Whilst in my last hospital stay for pain management a few weeks ago, I was given the very bad news that chemo is not working for me and that the likely future success of any other chemo (even in simply extending life for weeks/months) is extremely low. Therefore they do not recommend continuing treatment, they simply want to try to help me be confortable for the remainder of my expected life - a few months.
This very difficult news to deal with, combined with the ongoing efforts of pain and general health management mean that I am unlikely to be blogging again. Thank you to everyone for the messages of support that I have been receiving via email, facebook, etc! The messages are greatly appreciated and it is very touching to know the support that is out there for me. However, I have been a little overwhelmed and typing is not a strong point at the moment, so I apologise in advance if I do not reply! As I say, I do appreciate the messages sent and have been reading them all.
I have to sign off by saying that this was not the way I expected this blog to end when I started it up almost a year ago. If breast cancer wasn't in my five year plan, then dying from it certainly wasn't! I firmly expected to "beat" the cancer, at least for a good period, but obviously this wasn't meant to be. All I can do now is try to enjoy the rest of my time here, especially with my lovely husband, and my parents and sister who I am very pleased have flown over to spend this time with me.
Kirsty
x
Saturday, October 15, 2011
Wednesday, September 14, 2011
Flipped Port = Longest Chemo Day Ever
Yesterday turned out to be a nightmare day (nearly 11 hours!) getting chemo, thanks to a very naughty port-a-cath! In theory the nurse just puts a needle into the port, straight into the vein for th blood test, and the needle is then used for chemo too. This proved impossible - the needle kept just hitting metal, despite the best efforts of 3 nurses. I was sent down to x-ray, which they thought showed the port was a bit twisted but not completely flipped over so in theory could still be accessed. But no - same result again. So I was now sent to Concord hospital, where I had the port originally put in, to be fixed up.
At Concord further xray showed that the port had flipped over, hence why they couldn't get the needle in. Solution was a little operation under local anaesthetic to slice open and get at the pot, flip it back over to the correct position, tie it down so it shouldn't happen again and then sew it back up again. Then test by putting a needle in for chemo. That all done, it was back to RPA for 3.5 hours of chemo! What a day, could have done without it...
At Concord further xray showed that the port had flipped over, hence why they couldn't get the needle in. Solution was a little operation under local anaesthetic to slice open and get at the pot, flip it back over to the correct position, tie it down so it shouldn't happen again and then sew it back up again. Then test by putting a needle in for chemo. That all done, it was back to RPA for 3.5 hours of chemo! What a day, could have done without it...
Ups & Downs - Week in Victoria, Week in Hospital
I have been in some pain recently hence haven't updated the blog for awhile, so I'll now try to recap the last month or so.
The week after my Biggles experience I was still feeling pretty good and we went to Victoria for a week (with mum and dad and hubby). The great ocean road was beautiful and a helicopter ride over the 12 apostles with mum was awesome! It was obviously a week of cool flying experiences. Saw lots of koalas in the trees too, which made up for the terrible weather that day. Then spent some lovely sightseeing time in Melbourne, includng a visit to the Block (a renovation TV show, won't mean anything to the English audience!) Our 4th wedding anniversary was spent in a nice hotel in Melbourne, with a lovely dinner at the Guy Grossi restaurant in the hotel. We then went to the Mornington Peninsula to see cousin Andrew & Kylie and do some more sightseeing down there - beautiful area I have to say. Loved the Peninsula hot springs but very stupidly put the new pain-killing patch on before going into water for 3 hours, so it (unsurprisingly in hindsight) fell off with no spare available. Made for a very painful flight home!
A few days after returning from Victoria, I had a lovely birthday party at a pub in Newtown. There were abour 40 people and I tried to talk to everyone at least for a little while. I lasted 2 hours before I had to go home for a lie-down - a pretty good effort I thought, but also quite sad when I reflect on how I used to socialise (so easily for many more hours, drink in hand!) Oh well, this is the new me now I suppose, sober and tired...
After the birthday party things went downhill quite quickly. We tried to go away for the weekend to a beach house on the central coast to see mum and dad Irwin, but had to come home due to the level of pain I was in. Then on the monday, still in pain, it was back to the RPA. I was expecting to be in for less time than previously, but it ended up being over a week. Activities included a blood transfusion (when my red blood cells were too low), MRI scan on my spine (horrible, so claustrophobic and loud, I still feel ill thinking about it), healing radiation on my lower back and so much morphine I got a bruise around the butterfly and had to ask for injections instead. Fun! Not sure how much of my issues are due to constipation - it is underrated apparently, morphine slows your bowels down, but if you aren't going regularly then pressure causes pain and oral morphine doesn't work (but still slows your system). So bowel movement is key! Anyway, eventually I was discharged with a significant increase in pain killers, mainly morphine tablets, and a community nurse set up for a visit every fortnight.
The firt first few weeks out of hospital were fine, though I definitely feel much weaker and sicker than I have before, which is quite downheartening. Then in the last week or so the pain has come back, which was pretty depressing. Not sure how much is constipation related, so I've been taking lots of bowel drugs to get/keep things moving. Saw doctors yesterday to get stronger painkillers. Finally starting to feel a bit better, though a little dopey from the even stronger drugs - excuse any spelling or grammar errors in the blog!
The week after my Biggles experience I was still feeling pretty good and we went to Victoria for a week (with mum and dad and hubby). The great ocean road was beautiful and a helicopter ride over the 12 apostles with mum was awesome! It was obviously a week of cool flying experiences. Saw lots of koalas in the trees too, which made up for the terrible weather that day. Then spent some lovely sightseeing time in Melbourne, includng a visit to the Block (a renovation TV show, won't mean anything to the English audience!) Our 4th wedding anniversary was spent in a nice hotel in Melbourne, with a lovely dinner at the Guy Grossi restaurant in the hotel. We then went to the Mornington Peninsula to see cousin Andrew & Kylie and do some more sightseeing down there - beautiful area I have to say. Loved the Peninsula hot springs but very stupidly put the new pain-killing patch on before going into water for 3 hours, so it (unsurprisingly in hindsight) fell off with no spare available. Made for a very painful flight home!
A few days after returning from Victoria, I had a lovely birthday party at a pub in Newtown. There were abour 40 people and I tried to talk to everyone at least for a little while. I lasted 2 hours before I had to go home for a lie-down - a pretty good effort I thought, but also quite sad when I reflect on how I used to socialise (so easily for many more hours, drink in hand!) Oh well, this is the new me now I suppose, sober and tired...
After the birthday party things went downhill quite quickly. We tried to go away for the weekend to a beach house on the central coast to see mum and dad Irwin, but had to come home due to the level of pain I was in. Then on the monday, still in pain, it was back to the RPA. I was expecting to be in for less time than previously, but it ended up being over a week. Activities included a blood transfusion (when my red blood cells were too low), MRI scan on my spine (horrible, so claustrophobic and loud, I still feel ill thinking about it), healing radiation on my lower back and so much morphine I got a bruise around the butterfly and had to ask for injections instead. Fun! Not sure how much of my issues are due to constipation - it is underrated apparently, morphine slows your bowels down, but if you aren't going regularly then pressure causes pain and oral morphine doesn't work (but still slows your system). So bowel movement is key! Anyway, eventually I was discharged with a significant increase in pain killers, mainly morphine tablets, and a community nurse set up for a visit every fortnight.
