KatieB Posted March 16, 2011 Share Posted March 16, 2011 I'm looking for an incredible lung cancer caregiver to spotlight on the Lf website...is that you? Do you know one, have you been one? If u are a family member or caregiver (past/present) Contact me! I'm looking to hear from YOU. Tell me how lung cancer has affected your life. Your story will touch SO many others and offer hope/understanding and raise awareness. Kbrown@lungevity.org Quote Link to comment Share on other sites More sharing options...
KatieB Posted March 21, 2011 Author Share Posted March 21, 2011 ---> Bump.. So far no one knows an incredible caregiver? I know there are SO MANY of you out there... If you have ever been a caregiver or family member of someone with lung cancer----PAST OR PRESENT and you want to share your story- it could be about being a caregiver, or how lung cancer changed your life, how you advocate or volunteer or how it's changed the way you view the world around you...maybe you want to share the things that helped you during that time or talk about things we need more of to help us and our loved ones... Please share your story...and help us raise awareness. Thanks. Quote Link to comment Share on other sites More sharing options...
Joppette Posted March 21, 2011 Share Posted March 21, 2011 You have mail. Quote Link to comment Share on other sites More sharing options...
KatieB Posted March 21, 2011 Author Share Posted March 21, 2011 Got it! I'm replying to you now! Comeone all you awesome caregivers! I want to hear from you! Quote Link to comment Share on other sites More sharing options...
ronvrens Posted March 25, 2011 Share Posted March 25, 2011 Hello Katie I will post over the weekend. its just too hectic here at work at present Love you all Ronnie Quote Link to comment Share on other sites More sharing options...
KatieB Posted March 25, 2011 Author Share Posted March 25, 2011 Thank you! Quote Link to comment Share on other sites More sharing options...
ronvrens Posted March 28, 2011 Share Posted March 28, 2011 CANCER it comes almost like an explosion that rips you apart. As I have already posted, Pats cancer story began with severe back pain that could not be managed with the painkiller she was given. When the diagnosis of spinal and femoral cancer was made the orthopaedic specialist gave me the news first. After the bone biopsy was done under CT guidance I did not immediately tell her the findings. I waited until she had got some pain relief and was comfortable and then I told her that they had found some cancer in the bones and that was the reason for the pain. How do you tell someone you love that she has got cancer? Up until the diagnosis she showed no signs of lung cancer except for maybe a little nagging cough now and then. She suffered from some allergies and that was thought to be the reason for the cough. All of a sudden there appeared an oncologist who announced that the bone cancer was not the primary cancer and that it was also in the lung. This sent shock waves through the whole family. I am a fully qualified paramedic with a wealth of experience in most medical matters as I worked on the road and also in a clinic in Lesotho where I had to do a whole lot more than just paramedic work. Cancer was something inside a person and the only assistance was usually just supportive until they were in specialist hands. When it happens to a family member and especially your wife then it becomes very personal. The biggest mistake I made was to utterly trust the oncologist. He was a smooth talking person, very flamboyant but did no hands on medicine except for once draining the fluid off Pats lung. When Pat developed a cough he said it was normal with a tumour in the lung. Not once did he even listen to the chest. By the time pneumonia was detected by his partner Pat was already very ill. This is where I feel guilty. With my skills and knowledge why did I not think to check her chest and lungs? I feel I let her down as a simple listen with a stethoscope would have revealed an infection. When Pat had recovered and was well enough to leave the hospital she had her first round of chemo. In her already weak state it took its toll and Pat was extremely sick and was in and out of hospital and the chest kept filling with fluid. At this point it also became very clear that the medical care Pat was getting was sub standard. I spent as much time at the hospitals as I could so that she would be properly looked after. It seems as though, and I didn’t know then, that prospective terminally ill patients do not rate high on the care list of the nursing staff. Now for the times Pat was at home. A nephew of Pat, her sister’s son, was not working and he offered to help for a while. I think my side of the family was taken in by his seemingly caring attitude and willingness to help. When I had to leave to work I had to put my full trust in him but it transpires that all he wanted was to get away from his mother and a good opportunity arose. He spent more time playing on the computer that actually looking after Pat who did not want to still burden me when I already was pushing myself to the limit with travelling and the constant care I gave her when I was with her. Another thing that came to light was that he was bad mouthing my family on facebook and telling a lot of lies. He was confronted by my eldest daughter and it led to bad feelings in the family. Just after we were notified of Pats passing he started phoning everyone and announcing the death without any thought that perhaps I would have preferred to. This so traumatised my grand daughter that even today she still bears the emotional scars. One of the things I must mention here is the way in which her manipulated us and was constantly telling his mother that we never told him anything. He could not even work out how to manage Pats medication although all the