topic Re: Introductions in Living with cancer

Introductions

Nikki_YAC — Wed, 17 Jun 2009 22:31:05 GMT

Please use this space to say your first hello and express what ever you would like to in your first message. Write as much or as little as you feel comfortable with. If this is freaking you out... try answering these few questions and see how you go! Your name: (can be fictional) Where do you live? How does cancer affect you? (say a few words or write your whole story, its up to you) What brings you to this group? What would you like to gain from a group like this? Any other comments? Also, if you have a particular topic you would like to put on the table and discuss with other YACs (as I am sure many of you will have :)) why not start your own 'conversation' to engage others. Have fun, be expressive and enjoy! Nikki

Re: Introductions

Nikki_YAC — Wed, 17 Jun 2009 22:43:07 GMT

OK, i will start the ball rolling for the intro's.... Your name: Nikki Where do you live? in a small town in northern NSW called Murwillumbah How does cancer affect you? I was diagnosed with a childhood form of leukaemia at age 28 in 2002. I spent 1 and a half years at the RMH on a 54 week chemo high risk protocol. The time that I spent in this hospital was life changing. I came from a family who had no history of illness. Before I became ill, I was very naive to the fact that so many people had to live a life with debilitating illness or injury. All of a sudden I was thrown into this world not knowing if I would ever have a normal life again. One of the hardest adjustments I had to make was actually learning to do nothing after leading such an active and young life. It was extremely hard for me to lie in a hospital bed and think of how my friends are just continuing with their lives on the outside. Unfortunately I saw that some patients in hospital had no one to care for them, and they simply did not survive. I was lucky; I had someone from my family at my bedside every single day I was in hospital. I truly believe my family’s support and love helped me to remain strong and gave me the will to live. Probably one of the hardest parts of living in hospital was meeting the patients who became my dear friends and did not survive. I now live life with a level of guilt of why did I survive and they did not? Another great difficulty was feeling alone because often I was surrounded by older patients who I just could not relate too. Many were way, way old, nearing the end of a long and productive life, and willing to die. Me on the other hand… I very much wanted to live my life and felt so ripped off and that it was unfair that I may not have the chance to do so. Even if I did, it appeared to me at the time that I was not going to be living the exciting life I once had. These are driving forces behind me wanting advocate and to do something with a relatively normal life I am fortunate to have after cancer. Because my treatment was 1 and a half years in RMH and another 1 and a half years recovering from the treatment, I was absent from mainstream society for nearly 3 years. Slowly I learnt to take negatives situations in life and produce or turn them into positives. I came out of my illness with a new view to life. During my illness I questioned things like: we all work way too much – life is not about work; life is about family, relationships, love; we all need to slow down and enjoy what’s around us as it doesn’t last; life is limited so why not make the most of it. But my new found views on life I was soon to discover were in opposition to the world outside. It was hard to fit back in to the outside world, as society just seemed so fast-paced and on a different wave-length to me. Everything in those 3 years in the outside world just seemed to speed up. Real-estate prices went skyrocketing. 50km and 40km driving zones were introduced in this time. Men starting dressing better than women, doing their hair and wearing pink! It was all a bit of a culture shock to begin. I soon realised that as I physically recovered my emotions were catching up with me. I came crashing down in a heap, I became angry and I often lashed out at those I loved. I was worried that my emotional stability – or lack of it was going to cause my cancer to come back. I knew I needed professional help to deal with these emotions, but I searched and searched and could not find anything. Yes there were support groups, but once again I got the feeling of being alone by going to them, as the majority of participants in those groups were either way too old or had breast cancer and just I felt left out. Ever since my diagnosis, I have been on a constant and perpetual hunt for support services for someone of my age who has had cancer. I keep finding all these services out there for younger people (kids, teens) and older adults. I can see great cancer support organisations specifically for Young Adults up the age of 40 years operating overseas. I have been continually questioning myself as to why we can’t have similar organisations here in Australia? I have now taken some actions in answering this question... AND HERE WE ARE! What brings you to this group? The need to meet other young people affected by cancer and to have a place to share everything and anything. What would you like to gain from a group like this? Connection, creativity, friends and support. Any other comments? A BIG thanks to the Cancer Council NSW for listening to all my pestering about the lack of support for YACs and then helping us by setting up services like this 🙂 you guys rock!

