May 2012
Thank you both for the encouragement. It is so hard to face some days, and just having the support here makes it easier sometimes.
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May 2012
Wow! I have just had my planning for Radiotherapy. I forgot how much treatment can consume your life. This is my second round of radiotherapy in two years. Last time I was lucky enough to have it at my local hospital. I have since moved and am required to have treatment away from home. I have organised accommodation through Can Assist as I feel that this would be beneficial for me emotionally. It is definitely a daunting prospect though. Sharing a room, a bathroom and basically everything, with people I don't know. I usually suffer from social anxiety so this will be a big thing. Add to that that I am there to receive treatment for cancer and I am scared that I'll end up a blubbering mess.
I do definitely feel that although this is very scary and out of my comfort zone, this type of accommodation should be the best for me. I could only imagine staying in a motel! I would be lucky to leave the room for anything apart from treatment and would spend the time being depressed and avoiding the world outside the door.
Basically I am terrified. Not so much of the treatment but of being all alone, yet surrounded by people I have never met! I'll just need to keep telling myself that we're all in similar situations, take a deep breath and search for the courage that I know deep down inside I do have. I have shown it at many times over the past two years. I just need to dig it out again!
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May 2012
Although I don't have issues with my bowel, I do understand your frustration and how easy it is to feel miserable with the outcome after surgery. Yes you are lucky to have caught it early, as am I, but at the same time the feelings you have about it are completely normal. All I have to worry about at this stage is incontinence as far as side effects are concerned... But it feels like something really major! And I only wish things were better than that!
My advice is that you are allowed to feel miserable some days, just try not to let yourself dwell on the negatives for too long. This is my second time around and it's hard to remain positive ALL the time, but a good dose of positivity balanced by some times of negativity really are normal. And posting on here about feeling negative isn't fraudulent, totally the opposite. We all feel that way at times and are here to support each other. Even if it's just a kind word to make you feel heard.
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April 2012
Hi All,
I am now at home recovering from surgery to remove a recurrence of cervical cancer. Before the surgery the Dr's were hopeful that it would be fairly simple surgery and that I may have part of my bladder removed, however it should repair well and go back to normal. So I went ahead and signed all the paperwork, including the waiver for bowel resection in the event my bowel was involved (which was highly unlikely).
I woke to find that my life again has changed dramatically. I have less than 1/3 of my bladder left. The cancer was larger than expected and ran down one side of my bladder. Because of this, bowel ileum tissue was used to reconstruct a bladder for me. I am greatful that this was able to be done, however I was told I may never be able to go to the bathroom by myself again and that I would need to self catheterise, probably for the rest of my life.
On day 9 of my hospital stay my urethral catheter was removed and we were about to start a clamp and release of my suprapubic catheter (going through stomach into bladder) to increase the size of my new bladder. I got as far as half an hour and had the strongest urge to pee! I surprised my nurses by going to the toilet all by myself. I was so proud and so excited about my recovery. I was hoping and wishing a praying that they were wrong and I'd be home soon and back to normal... but that was a little unrealistic.
My surgery was just under 3 weeks ago and I am at home, however, I self catheterise and irrigate my bladder with saline every 6 hours to avoid infection. I can only hold my bladder for 2-3hours. I am sleep deprived, have no appetite, strange pains as my bladder/bowel contraption settles in. It's all a little overwhelming. I meet with the radiation oncologist this Thursday to find out about follow up treatment and also with my gynae oncologist to check my progress.
I am trying to remain positive about it all. It is definately hard at this time. I feel pretty miserable physically so it's hard not to feel that way emotionally. Also, it's hard to imagine how I'm going to adapt my life to the new routines I have. It's also hard to gauge how long this recovery is going to take until I can get back to the real world. Being a social butterfly, earning my keep, sharing moments outside with my husband doing the things other couples take for granted.
My situation is worse than I'd hoped for but so much better than it could have been. This is what I need to hold onto and hope that it gets me through to a time when I have more positivity to draw upon and life seems a little easier each day.
