Hi Everyone, Couples, Communication, Cancer. Each of these is difficult enough on their own, but put them all together and you can add a new word, CHALLENGING!! I know it's a common theme here, it is just so vital to be able to communicate with each other and with others to try and minimize (because I'm not sure that you can eliminate it all together) that feeling of "I'm going CRAZY! I am aware that there is a 'couples retreat' being held in Perth in November by the Cancer Council. Has anyone else been to one previously? If so, did you find it helpful? ... View more

We arrive at our appt with the onc., just a routine check-up, post chemo cycle 3. I knew I needed to clear the air with the onc. I had been very emotional at the last appt when we had got the results of the first scan since treatment began. I was nervous, besides the initial appointment, I hadn't felt 'included' by the onc. even though I went to every appointment. He concluded his check-up and asked Greg if he had any questions. Greg answered no, but then turned to me and asked if I had any for the onc. I took a deep breath, this was my opportunity, it felt like, speak now or forever hold your peace. I took another deep breath. I turned to the onc. and said, "I am a person who needs to feel included, I need to know what I am dealing with so that I can get on and deal with it. Sugar-coating things does not help me. I know that you can't tell us 'exactly' when and what is going to happen,and that your prognosis is an 'educated guess' based on experience. It would be helpful if you can tell us, this is what I would expect to happen in 80% of cases, 5% may have this..., 5% may have this happen etc etc, I am not sure which of those categories Greg will fit in to, but they are the possiblities. Greg and I need time to process what is likely to happen next so that we have time to come to terms with it before we need to help our children cope with it. I got upset at the last appointment because you were ready to let us walk out of your office thinking that we could tell our boys that daddy is getting better. When I questioned you, and only because I questioned you, you told us the results didn't change the likely time frame of 18 months at best. I feel that we need to work as a team and at the moment that is not happening". I may have said it in a different order to how I have written it, but that is the basic content. I maintained eye contact and composure, did not get emotional (upset). The onc. on the other hand kept looking everywhere but at me. When I finished I was blown away by what came next........ The onc. turned to Greg and simply said, "shall we go out and book the next appointment then?". He did not acknowledge anything that I had said........was I invisible? had I just spoken? I knew that I had not ASKED him a specific question, so there wasn't any answer that he needed to give........but........I expected at least, "thanks for sharing that with me, or, that is helpful to know, or..."I'll bear that in mind".......or, "I'll give that some thought",.......or, "I appreciate your honesty". NOTHING..... not a word...... it was like I didn't exist. I walked out of the office feeling totally deflated. Driving home in the car, alone, I replayed the scenario over and over. Later that night, when the boys were in bed, I asked Greg whether I had been unreasonable/not concise. He answered that I hadn't asked a particular question, which I agreed, but also said, "He keeps his cards pretty close to his chest doesn't he?". I said I wasn't expecting an 'answer' to a question, because I knew I hadn't asked one, but I WAS expecting some kind of ACKNOWLEDGEMENT. I felt like it was a total waste of time to have gone to the appt. ... View more

So we have completed one round of chemo as an in-patient. Not what was planned but it was important to get treatment started, so that is what had to happen. Greg had come home from hospital on the Saturday arvo and went to work on the following Monday, with a camp bed tucked under his arm so that he could have a rest in one of the back offices if he needed it. On the Wednesday he was taken to lunch and decided to have a glass of white wine with his meal. BIG mistake, that night he could hardly swallow as his throat and mouth were VERY tender. He thought he had 'burnt' his throat with the alcohol. For the next three days he could barely eat and had difficulty talking. His tongue was very swollen too which did not help things. When we saw the oncologist on the Friday, he suggested a product to give him some relief, it didn't help much. By the following week, it had settled down and Greg just decided he would avoid alcohol! Obviously Greg didn't want to have chemo as an in-patient again so a vein-o-gram had been done while he had been in hospital and it was confirmed that he is 'not of this world'!! His veins are not where everyone else's are and that is why the catheter from the port wouldn't work. It was not going into the right vein. Now that the surgeon had a 'map' of where the veins were, arrangements were made to 'correct' the problem, so on 15th May, Greg had another surgical procedure which was dye-tested to confirm it was all working correctly before they finished the procedure. A week later he was back at the day ward for round 2, this time, we had the i-pod to help with some of the anxiety and cut out the chatter. Thankfully the port was doing what it should do and so we spent the next 6-7 hours sitting (him in his comfy recliner and me in the hard straight back chair!) waiting for the hydration and chemo to go through. He read for while, spent some time chatting on the phone, had a cat-nap and then they hooked him up to the pump that would become his constant companion for the next 96 hours. That first night at home with the pump connected and tubing winding its way through the bed, I decided I wasn't going to get a restful nights sleep as I was concerned