Re: Introductions

stevec — Thu, 18 Jun 2009 02:16:43 GMT

Wow Nikki, you've summed up the way I feel about things perfectly. Like you, I find it hard to understand why people are so obsessed with work and things that really don't matter. I was already having those thoughts before, but being diagnosed with cancer just sealed the deal. Ironically though, I'm writing this from my work desk so I'd better get moving... Your name: Steve Where do you live? Newcastle, NSW How does cancer affect you? I'm in remission from a rare form of testicular cancer. I was diagnosed in December 2007, I had major surgery on Christmas eve and started 3 x BEP in mid-Januray 2008. I've been in remission for over a year now and everything is looking good. My wife is also in remission from thyroid cancer and doing well. My dad recently passed away from bowel cancer. What brings you to this group? I want to talk to people who understand where I'm at in life and hear about how they're getting on with things. What would you like to gain from a group like this? perspective, friends, ideas Any other comments? not right now

Re: Introductions

AmandaC — Sun, 21 Jun 2009 11:50:12 GMT

Nikki, what a great way for us all to know each other better 🙂 I like to think of myself as living life in the left hand lane, I am not in a hurry and love to take everything in. It like seeing life through new eyes at times, the air seem fresher, the sea bluer and things that used to worry me don't seem to have the same significant anymore. Your name: Amanda Where do you live? Newcastle, NSW How does cancer affect you? In January 2006 2 months after my first son was born I had a needle biopsy on 4 lumps in my thyroid. 1 week later it was confirmed that 3 of the lumps had papillary and follicular cells. So 2 weeks later I had my whole thyroid removed and after disection biopsy; was told on my 29th birthday I definatley had papillary carenoma in the left lobe 1.1cm. I was then todl I had to give up breast feeding for 5 months and have a radioactive iodine uptake test to ensure it would not uptake in my breast causing further problems. So after being left of thyroid hormone for wayyyyy to long I undertook radioactive iodine abiliation and spent 4 days locked in a lead lined room and 1 month away from home. My family had already disowned me (long story) so I had no support, was not surrounded by loved ones; but the thought of my husband and baby boy at home kept me fighting. I have now just reached my 3 year mark and I am still in remission and am just now starting to feel ready to deal with it and move forward. What brings you to this group? I am hoping in sharing and supporting one another we can help each other heal and move forward in a positive way. What would you like to gain from a group like this? healing, friends Any other comments? "if you always do what you've always done; you'll always get what you always got"

Re: Introductions

Traveller_In_Wa — Tue, 23 Jun 2009 10:42:38 GMT

Your name: Chelsea Where do you live? Albany, Western Australia How does cancer affect you? I've recently finished about 1 years worth of chemo and radiation for Hodkins Lymphoma. I have had new scans taken and am on my way to Perth to see my oncologist this week to see how everythings progressing. I am extremely nervous! Very very worried it's not all gone... It was a shock for me to be diagnosed. I'd had a bad flu, and my neck became swollen while I was sick. But when I got better, the right side never went down. Then I went through a series of biopsy's leading to my diagnosis. What brings you to this group? I'd like to find out how other people dealt with the aftermath of cancer treatment, the 'getting back to normal' stage. Thats one thing I'm finding very difficult. What would you like to gain from a group like this? I'd like to gain friends who've been in a similar situation to me. Any other comments? -

Re: Introductions

Nikki_YAC — Tue, 23 Jun 2009 23:21:18 GMT

Hi Steve and welcome! Thanks for answering these questions and introducing yourself. OMG! cancer has been prevalent on your family.... I can see that you are in quite a unique position and your cancer experience with your wife AmandaC also having had cancer very recently. I must say, I have never come across two young adults who are married, have a young family and experienced each others cancer diagnosis's and treatment. I think this very unique situation will enable you both to bring so much valuable advice and input for members of this group and alike. I see that you are looking for things like perspective, friends and ideas from this group. As the group grows, you will not doubt form many new friendships that will possibly lead towards new perspectives on living with cancer as a young adult. Likewise I am sure you will gain heaps of new ideas here... especially if you kick off a conversation topic around this concept of 'Ideas' and what this means for you.... To do this, you use the "Create Group message' link on the right side of the screen in the 'Group content' box 🙂

Re: Introductions

lizyole — Thu, 25 Jun 2009 05:03:28 GMT

Your Name Liz Where do I live Langwarrin Victoria How does cancer affect me. Cancer has been a part of my life for at least 20years on and off. First dnz in my 20s with thyroid cancer and the following year with Hodgkins Lymphoma and again 2yrs ago with cervical and also thyroid cancer and alot of illness in between due to infections and such. I did find the best way to get through for me was to have goals, find your passion and focous on that, mine the first time was showing horses, I wanted to win Supreme Champion at Melbourne Show, when I achived that I wanted Australian Champion. This time it was more about my family, I wanted to see my daughter skate at Nationals, this is the daughter I had that they did not think I could have, after all my treatment they did not know whether she would have problems or not, but she is perfect, a teenager now and full of smarts, but still a good kid. I know it was very hard for her, not knowing if mum is going to die or not, we asked the school to supply her with a councelor I think it helped, my husband coped by working too much which was not a great help,I think he just didn't know what to do, my mum and dad were the rocks in my life, taking me to doctors appointments and test cooking meals and helping with house work which is amazing as they are both in their 80s. I do think in alot of ways it is harder on the people around you because they feel so helpless

