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...
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