Hi Lindsay, I guess I am a bit like Sch, I don't resent it, in fact I am not that disappointed that it occurred (saying that now that I am 'well' again), don't get me wrong I never wanted it and for a long time hated and despised it(but never 'why me') but in the long run I think it produced a better person in me because of it.   What did I lose or encounter, my career (missed 6+ years of work), 17 years of my life, unending visits to GP's, specialists,  countless hospital visits and stays, obscene number of tests mixed in along the way with three major cancers, twice diagnosed as terminal, and a BMT transplant which incidentally was far harder to deal with (mentally and physically) than all the cancers put together.   Do I regret it, no, but for that I would not be here today. Still got plenty of 'legacy' issues, heart, kidneys, skin, hearing, lungs etc etc. Still very pleased to be here. It robbed me of many things a lot of them material but was made up for by the people I met, in and out of the cancer wards, many of who are no longer here. I am grateful for all of the care and love I received (and still receiving) in all these years. I still regularly see 4 different specialist and my ever so able and capable GP . Do I resent it emphatically no. ... View more

Hi Hiedsta, I read your posts (and Sch's) with interest, a lot of it resonated with me, there is a level of camaraderie with those people you meet with along the way, especially in the cancer wards. I always thought I was ill until I met all these other people who seem to be worse off than me, yes I was ill but they for the most part went stoically forward no matter what confronted them. I am pleased that you have taken the time to join our community, you will find an enormous amount of experience from people who have/are dealing with or been a part of through their friends and/or family. There is nothing like hearing first hand how to get through and deal with this insidious disease that affects so many people. Many of the stories are awe inspiring and assist you in dealing with all the issues that you will be confronted with. Right now you seem to be in a great place (mentally and physically), I can't emphasis strongly enough the support of family and friends is in going through this. I had my first brush with anal-rectal cancer (Non-Hodgkin Lymphoma) a number of years ago, like you six doses of chemo (individually intravenous) but no radiation at that time, left me pretty devastated and I was unable to work for 2.5 years. Did not want a colostomy bag at the time but was warned that it may occur, fortunately it did not. Many years of partial sigmoid's and colonoscopy's together with seemingly never ending biopsies.  Times are changing and the treatment regime and medications have improved enormously over the years and a positive outlook is imperative no matter the diagnosis. I hope your PET scans are all okay. Hospitals and Covid19 is a problem at the moment, hope it may have eased off in the next few weeks for you to have your scans. Fortunately we live fairly remotely north west of Sydney, no neighbors, no contact with anyone generally speaking. My GP has banned me from going anywhere and now I do my  GP & Specialists consultations by phone. Life's not that bad after all. ... View more

Hi Mimi-meme, I agree with Lolie, you need to speak to your hematologist asap. I was diagnosed with NHL in 2003 and received CHOP ( which is prior to the R-CHOP, but I did receive the R, at the time it was called rutaximab, a couple of years later), all that worked quite well until I relapsed a few years later with CLL, to stage 4. I was treated with FCR which eventually cured it but as Lolie stated increases the chance of further cancers which happened to me and in 2016 ended up with MDS (terminal, from the original CHOP) unless of course you have a bone marrow stem cell transplant, which I did in early 2017. Now cured. At the time I knew something was not right and just did not seem to recover, my blood number were always very low, I too thought I had relapsed with NHL or CLL. As to some of the symptoms, did not loose too much weight but had inordinate number of swollen lymph nodes (like tennis balls) neck, under arms, all through my body and compromised my kidney function, was neutropenic for several years (compromised immune system) and had many infections including fungal, lungs and sinuses as well as shingles. Many stays in hospital, no real bruising, had muscle/joint pain but they put that down to the medications. Bowels were a real problem for most of that period. Over the years I have received 70+ doses of chemo + whole body radiation, none of it was easy but in many cases is doable, its not all doom and gloom, be sure to open up to your doctors about all of these things you are noticing, keep some simple records to speak to your doctors about, have a friend or family member attend these consultations as I know you tend to forget or distracted by the changes in conversation, far too much for one person to take in. I always had a visit with my GP after the specialist to discuss all the stuff I did not understand or question why they were doing this or that. The swollen lymph nodes may be just a simple infection (had plenty of those instances). Go get checked out.   Did not quite follow did you have the stem cell transplant? I am post transplant 34 months and still recovering, very difficult procedure, for me mainly mentally as you are being as they say 'reborn'. Lots of complications, very long stay in hospital, changed blood type, had to 'redo' all of my immunization shots again, quite a few 'legacy' items still trying to resolve but still here. Let us know how you get on. ... View more

Hi Traci-Renee, Well the important thing is that he (you both) got through it and that is good news. It was a big operation and I am sure the Dr's did as best they could, hope is not yet lost.   Yes 22 years is a very long time, especially now a days, congratulations you both deserve it especially after being tested so severely with these current matters. ... View more

Hi Traci-Renee, Just touching base, how, did the operation go with your husband yesterday? Pretty tough and long day I suspect. Take care. ... View more