The firt first few weeks out of hospital were fine, though I definitely feel much weaker and sicker than I have before, which is quite downheartening. Then in the last week or so the pain has come back, which was pretty depressing. Not sure how much is constipation related, so I've been taking lots of bowel drugs to get/keep things moving. Saw doctors yesterday to get stronger painkillers. Finally starting to feel a bit better, though a little dopey from the even stronger drugs - excuse any spelling or grammar errors in the blog!
Sunday, August 7, 2011
Just Call Me Biggles
Yesterday I ticked another item off of my life list - a flight in an open cockpit plane! I went up from Camden Airport in a 1940s Tiger Moth. Unfortunately I had been sick all morning and had been worried that I wouldn't be able to go up, but when the time came the excitement took over and I raced for the cockpit! I was strapped in and given a lovely set of Biggles googles to wear, then we went off for a 30 minute aerobatic and scenic flight. It didn't take much to get the plane off the ground, then we ascended to 4,000 ft. It was amazing to be really experiencing the flight, with the wind in my hair (it gets surprisingly cold up there, out in the open!) Once at 4,000 ft we did some very exciting aerobatics - loop the loop, barrel rolls, hammer head - until my queasiness returned, then we flew low down over the countryside back to the airport. Truely awesome experience!!
Biggles!
The plane (me in front, pilot at back)
Take off
Back to earth
Port, Cuddly Toy & Reclining Comfort
The week before last I had a "port" put into my chest, which is a way of directly accessing a vein (via a titanium ring and catheter) and will be used to give me chemo from now on. It was a minor operation, which took about an hour with me under "conscious sedation" - awake but dozy, with local anaestethic on the chest. I could feel lots of prodding nd pushing whilst they made a few cuts and put the components in the correct place, but no pain. It was a bit sore for a few days after and I have some lovely stitches to keep in for 2 weeks - a very attractive look, luckily I got to wear the Alex Perry frock the night before!
How the port works
Stitches
I have realized that ages ago I made a cuddly toy but never got around to posting it on here. Actually I think I was waiting until I had completely finished it (I had issues with the eyes!) but I haven't had any bright ideas yet, so I figure it is close enough. My cuddly toy is a cute little kangaroo with (an admittedly scary looking) joey in her pouch, done in retro fabric to a Woman's weekly pattern.
Unnamed cuddly kangaroo & joey
Owing to the various aches and pains I now have, our old sofa was just too uncomfortable, so we have now bought a rather lovely leather reclining sofa set. It does make me feel a little bit old, but I have to say that it is really good for tv watching and general lolling about - so comfortable!!
The new sofa
Wednesday, July 27, 2011
Premiere In A Glam Alex Perry Frock!
On Monday I went to the Alex Perry shop in the Strand Arcade to try on a variety of dresses and eventually picked a gorgeous retro-looking dress in charcoal wool and black lace.
Last night I wore this beautiful dress to the premiere of Australia's Next Top Model (Series 7) at Fox Studios! I won tickets to the premiere via the ANTM facebook page and took along my sister Helen. It was really good fun, hosted by Josh Flinn (ANTM model mentor, Alex Perry publicist and all-round nice guy).
We said hi to Josh at the end and he remembered us from Alex Perry head office and sent us up to the after-party - a bonus! We had to maintain a modicum of cool, so didn't take any photos at the after party, and I didn't take any photos at the beginning, as I should have done, so don't really have many photos to put up here, but it was a great night! We were probably a bit shy, so didn't really speak to anyone, just soaked up the ambience :) Sarah Murdoch was there, looking tall and stunning, as usual. Alex Perry spotted my dress immediately, even in conversation with others, and indicated that he loved my look - answering the question as to whether a designer knows all of their dresses and can spot them at 20 paces! Charlotte Dawson, looking glam and chatting to footballer Sam Burgess, also commented on the dress, how lovely it looked, how very flattering and how she has the same one at home! All very exciting, I have never really had anyone comment favourably on my outfit before, let alone two celebs - maybe I should be wearing designer clothes more often...
Last night I wore this beautiful dress to the premiere of Australia's Next Top Model (Series 7) at Fox Studios! I won tickets to the premiere via the ANTM facebook page and took along my sister Helen. It was really good fun, hosted by Josh Flinn (ANTM model mentor, Alex Perry publicist and all-round nice guy).
We said hi to Josh at the end and he remembered us from Alex Perry head office and sent us up to the after-party - a bonus! We had to maintain a modicum of cool, so didn't take any photos at the after party, and I didn't take any photos at the beginning, as I should have done, so don't really have many photos to put up here, but it was a great night! We were probably a bit shy, so didn't really speak to anyone, just soaked up the ambience :) Sarah Murdoch was there, looking tall and stunning, as usual. Alex Perry spotted my dress immediately, even in conversation with others, and indicated that he loved my look - answering the question as to whether a designer knows all of their dresses and can spot them at 20 paces! Charlotte Dawson, looking glam and chatting to footballer Sam Burgess, also commented on the dress, how lovely it looked, how very flattering and how she has the same one at home! All very exciting, I have never really had anyone comment favourably on my outfit before, let alone two celebs - maybe I should be wearing designer clothes more often...
Helen and I ready to go out to the premiere:
The red carpet:
Josh Flinn and I:
Thursday, July 21, 2011
Good Days & Bad Days
Last week was pretty busy, plenty of ups and downs (mostly downs, admittedly!)
On Monday sis and I went to the head office of Alex Perry (designer of stunning dresses for the non-Aussies / non-interested) as organized by the lovely people at SC Johnson to pick out a glam frock to wear to a premiere event (event TBD). It was lots of fun (even if all the samples were size 8 and therefore only fit one boob!) especially since it was Josh Flinn, model mentor from australia's next top model, looking after us :) Unfortunately I couldn't get the dress that I wanted in my size, so I need to go to the retail store, but I'm looking forward to that too!
On Tuesday, I saw the oncologist and got the scan results back - not unexpected, but not good news - the liver mets have worsened and I have multiple bone mets too (chest, ribs, back, hips), so the tablet Chemo is not working, or at least it is not doing enough. So on Wednesday it was back to the hospital for more IV Chemo - I am now on carboplatin + gemcitabine, once a week for two weeks then a week off. I was also given an IV bone treatment called Zometa, which tries to slow down cancer growth in the bones and strengthen them - I'll get this treatment every three weeks. We managed to get the IV in the hand this time, but I am scheduled to get a port put in to make the IV process easier going forward.
I have been in some pain, especially at night, particularly in my lower back and legs. I was getting up during the night to have a bath to try to ease the aches and pains, and struggling during the day to walk normally and get on with life, even with the pain medication that I had. So when on thursday the oncologist called to check that everything was ok, she suggested going into palliative care for a few days to get the pain under control and come up with a plan to manage it going forward. I agreed that if Thursday night wasn't any better I would go to the hospital on the Friday to check in (as if it is a hotel or something!)