about inadvertently rolling onto the tubing and pulling it out or something! So I headed down to the spare room. The next morning when I went back to our bedroom, I noticed that he was sleeping on my side of the bed. He told me that he had woken during the night with pain in his stomach and that once he was awake he had become aware that he had a high temperature. It was pain that woke him up, not the feeling hot. He told me as soon as he lowered his temp, the pain went away. I was concerned by this and suggested that he should phone the oncologist to discuss. "no" was the response. It didn't happen again (or if it did, he didn't tell me). Wednesday he went in to have the pump re-loaded, by now he had a hiccup that turned into a belch as a regular 'friend'! It was so 'strong' that it was waking him up during the night. That seemed to last for about the 5 days of treatment. Friday he was disconnected from the pump, which meant he would be home by about 4.30pm. He was pretty tired by then, so would go to bed for a coupl of hours then get up have a light dinner and be on the couch snoring before the ABC weather report had finished! The weekend was a total write-off, the Saturday he would sleep in, get up have some breakfast, fall asleep on the couch, get up, do something for 5 mins then need to rest. Have lunch, back to bed for a lay down, have a light dinner and then off to bed. By now, his mouth and tongue were sore again, we soon worked out the wine he had in the first round was not the cause of his discomfort, it was the chemo. His tongue was very swollen and his speech was slurred, similar to what a stroke sufferer experiences. At first I had been concerned that he may have had a stroke, but when I looked at his tongue, it was very big and therefore logical that it would impact on his ability to speak clearly. The mouth/tongue thing lasted about 5 days and then disappeared. When we went to see the oncologist I raised the issue of Greg having been woken up by the stomach pain on the first night. Greg flat out denied it. I couldn't believe my ears! He didn't say he couldn't remember it, he said straight out. "It didn't happen". Even as I relayed what he had said to me the next morning and what I had seen and felt (his side of the bed was still damp from where he had been sweating), he still denied it. Naturally the oncologist let it slide. I was VERY frustrated. The plan had been that a CT scan would be done after round 2, round 4 and round 6 of chemo. Greg had said right from the outset that he wouldn't be taking any notice of the results of the scan after round 2. He did not want to discuss anything or make any decisions until he had the results after round 4 of chemo. Until then he was just going to concentrate on being positive and getting through the treatment. I really felt that I needed to have some discussions and decisions happening before then but I respected his wishes and tried to wait without pushing him. I really struggled with that. Now that he had had 2 rounds of chemo, the first CT scan was due. The onc. said he would like Greg to have his scan on Thurs 18th June and the bloods done on Friday 19 June and for us to see him on the Friday to discuss the results. Greg told him he couldn't do that as he was flying out to Sydney on Thurs 18th and returning on Sunday 21st. It was agreed that Greg would be booked to have the chemo on Monday 22nd and would get the staff at the day ward to do the bloods on his arrival (we just had to get their 1/2 an hour earlier). The scan would be booked for the wednesday before he had the pump re-charged and we would see the onc. for the results on the Thursday. This was about the time that the swine flu was becoming a huge media thing. I was feeling really angry that we were going to have to wait an extra week to find out what was happening just because Greg wanted to go to Sydney to play golf with his work colleagues. I was worried about him flying and possibly exposing himself to swine flu or any other 'bug' that was floating around the aircraft. I was already tense about the upcoming scan without it having to be delayed and the additional stress of him travelling. Basically I resented him for putting me under additional pressure. He flew out on the Thursday at lunchtime, had a late night catching up with old friends in Sydney that night. Friday he went in to central Sydney with our friend M, had breakfast together and then Greg met another friend for a round of golf. Friday night he met the work colleagues for a dinner, very late finish and lots of drinking happening. Saturday he was up early to head off to golf south of Sydney, full day at golf, home for a quick shower and then off to watch Sydney Swans play Collingwood at Olympic stadium, after game they went in to Sydney for more drinks. Sunday he had a bit of a sleep in, caught up with another friend and then flew home. arriving about 8.00pm. A big weekend for anyone, let alone someone going through chemo! Monday morning we dropped the boys off at 7.00am to have breakfast and be taken to school by a friend. We headed into the hospital hoping that his blood levels would be OK for him to have chemo. I knew he wouldn't be happy if things had to be delayed. Fortunately the levels were good and everything could go as planned. A CT scan was booked for Wed 24th June to see what impact the chemo was having, if any. The day arrived to get the results, we were both very nervous. Greg had said previously that he was not going to take any notice of what this scan result was, as he felt the scan after the 4th round of chemo was going to give us a better idea, as we would then have a 'trend' happening. The oncologist was very excited and showed us that there had already been noticeable reduction on the primary oesophageal tumour and some reduction in the peritoneal cancer as well. He was really upbeat and kept saying this was great news and a great result. Which