A lot has happened since i last posted on here and i'm happy to say that it's all been ok. After my last post the plan was that my gyno would remove my left ovary all together and do a curet at the same time so he could send some cells away to be checked just in case. I was pretty upset at that decision but thought it would be the best one because he wasn't removing both, just one which still left me with a chance to have more kids and sort out the cyst at the same time.
Luckily though (and suprising for me) i got my period at the same time that they were trying to get me in for surgery which changed everything. He was still going to go ahead with the surgery but after speaking with my oncologist we decided not to worry and to see what my body would do and have another scan in 6 weeks time.
So i did and to my wonderful suprise, the 7cm cyst was gone! For once my body did what it was supposed to. The one on my right side had gotten slightly bigger but still nothing compared to the one that i had on my left so that didn't worry me.
From here i was feeling really good......my oncologist was happy with how i've been going. My fatigue symptoms have all but gone and i'm only a few months away from my 2 year mark for being on tamoxifen. If it wasn't so close to the 2 year she would have put me on Zoledex to stop my periods but she's happy for me to continue to have them and stay on the tamoxifen for another 3 years.
After all of this i've been really happy. Really back into the swing of work (a bit too much actually!) and having energy but then my gyno called me out the blue one day to say he'd booked me in for a curet the next wednesday (which would have been 2 days ago) because he still wants to check and make sure i dont have any abnormal cells. He really doesn't get it at all, this whole cancer thing. He's never treated a patient like me before (breast cancer, meningitis etc) and the whole time he was talking to me he made it sound as if he's really concerned that i have endrometrial cancer now and to be honest he sort of pissed me off. He's trying to be on the safe side and i get that, but at the same time i'm finally in a good place and i don't need him taking that away from me.
We agreed that i would get another scan to see if my endrometrial lining was still thick like it was a few months ago. I had the scan and it showed it was the same as it was before so my immediate reaction was excellent, it's not worse so that's fine. So i told him no thanks. Thanks for the call but i'll take the oncoloogists advise that i received a long time ago - dont go looking for trouble.
I spoke to my oncologist just a few days ago to let her know that he still wanted to do one and i asked what she thought and unfortunately she has told me that i actually should get it. Nothing like an oncologist to put things as 'this is how it is'. Basically i need to just get it done and see what the results are. If there are cancer cells, we have to deal with it (hysterectomy) but if i dont get it done and leave it, and there are cancer cells there then she wont be able to help me pretty much.
So that's where i'm up to at the moment. I'm just waiting for an appointment at the moment and it's just a curet so i don't care about the procedure at all, i know there's nothing to it (just going under again which i hate) but otherwise that part of it's fine and easy. It's the waiting for the results and the what if's that could come with it. I'm in such a good place at the moment - the best i've been in in about 2 years and i dont want to go backwards, only forwards.
Anyway once again i'm just doing what i'm told to do and will deal with it if i have to but this time at least i've got a very positive attitude that it wont be anything at all and that i shouldnt have to speak to my gyno again for a long time which will be nice!
Another thing that has happened since my last post was i got my nipples done. Considering this site was originally set up just so i could show everyone my photo's i'll post some on her next time so you can see. I havent got the tattoo's done just yet (too expensive) but i will as soon as we can afford it and that will finish them off nicely. I'm so glad i got them done because they really do top it all off and make them look more like normal boobs. Anyway will post some pictures soon.
Here we go again.....
I can't believe I'm back to feeling like this.
In 2 weeks it will be my 2 year anniversary from when i was first diagnosed and i am meant to be starting 6 monthly check up's instead of every 3 months and really getting back to normal life.
But instead I'm about to have a chest x-ray and pelvic CT scan because i have something going on with my ovaries now. I'm crying while i'm writing this because i really can't believe that i'm here again having to go through more tests. I feel sick in the stomach and want to throw up because it's like it was 2 years ago .......... the unknown, the fear that there's something more sinister going on inside of me that i can't see but i know is going to cause me more pain. I hate this feeling but there's nothing i can do about it except be a good patient and go and get the tests that i'm told to and just wait for the results.
For a few weeks now i've felt really bloated and uncomfortable and i could tell that i've put on a little bit of weight (i'm blaming it on tamoxifen, not the fact that i haven't been eating the best or excerising of course!) but this is ridiculous. I can't even suck in my stomach anymore to try and hide my belly. A few family members even asked amongst themselves if i was pregnant but of course I'm not because 1. i did a test and 2. that would be a bloody miracle if i was!
I've learnt that nothing is straightforward when it comes to my body and my symptoms so when i started to get some shooting pains down there i knew that something wasn't right and it wasn't just that i had put on weight. So i went to my wonderful GP and she could tell my left ovary was enlarged so she sent me for a pelvic ultrasound. How wrong it is though that regarless of whether you're pregnant or going through IVF or have something else going on in there, you all have to go to the same place for the ultrasound. It sucks! You're sitting there in the waiting room with all of these pregnant women seeing how happy they are, but yet i have to sit there amongst them thinking about how much i would love to be pregnant at the moment but no, instead i'm there because of something that is obvioulsy bad and certainly not a baby in there. It sucks, there should be a seperate place for pregnant women and for those that need an ultrasound for something else because it just sort of rubs it in our faces. Anyway, that's just me.
On with my story.......the ultrasound found 3 large cysts on my left side and one smaller one on my right. The ones on my left are the size of a tennis ball (your ovary should be 6mm but at the moment mine is 60mm) and the one on my right is 12mm. So it wasn't what they wanted to see but in normal circumstances it's not that bad either because normally functional cycts take care of themselves but because i seem to be the exception in every single situation they have sent me for some more scans.
I've had a blood test this morning which brought me to tears because since the meningitis my veins have gotten even worse then they were before so they ended up having to pin prick two of my fingers and slowly get the blood that way. In about half an hour i have to go and get a chest x-ray and a pelvic ct and then on wednesday i'll go back and see my GP and on thursday go and see a gyno. Like i don't see enough specialists, now i have to go and add gynocologist to the growing list! He'll probably arrange for laproscopic surgery to be performed so he can go in and see exactly what's going on but i'll find out more on thursday.
I'm tired of all of this. My fatigue syndrome is really starting to ease up and it doesn't have such a hold on me, i've had enough energy to do some small renovations to our house and i just feel like my body has let me down again. Seriously, who did i kill in a past life to deserve this - somebody important obviously!
I am surrounded by pregnant friends at the moment (8 in total!) and if that wasn't enough to upset me, knowing how much i would love to have another baby, now this. I would rather be told that i have mets on my spine or something like that then have something going on with my ovaries. Even the thought of losing them is making me cry again.
Anyway, I just had to have a vent and get it all out and hope that for once, things go normally and all of the tests are clear and nothing more needs to be done - fingers, toes, arms, legs and everything else that i can are crossed xxxxxxx
In 2 weeks it will be my 2 year anniversary from when i was first diagnosed and i am meant to be starting 6 monthly check up's instead of every 3 months and really getting back to normal life.
But instead I'm about to have a chest x-ray and pelvic CT scan because i have something going on with my ovaries now. I'm crying while i'm writing this because i really can't believe that i'm here again having to go through more tests. I feel sick in the stomach and want to throw up because it's like it was 2 years ago .......... the unknown, the fear that there's something more sinister going on inside of me that i can't see but i know is going to cause me more pain. I hate this feeling but there's nothing i can do about it except be a good patient and go and get the tests that i'm told to and just wait for the results.
For a few weeks now i've felt really bloated and uncomfortable and i could tell that i've put on a little bit of weight (i'm blaming it on tamoxifen, not the fact that i haven't been eating the best or excerising of course!) but this is ridiculous. I can't even suck in my stomach anymore to try and hide my belly. A few family members even asked amongst themselves if i was pregnant but of course I'm not because 1. i did a test and 2. that would be a bloody miracle if i was!
