December 2015
Wow here I have come back onto the forum today to look for help in very similar circumstances to you both. The only difference is my husband is not in remission but his condition is classified as stable and he still works and it doesn't seem to affect him very much on a daily basis. I wonder sometimes if its all in my head. We live from scan to scan - with the next one due in January 2016. I feel so damn insecure (because I know I will lose him one day) and so needy and teary most of the time. This year I have been a mental wreck and I really do want to make 2016 a better year in that respect and to enjoy the time I have with him. I have had counselling and we are having couple counselling but I think I need to pursue my own counselling to work through this by the sound of it. Does anyone know of any support groups that assist with this type of anticipatory grief (I think thats what its called...)??
Thanks in advance.
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March 2015
Oh Gee Gee I'm so sorry to hear that Daz is still not doing to well. Are the headaches related to his cancer or his radiation treatment ? Do they know why he is getting them ?
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March 2015
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..
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March 2015
Hi Janey Are you able to contact the Cancer Council and ask for some counselling to help you. We did that and the Counsellor that they assigned to us was brilliant and really helped us get through and I'm sure will be some benefit for you as well. The Cancer Council provides 6 sessions for free and are absolutely wonderful.
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March 2015
Hi Janey - I'm reasonably new to all of this to and as the carer of my husband who has incurable and inoperable cancer I can very much relate to what you are saying. It can be very lonely - especially when you come across people who don't know what to say to you or feel uncomfortable talking about it. I personally am a talker and if people want to know anything I'm happy to talk to them about it - my grown up children have difficulty talking too much about my husbands cancer tho and I have had people just not talk to me at work as they don't know how to deal with it. Find sites such as this and find friends or people who are supportive and bypass those who aren't. I struggled in the early stages after learning Eriks cancer was back with wanting to speak to others in the same situation - however the type of cancer Erik has is quite rare and through counselling and the lapsing of time I have gotten used to the fact that I may not ever speak to anyone who is experiencing the same as what we are going through. We are currently at the end of 6 weeks of radiation therapy and both of us have continued to try to work (full time) as much as we are able to during that time - and I think we've gone ok. Keep talking on here and send me a friend request - I'm happy to chat with you. Good luck xx
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February 2015
Thanks Gee Gee and Susy for your comments. We did check with the Radiotherapist about when it would be safe for him to have the Fentanyl and she specifically told us putting the patch on last thing in the evening having had the last dose of Tramadol in the morning - it would be safe and alright. But yes it was a huge lesson to be learnt and a hard way to do it. He seems to be going well now though.
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February 2015
Thanks Susy - yes now that he is getting better sleep I'm finding I'm sleeping a whole lot better to and coping a bit better as a result.
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February 2015
Hi Susy - So sorry to hear about your husbands diagnosis. My husband Erik was diagnosed in August to with terminal bone cancer (chondrosarcoma) in the sacrum and its spread extensively to both lungs and lymph nodes also. We've been told its inoperable and incurable and to manage it as best we can. He is currently having radiotherapy on the tumour in his sacrum to reduce its size (hopefully) and reduce his pain and is half way through a six week course of that. We saw a wonderful counsellor provided through the Cancer Council of WA who helped the both of us immensley in those early weeks to come to terms with the initial diagnosis. I understand though when you say your feel so lonely. In those early weeks I wanted desperately to speak to others who had the same cancer as my husband to compare notes and dare I say find out if maybe there was in fact some hope of cure or long term survival. I located an international facebook support group for Chondrosarcoma patients and their families which has been a source of much information, advice and support to me. As time has passed we manage some semblance of the 'new normal' in our lives and continue to put one foot in front of the other and keep going and try to make the most of each day (thats becoming a very well worn cliche now!). I'm happy to talk whenever I'm online (I'm here every couple of days at least). Where do you live ? I'm in Perth. Feel free to add me as a friend if you would like. Good luck
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February 2015
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.
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February 2015
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.
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