of course it was........but.......then he said "You can go home and tell your boys that Daddy is getting better". What? I was confused, remembering that he had said at the initial appt that 'with treatment, hopefully 12-18 months'. Had that changed? I put the question to him... I repeated what he had told us in March and asked had that changed? He was quiet, "did I say that?" he asked. "Yes", I answered. "Well, no it hasn't changed, I would probably think he would get to 18 months" he said. So what do I tell my boys I ask him. He tells me he can't tell me what to tell them. I am crying now, you just told us that we can go home and tell them Daddy is getting better. I am not expecting him to give me a word for word script on what to say to them. But there is no way that I can go home and tell them Daddy is getting better. I am very angry. If I hadn't questioned him, he was not going to 'offer' the 'this is good but we have a long way to go' speech, he was going to let us walk out thinking that Greg was getting better. Throughout the appt, Greg had been fairly quiet, but in the little bit he did say and his body language I felt that he was taking more notice of them because they were good than what he had planned on originally. I didn't want to 'burst his bubble', but I also felt it was better to 'get real' then, rather than later and have further to fall. We left the onc. office and walked downstairs. Greg knew I was very upset, he also knew that I had a counselling appt for that afternoon, he offerred to come with me. We went to the appt (well Greg got there about 10 mins after I had gone in), the counsellor was very caring but too be honest I don't remember much of what she said. Naturally we had told people that we were getting the scan results, so it was time to update them. Greg was very positive with everyone, telling them there was significant reduction but failing to mention that it didn't change the prognosis. I would tell people that it had reduced, but the time frame had not changed. I felt ripped off, I wanted to be pleased, they were good results, the best we could have got, but it didn't change the fact that I could still lose my husband in less than 2 years. It didn't feel like a win to me. Greg's third round of chemo came and went without any major changes to the first two. He still got the hiccup belch thing for the first 5 days and then the sore tongue/mouth would kick in. He would be wiped out over the Friday/Saturday and then start to pick up by about lunch time on Sunday. At our next appointment with the onc. I felt I needed to clear the air with him and explain what I needed and how I felt. I have a tendency to 'waffle' (had you noticed?!) and so I thought very carefully about what I wanted to say and had it clearly and concisely planned. ... View more

So, our life as we knew it has changed forever. We have a diagnosis of cancer and a prognosis of hopefully 18 months. What now? As I drive home alone from that first appointment with the oncologist, I am devastated. Greg (hubby) has gone back to work to tell his colleagues. I dial our good friend M's number. He is expecting my call, he lost his partner to secondary liver cancer 2 1/2 years earlier after a 6-8 week battle. I know that he will understand exactly how I am feeling. I can't remember exactly what our conversation was, but I know that it helped because he had been there. His words were not empty. I think I rang my Dad next, this was the day of my Grandpa's funeral, we had been to the service but had to leave immediately it was finished to get to the oncologist appt. The rest of the extended family were at my parent's place for lunch. I didn't want to speak to Mum as she had enough on her plate that day, so I dialled Dad's number and asked him to bring any leftovers out to our place for dinner as we needed to talk with him and Mum. I didn't say anything about the appt to him then, but he knew that it hadn't been good news. I remember ringing the school and speaking with the Principal to advise him that we would need access to the school pyschologist and/or chaplain. By now I had arrived at my eldest son's JETS class to pick him up. I put up my 'shield' and hugged him tightly and we drove to the friend who had picked up my youngest son from school. I remember silently crying in her bathroom, I wasn't ready to cry in front of the boys yet. Mum and Dad arrived with dinner, we talked about everything else but the cancer, because we wanted the boys to be in bed before we told them the prognosis. We sat outside on our patio and gave them the rundown. We hugged each other and we cried together. Mum and Dad prayed for us, it was what they needed to do and we let them. They didn't stay too long after that. Greg went to bed and I started to ring my two sisters and my brother. The phone calls were short, no-one knew what to say. By this time it was about 10pm, I could see lights on at our neighbours so I rang them too. I seem to recall that I slept reasonably well that night, all things considered. I think I woke early the next day, it was a Friday and I was grateful that I only had one day left in the week to get the boys off to school. I made arrangements to speak with both the boys teachers and the Principal about the new information. They have been fantastic throughout. I started to tell other Mums at school of the prognosis. The more I told it, the less emotional I became while telling it. It wasn't that it didn't hurt to tell it, more that I got into a kind of rythym when I told it because I was saying it so often. Within a week, Greg's work had said they wanted to send us all to the Gold Coast for a family holiday before he started treatment. WOW! what a generous offer (we're from WA so the airfares aren't the cheapest!!) His work were going to pay for the accommodation as well, but my parent's were able to book an apartment through time share which was absolutely