I've learnt that nothing is straightforward when it comes to my body and my symptoms so when i started to get some shooting pains down there i knew that something wasn't right and it wasn't just that i had put on weight. So i went to my wonderful GP and she could tell my left ovary was enlarged so she sent me for a pelvic ultrasound. How wrong it is though that regarless of whether you're pregnant or going through IVF or have something else going on in there, you all have to go to the same place for the ultrasound. It sucks! You're sitting there in the waiting room with all of these pregnant women seeing how happy they are, but yet i have to sit there amongst them thinking about how much i would love to be pregnant at the moment but no, instead i'm there because of something that is obvioulsy bad and certainly not a baby in there. It sucks, there should be a seperate place for pregnant women and for those that need an ultrasound for something else because it just sort of rubs it in our faces. Anyway, that's just me.
On with my story.......the ultrasound found 3 large cysts on my left side and one smaller one on my right. The ones on my left are the size of a tennis ball (your ovary should be 6mm but at the moment mine is 60mm) and the one on my right is 12mm. So it wasn't what they wanted to see but in normal circumstances it's not that bad either because normally functional cycts take care of themselves but because i seem to be the exception in every single situation they have sent me for some more scans.
I've had a blood test this morning which brought me to tears because since the meningitis my veins have gotten even worse then they were before so they ended up having to pin prick two of my fingers and slowly get the blood that way. In about half an hour i have to go and get a chest x-ray and a pelvic ct and then on wednesday i'll go back and see my GP and on thursday go and see a gyno. Like i don't see enough specialists, now i have to go and add gynocologist to the growing list! He'll probably arrange for laproscopic surgery to be performed so he can go in and see exactly what's going on but i'll find out more on thursday.
I'm tired of all of this. My fatigue syndrome is really starting to ease up and it doesn't have such a hold on me, i've had enough energy to do some small renovations to our house and i just feel like my body has let me down again. Seriously, who did i kill in a past life to deserve this - somebody important obviously!
I am surrounded by pregnant friends at the moment (8 in total!) and if that wasn't enough to upset me, knowing how much i would love to have another baby, now this. I would rather be told that i have mets on my spine or something like that then have something going on with my ovaries. Even the thought of losing them is making me cry again.
Anyway, I just had to have a vent and get it all out and hope that for once, things go normally and all of the tests are clear and nothing more needs to be done - fingers, toes, arms, legs and everything else that i can are crossed xxxxxxx
Breast Cancer Ball
On Friday night, the 10th of September 2010 my family and I attended the Illawara Illumination Ball to raise money for a cure for Breast Cancer. Although the tickets were expensive ($170.00 a ticket) the room was full and it was a great night.
I was asked to speak at the event and although i was really nervous about it initially, once i started to write my speech I felt a lot more comfortable about it and in the end I really enjoyed doing it. It felt great to get up on stage and speak from the heart about my cancer journey and to have my family and closest friends there made it even more special.
Here's some photos of the night and my speech -
Good Evening Everyone,
My name is Sarah Crimmins and a year and a half ago my life was pretty normal. I was your average 28 year old with a beautiful 11 month old daughter, a wonderful husband, a dog and a mortgage.
But it turns out the lump i had been feeling on my left breast was not just a blocked milk duct from feeding my daughter, but something that would change our lives forever. I never would have thought that i'd be asking for a pair of nipples for my 30th birthday!
When you're first diagnosed, the thought of cancer and all of the treatment that you must go through to get past it is the most terrifying thing that you could think about. It's certainly not something that you can prepare yourself for, and each step is one that you have to take day by day, appointment by appointment and deal with the treatment one side effect at a time.
2009 may have been the worst year of my life but I’m here to tell the tale and that's all that matters. I'm here because of the fact that my cancer was detected early which is a similar story for my aunty who had just recently been diagnosed. It was because she was very vigilant with her mammograms (her husband had lost his mother to breast cancer a long time ago) that they picked up what they initially thought was a cluster of cells which turned out to be 4 times bigger than they originally thought.
We are both perfect examples of the importance of self examinations and regular mammograms.
I'll be honest with you though, this cancer journey sucks! There's not really any other way to put it. At the start of my journey i just kept thinking about how once the radiotherapy and then the reconstructions was over, I would be healthy and my life would go back to the way it was before.
But it's not that easy. One of the hardest lessons i've learnt through this is that it's just not that simple. I'm never going to be the same person i was before and neither will my wonderful husband, my twin sister and those closest to me.
The initial fear that i had of cancer has come and gone, but it's never going to go away. A headache is not just a headache anymore - it's the possibility of something else and it's scary as hell. You try not to assume the worst for something that could be so simple, but emotionally it's hard to shake that thought off.
I've been fortunate enough to have met 2 beautiful young ladies in similar situations to myself which has been a god-send. To have others that you can talk to that understand is absolutely invaluable and a vital part of getting through each day. You tend to automatically take out your frustration and anger on the person closest to you, and to have another means of being able to vent your feelings, by talking to those that truely understand how you feel is wonderful.
In addition to having a great support group, another vital part of getting through each day i found, was to try and stay positive as much as possible. It's hard at times, when you're at your lowest possible point - you're bald, tired, only have one boob and your 1 year old doesn't understand why mummy's too sick to play. But it's important to still try and smile each day even if it means having a laugh at your own expense. I remember one thing that used to make me giggle no matter what was the time Mat, Macy and I were on a car trip and Macy was really upset and we couldn't get her to stop crying - so i gave her my new 'boob' to play with. It kept her amused for hours and she loved it!
I wanted to take this opportunity to thank not only my family and friends that have helped me through the last year, but also to the wonderful people of the Illawara. Mat and I are so fortunate to have received support both emotionally and financially from everyone around us, even those we didn't know and seeing everyone here tonight, all fighting for a cure together is so heart-warming and I'm so proud to be here with you all tonight.
Over my little tantrum!
A few weeks ago when i wrote my last post I felt like i was losing it! I hated the world for a few days there and just couldn't stop myself feeling that way - i even had a few cigarettes around that time and i dont even smoke!!!
But I'm happy to say that i think i've snapped out of it because of the following;
So basically between all of these things, i think i've snapped out of my 'i hate the world' phase that i was in and i'm starting to feel much more like myself which is great. Good for my gorgeous Macy as well too.
But I'm happy to say that i think i've snapped out of it because of the following;
- I've spent some time with my aunty irene and brought her her wig ready for when she starts to lose her hair so i think i feel a bit more 'organised' if that's the right word for her. I just needed to spend some time with her and chat about everything that she was going through and to re-assure the both of us that she's going to be ok and she'll get through it. Aunty Irene and Uncle Roger were asking me some questions about side effects that i had during chemo and stuff like that and i was fine to answer those questions but when they started to ask if they put my hands in ice and asking what they did for me when the chemo was going through, i couldn't answer them. I honestly thought i was going to throw up so i had to ask them to change the topic. The same thing happened the next day when i was talking to her daughter. I just couldnt put myself back there in the chemo chair, trying to remember it going through my system and what the nurses were doing. It's still too fresh in my mind.
- Another thing that happened is that I got my period! So out of the blue and unexpected but i'm definately glad that it came. My oncologist probably isn't going to be happy about it because i know that they would prefer for them to stay away for about 2 - 3 years but i've been on Tamoxifen for nearly a year and a half now so i feel its the best of both worlds. I hope that means i dont have to start having safe sex again because its been nice not having to worry about that ha ha ha. I'll tell my oncologist about my periods when i see her next but i'm not going to stress about it at the moment because she'll make me get a blood test and my veins are really bad at the moment after the issues with my arm. Anyway, i think all of the hormones with getting my periods etc were partly to blame for my meltdown too.
- Turns out my arm was so swollen and sore because i had a small blood clot! Seriously, anything that can happen does to me! It wasn't DVT though which is the main thing, it was a small clot in one of my surface veins so i'm just on some asprin for preventative measures and it all should be fine. The swelling has gone down a lot already and i've had 3 ultrasounds and it seems to be fixing itself which is great news. Out of any scan/test you can have i'm more than happy to have ultrasounds cause it doesn't involve a needle so bring them on i say!
