Introducing Mary

[Maryhadalittlel]

Hello, my name is Mary and i would like to introduce myself to you in the hope i can understand/share/deal with/conquer and eventually be able to be of assistance to others who have also been imposed of this parasite called 'cancer', my new partner in life. I was diagnosed with large B-Cell Lymphoma/Burkitt's Like Lymphoma in the bone marrow, in May of this year. I'm at the tail end of the chemo regime and have recently gone into remission. I can describe it as a bad dream and only now have i started to reach out, asking questions, looking to understand this topic in order for me to feel that i may be able to influence its path in the future after the chemo has brought me to this stage, saving my life really! I would dearly love to chat with others, particularly anyone with similar dianosis and others of course. At the moment, one of my side effects is extreme weakness in the legs which worries me. I'm hoping this is temporary of course, however as all this is new to me and wondering whether it's something i should let take its course or should be doing something about it. I have one more chemo session to go in a couple of weeks to finish the course. Stem celling my bone marrow is an option my specialist is considering, has anyone had that done? I believe it's a very painful experience. I look forward to chatting to others going through/having gone through this gruelling exprience. Thank you, mary

[harker]

Hello Mary I have a bone marrow cancer too, multiple myeloma. I had stem cells 'harvested' as they say, but they are stored away in case I need them. I took longer than you to go into remission, ten months from diagnosis. After three different treatments for no result the wonder drug, Velcade, knocked it on the head. So the planned transplant was postponed indefinitely. Like you I didn't start to reach out until I was in remission. Can I make a suggestion? As you approach your last session of chemo, start to talk to your doctor and the ward staff about the change from patient to survivor. It's really important. It sounds like what you are starting to feel now, reaching out, etc, is the start to the post-treatment stage. It can be very strange being suddenly unplugged from the system (that you were entirely dependent on - 'saving my life really') if you aren't prepared for it. I wasn't, as there was a mix up with my last session - they rang and said don't come. That was it, I didn't have a debrief, not from my doctor or the hospital. So, I'd urge you to talk about this. Ther are some good things to read. The CC Victoria has a very good book 'Life after Cancer' which I'd recommend to anyone finishing treatment. There is a very good Four Corners episode from 2000 called 'Survivors' too. It's time for physics and chemistry to give way to emotions and stories. You're different and you have to live that. You'll want to go back to chemo, maybe. I did! It seemed a lot safer. But no, it has to be forward. I can't say more about stem cell transplanting, so I hope there is another post here that will give you a good contact. Cheers. H

[samex]

Hi guys, Harker that is the first time that I have actually had some of my thoughts and confusions communicated so well. I , too, had no debrief - just a hug from my oncology nurse and he, very kindly, said that he didn't want to see me again. I thought I was the only nutter who thought that it might be safer and more predictable being back on chemo after it was all over. The relief of course was enormous but the question of what do I do now was never addressed. Mary, my treatment (for bowel cancer) also made me very weak in general but ever so slowly the srength returned . Never quite as strong but I can go up stairs again! I am 18 months out of treatment. Take care, Samex

[Jules2]

Hiya Mary Seems that harker has addressed you very well. I just wanted to say hi and welcome. Julie

[Maryhadalittlel]

Thanx for your feedback Harker, Jules2 and Samex. I will look for the CC book you suggest Harker. I can't believe so many of my feelings/thoughts are confirmed/expressed by others.You certainly don't feel lonely belonging to this forum! Harker (or anyone else) can you describe the stem celling harvest procedure? My specialist told me that it is a very unpleasant and painful experience for the patient. He is planning to get another opinion as to whether i should have it done, even though initially that was the plan. He feels that i have done so well that it may not be necessary etc. I went into remission within 3mths. I look forward to your feedback once again, Maryhadalittlelamb

[harker]

Hi again Mary The collection of stem cells, which is as far as I got, involves detouring your blood out of one arm, through a machine and back into the other arm. The cells are collected inside the machine. I had several days of self-administered injections that stimulated various aspects of blood cells before I started and on the morning of each collection. In my case it took five consecutive days to collect enough cells for two transplants. I had a briefing visit to the hospital before the collection started. I found the staff very good. A nurse sat with me all the time (four hours each day for five days) so I felt very supported. It was not painful. I was sore on the first day, that's all. So don't fret. As I said earlier, I haven't had the transplant part and don't expect to unless/until I relapse. I'm in remission at the moment, so it's not on my mind. But it is nice to know there are healthy cells stored away for a rainy day. H

[Maryhadalittlel]

And may you never need to have the transplant, Harker, but it's an 'insurance' for a rainy day as you say. I'm inclined to try and convince my specialist that i should go ahead with the stem celling, thanks for the reply. I still can't help feeling as though i need to be doing something (after my last chemo session finishes next week) I have made an appt with my naturopath and i'm expecting a list of 'don'ts' with regards to food and i guess i will go home with some concoction she will prepare. I'm not sure how prepared i am to make dramatic changes to my diet, as it is i don't drink, smoke and generally eat pretty healthily, not too much take away etc. I am a foodie and tend to make everything from scratch, i don't use pre prepared ingredients i.e. stock, sauces etc, and my parents have a vegie garden so i always have organic vegies to use. I say this particularly as my specialist and nurses keep telling me there is no evidence that alternative therapies make a difference etc. I realise what is important is to do what i feel is best for me etc, i'd like to ask though, what are people doing after chemo? many thanks, maryhadalittlelamb

[harker]

...relaxing and letting the world go by, wherever possible... you have no need to change your diet...you are clearly aware of what good nutrition is..you don't have to do anything after chemo...I suspect this will be the hardest aspect for you to come to grips with... H

[flight]

Hi Mary, The Leukamia Foundation runs support groups for people who have been diagnosed with lymphoma. I have had treatment for Hodgkin's Lymphoma and I started going to their meetings this year. I am finding it very helpful. The group that I attend is in Victoria. The group is facilitated by Tania Cushion. Her background is in haematology nursing and she is the National Lymphoma Coordinator with the Leukaemia Foundation. The Lymphoma support group in Victoria is made up of people of various ages and have different types of lymphoma. The website for the Leukaemia Foundation is www.leukaemia.org.au and their contact telephone number is 1800 620 420.

[samex]

Mary - after your last treatment do something as extravavgant as you have the energy for. Since you are a foodie, if you feel like eating, have a nice lunch or have cocktails (or mocktails if you don't drink). Buy yourself a piece of celebratory jewellery! I found that the day I had my scan to clear me and the picc line removed was such an anti-climax as my husband just said "well glad that's over" and we went home. Not his fault - he just didn't get it. I was hoping for something to mark the end of that time and the beginning of dealing with the next phase, but that never happened.One good friend did buy me a lovely book that I had been wanting. I didn't speak up for myself and have regretted it ever since. One day when I was having treatment, 2 women who were both finishing treatment for breast cancer that day, brought champagne, strawberries and cheese for everyone and hung beautiful butterfly mobiles from their treatment bags. It was wonderful and so very positive! Maybe celebrate is the wrong word , I'm not sure. But make it significant - you have survived an awful part of your life that none of us asked for but you endured it and made it to the other end. And if you feel like chocolate - eat it!! Samex