Hi Tracey-Renee, I truly hope all goes well with the operation, I have never heard of it so I did a quick google and the results could be quite promising, hope is all we can look forward to sometimes that and the wonderful medical teams we have looking after us. Waiting after these operations for any kind of result is more difficult than waiting for them so I will be thinking of you and your husband.   You have a right to be scared, I know I always was, well still am actually but I look at things differently now. I was 50 when my first cancer materialised, quite a long time ago now, same as you three children, I worried constantly about leaving them. It was very hard on everyone but we coped somehow, probably very much like you minute by minute.    We coped, you will cope with it all to, step forward to meet the challenge, there is nothing you can do, let the Dr's do their magic.   p.s. my wife knows she is loved, I tell her every day   p.p.s when I was working (retired last year) I would kiss her goodbye in the morning and tell her I loved her (she was asleep) but she knew that they may have been my last words if I did not return, it always comforted her and me to know that it was said. ... View more

Hi Noreen, Yes I had a bone marrow stem cell transplant, it was the culmination of several blood and other cancers, it was the only cure available, and (thankfully) it worked.   But I am not any different from all the other posts, we have had or are with someone who has had 'cancer' it's a very difficult subject to get your head around, as soon as you hear the word the first time (it actually get easier when you hear it again, and again, I hope no one ever does) but it sends you into another dimension.   Enmeshed in a 'medical' world, our vocabulary changes, our perspectives change, priority changes. It changes everything, you can never be 'normal' again. But you end up with a new normal, generally with a different perspective on life (and death). I don't regret it but accept it, it's part of life, not what I wanted but there it is warts and all.   My new normal has taken a bit of damage, some is fixable a lot is not but I am what I am. You too have sustained a bit as well and hopefully your new normal is working fine for your 'new' you. ... View more

Thank you Traci-Renee, Thank you for your kind words, I am just a man who has a bit of a bad run with cancer.   My wife and I have gone through this together I saw the pain in her face when the news was very dire, I knew she tried to act 'strong' (for me) when they said there was no real help. She has been through this every step of the way and has felt the pain, frustration and the seemingly never ending consultations when the prognosis was worse that before. We talked, made plans (not for me) but after me. It was so difficult, but had to be done.   But now I am well again, cancer free, we talk about it, it seems to crop up in so many conversations, I am happy to talk about it, it was such a huge part of our lives. BUT sometimes I call a halt to it, I just can't talk about it anymore, it can be far too upsetting.   I hope you are able to forgive your husband, perhaps it was not 'him' who said those things. Those sorts of comments that hurt us tend to dwell in our conscious and may be there for a very long time.   I am looking forward to a great 2020 year (illness free), I hope you have the same. ... View more

Well I sit here rather chastened, I too was 'mean' (her words not mine) to my adoring wife who has suffered me for many years caring for me during these 'illnesses'. It was during my first cancer (colon-rectal) and I too was on steroids, she says that I was mean to her, but doesn't really elaborate, lots of complications, I have apologised many times and it has not occurred again, even though I was on steroids again during my third or forth occasion.  With the first one I'd lost my job (career) so I guess the only people I saw were Dr's no work colleagues, no feed back. I know I was in deep depression, we had many issues to contend with, nothing went easily for us. We bonded more deeply than I can explain.   Many of the events that happened over the preceding years are in a 'chemo fog' and I just don't remember them, but we are exceptionally close and discuss everything in great detail (through the subsequent cancers) and including my physical, mental and emotional state (even now, 18 years later).   Loved her then and love her more now.   She's playing on her tablet in the other room, I think I will go and tell her I love her yet again today. ... View more

Hi sch, That's a great website, very informative but don't get me wrong I would never advocate having routine scans especially if you are a healthy person, they can be dangerous, I hope that exposure to radiation by Dr's wanting scans is justified and used minimally which I believe to be true in the hopefully the majority of cases. In my case I was very ill for many years with some very significant complications, I knew the risks but took them (signed off by me) in the hope that I would receive a better outcome, so far I have but I am well aware of the consequences and in fact unfortunately still 'waiting' for them, those thoughts never leave me.   I would never of had so many and so many different tests unless my DR's (and I) thought they would help, I don't want to do any more tests or take any medications but what I want and what is required don't seem to lineup. I actually find my (now seldom) visits to hospitals very difficult to deal with (the smells, noises, the sick people) the whole process left me traumatised (the foundation of my PTSD) I don't regret it, it was what it was without all of that 'stuff' I would have passed away quite a few years ago (and more than once if such a thing was possible).   I always thought that I was a 'well informed' patient I usually researched all of the drugs, procedures and even the types of machines they used. I always (when able to) quizzed them (medical & nursing) staff as to what and why they were giving it to me, one episode involved insulin, which I did not take ( I am not diabetic) .   After each hospital visit I visited my GP and discussed as many aspects that I could remember to ensure that I knew as best as possible what was recommended.   Colin81 ... View more