Re: Introductions

MissRen — Thu, 25 Jun 2009 06:02:44 GMT

Hi Everyone! Your name: Reena Where do you live: Forest Lodge, NSW How does cancer effect you: I was diagnosed with breast cancer Oct 08, however I detected a lump in my breast in Sep 07. When I first found the lump I went to see a G.P and she referred me to get an ultrasound. I was told by the radiographer that the lump was in fact a number of cysts. When I went back to the G.P she told me that the cysts would go just as they had come, to not worry and to start seriously thinking about having children as pregancy diminished the reoccurence of cysts..... Fast forward 12 months, I believed the lump in my breast had become bigger and it was very painful.From March - Sept I was working interstate a lot, spending a lot of time in airports and little time at home. I kept telling myself that once the travel stopped I would go see a doctor about the lump. To be honest, deep down I knew something was wrong and I was using the travel as an excuse. I didn't want someone confirming what I knew. I gave my self kick up the bottom and went to see a different doctor. Since the diagnosis I have had a bilateral mastectomy, chemotherapy and radiation treatment. I am now on a course of hormone treatment, I had hoped to avoid needles but unfortunately I've got another 1.5 years and being hooked up to an I.V. I expected the physical side effects and was able to prepare for it to some degree but I didn't expect to not be able to string a sentence together to have a conversation, I didn't expect to lose my short term memory. Thankfully this is behind me and everyday I am becoming physically and mentally stronger. What brings you to this group: Cancer is a lonely disease. My support network is fantastic but every family member and friend is on the outside looking in. I want to be able to share my thoughts with people who have a better understanding. What would you like to gain from this group: making new friends, sharing stories, asking advice.

Re: Introductions

Nikki_YAC — Thu, 25 Jun 2009 20:57:04 GMT

Welcome Reena! I BIG issue for YACs in Australia is miss diagnosis, or late diagnosis - just as you have outlined in your introduction here. MAKES ME SO ANGRY that this happens!! Your a very wise gal for persisting with the diagnosis and listening to your intuition. mmmm my brain is still affected from the chemo / or cancer experience 7.5 years later, so i am with you there too! i am the master at writing lists and having little note pads everywhere. So true with the family and friends being 'on the outside looking in' comment. there comes a time when you drive them all nuts anyway and you must seek and find that additional connection with like minded folks. and that's what we all are here for :) Happy connecting!

Re: Introductions

Nikki_YAC — Thu, 25 Jun 2009 21:07:54 GMT

Welcome Amanda! I am SO GLAD to hear you have come through your cancer experience and can 'see life through new eyes at times...' after having no support from your immediate family. Thank goodness for your hubby and little boy who were there to keep you going. Its not surprising its taken you 3 years to get to the stage were you are 'ready to deal with it and move forward'. it was a similar amount of time for me to feel this shift forwards too. I call those 3 years leading up to being able to move forward my 'transition phase'... and at times it was not pretty! I really like your reasoning behind joining this group.... that is the 'healing' aspect and that it can be a two way process between us YACs. nice quote BTW.... might have to steel that one time to time :) Happy connecting, Nikki

Re: Introductions

Nikki_YAC — Thu, 25 Jun 2009 21:19:04 GMT

Welcome Chelsea! wow gal... you have along way to travel for your treatment and follow up appointments (I lived in WA for 6 years in my 20s). Living in WA must be even more isolating for a YAC than us guys over here on the east coast. so, i am so glad you have found this site and joined this group :) With you being only 1 year post your diagnosis, its no wonder you are finding difficulty in 'getting back to normal stage' flowing. Hey... what is 'normal' anyway?? - especially after being confronted with our own mortality at such a young age through a diagnosis with cancer!! I am sure you will find some great new friends here as this group grows who you can share similarities with and help you move forward. Happy connecting, Nikki

Re: Introductions

Nikki_YAC — Thu, 25 Jun 2009 21:28:24 GMT

Welcome Liz! You having had your experience with cancer begin over 20 years ago brings a certain level of understanding and insight that I am sure many of us YACs here need and want. Just to hear of how you have coped and moved forward each time with your many cancer diagnosis over the years is sheer inspiration! Happy connecting and thanks :) Nikki

Re: Introductions

lizyole — Fri, 26 Jun 2009 21:35:09 GMT

Hi Amanda, I just wanted to say isn't been off the thyirod hormone for all that time absolutly horriable, it makes you feel so crap they did it just before I had my RAI and then for a test afterwards. When I had it done years ago I didn't notice it as much because they didn't put me on it untill after the surgery and tests. Did you know there is a needle you can have so you don't have to do it the other way I found out afterwards it is a bit pricey though Liz

Re: Introductions

AmandaC — Sat, 27 Jun 2009 01:05:28 GMT

Yeah I was told because I had just had a baby it was to high a risk, apparently it can cause clotting which is already a risk for mothers who have had a baby in the last year. If I ever had to do it again I would definitely ask for it, I am still not level 3 years later its such a battle.