Hi Gee Gee I'm glad to hear that Daz is on the improve. We are doing ok now that we got over the initial 'shock to our system' that was radiotherapy. It made the cancer very real for us actually turning up at Radio appointments. Erik now has the pain under control finally and is sleeping a whole lot better which makes so much difference (when he hasnt been sleeping!) and of course I'm sleeping better because he is to. He is two weeks into the six week program today and is going really well I'm so pleased to say, but I'm not going to get ahead of myself and we will continue to take it day by day. I have some help from my daughters taking him to his radio appointments which is relieving the load for me a little and helping me to be able to go straight to work rather than detouring via the radio sessions each day - as I still work full time. Erik isn't managing to get to the office as often as he could but he is fortunate in that he can work partially from home online - so hasn't missed out on too much. I hope your health problems settle down and Daz continues on the path to improving like he is.. keep in touch. Til next time Jodii 🙂 ... View more

Hi NickB - Hopefully you still come onto this site as it was quite a few months ago that you posted. If you are still seeking information from others who have been through similar experiences as yourself - there are lots of people out there on an international facebook site called 'Chondrosarcoma Support Group'. I am on there as my husband has been diagnosed with his 4th episode of CS in his sacrum (tailbone) and it cannot be operated on or cured this time. There are people on this site from the US, Australia, UK, Europe, Ireland etc that all have chondrosarcoma in various area's throughout their bodies and can give advice on what worked for them etc. Where in Australia are you? We are in Perth. Good luck and hope things have gone well for you since you last posted here. Jodii ... View more

Hi Gee Gee - how is Daz doing this week. Is he still really exhausted and grumpy or is he showing signs of improvement, AND how are you going to ? Thinking of you. Jodii ... View more

My husband Erik was the same as you Pim in that when he got diagnosed in Sept last year - in that he was well and showing no symptoms whatsoever and felt like a fraud. Our initial response was to get ourselves into a panicked state at the 'not knowing' and 'uncertainty' of it all. Then we had some counselling through the Cancer Council. The Counsellor helped us to realise that everyone lives with uncertainty in their lives every day. Any one of us could get hit by a bus crossing the road at any time and die. The only difference is we happen to know what the time bomb inside us is thats ticking and perhaps we get given a heads up to make the most of what we have and an opportunity to live each day to the fullest that we possibly can. My husband may have 2 - 5 years (worst case scenario) or he may have 5 - 10 years and beyond (best case scenario) - we honestly have no idea. The cancer that Erik has is slow growing and stable right now but at the next scan it may have turned agressive and become fast growing - we just don't know. I initially wanted to spend all of our available funds on going on trips and travelling (like we had planned to do in our retirement). Erik in his infinite wisdom said to me - what if I live for 10 years or more and we blow all our money right now on trips and have nothing much to live on 10 years down the track. He is right - so we continue to work, plan trips and implement plans to simplify our life so that we can enjoy it to its fullest and live each day as if its our last. It is a huge headspin to think that you time is almost up or may be - and takes some coming to terms with - all of us in our own individual ways...Good luck ... View more

Hi Gee Gee So sorry to hear that Daz is still having problems with fatigue. I can very much relate as Erik (my hubby) is 1 week and 2 days into his six weeks of Radio and is exhausted and getting quite fed up with being so damn tired all the time !!! From what I understand this is just the beginning for him !! I hope Daz improves soon - is he eating ok or does he have no appetite? Sorry if I'm asking dumb questions I'm so new to this I have a million and one questions at times... I hope the positive outweighs the negatives for you also. Its such a guessing game this damn cancer journey for all of us in so many different ways.... Take care.. Jodii ... View more

Well we are 1 week and two days into a six week radiotherapy course currently trying to shrink the tumour in Eriks sacrum. He is finding all of a sudden the extreme tiredness the most difficult thing to deal with. The pain (which I would have thought might have been the most difficult) is secondary to the tiredness and fatigue that Erik is suffering from right now. Yesterday one of our daughters who is 21 years old took him to Radio, in an effort to help me out as I still work full time and take him before I go to work and drop him at work after his appointment. It was a huge help to me and great to be able to just go to work like I normally do - things we so often take for granted. I asked my daughter last night how she went (as she doesn't live at home anymore) and she advised me that she knew I'd been doing it tough watching Erik in pain and with side effects from the meds but the reality was that by taking him to his appointment she got a look first hand at what is was REALLY like and was knocked for six. She went on to say that while she found it very confronting she was still going to take him to his appointment once a week, but the reality of the diagnosis was difficult. I am so glad that she went with him and had the opportunity to see first hand, and next week another daughter is going to do the same thing and see for herself. It has been a really valuable experience and life lesson for Miss 21 and I am so proud of the way she has coped with and taken it in her stride. This journey is not easy but if we can share the load amongst family members it has to make it a tad more bearable..... ... View more

Wow Paul - you sound incredibly brave and focussed and I commend you for that. I think we need to be when we're dealing with any type of cancer really - face it head on! I share your frustration in that although your cancer is different to my husbands - they both do not have a lot of treatment options available to fight them by the sound of it - and when I hear of media reporting fundraising for breast cancer and bowel cancers I sometimes find myself wishing that the type of cancer we are dealing with was more common - and thus had more options to fight it with. Good luck with the fight and keep talking and sharing as even though we have different types of cancer to contend with we also share lots of similarities and frustrations to by the sound of it. Cheers Jodii ... View more

Thanks so much Greg and De for your reply. Hubby's name is Erik - sorry I forget to introduce both of us sometimes!! Erik is going to see a Remedial Massage Therapist this week in an effort to assist in relieving the pain he is dealing with currently. This lady specialises in Myofascial release, craniosacral and polarity therapies - which to me sound like alternative types of treatment but apparently are not - and having discussed his situation with her extensively - she seems to think she can assist - so we are trying that as well as drugs to ease his pain. Apparently this particular bone cancer can be incredibly painful (and there aren't always explanations as to why this is so). Anyway if we can ease Eriks current pain and manage that so he can at least sleep well - then we can get through the radiotherapy and move forward. Apart from this one area of constant chronic pain - he has no other symptoms from his lungs or elsewhere. It is hard to believe to look at him at times that there is anything wrong with him. He often said when he was first diagnosed last Sept that he felt like a fraud as there didn't appear to be anything wrong with him! It sounds like you are still not sure of the type of bone cancer in the pelvis - is that correct? Are you seeing an Orthopaedic Oncologist to get that diagnosed ?? Erik saw an Orthopaedic Oncologist in Perth for the first 3 occurrences and initially last year when this 4th episode appeared. I would be really interested in hearing more about what your oncology pharmacist recommends in regard to your lung tumours though - as this is a first for us dealing with cancer in the lungs this time round. Thanks so much for your advice and support and we will talk some more... xx ... View more