21yo with Hodgkins Lymphoma looking for supports in Melbourne

[Alanahatz]

I am 21 years old and Have just started my first chemo on the 4.7.12 following 2 lung surgeries to remove nodes and one ememrgency surgery because I had a lymphatic leak. Im new to this site and still trying to see how it works. I was wanting to connect with people with the same condition and see there experiences, its also difficult as Im not in contact with any young people and want someone to relate to. In saying that I am open and happy to have anyone of any age and any condition to talk to, its not exclusive, and would just like to hear of others experiences. I have started on ABVD therapy which is going ok so far, I have had a few bouts of nausea when I ran out of anti-nausea tablets and had to get more. Otherwise Im doing ok. It is winter and I keep thinking I cant just sit at home all day but its hard to get out to go for a walk and do some excercise, is this my motivation or the chemo? I have a job to go back to when I finish treatment, ironically im a nurse ( a new one that still has alot of learning to do ) I have a wonderful partner and worry about my future having childeren, I have PCOS (Polycystic Ovarian Syndrome) which aready de-creases my chances. Also the relapse rate and higher change of getting secondary cancers when Im older bothers me, and makes me question if I should even be thinking about childeren. I have taste and smell changes from the chemo. I can smell a strange smell uner my fingers no matter how much I wash them, but no one else can smell it. I dont know if it sounds stupid but I was wondering if maybe its the chemo? Like when you eat garlic and your fingers smell. Maybe its just me. I guess I have alot to discuss... If anyones interested?

[kj]

Alanahatz When I went through chemo I experienced a lot of different sensations with Taste and smell so dont be alarmed you are not imagining it I used to smell strange odours when I was on chemo, even though i have finished chemo it still happens occassionally. I read your story, sad it took so long for a diagnosis you have the right attitude and I hope you can interact with someone who is suffering from the same cancer it can help with strategies between each other I wish you well on your treatment and the journey you are taking kj

[Alanahatz]

Thank you for taking the time to reply. Thank god my family were starting to wonder about me. I tell my dad almost everything I can think of so if something bad ever happens he can say, she was complaining about a wierd smell no one else could notice, and it might help them find out whats wrong. I must sound like such a wierdo. Thats my excuse anyway, its just nice having him being so supportive and Im glad I have someone to listen but its even nicer when I have someone else who has experienced it telling me its normal. Thanks again Alana

[Bindy]

I can recommend The Warwick Foundation In my shoes as support for anyone 18 - 40 for support. I hope this helps 🙂

[flight]

Hi Alana, I had chemo (ABVD) and radiotherapy for hodgkin's in 2001. Have you had any contact with the Leukaemia Foundation? I have attended a support group that they run for people living with lymphoma. They also run patient seminars on a range of topics related to blood cancers and treatment. They host a web based forum and telephone support groups too. They also provide printed resources on topics including Hodgkins, Chemo and Stem Cell Transplants. They have also developed a printed resource for young adults diagnosed with blood cancer. Peter Mac has a program for young adults. It is called OnTrac@PeterMac. They provide a range of services for young people affected by cancer and you don't need to be a Peter Mac patient to access some of their services. You can look them up on the Peter Mac Website. Canteen provides various support programs to young adults up to 25 years. And don't forget the cancer council. If you ring their helpline they will discuss the various support groups that they run including internet and telephone support services. The nurses on the helpline are very good shoulders to cry on on those more difficult, scarey days too. I hope that treatment is going well for you. Regards, Flight

[Alanahatz]

Thank you very much for the replies and Flight I wanted to let you know that out of all the doctors and nurses and people I have seen I have found your comment has by far given me what I was looking for, im not sure why its been so difficult for a doctor to tell me where I can find some help apart from 'google it' and ask the cancer council?I really appreciate your knowledge you passed on.

[flight]

Hi Alana, Hope this has been useful in some way. As a young person undergoing treatment it can be very difficult and frustrating trying to find information and support that is relevant to your own situation. I know how much it has meant to me to meet people closer to my own age who have undergone treatment. Cancer support that is specific to young adults is a fairly new concept in Australia as is the concept of survivorship. There are supports out there but there is still a long way to go. The Livestrong website (Lance Armstrong's cancer support organisation) has some terrific resources and supports for young adults too. Hope all is going well with you. Don't forget to send us an update on how you are going with treatment too. All the best, Flight