As you can tell we are on the count down now to finishing! Can't wait. The radiation itself hasn't been too bad or difficult in itself - its just the tiredness that it leaves behind that has been the hardest to deal with really. Erik hasn't had any skin burns or problems or any diarrhea or tummy problems that they said he might get - so I think we have been really lucky. The Radiotherapist gave him some steroids to take at the beginning of week 4 and he has been taking those which have provided a lot of relief in terms of reducing the swelling of and around the tumour in the sacrum - and that has made things very bearable for him. He sleeps really well through the night now - although he was barely getting 2 - 3 hrs on average when we first started - so we have come a long way on this journey. Once this is over its time to concentrate on selling the house and finding somewhere smaller to live - and then working out where we will go for a holiday (not too expensive or flash but a break nevertheless!). I'm finding that planning ahead up to 3 months at a time is something I/we can do - any further than that and it becomes just too hard. This journey thus far has taken its toll on me in that I have had to increase the amount and type/s of anti depressant meds I now take and have regular counselling sessions (provided for free initally through my Employee Assistant Program at my work). With all of these supports in place it is still a huge struggle to adjust as a carer and when people say to me I don't know how you do it - I couldn't if it was me - I say to them you just do it because you have to do it - you don't have any choice and you put one foot in front of the other and just keep going really... there's no other words to describe it than that.. ... View more

And haven't we come a long way in the last 3 weeks! Erik has gone from sleeping 2 - 3 hrs per night to getting the pain management sorted out and sleeping up to 10 hrs at night! What a contrast. We have changed his meds twice in an effort to stop a stuttering that has developed as a side effect to one of the meds. We still don't know which one - but suspect the Lyrica. He is starting to feel quite tired regardless of whether or not he has had a full nights sleep and is realising his limitations now at last. We finally got to see the pain management specialist for the 1st time this occurrence - who advises the pain is caused not from the cancer (what the oncologist told us to!) but from previous surgeries to remove previous tumours in the sacrum. There are damaged nerves and degenerated spinal bone tissue that is causing the pain! It just happened to be cooincidental that the pain started once we found out Erik had cancer! This journey is becoming clearer as we progress. I am hoping that he will become pain free and regain his energy at some stage after the radiation has finished so that we can share some 'normal' time together again to, before the lungs start to show symptoms. Hopefully they won't - I can live in eternal hope can't I. ... View more

Two days ago Erik had his usual radiotherapy session followed by an appointment with the Radiotherapist. After discussion it was decided to change some of his meds to find out which one is making him stutter really badly (so much that he can't string a sentence together and has to have time off work). It was decided to change the Tramadol and it was to be substituted with Fentanyl patches instead. As hubbys carer I asked when it was safe to administer the new patch and was advised if Erik had his last lot of Tramadol in the morning - then putting the Fentanyl patch on last thing before he goes to bed in the evening there would not be a problem. I put the patch on at 11pm and we went to bed. During the night Erik was really restless and talking a lot in his sleep which I began to realise in the morning had been hallucinations. I then tried to wake him next morning to get ready to go the radio appointment and couldn't rouse him. When I did manage to get him sitting on the side of the bed, he tried to have a drink but couldn't put the cup to his mouth - he oouldn't find his mouth! I realised then it was something more serious and my gut instinct told me to take the patch off him as that was the only thing that was different to normal. I then phoned the Cancer Radiation Clinic and spoke to the Nurse there. She suggested I keep a very close eye on him in case he fitted or convulsed. By this time I was getting really worried and nervous and she advised if in any doubt dial 000 which I did. Hubby was taken to ED and given 2 x doses of Narcan (given to Heroin overdose patients) and allowed to go home 6 hours later. The ambo made the comment he had only had to administer the Narcan type drug twice and both cases had been like ours - for a Fentanyl patch that had overdosed a patient. Fast forwarding to the next day (today) hubby is lucid and appears to be ok but is really struggling with short term (past few days) memory loss, and is overwhelmingly tired. This is probably to be expected I guess given that he is going through a course of radiotherapy as well as getting over the events of yesterday. Even doctors can mistakenly get it wrong - and hopefully anyone else out there using Fentanyl patches can be aware of how lethal they actually can be. A very frightening experience - thats for sure. ... View more