- I was speaking to a friend of mine the other day (who was very supportive of me through my treatment) and she told me that her sister had recently been diagnosed with cancer of her sinus cavity which is an extremely rare cancer and very hard to treat. She was telling me that they had spent about $150,000.00 on her treatment already and had just indured a marathon 18 1/2 hour surgery to remove the tumor and give her a chance and as you can imagine it's been horrific for her and her whole family. Speaking to Laurelle about her sister was probably the main thing that snapped me out of my mood i think. Like she said, with breast cancer we can hide it on the days that we want to try and forget about it because people dont necessily have to know but with a cancer like her sisters, she can't and she's never going to be able to forget about it with being so disfigured by it. We've been through a hell of a lot with all the chemo and surgeries etc but she's right in that respect and made me appreciate how far i've come and where i'm at now.
So basically between all of these things, i think i've snapped out of my 'i hate the world' phase that i was in and i'm starting to feel much more like myself which is great. Good for my gorgeous Macy as well too.
Struggling......
I hate to admit it but i'm really struggling at the moment. I'm not even sure what it is that i'm struggling with, but it seems to be everything.
All through my treatment and even up until the reconstruction i was pretty positive and just got on with what i needed to but at the moment nothing seems to be easy. I hate sounding like such a sook and a whinger and that's how i feel i am all the time at the moment and i hate it. To go from being the one that was dealing with it all and now i really feel like i'm falling apart.
My aunty was recently diagnosed with Breast Cancer and i'm pretty close with her so it was hard to hear about her diagnosis. When she first told me though it was a pretty good outcome for her because they got it early and said that it was a cluster of cells and not even an actual lump yet so if she opted for a lumpectomy she wouldnt have to have chemo only radiotherapy, or if she opted for a mastectomy she wouldn't have to have any further treatment.
She opted for a mastectomy (which i was relieved with and thought she had made the right choice) and she found out after the surgery that it was lucky she had the mastectomy because it was a lump 4 times bigger than what they originally thought and she would've ended up having a mastectomy anyway.
Now they've decided that she has to have 4 rounds of chemo as well as the full 5 weeks of radio and it just breaks my heart that she has to go through all of this when she originally was told she wouldnt have to. She starts her first round of chemo tomorrow. All i can think about is how much i want to be there for her but she lives 3.5 hours away so it's not like i can just duck over to her house and see her but at the same time i think that maybe it's a good thing that we're not too close to each other because i think i'm really getting down and putting myself back in that situation. I know i shouldnt but it's hard not to.
I spoke to her alot before the surgery and i was really positive with her and just tried to make her laugh etc but at the same time was honest about all of the treatment etc but when i spoke to her just after the surgery i lost it. Knowing that she was in the hospital going through what i had been through a year before just broke me and i had to end the conversation pretty fast because i didn't want her to hear how upset i was. I figured she was going through a hard enough time she didn't need me crying to her on the other end of the line.
I think it's all snowballing from there. Now that i know shes starting chemo tomorrow i just keep thinking about her and how i can help etc but i'm getting myself in such a mess. Its like i'm back there a year ago trying to get everything organised for when i was about to go through it.
I dont really know what to do though. I really want to help her but i think i'm realising the hard way that i'm not far enough in my own journey to really be there like i want to be for her but it breaks my heart because i feel that if i don't keep trying to do things for her, that i'm going to let her down. I'm sure she doesn't feel that way, but i do.
The other issue is that i've got something weird going on with my right arm now. Like i need anything else to be happening seriously! I had all of my lymphnodes removed from my left arm but only one removed from my right (to test it) and because it was clear they didn't remove anymore from my right side but the weird thing is that the swelling is in my right arm and not my left. So none of my doctors know what the hell is going on and i have to go for more scans on thursday. Originally they thought that it might have been a DVT (Deep Vein Thrombosis) but thank god they came back clear so now they think that maybe the chemo has damaged my blood vessels and there's a clot or something happening. I'll find out on thursday and to be honest i just want it over with.
I want the bloody test to hurry up and be here so i can get on with it. Of course when i saw the lymphodema lady and my oncologist there was the mention of 'secondary' and that scared the absolute crap out of me. I had scans not that long ago and to think that there's a possibility of there being another tumor somewhere just broke me down. In my head i know that this is such a small chance, but in my heart i'm scared as hell that it could be.
At the start of my diagnosis i never once thought i was going to die or anything like that. Honestly, it didn't even enter my thoughts. To me it was a case of ok, this is what you've got and what you have to go through and then that will be it. But now i've learnt that this isn't the case at all. Once cancer comes into your life it's never going to go away.
You can't just go to any old doctor for something simple anymore. Everything is complicated. And i'm so sick of hearing the words 'only a small percentage of women have this' or 'that's strange, we'll have to look into this further'. Seriously!!!! If i'm so 'out of the ordinary' or 'special' and am in a small percentage of the population, why can't i win the lotto or have something spectacular happen like winning a house or a car or something fantastic!!!!
Everyone around me is having babies as well - my twin sister, my 2 sister-in-laws and a few friends. I couldn't be more surounded by babies if i tried. I've been really upset about the fact that i can't have another baby at the moment, despite the fact that my lovely little girl is going through the terrible twos but the weird thing is i think i got my period today. I'm not sure if that's what it is but i haven't had a bleed since i december (my reconstruction) which was a withdrawal bleed from the tamoxifen and then out of the blue today i think i've got them. I'm thinking it's maybe cause i'm stressed out? Hopefully not though, hopefully it's a good sign that my fertility is going to be ok.....crossing my fingers xxxxxx
Macy can be such a beautiful little thing but lately she's really pushing my buttons as well with being the 'terrible two's'. I know i shouldnt get frustrated with her but bloody hell it's hard sometimes. I hate it when she's testing me because with how i feel at the moment she's winning and that's making it even worse so on top of worrying about aunty irene and my health i feel like such a bad mother and this is probably the worst of it all. She's probably mucking up more because i'm distracted by all of this negative stuff going on around me and that's not fair on her.
I really need to sort my shit out but i don't even know where to start.....................
All through my treatment and even up until the reconstruction i was pretty positive and just got on with what i needed to but at the moment nothing seems to be easy. I hate sounding like such a sook and a whinger and that's how i feel i am all the time at the moment and i hate it. To go from being the one that was dealing with it all and now i really feel like i'm falling apart.
My aunty was recently diagnosed with Breast Cancer and i'm pretty close with her so it was hard to hear about her diagnosis. When she first told me though it was a pretty good outcome for her because they got it early and said that it was a cluster of cells and not even an actual lump yet so if she opted for a lumpectomy she wouldnt have to have chemo only radiotherapy, or if she opted for a mastectomy she wouldn't have to have any further treatment.
She opted for a mastectomy (which i was relieved with and thought she had made the right choice) and she found out after the surgery that it was lucky she had the mastectomy because it was a lump 4 times bigger than what they originally thought and she would've ended up having a mastectomy anyway.
Now they've decided that she has to have 4 rounds of chemo as well as the full 5 weeks of radio and it just breaks my heart that she has to go through all of this when she originally was told she wouldnt have to. She starts her first round of chemo tomorrow. All i can think about is how much i want to be there for her but she lives 3.5 hours away so it's not like i can just duck over to her house and see her but at the same time i think that maybe it's a good thing that we're not too close to each other because i think i'm really getting down and putting myself back in that situation. I know i shouldnt but it's hard not to.
I spoke to her alot before the surgery and i was really positive with her and just tried to make her laugh etc but at the same time was honest about all of the treatment etc but when i spoke to her just after the surgery i lost it. Knowing that she was in the hospital going through what i had been through a year before just broke me and i had to end the conversation pretty fast because i didn't want her to hear how upset i was. I figured she was going through a hard enough time she didn't need me crying to her on the other end of the line.
