Hi Ginger   How's the radio silence been? Have you missed us?   Haven't heard from you in a while. Figured you might have died from cancer or boredom. Which ever may be more aggressive. Same rule applies, for cancer and boredom, as it does for Coronavirus. If you fall down and look dead, your friends are allowed to poke your dead corpse with a stick. It has to be a long stick though, as Coronavirus and boredom are contagious.    I'd tell you how I am, but first I want evidence you are still dancing.   I do have to share some sad news with you. They killed Kenny! Those bastards!       Take it easy. Talk soon.   Phil ... View more

Hi Joe   I too was caught out with the unexpected treatment outcomes. I have had two surgeries and chemo.   My first surgery, and it was major surgery, so that was an eye opener. left me feeling like I should have been more sympathetic to other people I knew that had gone through surgery, when I wasn't.   Chemo was aweful and complicated, I expected it to be so no real surprise.   I lived with an ostomy bag for 5 months. Adjusting to the bag was a challenge, but it was the surgery that followed which was difficult. I was warned the first week after surgery would be a shock to the system. well, learning to reuse parts of my body that had been dormant for five months is an extreme experience.  I was expecting to return to work a week later. As I worked at home, not a big issue. It took two weeks before I started working, but was not smooth. Best thing about working from home, I was actually house bound, for about 2 months. things started to improve, but it goes up and down. The point being, I thought I'd be back to normal a week after surgery.   Researching afterwards was an eye opener. Finding out how long people have issues in similar circumstances was devastating. It left me feeling that treating cancer had reduced my quality of life so significantly, I questioned why I would go on this way. I was not prepared for how bad that would be and it hit me really hard.    The good news is, things have improved. My altered body components are doing their jobs. Although not without some life adjustments and occasional pain. the damage I suffered during that period has mostly healed, so less overall pain. I'm no longer House bound and I have a new job in the city. While I don't think things are back to normal, I'm able to participate in normal activities again.   Normal has a new definition though, with the coronavirus situation. Hunting down shops for a packet of toilet paper is not normal. Should be able to just buy it! For anyone out there who has recently undergone an ostomy reversal, and you are wondering what fresh hell you've been cast into... I just want to say... I get it. I would happily punch any idiot hoarding toilet paper and denying people like yourselves from getting the downstairs comfort you need to get through this period. Enough ranting Phil!   take care Joe.       ... View more

Hi Tina   Capecitabine is a nasty one. It sux balls. It nearly killed me three out of four cycles. My best advice is to call for help if you are dehydrating. Don't waste any time.   I didn't have any skin issues, but the Oncology Unit recommended moo goo for my feet and hands.  We ended up buying a kit from the Moo Goo web site. Good price and got a pair of cow socks. How good is that? My wife loves its.    All the best.   Cheers   Phil     ... View more

Hi M   two more cents. I didn't want to say anything because it was your first time, but since you came back... To quote the movie Mr Mom, "You're doing it wrong".   Checkout the community posts on this page. As a support person, you have your own cancer journey. https://onlinecommunity.cancercouncil.com.au    try not to read them all. It will break your heart. but do find some topics you can relate to. and I encourage to post your experience.  it may help someone else with a similar experience.    All the best.   Phil ... View more

Hi,   Not advice... just my opinion. I think two failed marriages forbids me from advising anyone about marriage. 🤣   And you should sleep more. Damn! being awake in the middle of the night. Anyone would think you have cancer too.   I am on the mend, BTW. All my treatments are complete. We are in monitoring for a few years. Just like our bushfire alerts, I'm on watch and act!   Cheers   Phil  ... View more

Hi M   You are a wonderful person. Being there for a family member with cancer and considering manipulating your life options to bring joy to that person.   I offer my opinion, not so much advice. it comes from being a cancer suffer and being married three time.   Firstly, I was married young twice, both times with short term relationships and pregnancy being a factor. Marriage seemed like the expected and right thing to do, but the relationships were not strong enough. Both marriages were short. The third time, I deliberately took it slow, careful not to rush anything. I was happy not to get married at all, but when we did,  we made a point of breaking all the traditions. So far so good. We are 15 years strong. For me, success was about making our marriage about us and no one else. Knowing how bad a failed marriage can impact, I would suggest to get married when you both know the time is right. The toughest decision you may face is to ask for it to be delayed, if you feel it is happening too soon. I think it is best to not get married earlier for someone else's need. And keep in mind, he hasn't asked this of you.   My Aunt recently died of bowel cancer and has missed her son's wedding next week. I'm sure they considered the same options, but I'm certain she was happy that they were happy to be in love and planning a life together. The reality is, she was going to miss many exciting events in their lives and unfortunately the wedding was a close one but just couldn't make it. In the end, she had made her peace with it. She had a chance to say goodbye to her loved ones and make new family memories leading up to her death.   I have been undergoing treatment for bowel cancer and had to face some very hard realities too. I reached the point early on, accepting I may have a short life span looking forward, but I came to grips with it quite easily. I found I was okay with letting go, but then discovered my family were not so keen. It was much harder for them to accept that I had cancer. So my fight for survival, was for my loved ones. So I could be here for them. So looking at my kids for example, I had accepted I may not be around to see my kids get married and have kids of their own, but they wanted me to be there. It changed my perspective on life. I was no longer living for myself, I was living for them. So from my perspective, I have no desire to have them live for me. I just want to ensure I can be here for them as long as I can be.   Just my two cents worth. I hope you father in law to be is continuing the fight and going strong. All the best.   Cheers   Phil  ... View more