Thursday night wasn't any better, another 4am bath, so at 10am Friday I got myself in a chemo bed until I got a bed in the oncology ward at about 5pm. Pain control was via morphine injections (via a "butterfly" into a vein on my stomach) every 4 hours and then whenever I felt I needed it, plus medication to deal with the joyous side effect of morphine - constipation. Every four hours means every four hours, even during the night, so I was being injected at midnight and 4am. The first 24 hours included vital signs monitoring every four hours too - getting blood pressure, temparature etc taken at 4am isn't highly recommended. Especially when the nurse is up for a chat, when to be honest I would really be rather sleeping. I'm a sensitive little soul too, well I must be, because I found the seemingly endless noise (IV machines beeping became a personal favourite) to be a form of torture. It was also decided that I needed to be kept in until Tuesday in order to determine the necessary doses of painkiller then transition to the "at home" method - patches (like nicotine ones for those giving up smoking). I think on the Monday I must have looked like I was about to cry in my sleep-deprived state when they said I needed to stay another day, so I did get a private room for the last night, which was an infinite improvement on being on the ward. Overall, I can recommend the RPA for their care (the food isn't bad either!), should anyone be wondering.
So, I'm back home now, with a pain medication plan that seems to be working.
In other news, I was supposed to have chemo yesterday but my white blood cell / platelet counts were too low so my body couldn't do it, so it has been postponed until next week. Also, I'm getting my port put in tomorrow (a plastic ring that sits under your skin and provides access straight into the vein). Not looking forward to having it done, even the information leaflet description is a bit gruesome, but I can see the advantage of not running out of places to put needles, since it seems that there will be a few more of those in my future...
On Monday sis and I went to the head office of Alex Perry (designer of stunning dresses for the non-Aussies / non-interested) as organized by the lovely people at SC Johnson to pick out a glam frock to wear to a premiere event (event TBD). It was lots of fun (even if all the samples were size 8 and therefore only fit one boob!) especially since it was Josh Flinn, model mentor from australia's next top model, looking after us :) Unfortunately I couldn't get the dress that I wanted in my size, so I need to go to the retail store, but I'm looking forward to that too!
On Tuesday, I saw the oncologist and got the scan results back - not unexpected, but not good news - the liver mets have worsened and I have multiple bone mets too (chest, ribs, back, hips), so the tablet Chemo is not working, or at least it is not doing enough. So on Wednesday it was back to the hospital for more IV Chemo - I am now on carboplatin + gemcitabine, once a week for two weeks then a week off. I was also given an IV bone treatment called Zometa, which tries to slow down cancer growth in the bones and strengthen them - I'll get this treatment every three weeks. We managed to get the IV in the hand this time, but I am scheduled to get a port put in to make the IV process easier going forward.
I have been in some pain, especially at night, particularly in my lower back and legs. I was getting up during the night to have a bath to try to ease the aches and pains, and struggling during the day to walk normally and get on with life, even with the pain medication that I had. So when on thursday the oncologist called to check that everything was ok, she suggested going into palliative care for a few days to get the pain under control and come up with a plan to manage it going forward. I agreed that if Thursday night wasn't any better I would go to the hospital on the Friday to check in (as if it is a hotel or something!)
Thursday night wasn't any better, another 4am bath, so at 10am Friday I got myself in a chemo bed until I got a bed in the oncology ward at about 5pm. Pain control was via morphine injections (via a "butterfly" into a vein on my stomach) every 4 hours and then whenever I felt I needed it, plus medication to deal with the joyous side effect of morphine - constipation. Every four hours means every four hours, even during the night, so I was being injected at midnight and 4am. The first 24 hours included vital signs monitoring every four hours too - getting blood pressure, temparature etc taken at 4am isn't highly recommended. Especially when the nurse is up for a chat, when to be honest I would really be rather sleeping. I'm a sensitive little soul too, well I must be, because I found the seemingly endless noise (IV machines beeping became a personal favourite) to be a form of torture. It was also decided that I needed to be kept in until Tuesday in order to determine the necessary doses of painkiller then transition to the "at home" method - patches (like nicotine ones for those giving up smoking). I think on the Monday I must have looked like I was about to cry in my sleep-deprived state when they said I needed to stay another day, so I did get a private room for the last night, which was an infinite improvement on being on the ward. Overall, I can recommend the RPA for their care (the food isn't bad either!), should anyone be wondering.
So, I'm back home now, with a pain medication plan that seems to be working.
In other news, I was supposed to have chemo yesterday but my white blood cell / platelet counts were too low so my body couldn't do it, so it has been postponed until next week. Also, I'm getting my port put in tomorrow (a plastic ring that sits under your skin and provides access straight into the vein). Not looking forward to having it done, even the information leaflet description is a bit gruesome, but I can see the advantage of not running out of places to put needles, since it seems that there will be a few more of those in my future...
Friday, July 8, 2011
Volcano
i have now seen an active volcano and I can definitely say that it was pretty amazing! We went to Mt Yasur on Tanna Island, Vanuatu - billed as "the world's most accessible volcano". It last had a full eruption about 25 years ago, but it is constantly active and shoots up molten lava from 3 vents 10-20 times every hour. The lava pit was about 50-100m below us, and the lava was being thrown several hundred metres in the air then coming back down to land all around the rim and back in the pit. When we visited it was at level 3 (of 5), which was pretty good as it meant it was active but we were able stand at the top and peer in - when it is level 4 you can only watch from the car park, and when level 5 I think you have to stay back in the village! On the path at the top our guide pointed out a rock about the size of a sofa that had landed there about 3 weeks ago and the path was strewn with rock of various sizes, so you tell that it is fairly active.
Pictures and even video can't really do justice to the experience, but I'll post a few anyway to give an idea:
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Pictures and even video can't really do justice to the experience, but I'll post a few anyway to give an idea:
Our 4WD in the ash field with the volcano in the background:
Rosie and I posting postcards at the volcano postbox (in Vanuatu they like "extreme post" - there is also an underwater postbox!)
Lava eruptions:
I tried to add in a video of a little eruption but after an hour uploading it failed so I don't think that will be possible! It was very impressive though, honest :)
Thursday, June 16, 2011
Dragons!
While not officially on my life list, I had an excellent experience this morning watching a private dragons training session and then meeting the team :) Boots knew someone who know someone who made this happen - it was fantastic! The team and coaches were all really nice, welcomed me and organized group photos plus a couple of individual ones and finished the signature collection on my jersey (kindly started by Scjohnson) We even met Darius Boyd's dog (Charlie), a very cute little thing who was brought along as he is being looked after by a teammate while Boyd goes to Brisbane for the game tomorrow night!
