chemo to take an active part. I can not make any absolute guarantees but I think I will be ok for that wedding.
Likewise our upcoming trip to Dreamworld – I know the oncologist just want to cross all the ‘Ts’ and dot all the ‘Is’ to make sure that nothing will happen to me while I’m away, but I am so aware that on Wednesday they could turn around, after getting the results of the scan, and advise me not to go. We haven’t told YD that might be a possiblity. We are working on the assumption that it wont happen. If it does I will have to put more work into a ‘social story’ about how MD and OH and her are going without me. Likewise if I do go I am aware that my feet will not keep up with the pace the rest (mainly YD) will want to set. It was very sobering to have to look at Dreamworld’s site to investigate whether or not they had wheelchairs available if I should need one.
I also worry about how tired I was when she went home, after only a day and a half at our place. Even when we were just sitting planning the trip and preparing YD’s ‘itinerary’ the constant need to be ‘switched on’ was tiring. Am I going to be able to handle a week of that – even with OH and MD being there?
Likewise the conversation I had with the Cancer Society Liaison nurse last week, I am entitled to a mobility card so that I can use mobility parking spaces, which admittedly would be handy on those days when my fatigue or sore feet keep me more incapacitated, but I don’t know, it just feels like giving in to defeat to me.
I hate that I even have to think about any of this. Unfortunately I am too much of a realist, (not a pessimist) to not acknowledge that this is how my life is probably going to be from now on. In and out of treatment with all of the quirky sideeffects, fatigue, scans etc is how I’m going to live my life. I just need to figure out how to fit the rest of my life around it.
Posted by jaydub26 on July 3, 2011
I spent most of last week hobbling around home – not being able to put weight on my right foot properly due to the blisters on the ball of that foot. It made for a lot of enforced rest and I have to say my feelings of fatigue has lifted considerably.
MD drove me to my scan on Tuesday (on her way to work) and I was a picture of sartorial elegance wearing my royal purple ugg ankle boots. I usually wear them as slippers round the house as slippers and don’t wear them out in public but they were my best option for getting on and off my feet on Tuesday. I felt like a ‘patient’ as I shuffled slowly along the corridor. I usually don’t feel that way as no-one can usually tell that there is anything wrong with me. For a ‘larger’ women I move very fast, and even though I know I’ve slowed down since first having treatment for ‘Gertrude’, I still walk faster than most people. As OD told her class of stragglers the other day “My Mum’s on chemo and she walks faster than you” 🙂
After the scan I got a coffee and something to eat – as you aren’t allowed to eat before scan – and then caught the train home – the station is right outside the hospital so very handy. I timed it with OH’s coming home from work so that he could pick me up from the train station.
I managed to get some housework done during the week by doing it in little bursts with resting my feet in between. I finally felt my feet had settled down enough on Friday to venture out to get a blood test and run other errands downtown, so with my comfiest pair of sneakers on, I ventured out. I actually managed to walk from one end of town to the other, slightly more tentatively not striding out like I usually do, and having a long sit down break at the Labtest place waiting for my turn and then on the return journey stopping for a coffee and another sit down. On Saturday I managed to get my most comfortable pair of black flat shoes on so we could get some family portrait shots done.
The main painful blister underneath my second toe ‘popped’ with all that walking so with the pressure off it has become less painful to work on although now a have a small weeping hole at the crease of where my toe meets my foot – yes I know too much information!!! Hopefully this will dry up today – I am staying at home and keeping it uncovered in the hopes that it will, also keeping watch for any signs of infection.
Of course now the usual scanxiety sets in, I get the results at my assessment on Wednesday and am hoping that it shows a dramatic reduction in tumor size so that the oncologists can give me the absolute go-ahead for our trip with YD to Dreamworld – now only two weeks away and that I can make plans for the next semester at uni. I am pretty sure it will show exactly what we want it to but until Wednesday those nervous little ‘what-if’ butterflies are dancing in my stomach.
Posted by jaydub26 on July 3, 2011