Hi Wyandra    First week. You are in for a journey. Are you on Capecitabine and Oxaliplatin?   I found the Oxaliplatin to knock me around harshly. The initial side effects hit fast and hard, but overall the first couple of days were bearable. The first cycle was hardest hitting on the fatigue side effect. My cycle started on Wednesday afternoon, Saturday morning I was full of energy and ready to go out, then around lunchtime it hit me. I can't describe it as want or don't want. I just couldn't, slept for the most part of 3 days before bouncing back. By that time, the Capecitabine was challenging me to start hydrated.   The Capecitabine was particularly tough on me. I didn't think I needed to call for help in the first cycle, but 20/20 hind sight is clearer. The next 3 cycles put me in hospital and were aborted early. I'm a rare case, not being about to handle the Capecitabine properly.   One of the most important things is to stay positive. I failed at this at the start of each cycle, but overall toughed it out. Strangely enough,  when I reached the end of my last cycle, I thought I'd be happy, but it was a real anticlimactic experience. I felt more depressed and worn down.   These days I'm coping with my stoma reversal. Life with a shortened colon has it's own challenges. I feel like they left some details out of the brochure. It seems like life just changes after being diagnosed. Some normality has returned, but normal seems to reinvent itself often throughout a cancer journey. I guess that is something I can be certain of. Also that cancer sucks. And I'm very certain that chemo suck balls!   Hang in there. It will be tough and the end seems so far away at the beginning. On the upside, it is concerning that the years go faster as I get older. We'll this year has bucked the trend. This year, being 47, is the longest year I've experienced. It's taken the longest 10 months of my life so far. I may not live longer but it certainly feels like it.   Cheers   Phil ... View more

Hi Malikshaz   It sounds like you've been abandoned while medical staff were more focussed on the holiday period.   I think you need to force the surgeon and oncologist to talk and form a plan. Tell the oncologist you have concerns and ask him to go over the plan. I think the most important thing is to ensure it is all under good control. The alternative is to switch to another oncologist who you have more confidence with. Just remember you are not just on a ride. You (or your Mum, I guess) are in control of the treatment. Learn as much as you can. Ask lots of question. Don't just assume the medical staff have everything in hand. They share their attention over many people, but you and your Mum are dedicated to yourselves. Stay in control and keep the medical staff engaged.   If you or Mum feel that you don't want to be a bother and you are hesitant to get the help you feel you need, now is the time to get over it. Don't be afraid to need help, or get the help you need.   Take care. I hope you are safe from the smoke and fires. I'm in the ACT so we've been drowned in smoke lately. We'll probably all have lung cancer at the end of summer 😞   Cheers   Phil ... View more

Hi Malikshaz   Sch knows me too well. I was on Oxaliplatin and Capecitabine for 3 months. I was stage 2, but after surgery they bumped me up to stage 3. For me, chemo was an insurance policy, treating something that may or may not have been there. A slightly different path to your mum.   A port for Oxaliplatin is recommended. I didn't have it. I know the excruciating pain from having it into a cannula in my left arm. Strangely enough, it didn't bother my right arm. I only had 4 infusion so I didn't bother with a port. I had the most trouble on the 3rd infusion so by that time, a port was not going to be worthwhile. If she does go with a cannula again, I highly, highly, highly recommend shaving the hair off the forearms and wrists.   Each infusion increased the impact of side effects. By the third infusion , I was getting cramping in my legs which made it difficult to walk. Worst case was my last cycle.  My fingers and hands also cramped a lot especially when cold. Trying to push past the pins and needles leads to pain, then cramping. Now 2 months after chemo, my fingers are still twitchy and go numb. Not all the time, but I'm not sure what triggers it.   Capecitabine is nasty. I found out at the end of treatment, about 1 in 20 people lack an enzyme to deal with it. They can test you for it, but it is apparently a lot of effort and they rarely find the odd one out. So the process is... suck it and see. I was the 1 in 20. Made it through my first full cycle. In hind sight I should have reported I wasn't coping so well. During the 2nd cycle, I went downhill on the 5 day. Pushed through until day 8. Went to the hospital and fortunately got there before my kidneys started shutting down. I got roused on for not coming in earlier.   They ended cycle 2 early. Cycle 3 and 4 reduced my dosage to 75% and then 50%. But I still could get through the cycles with out being admitted to hospital and rehydrated. Cycle 3 was aborted on day 5. Cycle 4 was aborted on day 10.   I was warned about how dangerous Capecitabine was at the start during my chemo education. She was quite blunt in telling me it could kill me. She was right, it nearly did. The fault being my own, thinking I had to be tough and fight it and just push through. That is the wrong attitude for Capcitabine. The correct message is write everything in your diary and ask the Oncology nurses for advice if you are worried about anything.   Capecitabine stopped me from absorbing liquid, no matter what I did. It also took away my appetite for drinking and made water taste off. I could eat okay and tried eating jellies and cerial with milk to help get fluids in easier. It didn't help that the Oxaliplatin stopped me drinking cold liquid, so water had to be warm to swallow it. It was a real challenge to keep the fluids going in, but when the body stop absorbing it, rehydration in hospital is the only option.   I'm still recovering from my final treatment, having an ileostomy reversal earlier this month. Things are not improving as quick as I'd expected and I've been mostly house bound since returning home from hospital.    Anyhooo... I hope your mum is feeling a little better now. It sounds like the Capcitabine is going to be a tough treatment for her. It is difficult to face, because no matter how badly it hurts you, you know it is necessary to go through it. I was always anxious prior to starting a new cycle and could not put myself on a positive frame of mind. I can't offer any good advice here. I really sucked at it.   I hope this information helps. It's quite scary. I think it's better to have information though, instead of not knowing. However, the unfortunate part about this... not everyone experiences the same side effects or level of impact. There will always be a little unknown.    All the best. Reach out to me if you need to.   Cheers   Phil ... View more

Hopefully my only obstacles are behind me.   😆😂🤣 😆😂🤣 😆😂🤣   🤫 ... View more