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Boots & I with the team:
Coach Wayne Bennett getting my jersey signed:
Jason Nightingale (my favourite player) and myself:
Saturday, June 11, 2011
Pills Pills Pills
I have been on new Chemo for a week or so now, to try to reduce the latest cancer metastases in my liver. This time it is a drug called xeloda, which I take as tablets, four pills twice per day. Each cycle is two weeks on, one week off. The only side effect so far is occasional nausea, which can actually be really painful - retching with this chest pain - ouch!! I definitely prefer Chemo pills to getting it via IV though, so I really hope that these work, at least for a while, would make life much easier. I am going to do two cycles on xeloda and then get a ct scan to see if they are working.
I still have some aches and pains, which I think are related to the cancer rather than the Chemo. My lower back aches quite a lot and sneezing/yawning/hiccups/sitting up really hurts my chest. I have a selection of "hillbilly heroin" painkillers to take, but they don't seem to make much difference, make me feel a bit dopey and I don't want to be reliant on painkillers just yet, so I am trying not to take them.
I went to a Chinese doctor to try some alternative therapy on Wednesday and had a great electroacupuncture session (pressure points like acupuncture but using little electric shocks!) so I'm looking forward to another one next week. He also gave me a selection of Chinese herbs to improve blood circulation and digestion, which I am going to trial for a few weeks, see if they make a difference - not sure yet if they are doing anything, but keeping an open mind!
We have booked to go to Vanuatu at the end of June, to see an active volcano and also to spend some relaxing beach time. I'm a bit worried about taking a turn for the worse, either before we go or while we are away, but (touch wood) hopefully all will be well and we'll have a great time :)
I still have some aches and pains, which I think are related to the cancer rather than the Chemo. My lower back aches quite a lot and sneezing/yawning/hiccups/sitting up really hurts my chest. I have a selection of "hillbilly heroin" painkillers to take, but they don't seem to make much difference, make me feel a bit dopey and I don't want to be reliant on painkillers just yet, so I am trying not to take them.
I went to a Chinese doctor to try some alternative therapy on Wednesday and had a great electroacupuncture session (pressure points like acupuncture but using little electric shocks!) so I'm looking forward to another one next week. He also gave me a selection of Chinese herbs to improve blood circulation and digestion, which I am going to trial for a few weeks, see if they make a difference - not sure yet if they are doing anything, but keeping an open mind!
We have booked to go to Vanuatu at the end of June, to see an active volcano and also to spend some relaxing beach time. I'm a bit worried about taking a turn for the worse, either before we go or while we are away, but (touch wood) hopefully all will be well and we'll have a great time :)
Thursday, June 2, 2011
Incurable
It seems that while radiation may have worked on the cancer in the lymph nodes, the worst has happened and it has now spread further, to my liver, and is incurable. I had chest pain on the weekend and got a ct scan to look for a potential blood clot, which showed multiple areas of cancer on my liver :( My chest is hurting because they are pushing on my diapragm (sp?) so causing pain when I breathe (which is all the time, obviously).
This news is unsurprisingly devastating. I started Chemo (tablets) today to try to slow it down, bit given the speed it has grown (scans two months ago were clear) the oncologist is very concerned. Worst case is that Chemo doesn't work, cancer causes liver failure and I die within the next few months. Best case is that this Chemo or another one can stabilize it for a few years. Guess I wasn't meant to get old and grey, but to die young and beautiful (well, you know what I mean!)
The US trip is now off since if I were to fall ill and/or die it would be rather costly there and I can't get insurance. Appealing to the better nature of qantas (who seem reasonable) and sta travel (who do not!) to get a refund. Considering coming to the uk instead, to see family and friends. At least I'll get healthcare there and can perhaps see a bit of Europe if I'm feeling ok.
This news is unsurprisingly devastating. I started Chemo (tablets) today to try to slow it down, bit given the speed it has grown (scans two months ago were clear) the oncologist is very concerned. Worst case is that Chemo doesn't work, cancer causes liver failure and I die within the next few months. Best case is that this Chemo or another one can stabilize it for a few years. Guess I wasn't meant to get old and grey, but to die young and beautiful (well, you know what I mean!)
The US trip is now off since if I were to fall ill and/or die it would be rather costly there and I can't get insurance. Appealing to the better nature of qantas (who seem reasonable) and sta travel (who do not!) to get a refund. Considering coming to the uk instead, to see family and friends. At least I'll get healthcare there and can perhaps see a bit of Europe if I'm feeling ok.
Sunday, May 29, 2011
Radiation finished!
I had my last radiation session on Friday, so that is now done - 33 sessions including 5 "boost" blasts to give some extra dosage to some of the lymph node areas (I think). Now just have to wait 6-8 weeks whilst it continues working then get more scans to see if it has done the job. The area that has been treated is quite obvious from the skin - it is quite clearly marked with what looks like sunburn - funny looking but should go down over the next few weeks :) I'm also occasionally having pain when breathing, hoping that will stop soon, since it is something I try to do regularly!
Tuesday, May 17, 2011
Radiation Side Effects
I'm now well into radiation (about 23/33) and the promised side effects have now appeared! They really seemed to come up quickly over the last few days. The skin of the treated areas is red/blackish brown, like a really bad sunburn. My underarm is particularly painful! All I can do is apply sorbelene several times a day and wait for it to go away, in a month or so... I'm also really tired. Other than that, all good :) The lumps on my neck seem to be going down, which is good, hopefully the other ones that I can't feel are being successfully zapped too!
I have booked a trip to the USA with Hubby for when radiation has finished, so really looking forward to that! Will be ticking a few more things off the life list - LA to Vegas in a convertible and New York :)
I have booked a trip to the USA with Hubby for when radiation has finished, so really looking forward to that! Will be ticking a few more things off the life list - LA to Vegas in a convertible and New York :)
Friday, April 22, 2011
Radiation & Life List Update
I have now had 9 radiation sessions (out of 33). I have to go in every day (except weekends and public holidays) for about 20 minutes. Most of that time is set up - they draw on me with marker pen around my tattoos and then turn off the lights and use lasers and "shadow rulers" to line them up according to certain measurements (22.7 then 95.8, whatever that means, then chin to chest of 10cm). They go out of the room whilst the radiation is on progress, as when you get an x-ray, then come back in to reset the machine for the next area - I think I have 5 blasts aimed at various areas each day. I can't feel anything at the time, other than a slightly achy arm from holding it above my head for 20 minutes, but after a couple of weeks the area being treated (neck, breast, underarm) will go red, similar to a bad sunburn, then get worse, eventually getting better about 3 weeks after radiation finishes.
I am also now on a monthly injection to shut down my ovaries, so that they don't produce estrogen. This is because the initial breast cancer biopsy showed the cancer cells there were estrogen-receptive (meaning estrogen helps them to grow). However, yesterday the oncologist called to say that the biopsy on the new nodes in my neck showed that while they look like breast cancer cells (as opposed to another type of cancer) they are not estrogen receptive. This is a bit strange, we will continue with the injection (since I haven't been having any adverse side effects), but I am a bit concerned that the hormone treatments aren't actually going to do anything. A bit more discussion is required, I think...