I think it's all snowballing from there. Now that i know shes starting chemo tomorrow i just keep thinking about her and how i can help etc but i'm getting myself in such a mess. Its like i'm back there a year ago trying to get everything organised for when i was about to go through it.
I dont really know what to do though. I really want to help her but i think i'm realising the hard way that i'm not far enough in my own journey to really be there like i want to be for her but it breaks my heart because i feel that if i don't keep trying to do things for her, that i'm going to let her down. I'm sure she doesn't feel that way, but i do.
The other issue is that i've got something weird going on with my right arm now. Like i need anything else to be happening seriously! I had all of my lymphnodes removed from my left arm but only one removed from my right (to test it) and because it was clear they didn't remove anymore from my right side but the weird thing is that the swelling is in my right arm and not my left. So none of my doctors know what the hell is going on and i have to go for more scans on thursday. Originally they thought that it might have been a DVT (Deep Vein Thrombosis) but thank god they came back clear so now they think that maybe the chemo has damaged my blood vessels and there's a clot or something happening. I'll find out on thursday and to be honest i just want it over with.
I want the bloody test to hurry up and be here so i can get on with it. Of course when i saw the lymphodema lady and my oncologist there was the mention of 'secondary' and that scared the absolute crap out of me. I had scans not that long ago and to think that there's a possibility of there being another tumor somewhere just broke me down. In my head i know that this is such a small chance, but in my heart i'm scared as hell that it could be.
At the start of my diagnosis i never once thought i was going to die or anything like that. Honestly, it didn't even enter my thoughts. To me it was a case of ok, this is what you've got and what you have to go through and then that will be it. But now i've learnt that this isn't the case at all. Once cancer comes into your life it's never going to go away.
You can't just go to any old doctor for something simple anymore. Everything is complicated. And i'm so sick of hearing the words 'only a small percentage of women have this' or 'that's strange, we'll have to look into this further'. Seriously!!!! If i'm so 'out of the ordinary' or 'special' and am in a small percentage of the population, why can't i win the lotto or have something spectacular happen like winning a house or a car or something fantastic!!!!
Everyone around me is having babies as well - my twin sister, my 2 sister-in-laws and a few friends. I couldn't be more surounded by babies if i tried. I've been really upset about the fact that i can't have another baby at the moment, despite the fact that my lovely little girl is going through the terrible twos but the weird thing is i think i got my period today. I'm not sure if that's what it is but i haven't had a bleed since i december (my reconstruction) which was a withdrawal bleed from the tamoxifen and then out of the blue today i think i've got them. I'm thinking it's maybe cause i'm stressed out? Hopefully not though, hopefully it's a good sign that my fertility is going to be ok.....crossing my fingers xxxxxx
Macy can be such a beautiful little thing but lately she's really pushing my buttons as well with being the 'terrible two's'. I know i shouldnt get frustrated with her but bloody hell it's hard sometimes. I hate it when she's testing me because with how i feel at the moment she's winning and that's making it even worse so on top of worrying about aunty irene and my health i feel like such a bad mother and this is probably the worst of it all. She's probably mucking up more because i'm distracted by all of this negative stuff going on around me and that's not fair on her.
I really need to sort my shit out but i don't even know where to start.....................
May 10' - Exchange Surgery
After the reconstruction surgery in December 09 i had to wait a minimum of 3 months before i could have the exchange surgery (removing the expanders and replacing them with permanent implants) so i decided to wait until after i was back and settled at work before having this surgery.
Again, to be honest the main thing i was worried about with this surgery was the same as the others - that they wouldn't be able to find a vein to put me to sleep! But I ended up having the same doctors etc as last time and she rememebered me and didn't even attempt to get one, she just arranged for them to put me to sleep in the operating room which was great and just what i needed to relax my nerves about the whole thing.
I knew that i would only be in hospital for one night with this surgery so to be honest i wasn't really worried about it at all. After all that i had been through, this really was going to be a walk in the park! The worst part about the day ended up being that i had to wait for hours before going in and when your not allowed to have any food or water I was one very grumpy girl by the time they took me down!
Immediately after the surgery when i woke all i can remember was having a really sore left shoulder and it wouldn't go away. So they gave me drugs to try and relax my muscles but i ended up in tears by the time Mat came in to see me and had to get him to rub it for me for ages to try and relieve the muscle pain. It must have been from the position they had me in during the surgery, which really shows how rough they must be with us when we're under and dead weight.
Once this pain settled down though i was pretty comfortable. My surgeon had used the same scars as last time to go in and replace the expanders so i knew that i wouldnt be able to feel pain from the incisions themselves because i'm numb on my breasts but he had re-positioned the implants so they were in a much better spot than the expanders were in so i had quite a lot of swelling and pain in the middle of my chest where i wasn't numb. As normal though i just made sure to stay on top of the pain with diagesic and panadol and it was fine.
During my other hospital stays my blood pressure was always really low and i found myself always feeling faint and quite weak but after this surgery for some reason my blood pressure was really good and i got up first thing the next morning and had a shower and got dressed and was ready to go home. Unfortunately i had to wait for hours until everything was organised for me to go, but it was a nice to have woken up feeling a bit stronger for a change.
The bra that he put on my after the surgery was pretty comfortable because it was quite tight so made me feel more secure i guess but i stopped wearing it after about 2 weeks and swapped to wireless bras mostly because the post op one was so big/high that you could see it under anything that i wore. Even now (2 months after the operation) i find that if i don't wear a bra for about 2 days my boobs get quite sore. My surgeon told me i had to start wearing bras and i believe him now. Actually his words were 'i'm giving you perky boobs so i want you to keep them that way, which means wearing a bra!' lol
Anyway, here's some photo's -
This was just before the surgery. As you can see the expanders were pretty far apart (6cm) so his plan was to bring them in closer (3cm) and also my right side expander was sitting in a different position so he had to do a lot more adjusting on this side (which is why you can see the extra texta marks).
The next 3 photos are the day after the surgery. I had waterproof dressings on them but took these photos when my Dr had taken them off to check out everything. I was really swollen for the first 2 weeks which is why they look huge in the first photo! Its amazing to think that he had just cut me open again and you can't even really tell. The middle photo shows my incision on the bottom of my breast (as he went through the original Lat dorsi incision) and the last photo shows where he went back in through the original mastectomy line and the bottom half of where my nipple used to be. Again he used the disolvable stitches but he also used some normal stitches on my right side just to give it a little bit more support. He took these out on my post op visit 2 weeks later.
My right side looks great (the left when youre looking straight at it in the photo) and it's my favourite ha ha ha but my left side isn't so good. It was never going to be as good though and i knew this so i just have to be happy with what he's been able to give me. There's a lump under my left armpit (i.e. the top of my left breast) which is the lat dorsi muscle from the reconstruction and my surgeon said that it should go down over the next 12 months of so and if it doesn't he'll try and reduce it for me so once this is fixed (either by itself or with help) i'll be even happier.
My left breast still has a little bit more 'settling' to do, and i wish that they were a bit closer together but overall i'm happy - I have 2 cancer free boobs so what more can i ask for i guess.
Again, to be honest the main thing i was worried about with this surgery was the same as the others - that they wouldn't be able to find a vein to put me to sleep! But I ended up having the same doctors etc as last time and she rememebered me and didn't even attempt to get one, she just arranged for them to put me to sleep in the operating room which was great and just what i needed to relax my nerves about the whole thing.
I knew that i would only be in hospital for one night with this surgery so to be honest i wasn't really worried about it at all. After all that i had been through, this really was going to be a walk in the park! The worst part about the day ended up being that i had to wait for hours before going in and when your not allowed to have any food or water I was one very grumpy girl by the time they took me down!
Immediately after the surgery when i woke all i can remember was having a really sore left shoulder and it wouldn't go away. So they gave me drugs to try and relax my muscles but i ended up in tears by the time Mat came in to see me and had to get him to rub it for me for ages to try and relieve the muscle pain. It must have been from the position they had me in during the surgery, which really shows how rough they must be with us when we're under and dead weight.
