Ok - I've started this blog about six months into our current cancer journey, and Erik (my husband) is one week into a six week session of radiotherapy on a small chondrosarcoma located in his sacrum. He also has mets in his lymph nodes and both lungs (extensively). His prognosis according to the medical profession is terminal - incurable and inoperable, and the plan is to manage the symptoms as they arise and make things as comfortable for him as possible. Prior to starting the radio, he has had on and off pain in his hip which he thinks is from this tumour - the oncologist doesn't necessarily agree that the pain is from the tumour - however Erik has had this tumour in this location 4 times (including this current episode - and thinks he knows the pain better than the oncologist!) Anyway the pain has been worst when he lays down to sleep (flat on his back in bed) so he hasn't been sleeping very well - so I think we've started behind the eight ball so to speak with the radio in terms of being sleep deprived before it even started!!! Just finished the first week of radio and Erik is battling with tiredness already. Today however, the oncologist has prescribed doubling his lyrica meds to try and manage the pain better and thus get more sleep. Stay tuned to find out how the new meds regime works out. Hopefully better for Erik and then both our sleep routines will improve and we will cope better than I am currently anyway. Erik remains very upbeat and positive and doesn't winge or moan about the pain and is accepting what is. I can't believe he even has cancer sometimes. He lifts my spirits when I am down yet he is the one with cancer! A truly inspirational man.
Occasional Contributor
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.....
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Occasional Contributor
It is hard to underestimate from the patient's view how important family contact becomes. I know that from my diagnosis everything became so much clearer and what was clear to me was how important family are. Other things like money / possessions just fade away. I would certainly recommend " sharing the weight " amongst immediate family and involving everyone. It is win-win situation. Good luck.
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