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.
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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.
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Your story is similar to mine, except my husband's original cancer was bladder cancer. He was diagnosed with advanced bladder cancer to the spine, pelvis and femur in September. We too are in shock still and don't know what the future holds.
I'm not finding this site all that 'interactive' just yet as there seem to be so many people out there with similar stories but its hard to connect with them when no one replies to your posts and blog? Maybe I'm too impatient or don't get on often enough.
Anyway, so sorry to hear your story. Our children are all grown and we have grandchildren older than your little one, so can't imagine how hard it would be to explain why mummy is so sick. Wishing you and your family all the best.
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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.
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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.
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Hi, I'm also new here but am caring for my husband who was diagnosed in September. I had the same question as you -to put it out there on Facebook or not. I have chosen not to. My husband didn't mind either way, he has been grateful that he hasn't had to do all the 'telling'. I have used group private messages on facebook to let close friends and family know the same information at the same time. That has been very helpful as I don't accidentally leave anyone out of the loop. It also then gives people the opportunity to ring or message back if they want to know more. It's a very personal choice but if you are like me you probably have a lot of 'friends' on FB who don't really need to know. If you use the group message remind them in the first one that they should choose to reply just to you, unless they want all to see what they say. Some people don't know this.
Hope this is of some help, all the best for you through your treatment.
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Thanks so much for your reply Maureen. You and your husband have certainly had a lot to deal with in a short time. Rick was only diagnosed mid Sep so this is new for us too. In 2006 he had major surgery to remove his bladder, prostate and appendix and apart from learning to cope with the bladder bag, he has done really well. He has a lot of pain now which they are trying to get on top of with a concoction of drugs until he has radiation therapy. We are not even sure what his prognosis is - its hard to know what questions to ask and so we just have to trust the drs. The long waits between appointments have been very hard also. I am also very busy with my job and at times feel as though I have two lives and am juggling both and am about to drop everything. Our family and friends don't live close and even though we have friends where we now live its hard to talk to them as I tear up which then makes them feel bad. Thanks again for replying, it helps knowing someone is there who understands.
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My husband had bladder cancer 7 years ago. He had his bladder removed and has been very well until 2 months ago when a scan for a kidney infection showed cancer on his spine. Further scans, blood tests and a bone biopsy have shown the cancer is from his original bladder cancer which has spread to his spine, pelvis and femur. He is waiting to see a radiation therapist on the 9th December. We have wonderful support from family and friends but I still feel so alone and sad. I would love to have someone to talk to who is going through a similar experience.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.