This week.....patience and questions

[purpleangels]

So- we are waiting to hear back from Prof about treatment options.....maybe nothing, maybe more surgery? But our main goal is still pain management. Why does he get pain? Why does it last so long somedays and others it responds to medication? Why is Panamax sometimes the most effective pain medicine? Why is it that sometimes it doesn't work at all? Why does it keep him in bed for days at a time? Why can't he always feel good? What is the cause of the pain? These questions just keep going round and round and round. It could be the tumour, it could be adhesions, it may last another year, it may last another 20 years........on an on an on...... But when he is good he is very very good- but when he is bad he is rotten! How do we explain to our two and four year old what is going on? Do they already know? Do they understand? We just seem to be waiting....and don't even understand what it is we are waiting for. Ah well! Patience is a virtue so I am told! And the saga continues to unfold.................

[Jules2]

Hi Purpleangel You sound like you are having a tough time at the moment! Regarding your children, have you been in contact with a social worker from your hospital or perhaps someone from the cancer council? There is help out there and it would at least give you some support and backup with the children. Julie

[Sailor]

Hi Purpleangel Have you asked to see a pain specialist? It would be a good idea even if only to get a better idea of pain, how it responds and how you can manage it. Paracetamol (Panamax) is a very good pain medication. As explained to me by my surgeon many years ago, it is important to take it regularly rather than waiting for the pain to come. The aim is to keep the pain from breaking through. The way he told me to take it was a bit different to what they say on the packet, so ask a pain specialist. In my case I was also prescribed anti-inflammatories as apparently they work together with the paracetamol. Certainly they did in my case. There may be other pain med's that you can be prescribed. It is not a metter of waiting to find out what causes the pain- it is important to get the pain under control and then find out what else is happening. Regards sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody

[purpleangels]

Thankyou to Julie and Sailor- I have followed up with the social worker and am hoping to meet up with other families in a similar situation......although confronting a bit, I am sure that we have loads in common! Also, Bob has been intouch with his palliative care cnc to ask about upping his oxycontin dose again- although he is at risk of becoming a sleepaholic! Thanks for your responses- I love hearing a new perspective just when I think I have exhausted every avenue!

[Sailor]

Hi Purpleangels What an evocative alias you have chosen, it conjures up great things in my imagination. That aside, I am really pleased that you will be meeting with others and finding out that you are not alone in all of this, that there are others with similar experiences to yourself. I can remember just how important that was to me at the time I was going through treatment. Also glad that the oxycontin is being used to control things. Again they should be able to get a balance where there is good pain control without the sleepaholic side effect. However, if he has been in a lot of pain, it is awfully tiring and he may have a bit of sleep to catch up on. Take care Sailor If in doubt, stay out to sea. No one has ever gone aground on a wave. Anon

[maddie86]

i know how u feel! the waiting game is awful.. but there's nothing you can do.. my bf has his good days and bad days, and ur right when the bad days are bad, they are horrid! my bf gets so moody and angry and just blank.. pain management is good because it means healing faster to.. i massage my partner often, this helps hims sleep and with the pain. I also think that you should be upfront and honest with your kids.. i work with children and they often are very cluey about things. Best of luck! xoxo