Once this pain settled down though i was pretty comfortable. My surgeon had used the same scars as last time to go in and replace the expanders so i knew that i wouldnt be able to feel pain from the incisions themselves because i'm numb on my breasts but he had re-positioned the implants so they were in a much better spot than the expanders were in so i had quite a lot of swelling and pain in the middle of my chest where i wasn't numb. As normal though i just made sure to stay on top of the pain with diagesic and panadol and it was fine.
During my other hospital stays my blood pressure was always really low and i found myself always feeling faint and quite weak but after this surgery for some reason my blood pressure was really good and i got up first thing the next morning and had a shower and got dressed and was ready to go home. Unfortunately i had to wait for hours until everything was organised for me to go, but it was a nice to have woken up feeling a bit stronger for a change.
The bra that he put on my after the surgery was pretty comfortable because it was quite tight so made me feel more secure i guess but i stopped wearing it after about 2 weeks and swapped to wireless bras mostly because the post op one was so big/high that you could see it under anything that i wore. Even now (2 months after the operation) i find that if i don't wear a bra for about 2 days my boobs get quite sore. My surgeon told me i had to start wearing bras and i believe him now. Actually his words were 'i'm giving you perky boobs so i want you to keep them that way, which means wearing a bra!' lol
Anyway, here's some photo's -
This was just before the surgery. As you can see the expanders were pretty far apart (6cm) so his plan was to bring them in closer (3cm) and also my right side expander was sitting in a different position so he had to do a lot more adjusting on this side (which is why you can see the extra texta marks).
The next 3 photos are the day after the surgery. I had waterproof dressings on them but took these photos when my Dr had taken them off to check out everything. I was really swollen for the first 2 weeks which is why they look huge in the first photo! Its amazing to think that he had just cut me open again and you can't even really tell. The middle photo shows my incision on the bottom of my breast (as he went through the original Lat dorsi incision) and the last photo shows where he went back in through the original mastectomy line and the bottom half of where my nipple used to be. Again he used the disolvable stitches but he also used some normal stitches on my right side just to give it a little bit more support. He took these out on my post op visit 2 weeks later.
My right side looks great (the left when youre looking straight at it in the photo) and it's my favourite ha ha ha but my left side isn't so good. It was never going to be as good though and i knew this so i just have to be happy with what he's been able to give me. There's a lump under my left armpit (i.e. the top of my left breast) which is the lat dorsi muscle from the reconstruction and my surgeon said that it should go down over the next 12 months of so and if it doesn't he'll try and reduce it for me so once this is fixed (either by itself or with help) i'll be even happier.
My left breast still has a little bit more 'settling' to do, and i wish that they were a bit closer together but overall i'm happy - I have 2 cancer free boobs so what more can i ask for i guess.
Thank you!!!!
When my father in law organised my fundraiser, he arranged for a short story to be in the Illawara Mercury to get the awareness out there about a 'young woman with breast cancer' as well as about the fundraiser. So, once all of my surgeries etc were over i really wanted to say a big thank you to everyone that came and contributed to the fundraiser, as it was only because of them that i was able to have my surgeries.
Unfortunately the Mercury put their own spin on the story and basically just wrote what they wanted and didn't publish the thank you that i wanted which i was really dissappointed and a bit cranky about.
So, here's what i had originally wanted in the article -
To whom it May Concern,
I am writing to ask for a thank you note to be published in the Illawara Mercury. In May of last year you published a story in relation to my fight with Breast Cancer and the benefit night that my father in law (Michael Crimmins) organised in order to raise funds for the McGrath Foundation as well as for my operations, cancer treatment and to enable me to be off work.
I am so sorry for the delay in sending this through however directly after the benefit night I had my last round of chemo, radiotherapy, I contracted Meningitis and then had my reconstruction surgery. All of that has taken me up until now.
I have just started back to work and have recovered from my reconstruction surgery (although i still have a few more surgeries to go they are nothing like what i've already been through) and I sincerely wanted to thank everyone that has helped me through this crazy time in my life.
I want to thank the business of the Illawara, the Illawara Tech Tahs, the Fraternity Club, South Sydney Rugby League Football Club and all of the ongoing support from our family and friends. It's because of you that I was able to go ahead and have my reconstruction surgery last year as well as have this time off work which allowed me to spend some much needed quality time with my husband Mat, and our daughter, Macy.
During my experience I found it hard to find personal stories and photographs from women the same age as me (I was only 28 when diagnosed) and in particular the struggles that we go through of not only the cancer treatment but of being a young mum as well. Because of this I am in the process of setting up a blog (sarahsbreastcancerstory.blogspot.com) which I hope other young mum's out there going through cancer treatment may find helpful.
The love and support that I have received from the people of the Illawara over the last year has been overwhelming and I thank you all from the bottom of my heart. I always thought that I was a positive person and having gone through this, it has made me realise that it really is the only way you can get through it. There are so many people out that that will love and support you, no matter how bald and lop sided you are :-)
Sincerely,
Sarah Crimmins
Unfortunately the Mercury put their own spin on the story and basically just wrote what they wanted and didn't publish the thank you that i wanted which i was really dissappointed and a bit cranky about.
So, here's what i had originally wanted in the article -
To whom it May Concern,
I am writing to ask for a thank you note to be published in the Illawara Mercury. In May of last year you published a story in relation to my fight with Breast Cancer and the benefit night that my father in law (Michael Crimmins) organised in order to raise funds for the McGrath Foundation as well as for my operations, cancer treatment and to enable me to be off work.
I am so sorry for the delay in sending this through however directly after the benefit night I had my last round of chemo, radiotherapy, I contracted Meningitis and then had my reconstruction surgery. All of that has taken me up until now.
I have just started back to work and have recovered from my reconstruction surgery (although i still have a few more surgeries to go they are nothing like what i've already been through) and I sincerely wanted to thank everyone that has helped me through this crazy time in my life.
I want to thank the business of the Illawara, the Illawara Tech Tahs, the Fraternity Club, South Sydney Rugby League Football Club and all of the ongoing support from our family and friends. It's because of you that I was able to go ahead and have my reconstruction surgery last year as well as have this time off work which allowed me to spend some much needed quality time with my husband Mat, and our daughter, Macy.
During my experience I found it hard to find personal stories and photographs from women the same age as me (I was only 28 when diagnosed) and in particular the struggles that we go through of not only the cancer treatment but of being a young mum as well. Because of this I am in the process of setting up a blog (sarahsbreastcancerstory.blogspot.com) which I hope other young mum's out there going through cancer treatment may find helpful.
The love and support that I have received from the people of the Illawara over the last year has been overwhelming and I thank you all from the bottom of my heart. I always thought that I was a positive person and having gone through this, it has made me realise that it really is the only way you can get through it. There are so many people out that that will love and support you, no matter how bald and lop sided you are :-)
Sincerely,
Sarah Crimmins
May 10' - Field of Women
As a weekend trip away for just the two of us we decided to go to Melbourne and attend the 'Field of Women' put on by the Breast Cancer Network of Australia. It was wonderful!
Honestly I wasn't sure what to expect from it but it was much more than i thought it would be!
We initially sat toward the back, under the cover and it didn't feel right. I wanted to be much more involved so we went down toward the front and right amongst everyone else and it felt wonderful to be surrounded by all that pink (and a bit of blue to represent all of the men that get Breast Cancer). I nearly started crying from the moment we sat down but i had to stop myself because i figured i'd be a complete mess by the time we got onto the field.
Once we were all on the field, we turned on our lights and at one stage the presenter asking for all of the breast cancer survivors to raise their hands and i finally lost it then! Even Mat was crying at that stage. It felt great and i can't really explain why it was so emotional, but it just was and to have shared it with Mat was just what we needed as a couple.
Thank you to the BCNA for putting it together!
Honestly I wasn't sure what to expect from it but it was much more than i thought it would be!