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March 2012
Thanks Sam,
What you have said here is so true. I'm learning to be greatful for the times that I feel good within myself and learning to cope with riding out the times that I feel awful. I have definately planned some things to look forward to that are coming up and will cherish more the time I have to spend with my family and friends
Thank you for your suppport.
Miss Moo
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March 2012
Hey Maddie,
I have a wonderful mum and dad that look after me really well. I'm living with them at the moment as we were in the middle of a move to Newcastle for my husband for work and he stuck up there all alone. He does have wonderful friends up there and a large support network and is trying his hardest to get us a place to live so we can start our married lives together once this round of treatment is done! So things aren't the best just now. But we'll get through it. We're a positive lot.
It's always good knowing that what I'm going through emotionally is just a normal part of this journey and I can't imagine what it's like being on the other side of this horrible disease. It must be so tough to be the partner of someone with cancer. It sounds like your partner is one lucky guy!
All the best to you also. And your man of course!
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March 2012
Hi Tracey,
I'm in Sydney for treatment. Would've been crazy if we were both in Melbourne tho! Will definately keep you updated.
Sending you all sorts of positive vibes for your news tomorrow and so hoping you have lots of love and support also!
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March 2012
Hi Tracey,
Not to scare you but my first lot of treatment finished in September 2010, just last week we found it has come back. I only had external radiation and it really wasn't that unpleasant. Apart from a yellowish tan around the areas that were exposed to the radiation, which eventually faded, and 3 tattoo's the size of a pen point I really didn't have any bad side effects. This time round though they are discussing both internal and external radiation and chemo. I find out tomorrow what we'll be doing.
Emotionally it has been easier to deal with this time. It's harder to stay positive that we'll beat it this time but I'm confident as I have a great team. I'll also feel better if we're hitting it with every treatment imaginable. I just want to blow it out of the water!
Good luck with your meeting tomorrow, I'll be keeping you in my thoughts!
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March 2012
I woke at midnight last night, starving hungry, busting to use the bathroom and with bad back pain. Half an hour later, bladder empty, stomach fed and pain easing I headed back to bed... only to wake at 5am crying. I'd just had a bad dream where an unsupportive member of my family had baited me into slapping him in the face. I was crying because that type of violence and anger is not something I am used to displaying. I realised while wiping away the tears that it was going to be one of those days. Up with just the birds, in tears and to make it worse, not only was the back pain here again but now I had a rash! I sometimes break out in a rash on my arms and shoulders and sometimes neck, after prolonged periods of stress, so it's nothing too unusual for me but definately an outward sign that regardless of how strong people always like to tell me I am... I am just a person like anyone else, coping as best as I can.
I spent the day in bed, alternating between checking numerous support websites for new posts or messages, trawling facebook for interesting things happening in the world of my friends family and colleagues, reading and sleeping. I totally avoided participating in the "real world" today. I needed a day off. So I feel irritated, useless, tired, lazy and not very positive today. Not such a great day.
What has put me over the edge is the lovely lady from my team at the hospital calling to advise that my appointment has been brought forward two hours (not so bad - not so much waiting) because the urologist wants to give me a cystoscopy (insert a tube into my bladder for a look around - EEEEK), but I'll be knocked out (thank gosh) but I need to fast from 7am, NIL BY MOUTH (darn). This has been the patern today. Any and all information has been assessed immediately for how I feel about it and I a plethera of emotions coursing through me in any 2minute period ranging from mortified through to totally relieved. Nothing these days is able to be processed as good or bad. There are always multiple layers of anything that I am facing and I feel differently about each part. It's so tiring. All these emotions. I wish to go back to my life before cancer where I could just have a day. Where not everyday was a rollercoaster of emotion like it is now... But hey, dont we all.
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March 2012
Thank you Mignon,
I will definately give her a big hug this morning when she gets home from work. I'll make her a cuppa and we'll sit on the back porch and chat about our plans for today. It's our morning ritual during the week and I am so greatful for it.
I was thinking about some flowers to cheer the house up. You've just convinced me to get them (and another bunch for mum also!)
Moo
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