Life list update: I ended up having a week off between hospital appointments before radiation started, so I decided to make the most of the opportunity and snuck off to an island called Bohol in the Philippines, where the star attractions (other than some lovely beaches) are the world's smallest primates (tarsiers) and the Chocolate Hills. I didn't actually get to hold a tarsier in my hand but I did get to see them very close up in their natural habitat so I am very happy, as I have wanted to see them since I first read about them (when I lived in the Philippines ten years ago). They are about the size of a fist, have massive eyes and are noctural so looked a bit dopey, but they are possibly the cutest animal ever - I wanted to take one home! The Chocolate Hills weren't technically on my life list, but since they are on the same island as the tarsiers I always planned to see both. There are thousands of hillocks, about 100m high, dotted over the landscape and at the end of summer they turn brown and look like chocolate drops, hence the name. They weren't brown yet (about the end of May is best I believe) but they were still amazing, very impressive. Photos below...
I am also now on a monthly injection to shut down my ovaries, so that they don't produce estrogen. This is because the initial breast cancer biopsy showed the cancer cells there were estrogen-receptive (meaning estrogen helps them to grow). However, yesterday the oncologist called to say that the biopsy on the new nodes in my neck showed that while they look like breast cancer cells (as opposed to another type of cancer) they are not estrogen receptive. This is a bit strange, we will continue with the injection (since I haven't been having any adverse side effects), but I am a bit concerned that the hormone treatments aren't actually going to do anything. A bit more discussion is required, I think...
Life list update: I ended up having a week off between hospital appointments before radiation started, so I decided to make the most of the opportunity and snuck off to an island called Bohol in the Philippines, where the star attractions (other than some lovely beaches) are the world's smallest primates (tarsiers) and the Chocolate Hills. I didn't actually get to hold a tarsier in my hand but I did get to see them very close up in their natural habitat so I am very happy, as I have wanted to see them since I first read about them (when I lived in the Philippines ten years ago). They are about the size of a fist, have massive eyes and are noctural so looked a bit dopey, but they are possibly the cutest animal ever - I wanted to take one home! The Chocolate Hills weren't technically on my life list, but since they are on the same island as the tarsiers I always planned to see both. There are thousands of hillocks, about 100m high, dotted over the landscape and at the end of summer they turn brown and look like chocolate drops, hence the name. They weren't brown yet (about the end of May is best I believe) but they were still amazing, very impressive. Photos below...
Thursday, March 31, 2011
Scan Results & Radiation Planning
The scan results are in... Thankfully it seems that cancer hasn't spread any further than the lymph nodes that we knew about - several in my underarm and neck on the right side. Cancer cells can apparently move around the body via lymph or blood, and mine (touch wood) don't seem to be moving around in the blood at the moment (that would be worse, as that is how it would get into organs or bones). Nobody can explain why the Chemo killed the cancer in the breast but allowed more to develop in the neck, bit of a mystery and seems to be of concern but we will just get on with treatment...
I had another biopsy on the lump in my neck yesterday, a core one this time (a really big needle that requires slicing skin with a scapel to get it in!) so that it can be tested for estrogen receptors. I have started on one hormone treatment already, a monthly injection to shut down my ovaries, on the assumption that it will be receptive, as the breast cancer was. I'll also be taking hormone tablets everyday, but not until after radiation.
Surgery is still on the backburner - essentially it seems as if that horse has already bolted - once it has spread they don't recommend cutting bits out/off. So I'll be keeping the girls natural, at least for while and possibly I won't ever have surgery... More Chemo is also not recommended again at this point, but maybe in the future if it ever spread again.
Radiation will be starting the week after next and it is now going to be more intensive and for longer than was initially expected. I had a planning session this week, where we went through the set up position that I will be in for each session (every workday for 2 months!) They have even given me four attractive tattoos - little black dots - that will be used to lined up laser beams each time. I even agreed that the medical student could do the tattoos - I think she did a good job, fingers crossed she got them in the right place :)
I had another biopsy on the lump in my neck yesterday, a core one this time (a really big needle that requires slicing skin with a scapel to get it in!) so that it can be tested for estrogen receptors. I have started on one hormone treatment already, a monthly injection to shut down my ovaries, on the assumption that it will be receptive, as the breast cancer was. I'll also be taking hormone tablets everyday, but not until after radiation.
Surgery is still on the backburner - essentially it seems as if that horse has already bolted - once it has spread they don't recommend cutting bits out/off. So I'll be keeping the girls natural, at least for while and possibly I won't ever have surgery... More Chemo is also not recommended again at this point, but maybe in the future if it ever spread again.
Radiation will be starting the week after next and it is now going to be more intensive and for longer than was initially expected. I had a planning session this week, where we went through the set up position that I will be in for each session (every workday for 2 months!) They have even given me four attractive tattoos - little black dots - that will be used to lined up laser beams each time. I even agreed that the medical student could do the tattoos - I think she did a good job, fingers crossed she got them in the right place :)
Tuesday, March 22, 2011
Cancer Rollercoaster - Update
Unfortunately the biopsy of the lymph node on my neck showed cancer cells, so it seems that while the Chemo worked well on the initial cancer it has somehow still spread. Not good news. I am having more tests this week, CT and bone scans again, to see if it has spread any further than the neck - fingers crossed not. I'll get a new treatment plan next week, which depends on the results of the scans, but is likely to include even more radiation than had been planned, hormone treatment and potentially more Chemo. Mastectomy is on hold for awhile, as the focus shifts to controlling the growth.
All in all, not a great day. "A setback", as my oncologist says, "but it doesn't mean you'll die tomorrow or anything". Not particularly comforting. However, some googling seems to reveal that even stage IV isn't necessarily a death sentence and can be controlled for years with various drugs, so here's hoping I can successfully fight this. I'm feeling a little bit down, not to mention sore from the biopsy, but trying to stay positive.
All in all, not a great day. "A setback", as my oncologist says, "but it doesn't mean you'll die tomorrow or anything". Not particularly comforting. However, some googling seems to reveal that even stage IV isn't necessarily a death sentence and can be controlled for years with various drugs, so here's hoping I can successfully fight this. I'm feeling a little bit down, not to mention sore from the biopsy, but trying to stay positive.
Thursday, March 17, 2011
Cancer Rollercoaster
After the excitement of last week, this week hasn't brought quite so much joy...
Yesterday I met with a plastic surgeon to discuss reconstruction. I will post more information on my options for reconstruction and some amusing anecdotes another time, but one interesting thing I learnt is that if I choose to have a preventative mastectomy it would actually be done at the time of the reconstruction rather than the main mastectomy and lymph node dissection, in order to preserve the skin for use in the reconstruction. I wasn't expecting that, I assumed that it would be done as a double mastectomy.
This afternoon I met with the specialist/surgeon to get feedback from the multi-displinary meeting at lunchtime where they discussed my case and potential next steps. The verdict was unanimous - mastectomy. Not really a surprise there, I expected that was the sensible approach. It will be scheduled within the next few weeks.
