Thanks Sailor and Mrs Elton,
Can't believe how long that blog is! Seemed to come out in a tumult. Did you rwally get through all of it?!?! You are troopers 🙂 I am glad it helped someone else. So many times reading other peoples blogs has helped me. Its funny though, if I wrote it tonight it would be much more up beat and humorous. Just illustrates once again how my moods swing back and forth.
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My husbands diagnosise for bowel cancer back on March 3rd 2009 was pretty devasting, with statistics looking very much on the side of cancer. He immediately decided he was going to die and cried everyday for 10 days straight. In the end I got mad and let him have it (the best approach? Not sure about that but it worked). 'I may not be Kylie Minogue, but your not getting out of this marriage that easily sunshine!' I put up photos of the girls in his room to look at everyday and had one of his friends or work mates come in daily to break up the monotony and so I could go home for a shower. My Dad had to fly up from Vic to look after my girls as T would just burst into tears if I said I would stay home that night. He was so dependent on my being around him, this 6ft strong man who worked out bush most of his life in solitude and witness so many hard things.
Once we got home things were a bit better on the positivity side of things. Being back in the house he worked so hard for made determination stand up and say hi. Adjusting to being an ostimate was extremely difficult for a man who was so proud of the sounds his body could make. Once post stoma, while having a quiet few in the shed with Johnno Coleman on the radio he turns to me and says, 'Wife my body is an orchestra, I really am one of the lucky ones.'
So not only has he the diagnosis of cancer he has also lost one of his best mates in the process, flatulence!
Not to be detered, he decides to ignore all warnings from the wonderful stoma nurse and 'let one of the bag' literally! First time ever he has actually made his own eyes water. 'Karma!' I yell from a safe distance. 'Why do you ask two %@#*holes' he yells back amidst giggles and the sound of Glen 20 being flooded throught he loungeroom.
Once treatment started he really picked up. To take action was a big relief to him. Off chemo weeks he was walking 7km with our shepherd Baz! Chemo weeks was a different story but still he was always posisitve. Gets to the clinic and says 'I'm here for the juice, hook me up please!' I didn't sleep for three nights a fortnight as I was a little anxious the night before that I would oversleep for some reason (crazy?!?!), awake the next night as the dex kept T up most of the night, then awake again the next as I was too damn overtired to sleep by then. Also I could not get used to the sound of the pump. Doc prescribed sleeping pills for T to counteract dex, worked for him but there I was still wide awake.
Fatigue did get worse though treatments started Monday and he was all good again come Sunday. Money started running low and I was flat out trying to find the man who previously worked 6 days a week something to do. Boredom and frustration came to live with us as well as seperation anxiety in our 7 year old. My lovely family commented on how bratty she had become and questioned how I could allow her to be so clingy and dependent. Hmmm. I wonder if cancer is a little hard to deal with when your 7 and your world is turned upside down (sarcasm). 'Sit on hands. Best course of action right now.' I tell myself.
My fifteen year old found some angels inside a building labelled Headspace, whilst lil one started visiting Paradise Kids. Both organisations were life savers, or at least sanity savers. Middle child did not want to talk to anyone, 'I'm fine don't need to talk to anyone.' well I did so one sleepless night I googled online cancer support and found a lifeline (hi guys!). So those who wanted help were dealt with and on we go.
Halfway through treatment now and levels dropping all over the place. Around treatment 8 dose is lowered. Neuroprophy was a bit of a pain but thats about all, and stout worked for nausea,as well as maxillon. Few beers followed the stout. Off weeks were getting even more tedious and frustration and boredom decided it would be fun to pick on the kids. Middle child always seemed to be best option, perhaps because she lived life as normal. Not sure on that one. Oldest drops out of school and goes to TAFE after falling so far behind because of all her extra responsibilites. Is happy there though and things are working out for her. Confidence climbing now she has realised that she is far from stupid. One very good thing to come from this year. My baby has realised what a wonderful, strong and intelligent person she really is. Once a week as four girls go sit at coffee club for a little girl time. Another good thing to come out of this year.
Treatment nine and oxalli has to be ommitted. End of the world and someone must pay. Middle child will do. Lets pick on her boyfriends haircut and drink more beers. 7 year old decides tantrums are fun and that she can yell louder than Dad. Time out required, Transformers at drive in here we come. Middle child sleeps out like most weekends to avoid discussions about haircuts and the love of myspace. Goodnight out for rest of us, with Uncle tagging along whilst visiting from Spain.
Wedding the following week. Four days time out. Two big girls wandering off down to the beach at will and just hanging out together. Another good thing, their relationship is going from strength to strength. Lil one, T, Uncle and I watched dolphins and whales for a whole hour. Peaceful. Lovely. No yelling. Wish I was there right now. Appreciate the beauty of it all, one more lesson learnt.