fantastic. Knowing that work was only paying for the flights made it easier to accept the generous offer. We decided we would tack on a trip to Sydney at the end of it so that we could catch up with friends there too. It was very exciting, but for me, knowing why we were doing it, it was very emotional too. We had a wonderful time, did 4 worlds in 4 days and then we had a day of rest! Managed to catch up with some old travelling friends who live in Brisbane that we had met on a European coach tour we did in 1998, which was great. We headed to Sydney on Good Friday to stay with our good friend M, who we met on the same tour. S from Melbourne flew up to join us and it was really special spending time with them. S & M took me under their wing (while Greg and the boys did a tour of the Olympic stadium) and shared their concerns for me and what we were facing. These are people we met 11 years ago and only spent 19 days with but they have been better friends to us than some people we have known for years. It is just such a shame they are on the other side of the country. Our farewell at the airport was very emotional. The week after we got home, Greg had his port fitted. Welcome back to the real world! 5 days later we had a family picnic with all of my immediate family to have some photos taken. It was a lovely April day and we were in beautiful spot on the Swan River. Mum had organized for someone from her church to come and take a family group photo and then photos of each family too. Greg is not smiling in one of them, he was very anxious about starting chemo in two days. We sang Happy Birthday to him, as his birthday was the day he started chemo. What a birthday present. I shed some tears and held back more wondering how many more birthdays there would be. The night before his chemo starts we take the boys to my parent's place. We have an hour travelling time in the morning and need to be there by 8am, so the boys have a sleepover at nanna and grandad's place. 28th April, the alarm goes off, but we are already awake. We drive in silence to the hospital, not sure of what is ahead of us. Greg is not the best with needles/hospitals/surgery/medical stuff in general, he feels very queasy when there is any kind of discussion/vision on tv etc. We arrive at the day suite, Greg chooses his chair and they shave the area around the port, as they insert the needle into the port Greg is struggling. They try to flush the port. Nothing happens. The nurse starts to jibber about how she might not have the needle in correctly and asks for the sister to come and check. Greg is more tense. The sister tries to flush it, the syringe won't budge, too much pressure. She recommends they take that needle out and try a bigger/longer one, she is sure it is in the middle of the port but just to be sure. They take the first needle out, Greg takes a deep breath and they push in the new longer one. He is so tense. Again, they can't get any movement with the syringe. Great start, not.! The sister decides it is a problem with the port and organizes for a chest x-ray to be done, Greg is not happy. We set off down to have the x-ray done, it confirms that the catheter leading from the port is not in the right position. They can't use the port this time, so he will have to have a canula in the arm. The nurse has said that once the canula is in he can't leave the hospital, I heard this, Greg didn't. They get it in and start his hydration. They tell us they will organize a bed on the ward for him. I have tried to tell him he will be there for his entire 5 days of treatment, but he insists he is only there for the day. The bed is ready, we take our stuff and head to room 10. The ward nurse comes in and asks where his pj's, toiletries etc are. It starts to sink in. This was not the plan. He is NOT HAPPY. I head home to collect everything he will need for his stay in hospital. I get back to the hospital 3 hours later and he is just getting his first dose of chemo. I sit with him till approx 7.00pm and then head to my parent's place to see the boys and stay the night. The boys are ready for bed and I tuck them in after briefly explaining that Daddy had to stay at the hospital to have the medicine because the port didn't work. Our eldest son, JK, was extremely upset that Daddy had to be in hospital on his birthday. I sat with him and talked with him and cried with him and ended up reading a meditation story to him to calm him down so that he could sleep. an hour and a half later he was calm and I was exhausted. I did get some sleep that night and then headed off to take the boys to school. In the afternoon picked them up early and took them into the hospital, Greg told them about the room and showed them his canula and then had a phone call from work. 45 minutes later, he was still on the phone and we had to leave to get the boys to swimming lessons. We wanted to keep their routine happening and I thought it would help to give them something else to think about before they headed off to bed and it would have been too late to go to the hospital after the swimming lesson. As Greg walked us to the car, he was texting the office again. I was not happy, I felt the boys needed to spend quality time with him and work could wait. After the boys went to bed I cried. I went to visit Greg on my own on the Thursday, the boys weren't keen to go back to the hospital, so they had a play date after school. Friday after school the boys and I went back in, this time I took a deck of cards so that we could play fish and snap together as a family. It worked much better. My Dad came into the hospital before we left, I can't recall exactly what happened, but I know that Greg said something that both Dad and I thought was very strange. Saturday we brought him home, tiredness had set in by now and he slept most of the rest of the weekend, with no energy to really participate in any activity. Monday he went to work. ... View more