instructions were on the containers. I had to draw up a roster for the dispensing of medicines. Back to the oncologist. When I asked him to be frank and give me an idea of Pats condition and the prognosis he was evasive. Most information was passed on by the nursing staff. I feel Pat and I were pushed into the treatment by threats of failure of the chemo working if there is a delay and they had already ordered the medicine and cant send it back even though Pat was still desperately ill from the previous one with blood counts that just made the grade. Money. I didn’t actually want to mention this as I would have sold my soul to buy good health for Pat. Everything revolves around money in the oncology game. In the short space of 3 months the medical insurance for oncology for the year was wiped out. This amounted to about $100,000 if I do a quick conversion. I am not sure what the prices are in America but over here it is mind boggling. I am glad and also unconditionally appreciative of the support shown by the company I work for. When I approached them after the diagnosis and told them, the first question was “ what do you need to help”. They were prepared to give me a month off just to sort out everything. I opted for time off when I needed it and it turned out to be almost 60 days in the three months. Not once did anyone give me a deadline to be back but I also did not take advantage of the situation. The day Pat passed away a rift between Pats family and my family appeared. It was almost as if they and her sister blamed me. Since the funeral I have not heard anything from them. My family were so different and my two sister immediately asked if I needed them to come and support me. When my daughter said yes they were here the next day and my two nephews arrived for the funeral. My family is very close even when there is no crisis and I know I can always count on them for support. What I have learned from this experience Love your spouse with all your heart. Don’t be ashamed to cry. Follow your heart but don’t be too proud to get help. Keep in touch with all your family. Don’t be afraid to ask questions. Don’t take anything for granted. Always question medical procedures and management. Make yourself knowledgeable about any medical condition. Don’t always listen to negative advice. You will soon find out who is genuine. Share your experience with everyone affected by lung cancer. It may help them cope and understand. These are just some of my thoughts. Ronnie Quote Link to comment Share on other sites More sharing options...
KatieB Posted March 28, 2011 Author Share Posted March 28, 2011 Thank you so much for sharing your story Ronnie, (((hug)) Quote Link to comment Share on other sites More sharing options...
Vortex Posted March 28, 2011 Share Posted March 28, 2011 Hi I am Michelle, Ronnie's eldest daughter. I can only echo what my dad has said, especially where he mentions how close my siblings, my dad and I are and how we drew even closer when we became a family in crisis. I am proud to say Ronnie is my dad, a dad like no other. I am proud that my brother, my sister and I could stand united behind my dad, and all of us are united in our grief. My mother would have it no other way. Quote Link to comment Share on other sites More sharing options...
ronvrens Posted March 31, 2011 Share Posted March 31, 2011 Hi Katie In my previous posting I think i vented a bit of the anger that had been building up. There were times that were good even though Pat was very ill. She was a fighter and could hide her pain and discomfort so easily. I loved just sitting with her and tending to all the little things that made her comfortable. I think in a time of severe pressure and worry, the ability to really show your love and feelings becomes very apparent. Life moves so fast sometimes that we just say I love you out of habit but when the chips are down I think it really comes from the heart. There were times when she felt better and then we could really sit and talk and enjoy each others company. The best time was just before her final chemo when she was really feeling and looking good. She got up and moved all over and did the things she so liked doing such as knitting. She finished a shawl for the yet unborn grandson but did not manage the jacket. This is still with her knitting pattern book. The night Pat, my daughter and I went for a drive through Durban to see all the lights just before the world cup was so exciting for her as she hadnt been out for a long time due to the hospital stays and the chemo. That night we drove the length of the main street and then I decided that she should see all the renovations and additions to the beach front. The trip also took us right close up to the new soccer staduim, which by the way my company built, and we all marveled at the structure. When we got home I could see that Pat was exhausted but she never once complained. When she was in hospital I prefered to look after her myself, doing whatever I could to keep her comfortable. I loved to wash her hands and face and brush her hair, rub cream all over and cleaned her dentures. In the past she did the same for me when I had been sick in and out of hospital. This is how we felt and cared for each other. This is the reason for my lonliness. When I was home I was always around her, helping her, teasing her, holding her and sometimes just irritating her. These are just a few more of my feelings. Ronnie Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 31, 2011 Share Posted March 31, 2011 Ronnie, this is a beautiful post about your beautiful beloved wife. Thank you for sharing it with us. The fact that you can write out these positive memories of Pat even when she was reaching the end tells me she is still with you guiding you through this grieving process. Judy in KW Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.