Back to it. Can't afford Paradise kids, ballet, tap, jazz or musical theatre anymore. Migraines make an appearance Grrrr! Don't have time for those. Start working to dive us some money to play with. Seems to mostly go on beer, though T has now decided he also likes wine. In hospital for a day for me with burst cyst yay, don't have time for that either. Treatment finishing up. Platelets very very low but go ahead with last treatment anyway. T goes out with mates, writes himself off and falls over while I am out at work meeting. Unaware I get up early run kids to school do shopping and come home to find his elbow all cut open and bleeding everywhere still. Can see something white in there so off to hospital for few hours to have that seen too. Lil one has a film to do. Has had to miss out this year as can't be on set during chemo so she is in her element. Realises how much she has missed being in front of the camera and decides she will be a hoolywood star when she grows up. Good thing again, 7 year olds deserve to dream about being hollywood movie stars. Decides she will be getting another nominations at QNFA for this performance and builds a little jurassic park set in the background of a shot with her plastic dinosaurs. (hopefully not visible as there were no plastic dinosaurs during the war in France). So good to see her enthusiastic again. Born to perform that one.
Find that fundraising for cancer is the part of my job that I really excel in and enjoy so throw myself into that like I do all things that catch my imagination. Take out fundraising champion two months in a row and feel really good about what I am doing. Just like when I shaved my head last year. Middle child breaks up with haircut, whole world comes crashing down around her. can't eat, vomits all the time wants to be with her Mum. T decides now is a good time to lecture about not going to school. Child cries a lot. I have to walk her all the way to her classroom just like I did when she was 5 and be waiting for her when she finishes school. Seek professional opinion and also chat with cancer connection friends. All say same thing. Year has finally caught up with her and keep her close until she is feeling less fragile. T wants to know what she has got to breakdown over. Teens rhese days need to toughen up. (was this the same man who cried for ten days straight until I kicked his butt? but that is not a helpful thing to point out). Oldest child hates T, middle child hates T, lil one wants a new Dad, T wants a beer. I think of dolphins and sell Tshirts. Visit my cousin in NSW for a couple days. We laugh and laugh and laugh. Both of us are nuts. I love her to death. Phone rings constantly with calls from home. Can't bring myself to turn it off though. mostly from my middle child, though lil one calls to remind me she wants a new Dad. Visit my Grandad while there. Will be the last time I see him. He teases me about my football team and tells me I have wonderful, beuatiful children because I am a wonderful, beautiful person. Will have to think about that one a bit. Tells me I am strong. I know that one.
Oncologist says remission!! Yay! no scans until February. I help another girl with her girlsnightin. Turn up to her event by myself. Another good thing about this year. Learnt not to let anything stop me doing what I like to do, within reason of course. Timidity conquered and I have a great night, and get to know someone else who has such a similar story to mine. She shaved her head that day. I cried when her pony tail got snipped off, Just a little tear, but first one since Feb when I lost one of my dearest friends to suicide. Made me realise I haven't had time to cry myself yet. Don't want to start incase it never stops. Another thing learnt this year. Even rocks can deveop cracks after time.
Got my pink wig ready for Saturday, pink nails and a tutu, got 30 friends coming along. Surpassed my fundraising goal already by almost double. Another good thing learnt, I am really good at this! T has his stoma reversal op on Melbourne Cup. He may feel more like himself when he can once again say 'pull my finger'. Big girls fly to SA for cousins 18th so will have a little time with the baby of the family. Think we will go see Astroboy and eat Macdonalds (yuk) which is the biggest treat in the world to her. One more thing learnt. the simple thngs in life are often the best, even outside of a tv commercial.
A few things need fixing around here, but we will jump one hurdle at a time. If there is a challenge ahead I will be there, not with bells on, but likely a pink wig and a tutu 🙂 Funny enough I dont even like pink lol.
Learn from everything you come against.
Take care everyone, hope I did not bore you to much. feel like I just purged myself and might now sleep.
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We are in exactly the same boat and have now gone through all of our savings. I also have three children to run around, and all of their sports, music and singing lessons have had to stop. On top of that each of the kids are experiencing their own turmoils due to bowel cancer. Scary to have an uncertain future as an adult but mind blowing as a teen or 7 year old.
The forms from centrelink really told me nothing about whether I will be eligible for help after I have written the 5000 word essay they require (slight exaggeration I know, but only slight), and quite frankly I am finding it hard to find the time to do anything. Nights are spent going through bills robbing Peter to pay Paul, trying to tidy up while noone is underfoot and catching up on work I can't do during the day. I daydream about sleeping!! We have had 10 months of this and have atleast another 4 months to go. Somedays I just want to stay in bed and ignore it all, but I just don't have that luxury.
Frustrating! Very frustrating! 😞 So tired of having to say no to the kids so they other day I just thought stuff it and we all went to the drive-in. then I spent the next week wondering if that $40 should have gone on a bill.
I have a response ready now when I get the give me your money calls. I tell them they have been chosen to go into the draw for a great prize. This will be drawn each friday and I will be sure to let them know if the are the lucky winners. For some reason, they don't seem that happy about it. Some people hey!!