We initially sat toward the back, under the cover and it didn't feel right. I wanted to be much more involved so we went down toward the front and right amongst everyone else and it felt wonderful to be surrounded by all that pink (and a bit of blue to represent all of the men that get Breast Cancer). I nearly started crying from the moment we sat down but i had to stop myself because i figured i'd be a complete mess by the time we got onto the field.
Once we were all on the field, we turned on our lights and at one stage the presenter asking for all of the breast cancer survivors to raise their hands and i finally lost it then! Even Mat was crying at that stage. It felt great and i can't really explain why it was so emotional, but it just was and to have shared it with Mat was just what we needed as a couple.
Thank you to the BCNA for putting it together!
Our Partners
My goodness, what can i say about this topic........there is so much to talk about.....
I don't know how other partners have handled their diagnosis and treatment but i think my husband has coped with it in a way that most men do with the feeling of 'reluctant to seek help for themselves because they feel they need to be ‘strong’ for us. Does that sound familiar?
Well that's just how my husband coped with it. At times i found this a bit frustrating because i needed to see that he was affected by it as well because it sometimes i felt like he was being a bit too strong if that makes sense. I could cry at the drop of a hat, but yet i never saw him cry....how could that be? It took a few months of me being sick before.... well i guess you could say 'before the shit hit the fan!'.
At the start of chemo i tried to be strong and was a bit stubborn when it came to the medication and Mat was great with convincing me to take what i needed to take etc but i always felt like everyone else (family, friends etc) allowed me to be sick when i was with them, but that Mat didn't. Most would make sure that i ate something or if my sister was over and i looked tired she would take both our daughters out into the backyard and tell me to go to bed for a few hours which was just what i needed. But when mat was home he never said anything and i used to feel like i still had to do everything that i normally would. Or during chemo i remember that i used to feel much worse if i allowed myself to get hungry so i had to eat regularly but i never knew what i wanted to eat so i'd whinge to mat and ask him to get me something, but i couldn't tell him what i wanted and he found that really difficult and frustrating.
I'm lucky that he is quite domestic and did help around the house a lot, much more than a lot of husbands that i know of, but at times i needed more help from him and he just didn't have it in him. He had not only a sick wife to think and worry about, but our 2 year old daughter as well.
When radio finished i think we both thought that i would start to feel better straight away and when that didn't happen we started to fight a bit. I was frustrated at my body because i was still so tired and i was sick of being sick and Mat was starting to get frustrated at me being tired and grumpy as well.
By the time the meningitis came, that was it really! I would have to say that this was the hardest time that we have ever gone through in our 11 years together. Neither of us had any reserves left in our emergency tanks and we just weren't getting enough time to refil them. So we fought a lot when i got home from hospital because we were taking 10 steps backwards and no steps forward.
I remember i got home from hospital a few days before melbourne cup and mat had planned to go out with his mates to get away from everything on Melbourne Cup day, and because i was home he thought that i was fine and went along to his thing. My girlfriends came over to be with me and to help with Macy and it was a nice day but i was exhausted. I still had the unbelievably bad migraines and they allowed me to just chill out and hang with them which was great but the time came for them to go home and mat still wasnt home. I called him to see when he was coming home and he was so upset with me for asking because he felt like he needed a day off. Macy ended up going home with a girlfriend of mine for a few hours so i could sleep because of my migraine and it was so frustrating for the both of us because i still needed him, but he needed a break as well.
After this episode we finally talked and i had to let him know that i still really need him and to please bear with me and understand that i'm not going to be like this forever and it will stop soon and i'll be back to being 'me' but i couldnt get there without his help. It had gotten to the stage where i was going to go and stay at my parents house after my reconstruction surgery because i didnt think that mat would be able to handle both macy and i as this surgery was going to be the hardest yet but after this chat that we had, i think we ended up on the same page and Mat was wonderful with everything.
So we went from the middle of chemo, thinking i was going to have to deal with a divorce at the same time as cancer treatment, to realising that he is my everything and i can't get through anything without him.
On the National Breast and Ovarian Cancer Centre website (www.nbocc.org.au), there's a section called Information for men whose partners have been diagnosed with breast cancer and it covers things such as;
I don't know how other partners have handled their diagnosis and treatment but i think my husband has coped with it in a way that most men do with the feeling of 'reluctant to seek help for themselves because they feel they need to be ‘strong’ for us. Does that sound familiar?
Well that's just how my husband coped with it. At times i found this a bit frustrating because i needed to see that he was affected by it as well because it sometimes i felt like he was being a bit too strong if that makes sense. I could cry at the drop of a hat, but yet i never saw him cry....how could that be? It took a few months of me being sick before.... well i guess you could say 'before the shit hit the fan!'.
At the start of chemo i tried to be strong and was a bit stubborn when it came to the medication and Mat was great with convincing me to take what i needed to take etc but i always felt like everyone else (family, friends etc) allowed me to be sick when i was with them, but that Mat didn't. Most would make sure that i ate something or if my sister was over and i looked tired she would take both our daughters out into the backyard and tell me to go to bed for a few hours which was just what i needed. But when mat was home he never said anything and i used to feel like i still had to do everything that i normally would. Or during chemo i remember that i used to feel much worse if i allowed myself to get hungry so i had to eat regularly but i never knew what i wanted to eat so i'd whinge to mat and ask him to get me something, but i couldn't tell him what i wanted and he found that really difficult and frustrating.
I'm lucky that he is quite domestic and did help around the house a lot, much more than a lot of husbands that i know of, but at times i needed more help from him and he just didn't have it in him. He had not only a sick wife to think and worry about, but our 2 year old daughter as well.
When radio finished i think we both thought that i would start to feel better straight away and when that didn't happen we started to fight a bit. I was frustrated at my body because i was still so tired and i was sick of being sick and Mat was starting to get frustrated at me being tired and grumpy as well.
By the time the meningitis came, that was it really! I would have to say that this was the hardest time that we have ever gone through in our 11 years together. Neither of us had any reserves left in our emergency tanks and we just weren't getting enough time to refil them. So we fought a lot when i got home from hospital because we were taking 10 steps backwards and no steps forward.
I remember i got home from hospital a few days before melbourne cup and mat had planned to go out with his mates to get away from everything on Melbourne Cup day, and because i was home he thought that i was fine and went along to his thing. My girlfriends came over to be with me and to help with Macy and it was a nice day but i was exhausted. I still had the unbelievably bad migraines and they allowed me to just chill out and hang with them which was great but the time came for them to go home and mat still wasnt home. I called him to see when he was coming home and he was so upset with me for asking because he felt like he needed a day off. Macy ended up going home with a girlfriend of mine for a few hours so i could sleep because of my migraine and it was so frustrating for the both of us because i still needed him, but he needed a break as well.
After this episode we finally talked and i had to let him know that i still really need him and to please bear with me and understand that i'm not going to be like this forever and it will stop soon and i'll be back to being 'me' but i couldnt get there without his help. It had gotten to the stage where i was going to go and stay at my parents house after my reconstruction surgery because i didnt think that mat would be able to handle both macy and i as this surgery was going to be the hardest yet but after this chat that we had, i think we ended up on the same page and Mat was wonderful with everything.
So we went from the middle of chemo, thinking i was going to have to deal with a divorce at the same time as cancer treatment, to realising that he is my everything and i can't get through anything without him.
On the National Breast and Ovarian Cancer Centre website (www.nbocc.org.au), there's a section called Information for men whose partners have been diagnosed with breast cancer and it covers things such as;
- What she might be feeling
- How do you feel? Typical feelings when a partner is diagnosed with breast cancer
- Sexuality and intimacy
- Impact of a breast cancer diagnosis on kids
- Knowing what to say
- Help her by helping yourself
- Healing strategies
- Where to find support
Everyone deals with it in such different ways but ultimately I can't imagine having to have gone through this without him. Once we realised that it wasn't each other that we found frustrating, it was the situation we were in and the sickness and surgeries will stop eventually and we had to just hang in there.