Anyway, onto the (potentially) bad news... Last night I felt another lump, this time in my lower neck, just above my collar bone, on the same side as the breast cancer. It is about the size of a pea (or maybe a little bigger, perhaps a wasabi pea). I mentioned this to the specialist and he had a feel and sent me immediately off for a biopsy. The lump is apparently in my lymph nodes and from conversation previously with the radiation oncologist this is where breast cancer often spreads next, after lymph nodes in the armpit (she was planning to radiate the neck lymph node area anyway because of this). I get the results of the biopsy next tuesday, but I am expecting that it will show cancer cells, given the side and location. I don't know what impact (if any) that will have on the rest of my treatment plan, I need to do some googling and see what the specialist has to say next week.
Yesterday I met with a plastic surgeon to discuss reconstruction. I will post more information on my options for reconstruction and some amusing anecdotes another time, but one interesting thing I learnt is that if I choose to have a preventative mastectomy it would actually be done at the time of the reconstruction rather than the main mastectomy and lymph node dissection, in order to preserve the skin for use in the reconstruction. I wasn't expecting that, I assumed that it would be done as a double mastectomy.
This afternoon I met with the specialist/surgeon to get feedback from the multi-displinary meeting at lunchtime where they discussed my case and potential next steps. The verdict was unanimous - mastectomy. Not really a surprise there, I expected that was the sensible approach. It will be scheduled within the next few weeks.
Anyway, onto the (potentially) bad news... Last night I felt another lump, this time in my lower neck, just above my collar bone, on the same side as the breast cancer. It is about the size of a pea (or maybe a little bigger, perhaps a wasabi pea). I mentioned this to the specialist and he had a feel and sent me immediately off for a biopsy. The lump is apparently in my lymph nodes and from conversation previously with the radiation oncologist this is where breast cancer often spreads next, after lymph nodes in the armpit (she was planning to radiate the neck lymph node area anyway because of this). I get the results of the biopsy next tuesday, but I am expecting that it will show cancer cells, given the side and location. I don't know what impact (if any) that will have on the rest of my treatment plan, I need to do some googling and see what the specialist has to say next week.
Thursday, March 10, 2011
A Medical Miracle??
Having finished my course of chemotherapy, this week I had an ultrasound and met with the surgeon to discuss results and next steps. After getting "excellent, excellent" as the comment from him after a feel at our midway appointment, this time it stepped up to "incredible"! Apparently the ultrasound showed no cancer and he can't feel anything either, meaning I have responded really well to the chemo. Excellent news :) I think the lump actually disappeared after the very first chemo, from what I could feel anyway - perhaps eating grapefruit and sunbathing topless did the trick?? Not that I have done either for quite awhile...
However, because of this, I've not been booked in for surgery yet - he wants to discuss my case with the multi-disciplinary team (oncologists, breast surgeons, radiation specialists etc) at their meeting next Thursday before deciding on the next steps. He suggested that perhaps they would recommend an MRI to have a more detailed look at what is happening (or not happening, as the case may be). It doesn't appear to be a situation that they are commonly faced with - usually there is at least a small lump or something that can be seen or felt.
My guess is that the team will still recommend surgery, a mastectomy and lymph node removal, to be on the safe side. From what I have read, just because they cannot see cancer, doesn't mean that it isn't still there, lurking... A quick google reveals people on breast cancer forums who have been in the same situation and there are a variety of outcomes - people who still had mastectomies and nothing was found, people who had mastectomies and cancer was found lurking, and people who didn't have surgery and it didn't return years later. I didn't actually find one where they didn't have surgery and it did return, but I'm sure that happens too. It seems that generally surgery does go ahead, even if the cancer seems to have disappeared, just to be sure. To be honest, while I am obviously not too keen on the thought of a mastectomy (single or double) and I would hate to have one unnecessarily, I also think I would be very worried about it coming back if no further action were taken, so I'm not too sure what I am hoping for now, it is all a bit unnerving...
I have an appointment with a plastic surgeon next week to discuss reconstruction options and the breast surgeon wants me to still go to that appointment, so I think I will be boobless by the end of March, but I guess we'll have to wait and see...
However, because of this, I've not been booked in for surgery yet - he wants to discuss my case with the multi-disciplinary team (oncologists, breast surgeons, radiation specialists etc) at their meeting next Thursday before deciding on the next steps. He suggested that perhaps they would recommend an MRI to have a more detailed look at what is happening (or not happening, as the case may be). It doesn't appear to be a situation that they are commonly faced with - usually there is at least a small lump or something that can be seen or felt.
My guess is that the team will still recommend surgery, a mastectomy and lymph node removal, to be on the safe side. From what I have read, just because they cannot see cancer, doesn't mean that it isn't still there, lurking... A quick google reveals people on breast cancer forums who have been in the same situation and there are a variety of outcomes - people who still had mastectomies and nothing was found, people who had mastectomies and cancer was found lurking, and people who didn't have surgery and it didn't return years later. I didn't actually find one where they didn't have surgery and it did return, but I'm sure that happens too. It seems that generally surgery does go ahead, even if the cancer seems to have disappeared, just to be sure. To be honest, while I am obviously not too keen on the thought of a mastectomy (single or double) and I would hate to have one unnecessarily, I also think I would be very worried about it coming back if no further action were taken, so I'm not too sure what I am hoping for now, it is all a bit unnerving...
I have an appointment with a plastic surgeon next week to discuss reconstruction options and the breast surgeon wants me to still go to that appointment, so I think I will be boobless by the end of March, but I guess we'll have to wait and see...
Thursday, February 24, 2011
Final Chemo - Hurrah!
On Tuesday I had my final chemo session - hopefully I won't ever have to go through that again! I now just have to get through the last cycle of side effects (terrible stomach pains today) and then it will be on to the next stage of treatment - surgery (eek!)
I will get an ultrasound in two weeks time and then I meet with the mastectomy surgeon to assess the success of the chemo and arrange the surgery date. I also have an appointment with a plastic surgeon to discuss reconstruction options, although that won't happen for 3-6 months after radiotherapy, to avoid damaging the reconstruction and to allow the radiation to heal.
My genetic testing results came up as "inconclusive", meaning they didn't find any mutations in the BRCA1 and BRCA2 genes, but that I am still considered high risk for there being a genetic reason to my cancer. So it feels strange - not that I necessarily wanted a positive result, but since it is not negative result either it is just a bit inconclusive really. It is up to me now to decide whether I want to have a double mastectomy to avoid the risk of a new breast cancer in the other side in the future, or whether I just have a single. I'm leaning towards having a double, since I think that if I am going to have surgery and live without one boob anyway for six months, it might as well be for two boobs, but I'll talk to the surgeons to get their opinions before I decide.
Once I have recovered from surgery, about mid-April, I am going to start radiotherapy. This only takes 20 minutes but has to be done every day (well, weekdays) for 6-7 weeks, so imagine that is going to get a bit tiresome. They do have parking though - woohoo! There will be 4-5 beams of radiation aimed at various points on my chest/neck, with the rays 1,000 more powerful than an x-ray. They permanently tattoo marks on to my skin to assist with lining up in exactly the same position each day. Apparently the side effects are minimal (especially compared to chemo), just hope the radiation doesn't cause another cancer in years to come... The radiation oncologist even pointed out that I won't be radioactive, so I can be around pregnant women - I hadn't even considered the possibility that I would be radioactive, so lucky that is not the case!