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It will be I'm sure, Thanks Mrs Elton. These things happen on this rollercoaster we call cancer. I have just been reading some of the jokes on here and feel better already! 🙂 It is fine to call me Alana if you like. No protocol, some of us will sign with our real names some will use their other ones (dont know what they are called, still getting used to chat technology) it is up to you! However you feel comfortable. Sometimes anonymity helps open the flood gates or gives us courage to ask questions. This site is a wonderful help to me and I hope you get as much out of it as I have. Some nights I just read sometimes I participate, but i always know on a night like tonight there is someone on here that will understand.
take care, of yourself too, it's important to remember that!!
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Hi Mrs Elton,
When I read your post I thought wow, her too. Just goes to show we are not really alone. If you've felt that way and I've felt that way, neither of us are alone in those feelings! As carers we often try to stay strong for our partners, but none of us are robots. Today was a really bad day for me and I went through all the usual self-reprimands, I'm not the one with cancer, we are luckier than some, do I have the right to feel down, don't let the kids see your upset, but blah blah blah. We are living this too and of course we have a right to feel down. This is a hard slog!!
Just remember if you feel it, someone else is bound to have felt it too. This website is a great way to remind each other we are not alone. Chin up and as Sailor said, cry if you need to.
good thoughts coming your way
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Thanks so much for your posts, you are all so kind and I really, really appreciate it!
Back to reality now. Really loved seeing my cousin we laughed so hard at times I think I pulled a muscle. 🙂 I also got to visit with my Grandad who has terminal prostate cancer and is just waiting for the scan that says 'bones to brains' in his terminology. Seems that the C word is really having a good crack this last few years. My uncle broke down and cried which as awful as it may sound, was something that really needed to happen. The rest of the family thought it was so out of the blue, but I was not surprised. He hasn't said anything to anyone before and I did receive an email a couple months back that indicated he may be struggling, but unfortunately we were right in the middle of our battle and I didn't get to follow it up with more than a few words of support. It is out there now and I have got them to all choose jobs between them that will give uncle less responsibilty. Also they are now aware that he is not coping as well as they thought. It was nice to see how quickly they all jumped up to pitch in. Really nice.
Has anyone had any experience with anxiety attacks in their children? My daughter who had quietly plodded along this whole time is now having really bad panic attacks and it is effecting her schooling. I have her booked in to Headspace for some counselling but am worried she will fail year 9. She already struggles academically and is missing a lot of school! She has always been so independant, bubbly and social and now is clingy, quiet and a hermit. Cancer piled on top of normal teenage drama has really ko'd her. Would love to hear any opinions or advice as this is a very scary turn of events. She txt me about 10 times a day while I was away. Also she has started sleeping with her big sister most nights. Seems a big regression for such a carefree little spirit as Boo.
Anyway thank you all again for your wonderful comments. I am so glad we have all got each other. And Sharon i will send you numbers via email, thanks for the offer of friendship.
Take care everyone
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Thank you Ruby, Nikki and Samex,
It was really helpful to read your comments. It has given me a good look at the other side of the coin so to speak. I am currently away on a much needed timeout, feeling guilty but refreshed. Chemo is over for now and there are no appointments until next week so jumped on a plane to see my cousin who I am very close to. Just for some wine and giggles, and we have certainly indulged in both!!
My phone has rang constantly with calls from home but all is well and everyone is just anxious about seperation this year. We are a strong family unit who talk things through and we will crawl through this to the other side as well!!! One step at a time right?!?!?!?!
My thanks and best wishes to you all.
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Ahhhh Dex of the big red head as we refer to it in our house. Sorry but my husband is king of humour deals with everything!!!
My husband also had a lot of fatigue. He has just finished 12 out of 12 scheduled treatmeants. Nausea was never much of a problem, but I always tried to schedule a coffee date with friends on disconnect day (which was day 3 for us) so he never felt embarrassed about taking a little kip in the arvo. by the time I had picked up the kids from school and stopped for a phantom supermarket visit, he was refreshed and ready to face the girls. for some reason he felt embarassed about feeling tired. Thursday was day 4 and worse again but I would spend the day with all the paperwork so he could nap at will.
I bought him a model helicopter to build also so he could have some down time with a reason. My youngest would help him with that so it was also a good excuse for them to spend time together without being to active.
Isnt the section on here for family of people affected by cancer a wonderful support? It is the first place I have found for us to talk with others in the same predicament besides the oncology clinic and they are often to shell shocked or putting on the face to share much. And being able to hear from others who have had or have cancer themselves really really helped me to understand what my hubby was going through.
Keep reading Nikki as there is always something to help.
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I was just wondering if anyone had any advice and/or some stoma friendly recipes. My husband had an ileostomy when his tumor was removed and we are still looking at living with this slight alteration for at least another three months. We are both adept in stoma care, but would love to hear from others in the same situation. It is a topic that most people avoid like the plague, but we are ok with that. It would be nice to share recipes as our diets have changed so much and all the old recipes are unsuitable. Hubby was a huge red meat fan which is a no go after the ileostomy. Anyway, drop us a line if you are in the same situation or have some yummy treats to share.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.