Services Available
Suprisingly, with all of the information that we are handed at the inital stage of our diagnosis, there are a lot of services available that I had no idea about!
Some that i have learnt about are -
Southern Cross Community Healthcare - Through them i was able to have a cleaner come to my house once a week and help me with the housework. I can't tell you how great this was. Mat was great with helping around the house and all but with me sick and tired, and Macy being a normal messy 2 year old it was really hard to stay on top of things. When your a house proud person (as i am) it's frustrating to be sitting there looking at all of the things around the house that you need/want to do but you just arent well enough to do them. Unfortunately i didnt find out about them until just after i finished chemo however they helped a great deal through radio, the meningitis and then my reconstruction. Just having Robyn vaccum and mop the floors and do the dusting was an enourmous help. Their number is 1800 989 000.
Some that i have learnt about are -
Southern Cross Community Healthcare - Through them i was able to have a cleaner come to my house once a week and help me with the housework. I can't tell you how great this was. Mat was great with helping around the house and all but with me sick and tired, and Macy being a normal messy 2 year old it was really hard to stay on top of things. When your a house proud person (as i am) it's frustrating to be sitting there looking at all of the things around the house that you need/want to do but you just arent well enough to do them. Unfortunately i didnt find out about them until just after i finished chemo however they helped a great deal through radio, the meningitis and then my reconstruction. Just having Robyn vaccum and mop the floors and do the dusting was an enourmous help. Their number is 1800 989 000.
Cancer Helpline - I did get a flyer about them in my first little 'So you have cancer....' pack but to be honest i didn't really think that much of it. It wasn't until later that my sister told me about a service they have whereby you can give them a call and ask them to put you in contact with someone your age that lives in your area and going through a similar thing. I was lucky and the nurse at my oncologist office put me in contact with Vanessa, who was all of those things for me, however for those of you that need this, call the Cancer Helpline on 13 11 20.
Support Groups - I knew that there was support groups around however at my age (28 at diagnosis) none of the support groups really suited me. To be honest i still haven't really found a 'support group' as such as does, however Vanessa, Dee and I have developed our own little informal support group as we all live in the same area. If anyone reading this lives in the Wollongong area, please send me an email (scrimmins@live.com.au) cause we'd love to have you join our little coffee sessions. For those interested in a normal Breast Cancer Support Group, there is an 'Illawara Support Group' which have meetings in Kiama, Warilla (both day meetings) and Wollongong - the last Tuesday in the month at the Congreational Church in Market street at 7.30. Anne Kershaw runs it and her number is 42842001.
The Young Women Support Group is organised by Lisa Athanassapoulos (02) 4226 6563 and is held on the 2nd Friday evening of each month at local restaurants. Vanessa, Dee and I attended this meeting once and it was lovely to meet all of the ladies from the support group however to be honest it wasn't what i was looking for so haven't attended since. I was needing to speak to women around my age who were going through the struggles with having a young child through the treatment, as well as the possilbity that we may not be able to have more/any children and the women at the support group were much older than me and had finished their families.
Aussie Breast Cancer Forum - This site is great because you can go on there whenever you want and participate as much or as little as you'd like but at the same time get an insight into what others are feeling and going through at the same time. The website address is www.bcaus.org.au.
Otis Foundation - As mentioned earlier in my blog this is wonderful! Basically the Otis retreats offer time out to relax, reconnect and regroup for those struggling with the challenges that come alongside serious illness. Each has been hand chosen for its location, in a beautiful environment which allows guests to draw on nature for strength and comfort. Partners, family members and friends are welcome to stay but often those who call on The Otis Foundation are looking for solitude or quality time with only those closest to them.
There are some more listed on my blog under the heading 'Useful Links' and there are probably a whole lot more than what i've put on here so if anyone reading this has more suggestions for me to add, please let me know.March 10' - Work and Scans
Before i got sick i was a very work orientated person. I worked my butt off before i had Macy and was back at work partime 4 months after i had her and was working 3 days a week when i was diagnosed.
Initially when i was first diagnosed I thought that i would still be able to work through my treatment, but that i would just have to cut back and looking back on it now I wonder what in the hell i was thinking!
I really didn't realise how much my life was going to change when i was first diagnosed and it wasn't until i had an appointment with my oncologist and she told me what treatment i was going to have and then she wrote out a medical certificate for me for 6 months. I told her that i was still planning on working a bit and she said that i would be crazy to even try to. Between the robust treatment she was going to be giving me and also having a 1 year old, she said no way, i'd end up with Chronic Fatigue syndrome if i did. So i left that appointment an absolute mess. It took until then for me to realise how much my life was going to change. No work for at least 6 months - i couldn't comprehend it!
So through Chemo i obviously took her advice and didn't work and there's no way that i could have with Macy as well. I only had 1 good week out of 3 and I spent that time taking macy to the park and resting, getting ready for the next chemo.
Still though during this, i thought to myself, okay so i can't work during chemo, i'll definately be able to work through radiotherapy and i told my boss that that was the plan and i'd see how i go leading up to it.
Radiotherapy came and I was still exhausted and needing to have a sleep through the day so i realised that i'd be crazy to work through that as well. By the time the radiotherapy had finished and it took a few weeks for my burns to heal, I'd had 10 months off work and now too nervous about going back. My brain wasn't working properly and i felt like i was in a fog of some sort for a long time and i just didn't see by then how i could work when i couldn't even remember my appointments. But I felt bad telling my boss this. She had been so supportive all through my treatment but i also knew that they were busy and it would help them if i went back to work as soon as i could but i just couldn't bring myself to go yet. I needed time after all of the treatments stopped to just, i don't know, relax, clean the house now that i had some energy and get Macy to like me again!
Once i booked in my reconstruction surgery i decided that i wouldn't go back to work until the surgery, this would give me a bit less than 2 months to do those things that i wanted to do but then i got meningitis and the reconstruction was pushed back so i ended up being off work for a lot longer than i had ever planned.
Financially we were lucky because the money raised at the fundraiser had allowed me to be off work but with the huge costs of my reconstruction surgery, the money was gone. I had no choice but to go back to work as soon as i could after the surgery and now that i've started back i'm really enjoying it. To me, it is the symbol of normality and that we're starting to get our lives back.
So i went back to work for 3 full days a week, at the end of March this year and only 5 weeks later i've already had to cut back to 2 days week instead. I found that on my days at work i felt fine but on my days off i was exhausted. Work was taking up all of my energy and not leaving me any for Macy, Mat, the housework or anything else. I was back to feeling how i felt during radio and I didn't want to be there again.
I told my oncologist about how tired i was and she was concerned about it so sent me for a CT scan and a bone scan and to be honest this scared the crap out of me! I hated the thought of them having to find my veins again because of how bad they are and i immediately thought the worst. I wasn't so worried about the CT scan because i'd had one back in october with the meningitis and it was clear but i hadn't had a bone scan yet so i was nervous that this was going to come back bad. BUT i'm very happy to say that just on thursday i found out that both were clear - no cancer anywhere WHOOOOOOO!
But this didn't explain my fatigue. If theres no more cancer, why the hell am i so tired again? My oncologist diagnosed me with Fatigue Syndrome caused by the chemo. It will go away (may take up to 12 months) but in the meantime i have to 'give myself a break' as she said which is the reason i've cut back to 2 days a week. With what our bodies have been through, and having a 2 year old at the same time, work is the only thing that could give.
If i didn't have Macy I think that i would have worked a bit throughout the treatment and i admire those of you out there that can work throughout the treatment but I'd definately say that if you can afford not to work, don't. Spend that time doing something you enjoy and being nice to your body (make good meals, juices etc).
Initially when i was first diagnosed I thought that i would still be able to work through my treatment, but that i would just have to cut back and looking back on it now I wonder what in the hell i was thinking!
