Where do I start?

[Banditswife]

I've joined cancer connections because my husband has cancer and we both feel like shit. I love him so much it hurts and I hate seeing him suffer. He is in a lot of pain which is not quite being controlled by his current medication. Up until a few weeks ago one of his proudest things was that he didn't have to take any medication except panadol for the occasional head ache. He is on panadol osteo three times a day, Targin twice a day, endone three times a day, Valium three times a day (for spasms in his back) and coloxyl to help prevent constipation from the endone. He still has dreadful pain and can hardly walk. He won't go to the GP to have it reviewed because he is seeing a radiation therapist on Monday. His oncologist is hoping he will have radiotherapy before Christmas and chemo after. if the radiotherapist doesnt start treatment then he will have chemo before christmas. Thankfully his medications help him sleep. The oncologist is a professor and seems to know what he is doing but we have nothing to compare it with. He hasn't given us much information - we have spent most of the time since the diagnosis waiting for the next appointment. I have googled Rick's diagnosis and symptoms. Not helpful, just very scarey. The cancer in his spine, pelvis and femur was only discovered after a scan for a kidney infection. The on-call GP said "you have a blockage in your kidney and there's black spots on your spine". He then sent him home to wait for an appt with a urologist. He made it sound like the spots were dust on the lense. A week later Rick was back in emergency with severe pain from the kidney infection. The locum filling in for our usual gp was horrified that antibiotics weren't given and that the 'black spots' weren't investigated. An oncologist was the next appointment after a three week wait. He ordered more scans and a bone biopsy, so more long waits. A couple of days after the biopsy he started to have back pain which has gone from bad to worse. I had to ring triple O one day as he couldn't move from what turned out to be spasms from the nerve being pressed on in his spine. I still can't help thinking sometimes that maybe it's just an old back injury returned and that the black spots were just dust. Other times I think the worst.

[Banditswife]

I forgot to say that his diagnosis is advanced bladder cancer. He had bladder cancer 7 years ago and after surgery to remove his bladder, prostate and appendix he made a full recovery. He has been very healthy since then with only the bag to deal with.

[Melanie]

It takes a special person to be a carer. Great big hugs to you, & I hope you cherish every moment you have with your husband.

[#4]

What a dreadful time you and your husband are going through. I'm fairly new here too, and I am finding that it's the right place to express your fears and grief. Cancer is horrible, there's no getting over that. But it helps if you find out as much as you can about it. If your oncologist isn't telling you much, then ask him, and keep on asking until you understand. Doctors and other medicos are obliged to get your informed consent about any procedure, so make sure that you are properly informed. Find at least one person -- a cancer care nurse, perhaps -- whom you trust to give you the truth, and to explain things in terms you understand. These days, with the internet, we can readily find out information. Wikipedia is usually pretty good about medical information. Apparently, the medicos have decided that, since people are going to look things up on Wikipedia, they will do their best to make sure it's accurate. It can be scarey, as you have found out. But cancer is scarey. Anyone who tries to play it down is not doing you any favours.

[little_stitcher]

I'm sending you hugs over the internet. It's so hard to watch someone you love suffer- this is a great play to come to vent, ask questions and share ideas. love Emily

[Banditswife]

It's now the 25th April 2014. So much has changed in our lives that it's hard to know where to start. (Again) Rick's advanced cancer in his bones has spread to his upper body now - shoulders, chest, ribs, arms and is extensive. His pain is mostly under control with 150g Lyrica twice a day and 40mg OxyContin twice a day. He is also on coloxyl with senna, Maxalon and now warfarin. His appetite is often non-existent so he also takes calcium and vitamins. He has ordine for breakthrough pain. He has had a number of hospital stays. The worst two were for a kidney and a massive clot. The clot ran the full length of his leg from his abdomen to his foot. The kidney infection contributed to him having an overdose of morphine as his kidney wasn't clearing it out of his system. He now also has fluid on his lungs which prevents him walking more than a few metres at a time. He has lost 16 kilos which is a lot for him as he's never been big. He is starting to look and feel very bony. He had two double doses of radiation which has helped with the pain. The oncologist has not been very forthcoming with information and has continued to put off starting chemo. We still don't know if that's because it's not likely to have a good outcome or if he thinks there's no hurry. We found him to be very abrupt and difficult to talk to so our GP is referring him to a different one. After both hospital stays he ended up with new infections from the hospital. I'm really struggling to continue my very demanding job and care for Rick the way I want to. I know it's getting to the point where I will have to take more time off but this is going to be very difficult for us financially. We don't qualify for financial assistance which is frustrating. Our chemist bills average $150-200 a fortnight and every appointment is a round trip of 192km. (Has to be 200 to qualify for IPTAAS) The hardest part is seeing him so sick (vomiting for no apparent reason yesterday and today) and being helpless to do anything. He has chronic fatigue. I know he is dying but cannot bear to think about it. We have talked about it and are trying to get on top of all the 'sorting things out' which is frightening and heart breaking. I cry every day.

[Banditswife]

My amazing husband of 35 years died on 17th June 2014 from advanced cancer with bone metastasis. He fought so hard and suffered so much that it should have felt like a blessing but I'm just so sad and desperately lonely that I can't stop crying. I try to find comfort in the fact that I could care for him myself until the end and that he died peacefully, at home in my arms, but then I start thinking of all the things I could have done better and question whether I did enough. I have wonderful support from family and friends but nothing can fill the gap left in my life. I miss him so much. It still doesn't feel real and it hits me afresh constantly. I'm hoping someone who has been through this can tell me that it gets better and suggest some things that might help. I'm spending time with family but know that I will soon have to return home to our empty bed.