topic Re: Introducing Mary in Living with cancer

Introducing Mary

Maryhadalittlel — Tue, 08 Sep 2009 00:45:44 GMT

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

Re: Introducing Mary

harker — Tue, 08 Sep 2009 03:01:08 GMT

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

Re: Introducing Mary

samex — Tue, 08 Sep 2009 09:36:56 GMT

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

Re: Introducing Mary

Jules2 — Tue, 08 Sep 2009 10:15:42 GMT

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

Re: Introducing Mary

Maryhadalittlel — Thu, 17 Sep 2009 11:11:44 GMT

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

Re: Introducing Mary

harker — Thu, 17 Sep 2009 11:43:17 GMT

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

Re: Introducing Mary

Maryhadalittlel — Thu, 17 Sep 2009 11:59:13 GMT

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

Re: Introducing Mary

harker — Thu, 17 Sep 2009 12:23:19 GMT

...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

Re: Introducing Mary

flight — Fri, 18 Sep 2009 09:29:05 GMT

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.

Re: Introducing Mary

samex — Fri, 18 Sep 2009 12:01:07 GMT

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

Re: Introducing Mary

craftyone — Mon, 21 Sep 2009 05:54:54 GMT

Hi Mary, Glad to hear that you are nearly finished. My "finishing off" was just to be told that I didn't have to go back the next day and my smile said it all!! I didn't celebrate, as I had a large operation looming ahead once I was "well" enough, or fit enough. Then, after the operation was successful, I once again wasn't "well" enough to enjoy it, other than "what's the next step?" which was another round of chemo. That was in 200. I now celebrate every day that I am still here to annoy everyone. Enjoy each day as much as poss, plan for the future, but a small step at a time. Surround yourself with good friends, and don't take any "rubbish" from people - not yet, anyway, that comes way down the track. Find a nice place to go to and enjoy it. Craftyone

Re: Introducing Mary

ex-athlete — Sat, 03 Oct 2009 16:36:07 GMT

Hi Mary - I had three sessions [ of 3 hours] on 3 successive days for a Stem Cell Extraction at Peter Mac in Dec 2007. I was quite unaware it was happening - and certainly had no ill effects whatsoever. They collected some 13 Million bone marrow cells for the freezer. Apparently the freezing kills off any "Mantle Cell Lymphoma" that may also be extracted. The only effects that I noticed was when the 8 bags of yellow fluid were returned to me [ via an "arrow line" direct into my neck jugular vein] during my live-in 4 weeks at Peter Mac was that for 24 hours my legs ached - actually it was an aching in the leg bones - just nagging but certainly nothing to require pain killers/nurofen. The nurse explained this was normal and was the successful process of the bone marrow stem cells re-entering the bone marrow and was what was intended to happen. It wasnt painful - it just felt the same as if I had had a hard race from my aths days [ eg 20 kn / 20 miles hard race] ... nothing to worry about but leg bones just sort of aching with tiredness. As mentioned on my blog - yesterday I RAN 30Km [18 miles] on a circuit I use in Blackburn [Melb] - whereas in Dec 2007 I could only walk 100 meters or so before wanting to sit down on a chair ! I attribute my progress to walking EVERY DAY WITHOUT FAIL in 2008- to get back leg muscle tone after months of inactivity, to a point of my New Year resolution 2009 of RUNNING [ until March 09 when by wife & I had 5 months o/seas touring Europe/UK / Ireland etc. when there simply was not the oppurtunity at the end of the day on on bus tour groups to run - but we certainly made up for it with loads of daily walking sightseeing. Having returned to Melb in August - I have rapidly regained running fitness to do yesterdays 30 km - aqlthough the last 5 km was a real struggleto get back home !

Re: Introducing Mary

ex-athlete — Sat, 03 Oct 2009 17:06:54 GMT

On a further point - I absolutely understand your current feelings of feebleness of legs. I recall one day - about February 2008, my wife & I went for one of our many drives - and ended up at the beach at Edithvale [or somewhere there] and walking out to the end of the pier. Having got to the end just to take in the sights, I looked back to the car parked way over on Beach Road and I really wondered "how" was going to walk myself back to it ... at that stage 400-500 metres was tough going !~ Reminiscences like this are now just a fading memory. Pre-diagnosis, in 2007 - I knew I wasnt well but why?? What was wrong with me ?? Why was I having difficulty walking [particularly up hills] with my wife on our weekend walks through the Blackburn Creeklands. That whole chapter on my life of 6 months of chemo,PICC Lines, etc, is now behind me. Only a few months ago we walked some 14 km on a circuit around Paris. My wife was having trouble keeping up with me. Life has moved on, - having used 15 months of Sick Leave and am currently enjoying 10 months of Long Service Leave before we both return to work in January 2010. I never for a moment expected to be well enough to return to work back in 2007/ early 08. I hope the above is not too boring but is intended to give you "encouragement and hope" from someone who has been there and "done that" and moved on and back to a normal lifestyle.

Re: Introducing Mary

ex-athlete — Sat, 03 Oct 2009 17:42:35 GMT

At the risk of boring you further - I recall OCT 2008 I went to a Sunday conference in the city... and decided to walk some of the way home. Although I had a tram ticket in my pocket [ my security blanket !] - I let the various trams pass me by and just kept walking on this rather hot afternoon. As the afternoon progressed, I got to the point where I was not going to weaken and take a tram - ... until I got to a point that Box Hill was in sight - and finally, after some 6 hours had walked home, sunburnt and quite blistered feet [ being only in unsuitable street shoes]. For me, it was a HUGE milestone - as I knew then that I would be well enough for us to do our planned o/seas trip in 2009. I rember rejoycing - " Hey - I'm back!!" 🙂 - and had moved on from the Mantle Cell Lympohoma WEB page that still implies usualy deceased within 3 years. None of us knows whats ahead of us - nor if it comes back to bite me again - but for the present, I'm absolutely determined [baring injury] to run the 2010 marathon. Certainly a bone marrow stem cell transplant had worked for my metabolism. My advice to you is to "walk-walk-walk" yourself back to good health. 🙂

Re: Introducing Mary

Sun, 04 Oct 2009 00:34:12 GMT

Hi Mary, I can understand how you are feeling at the moment. I am coming up to 4yrs since my breast cancer diagnosis. I am due for my Mammogram and Ultrasound this week, I am quietly confident that it will be "all clear". Whilst undergoing treatment, you feel that you are taken an active part in defeating your cancer. All my determination was geared towards getting through treatment and then afterwoods I felt like I was set adrift. My time was free from the commitments of treatment. I asked my specialist what should I be doing now... he said "live your life", which sounds easy but I was a changed person and I was a little puzzled where to start. Then all the questions started appearing in my mind, what caused the cancer.. was it diet... was it stress.. was it environment. I was driving myself to distraction trying to find the answers, becoming more stressed. Personally, I had to let go of the question of "why" and now I am concentrating on recovering my enjoyment of life. Please know I am not telling you what to do, I am just describing what is working for me. We each have our own personal road to take. I suggest allocating time for things you enjoyed before cancer, to regain your spirit. I went back to dancing...slower dancing than before... but music and movement lifted my spirit. Be aware of not pushing yourself and your body, listen to your body, you will know by the aches and pains whether you have been kind to yourself. It is true, once you have gone thru cancer, your world and perspective changes. You will gain much insight and knowledge from this website, absorb the knowledge and make the choices appropriate for you. I can't comment on your type of cancer as far as treatment is concerned, the other comments you received covered it very well. I wish you a gentle journey and would be happy to hear of your progress along the way.