Hi Deejay it was two years since I wrote that post. The time off I had after resigning from work was very theraputic. Since then, after a years break, I have gone back to paid work, but find that I am almost back at that same place, in the same job. Over the ANZAC day weekend I saw a TV segment about a young soldier who had returned from overseas after being in a bomb accident. He looked OK on the TV, hadn't been physically injured, but was discussing post traumatic stress syndrome. He and his wife said that they knew something was wrong, he described how he felt one day when his four year old todler would not put her toys away, he felt an unreasonable anger/frustration. After seeking help and resolving the problem, he said that he was now employed by the Defence forces to encourage other soldiers who were in the same mental state to seek help, a positive step for more than one person. I can relate to the feelings that this bloke felt. Not coping at odd times (most of the time OK), feeling angry at small irritating things, especially when people are rude or disrespectful (not necessarily to me). Going over stuff in your mind when you don't need to. I wonder if there is the cancer survivors' equivalent to post traumatic stress? Got any thoughts to add? What helps you get through all this stuff? cheers ... View more

Hey Joy Honey, Do it! I was a motorcycle instructor in the late eighties and early nineties and taught more than a thousand riders in the compulsory Learners courses (and beyond) in Canberra and Sydney for a company aptly named Stay Upright. I found it very rewarding and had a ball! It was great to see such a diverse bunch of people learn to ride a bike in about nine hours. Everyone enjoyed it! The oldest person I taught was well into retirement age so don't think you are too old. If you get taught a good riding system it really points you in the right direction for riding on the road. The only thing I would say is that you need to be able to ride a pedal bike and balance before you ride a motor cycle. cheers John ... View more

Well, its one of the hardest things I have had to do, but I have handed in my notice.  I work with some lovely and dedicated people in a demanding environment.  My work mates have been very supportive and understanding.  There are a lot of emotional ties there. In the past few years I have found it difficult to get into the self help stuff, so I haven't made it part of my life.  More than twenty years ago I used to be able to meditate and quiet the mind down but haven't been able to do this again when I have needed it.  The brain is going too fast.  I have decided to go to one of these mind body medicine workshops and see what I can get out of it. ... View more

I hope your first day went well Lisa. The flexibility in work sounds good.  I have had a very supportive workplace as well, its good when your colleagues can be your supporters as well. As for GVHD, my donor was a complete match, but I still got GVHD, so there's no telling is there?  I was told that GVHD can crop up anytime in the years following even if you don't get it straight away.  I am on Cyclosporin too, recently down to 75 twice a day, also on another anti rejection drug based on mycofenolate.  I find that the cyclo makes me feel spewy sometimes.  I just had my immunisations for twelve months, it set the local surgery record for the most number of immunisations at the same time.  Unfortunately they only gave me three jelly snakes for seven shots, kids get a better deal on a one for one basis.  Look after yourself, John ... View more

Hi Margo I recently went to a cancer council relay for life event.  That helps puts things in perspective as a survivor, and helped me move along a bit as a survivor.  I found it too easy to shove stuff under the carpet and not deal with it, as people are uneasy about talking about cancer experiences at work etc.  At the relay for life event you are there with a whole lot of other survivors and do the first lap of honour for the relay and then have an afternoon tea to meet some other survivors. John ... View more

Hi Second Chance and Jenny I forgot to add in my previous post that I had lots of  problems with my mouth being dry after I left hospital.  I had a mouth rinse in hosptial called Biotine which has enzymes in it to help keep the balance right in your mouth and gums.  Trouble is, I went through a stage of nausea and vomiting and I now associate the mouth wash with chucking, so if it even gets in my mouth I gag.  However, they also make a toothpaste that I use, that tastes a lot better.  Its expensive ($14 for 125g) but seems to do a good job.  I tried the biotine dry mouth moisturising liquid but it did not work for me.  Maybe this stuff may help you? For some months I used to suck on lollies, I liked the no sugar ones available from Big W.  Now I can't stand them!  But I wouldn't go anyware without them before. I still have a dry mouth and find it hard to eat something like a nice steak, as I can't work up a good spit.  I carry a bottle of water (rainwater - no chlorine) where ever I go to keep my mouth moist, it seems to work better than sprays. Recently I went to a Patrea King live-in workshop and we drank juiced vegis twice a day and heaps of vegitarian food.  These workshops have a real emphasis on good 'live' food like fruit and veg.  The workshop I went to didn't really cover sessions on food very much, but I think the cancer workshops might.  I looked at the Ian Gawler workshops but they were so far away and going to the southern highlands was closer for me.  From the reading I did the Ian Gawler workshops have much more of an emphasis on food. Anyway, some of the reading I have been doing lately has been emphasising getting nutrients from fresh food into the diet.  I have started juicing up fruit and veg and drinking it straight away before it starts oxidising.  I am hoping that going to a more healty diet is going to help silence those cancer producing genes and unsilence those tumor attacking genes in my body.  Part of the diet is eating more fish (for omega 3), white meat, vegitarian meals, uncooked nuts and less red meat (I have iron overload from blood transfusions so I don't need the iron).  I used to eat tons of red meat (we farm grass fed beef on our farm). cheers John ... View more

Hi, something I'd add from my own experience is that: 1.  cracked lips can be a sign of dehydration 2. if it gets bad,  it helps to keep a diary of how much you are drinking.  Sounds like a drag but it does help being aware of how much you drink. 3. I found that the taste thing affected everything.  I could not drink the water in the hospital as it tasted terribly of chlorine, and I am used to drinking rainwater (no mains water where I live).  I drank bottled water, or water that had sat in a jug at room temp for at least 24hrs, or some of the schweppes fancy fruit fizzy drinks mixed 50:50 with water.  ... View more

Classification can be confusing, and one thing I found was that it was hard to get specialists/haematologists to give a definite classification.  It surprised me that the blood cancer I have was, until relatively recently, not considered by some international experts to be a cancer, even though it can progress to acute luekemia.  Myelodysplastic Syndrome, MDS, has been has had its international classification and staging system changed/reviewed in the recent past.  Depending on the age of the haematologist the way they speak about the disease seems to be different, even thought the treatment might be similar.  It can be classified depending on prognosis or chromosomal information. It seems that things are not always black and white with blood cancers, and classification is based on the information available, which changes over time as research continues.  MDS seems to be a collection of diseases, not just one disease.  Some MDSs are very like Aplastic Anaemia, some are atypical and don't fit into a category at all.  The treatment options can vary with your age and progression of the disease, and where you live (which country).   I know MDS is a different disease to NHL and HL, but if the experts are having these discussions about classification on an international level, I guess that feeds down to a national level, and our level.  At the end of the day I guess its the treatment you get that counts. ... View more

I didn't know there was a survivors forum until now.  I've been posting under general.  My interests are improving my health and life post treatment.  I have been in remission for a year now but still have issues related to graft versus host disease after my bone marrow transplant, so it would be good to hear from others in the same situation. ... View more