I will get an ultrasound in two weeks time and then I meet with the mastectomy surgeon to assess the success of the chemo and arrange the surgery date. I also have an appointment with a plastic surgeon to discuss reconstruction options, although that won't happen for 3-6 months after radiotherapy, to avoid damaging the reconstruction and to allow the radiation to heal.
My genetic testing results came up as "inconclusive", meaning they didn't find any mutations in the BRCA1 and BRCA2 genes, but that I am still considered high risk for there being a genetic reason to my cancer. So it feels strange - not that I necessarily wanted a positive result, but since it is not negative result either it is just a bit inconclusive really. It is up to me now to decide whether I want to have a double mastectomy to avoid the risk of a new breast cancer in the other side in the future, or whether I just have a single. I'm leaning towards having a double, since I think that if I am going to have surgery and live without one boob anyway for six months, it might as well be for two boobs, but I'll talk to the surgeons to get their opinions before I decide.
Once I have recovered from surgery, about mid-April, I am going to start radiotherapy. This only takes 20 minutes but has to be done every day (well, weekdays) for 6-7 weeks, so imagine that is going to get a bit tiresome. They do have parking though - woohoo! There will be 4-5 beams of radiation aimed at various points on my chest/neck, with the rays 1,000 more powerful than an x-ray. They permanently tattoo marks on to my skin to assist with lining up in exactly the same position each day. Apparently the side effects are minimal (especially compared to chemo), just hope the radiation doesn't cause another cancer in years to come... The radiation oncologist even pointed out that I won't be radioactive, so I can be around pregnant women - I hadn't even considered the possibility that I would be radioactive, so lucky that is not the case!
Saturday, February 5, 2011
Chemo - 5 down, 1 to go
Chemo seems to be similar to last time - vein issues at the time, aches have set in a few days later, and the pains will probably start soon. Only new thing to report is that I have lost almost all my eyelashes, and my eyebrows are fairly sparse too (I'm looking a bit alien-like!) Leg hair seems to still be going strong though - typical, useful hair falls out while the useless hair stays put...
Friday, January 28, 2011
Surgery and Genetic Mistakes
I'm feeling much better after the last chemo, the only residual issue is really sore eyes. I get to go through it all again next week, so not really looking forward to that, but at least I know that the pain does go away - last time I was worried it was going to be like that for the remaining months of chemo.
This week I met with the specialist/surgeon. He had a bit of a feel and announced that he is very pleased with the response to chemo ("excellent, excellent"), since there is no longer really a lump to feel, which is good news. He is still recommending a masectomy though, given how big it was and the fact it is in the lymph nodes (they have to come out too). Apparently they can reconstruct on the same day though - after the specialist does the removal, a plastic surgeon would take fat from my stomach and use it to rebuild. I asked how much fat he could take, while he is there, get rid of the excess would be nice... Bet I'm not the first person to have asked that! I think that a reconstruction at the same time would be psychologically better than waking up from surgery with no boob, especially if it is only on one side. I keep thinking of being in primary school, typing 55378008 into a calculator and then turn it upside down to show "boobless" - hilarious when you are eight, now a little more sensitive...
Anyway, it would be almost a whole day operation. I thought it might be like getting my wisdom teeth out, so I asked if I go home that night - "er, no". It would be a week in hospital. There is something about having "drains",which I am not yet sure on the details of, but doesn't sound appealing. I asked how much surgery would cost and didn't get a straight answer - "quite expensive", "you have to negotiate with the plastic surgeon" - hmm, I'm guessing plastic surgeons drive flash cars for a reason...
This week I also had an interesting chat with a genetic counsellor. Apparently we have about 30,000 genes, but so far they (scientists) have identified two as potentially causing breast cancer (imaginatively named BRCA1 and BRCA2, breast cancer 1 and 2, although they also cover ovarian cancer). Everyone has these genes and usually the code sequence is the same for everyone, which tells the body how to operate. However, some people have a genetic "mistake" or "mutation", perhaps a missing or additional piece of code, which can mess up the instructions to the body and cause cancer. I am at a high risk of having a genetic mistake because (i) I have breast cancer at a relatively young age and (ii) there are more than two instances in the family history. So my blood is being tested and I will get the results in 4-6 weeks. If the result is positive, it means a 50% chance of developing cancer in the other breast (and/or ovaries, but that would probably be at a later stage). I don't really like those odds and I don't like the thought of waiting to go through all this again at some point in the future, so I think I would opt for a bilateral(double) masectomy - on the plus side it would mean removing more fat from my stomach and it should be easier to get them nice and even :)
This week I met with the specialist/surgeon. He had a bit of a feel and announced that he is very pleased with the response to chemo ("excellent, excellent"), since there is no longer really a lump to feel, which is good news. He is still recommending a masectomy though, given how big it was and the fact it is in the lymph nodes (they have to come out too). Apparently they can reconstruct on the same day though - after the specialist does the removal, a plastic surgeon would take fat from my stomach and use it to rebuild. I asked how much fat he could take, while he is there, get rid of the excess would be nice... Bet I'm not the first person to have asked that! I think that a reconstruction at the same time would be psychologically better than waking up from surgery with no boob, especially if it is only on one side. I keep thinking of being in primary school, typing 55378008 into a calculator and then turn it upside down to show "boobless" - hilarious when you are eight, now a little more sensitive...
Anyway, it would be almost a whole day operation. I thought it might be like getting my wisdom teeth out, so I asked if I go home that night - "er, no". It would be a week in hospital. There is something about having "drains",which I am not yet sure on the details of, but doesn't sound appealing. I asked how much surgery would cost and didn't get a straight answer - "quite expensive", "you have to negotiate with the plastic surgeon" - hmm, I'm guessing plastic surgeons drive flash cars for a reason...
This week I also had an interesting chat with a genetic counsellor. Apparently we have about 30,000 genes, but so far they (scientists) have identified two as potentially causing breast cancer (imaginatively named BRCA1 and BRCA2, breast cancer 1 and 2, although they also cover ovarian cancer). Everyone has these genes and usually the code sequence is the same for everyone, which tells the body how to operate. However, some people have a genetic "mistake" or "mutation", perhaps a missing or additional piece of code, which can mess up the instructions to the body and cause cancer. I am at a high risk of having a genetic mistake because (i) I have breast cancer at a relatively young age and (ii) there are more than two instances in the family history. So my blood is being tested and I will get the results in 4-6 weeks. If the result is positive, it means a 50% chance of developing cancer in the other breast (and/or ovaries, but that would probably be at a later stage). I don't really like those odds and I don't like the thought of waiting to go through all this again at some point in the future, so I think I would opt for a bilateral(double) masectomy - on the plus side it would mean removing more fat from my stomach and it should be easier to get them nice and even :)
Sunday, January 16, 2011
Getting Worse
I am so sore now, I'm not sure if it is muscle ache or bone ache, but even my insides hurt and I've moved from nausea to actual vomit :( This is the first time that I really feel rough, as you would expect a cancer patient to feel I suppose... Fingers crossed that this will pass soon, as it is taking it out of me - harder to stay positive when feeling sicky-sick-sick!