I really didn't realise how much my life was going to change when i was first diagnosed and it wasn't until i had an appointment with my oncologist and she told me what treatment i was going to have and then she wrote out a medical certificate for me for 6 months. I told her that i was still planning on working a bit and she said that i would be crazy to even try to. Between the robust treatment she was going to be giving me and also having a 1 year old, she said no way, i'd end up with Chronic Fatigue syndrome if i did. So i left that appointment an absolute mess. It took until then for me to realise how much my life was going to change. No work for at least 6 months - i couldn't comprehend it!
So through Chemo i obviously took her advice and didn't work and there's no way that i could have with Macy as well. I only had 1 good week out of 3 and I spent that time taking macy to the park and resting, getting ready for the next chemo.
Still though during this, i thought to myself, okay so i can't work during chemo, i'll definately be able to work through radiotherapy and i told my boss that that was the plan and i'd see how i go leading up to it.
Radiotherapy came and I was still exhausted and needing to have a sleep through the day so i realised that i'd be crazy to work through that as well. By the time the radiotherapy had finished and it took a few weeks for my burns to heal, I'd had 10 months off work and now too nervous about going back. My brain wasn't working properly and i felt like i was in a fog of some sort for a long time and i just didn't see by then how i could work when i couldn't even remember my appointments. But I felt bad telling my boss this. She had been so supportive all through my treatment but i also knew that they were busy and it would help them if i went back to work as soon as i could but i just couldn't bring myself to go yet. I needed time after all of the treatments stopped to just, i don't know, relax, clean the house now that i had some energy and get Macy to like me again!
Once i booked in my reconstruction surgery i decided that i wouldn't go back to work until the surgery, this would give me a bit less than 2 months to do those things that i wanted to do but then i got meningitis and the reconstruction was pushed back so i ended up being off work for a lot longer than i had ever planned.
Financially we were lucky because the money raised at the fundraiser had allowed me to be off work but with the huge costs of my reconstruction surgery, the money was gone. I had no choice but to go back to work as soon as i could after the surgery and now that i've started back i'm really enjoying it. To me, it is the symbol of normality and that we're starting to get our lives back.
So i went back to work for 3 full days a week, at the end of March this year and only 5 weeks later i've already had to cut back to 2 days week instead. I found that on my days at work i felt fine but on my days off i was exhausted. Work was taking up all of my energy and not leaving me any for Macy, Mat, the housework or anything else. I was back to feeling how i felt during radio and I didn't want to be there again.
I told my oncologist about how tired i was and she was concerned about it so sent me for a CT scan and a bone scan and to be honest this scared the crap out of me! I hated the thought of them having to find my veins again because of how bad they are and i immediately thought the worst. I wasn't so worried about the CT scan because i'd had one back in october with the meningitis and it was clear but i hadn't had a bone scan yet so i was nervous that this was going to come back bad. BUT i'm very happy to say that just on thursday i found out that both were clear - no cancer anywhere WHOOOOOOO!
But this didn't explain my fatigue. If theres no more cancer, why the hell am i so tired again? My oncologist diagnosed me with Fatigue Syndrome caused by the chemo. It will go away (may take up to 12 months) but in the meantime i have to 'give myself a break' as she said which is the reason i've cut back to 2 days a week. With what our bodies have been through, and having a 2 year old at the same time, work is the only thing that could give.
If i didn't have Macy I think that i would have worked a bit throughout the treatment and i admire those of you out there that can work throughout the treatment but I'd definately say that if you can afford not to work, don't. Spend that time doing something you enjoy and being nice to your body (make good meals, juices etc).
March 10' - Bali
Before i'd even had my reconconstruction surgery we knew that we needed to plan a holiday to help us to get over such a crappy year. So we organised to go to Bali. It was one of the best things we could have done. I feel guilty that we spent money which i would have made our life more comfortable later in the year, but it really was just what we needed at the time, so really the money doesn't matter.
Originally it was going to be just Mat, Macy and I but all of a sudden we found it becoming a 'Crimmins' holiday which was even better! I was so nervous and scarred about going back to work so it was a great way to get my mind off it and just forget about everything, especially the cancer. So the holiday was booked for March 2010. This would give me plenty of time to recover from my surgery and have a good holiday before heading back to work at the end of the month.
The place we stayed at was unbelievable - Villa Anggrek in Seminyak (picture below left is of our own private pool!) and it gave us the opportunity to spend a lot of time with mat's family. I must admit though, travelling with a 2 year old was not fun! Macy was still a bit funny with me and not really listening to what i'd say and not even really wanting to play with me or anything which was really upsetting. I guess she'd gotten way to used to me being sick and not able to pick her up or being too tired to be the 'fun one' so Bali was a bit of a struggle in that regard.
Mat organised for just the two of us to spend 2 nights in Ubud which was lovely. It really was like a second honeymoon and just what we needed. I'm not saying our sex life was nonexistent or anything but it certainly wasn't at its peak during the past year that's for sure. So this was a good way for us to reconnect i guess.
I had to be careful of my new scars while we were over there and with my skin i'm pretty careful about getting burnt but i was putting sunscreen on all the time because i had to be extra vigilant about not getting burnt. I found myself the perfect swimsuit which was a strapless one piece with a high back so it covered all of my scars. This meant i didn't feel selfconscious at all and i didnt have to worry about it getting burnt. I was dissapointed that i couldnt wear bikinis all the time though because finally for the first time in my life i have big boobs, but the scars on my back meant i shouldnt wear them (on the cloudy, less sunny days i wore one for a little while though :-).
Originally it was going to be just Mat, Macy and I but all of a sudden we found it becoming a 'Crimmins' holiday which was even better! I was so nervous and scarred about going back to work so it was a great way to get my mind off it and just forget about everything, especially the cancer. So the holiday was booked for March 2010. This would give me plenty of time to recover from my surgery and have a good holiday before heading back to work at the end of the month.
The place we stayed at was unbelievable - Villa Anggrek in Seminyak (picture below left is of our own private pool!) and it gave us the opportunity to spend a lot of time with mat's family. I must admit though, travelling with a 2 year old was not fun! Macy was still a bit funny with me and not really listening to what i'd say and not even really wanting to play with me or anything which was really upsetting. I guess she'd gotten way to used to me being sick and not able to pick her up or being too tired to be the 'fun one' so Bali was a bit of a struggle in that regard.
Mat organised for just the two of us to spend 2 nights in Ubud which was lovely. It really was like a second honeymoon and just what we needed. I'm not saying our sex life was nonexistent or anything but it certainly wasn't at its peak during the past year that's for sure. So this was a good way for us to reconnect i guess.
I had to be careful of my new scars while we were over there and with my skin i'm pretty careful about getting burnt but i was putting sunscreen on all the time because i had to be extra vigilant about not getting burnt. I found myself the perfect swimsuit which was a strapless one piece with a high back so it covered all of my scars. This meant i didn't feel selfconscious at all and i didnt have to worry about it getting burnt. I was dissapointed that i couldnt wear bikinis all the time though because finally for the first time in my life i have big boobs, but the scars on my back meant i shouldnt wear them (on the cloudy, less sunny days i wore one for a little while though :-).
Another great thing that i found on the holiday was that my energy levels were quite high toward the end of the trip and that felt fantastic. It went straight back to normal once we were home but while it lastest, it was great!!
Anyway, the purpose of this section of the blog is to put in your mind the idea of a holiday. During chemo my sister and brother in law took me away for the weekend which was great, but it was still hard because i didn't want them to have to look after macy for me but at the same time i was too sick to do all of it. But it was nice to have a change of scenery.
After the meningitis we went away for 3 nights just to re-coup and again, just to get away from everything but the holiday to Bali was fantastic and just what we needed. For months beforehand we had that to look forward to and it was worth every penny. Just recently i've learnt about a place called the Otis Foundation (www.otisfoundation.org.au) which is free accommodation for those with Breast Cancer needing to get away. I wish i had know about this earlier as i would have used it for sure but for those of you reading this, jump onto their website and get in contact with them! Get away when you can with those closest to you that you may be feeling at a bit of distance with. It will help with clearing your mind and allowing you to concentrate on the most important thing at the moment - you!
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