Saturday, January 15, 2011
Aches & Pains
It seems that I was a little premature in thinking this chemo was going to be better - the muscle ache side effect of docetaxel has kicked in - yesterday I felt like I had run the city to surf given the soreness in my legs and ankles. The pain was so bad that I was awake most of the night, so I'm exhausted now. The oncologist gave a prescription for strong painkillers that I was hoping I wouldn't need to use - I'll be getting those today! Really hoping that it doesn't last too long, I will be really hard to be like this for weeks or months, so fingers crossed it will "only" be a few days...
Thursday, January 13, 2011
Chemo - 4 down, 2 to go
I had my fourth chemo treatment on Tuesday, new drug this time - Docetaxel. Initially the nurse tried to go in my left hand, the same vein as last time, which immediately blew (went through to the other side) so we had to move to the right hand. I have some quite impressive bruising on both hands now! Apparently the damage isn't permanent though, just some internal scarring that will eventually heal.
Luckily I was in the 60% who don't have a reaction to the drug (difficulty breathing) so that was fairly uneventful. I got to wear some lovely cold mittens and slippers to try to prevent damage to my hands/feet/nails so hopefully they did the job:
There has been much less nausea this time, but I have to admit that I am really tired.
Not too much else to report. I have appointments with the surgeon and genetic counsellors for the week after next, to discuss surgery and whether a potential genetic "mistake" caused my cancer at this age respectively. Will keep posting any news as I get it.
Luckily I was in the 60% who don't have a reaction to the drug (difficulty breathing) so that was fairly uneventful. I got to wear some lovely cold mittens and slippers to try to prevent damage to my hands/feet/nails so hopefully they did the job:
There has been much less nausea this time, but I have to admit that I am really tired.
Not too much else to report. I have appointments with the surgeon and genetic counsellors for the week after next, to discuss surgery and whether a potential genetic "mistake" caused my cancer at this age respectively. Will keep posting any news as I get it.
Saturday, January 8, 2011
(Virtual) Headwear Fashion Show
For those who haven't seen me since I became a baldie, I thought I would post a selection of my new headwear looks (apologies for the dodgy photography - they were taken by myself in the bathroom on my iphone!)
My second wig - $40 from Paddy's market and annoyingly I think I prefer it to the $500 one:
Hats and scarves from the US (sorry Gerry, Bernie et al, but it really isn't unAustralian to buy online!):
Scarves made by mum from material made in Marrickville (thanks Mum!):
My second wig - $40 from Paddy's market and annoyingly I think I prefer it to the $500 one:
Hats and scarves from the US (sorry Gerry, Bernie et al, but it really isn't unAustralian to buy online!):
Scarves made by mum from material made in Marrickville (thanks Mum!):
Life List Update
I can't cross any more off my list (all the travel ones are on hold) but some are at least in progress thanks to to some excellent Christmas presents:
- Hubby gave me a ride in a Tiger Moth, as well as 4 laps of Eastern Creek raceway in a V8 race car for hubby and I, so I'm really looking forward to those this year :)
- Work gave me a lovely Japanese Maple bonsai tree and some guides to growing them - I keep looking at it nervously on the coffee table, somewhat fearful that I am going to kill it (I do have a tendency to forget to water plants) but hopeful that it will miraculously flourish!
- Mum & Dad Irwin gave me a teddy bear pattern, so I need to get some material and brush up on my sewing in order to get that made, hopefully this month
- I bought myself the entire BBC Shakespeare Collection - 37 DVDs to watch over the coming months, some quality couch time there! I have also a lovely book containing an overview and each of the plays, which I have started reading to try to decide an order to watch them in (thanks Mum & Dad Irwin)
Thursday, January 6, 2011
Christmas holidays
I had a lovely Christmas holidays, despite the Chemo on 21 Dec. I managed to eat reasonably normally, including oysters, prawns, ham and turkey for our Christmas buffet :) Couldn't face alcohol though, even when the Moet came out. Lots of family time (mine and boots') was great, including being on the farm for a few days. We spent some great time on the beach, even if I feel slightly self-conscious as a baldie. (interestingly, sunrise tv show this morning said that bald is hot - nice to be on-trend!) I did recover sufficiently to drive the convertible home with Rosie - it was good to get some use from the "mid-life crisis before the real crisis" car!
I'm in the last week of the third chemo cycle, feeling ok, but a little tired with really sore eyes. This happened last cycle too, so I think that it is normal. My arm was much better this time though, thankfully, a little bit sore but not crippling (I'm not quite game for a trapeze class yet, but watch this space!)
I am feeling slightly apprehensive about Chemo next week. Not only the ongoing side effects, but apparently whilst it is being given about 40% of people have issues such as not being able to breathe... Hmm... They have to stop the treatment and restart once you can breathe again! Hopefully I will be in the 60%...
This week there has been lots of talk of breast cancer, with the McGrath foundation raising money for their breast care nurses at the cricket (another aside - it is very unfair that since I became Australian the team is terrible - maybe I should have stuck with England!) Anyway, I have been thinking about Jane McGrath a bit recently, given some of the similarities - English, Aussie husband, diagnosed with breast cancer at a relatively young age, etc. I don't know many specifics about her case, but I am really hoping that it doesn't end the same way... I do have to face that it is a possibility, but fingers crossed I will be lucky and able to successfully fight it long term.
I don't have any updates on my surgery yet, but I'm hoping to book an appointment with the specialist in the next week or two. I'll post an update about chemo #4 and any other news next week.
I'm in the last week of the third chemo cycle, feeling ok, but a little tired with really sore eyes. This happened last cycle too, so I think that it is normal. My arm was much better this time though, thankfully, a little bit sore but not crippling (I'm not quite game for a trapeze class yet, but watch this space!)
I am feeling slightly apprehensive about Chemo next week. Not only the ongoing side effects, but apparently whilst it is being given about 40% of people have issues such as not being able to breathe... Hmm... They have to stop the treatment and restart once you can breathe again! Hopefully I will be in the 60%...
This week there has been lots of talk of breast cancer, with the McGrath foundation raising money for their breast care nurses at the cricket (another aside - it is very unfair that since I became Australian the team is terrible - maybe I should have stuck with England!) Anyway, I have been thinking about Jane McGrath a bit recently, given some of the similarities - English, Aussie husband, diagnosed with breast cancer at a relatively young age, etc. I don't know many specifics about her case, but I am really hoping that it doesn't end the same way... I do have to face that it is a possibility, but fingers crossed I will be lucky and able to successfully fight it long term.
I don't have any updates on my surgery yet, but I'm hoping to book an appointment with the specialist in the next week or two. I'll post an update about chemo #4 and any other news next week.
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