As the day approaches for Greg's scan, the first since completing treatment, our anxiety levels increase dramatically. We are each silently processing, reservedly hoping and fearfully imagining what the results will tell us. Our poor two boys have to deal with a 'more stressed out than usual' Mum and Dad, it is so cruel how this impacts all areas of our lives. Thursday Nov 5: Usually Greg and I are in separate cars and meet at the oncologist's rooms (as Greg is coming from work and I am coming from home), this time we are travelling together as Greg had left his car at work yesterday. Have we jinxed ourselves by doing something different?, questions, always questions. We arrive early, we need to collect the scans and report from SKG, we have time to pay some bills at SKG and at the hospital next door. While we are waiting for the accounts woman to sort her 'stuff' we read the report. Greg makes the comment, that doesn't look good. We have a short wait, maybe 15 mins, the waiting room is empty bar us and then more cancer warriors arrive and take their seat. Neither of us have remembered to bring a book and the magazines are the same that were there at our last visit. Our name is called and we walk the path of trepidation into the room where our life changed 7 1/2 months ago. The usual questions are asked, How is your weight? (Stable) Any trouble swallowing? (No) Any numbness in your hands/feet? (some in my fingers and my feet constantly feel like I am wearing masseur sandals) Tinnitus still there? (yes, varies in intensity). Let's take a look at the scans shall we? Subconciously we take a deep breath......... The primary oesophageal tumour is only a fuzzy outline, it is practically gone. WONDERFUL (We were pretty much expecting that result based on previous scans). The abdominal stuff had not changed, no increase and no decrease. Greg is disappointed. He had expected that would be gone too (or at least very little left). For the first time the oncologist tells us that there is a 'possibility' that it is scar tissue and not cancer, huh??? He also says there is the possibility that it is cancer but it is dormant and he also admits that as the last scan was taken in August, part way through Greg's 5th cycle of chemo and then he has had the 6th round since, that the chemo has just held it at bay. Result is, we need another scan to see what shows up then before we can tell you what is happening. GREAT, more inconclusive results. Greg says that he was expecting there to be less than 10% of cancer left in his body. (who knows where he got that figure from, as the reduction previously had not been anywhere close to suggest that was likely). Greg asks if there is anything he can do/take to minimize the neuropathy and/or tinnitus. Answer, No. I ask what his prognosis would be now, answer, "I would be guessing, but the average patient would be 18 months". Again, no change to that! I raise the question of having a PET scan done, Onc. answers "we wouldn't get any useful information from that". I ask why, he answers, "Greg is generally well, he can't tolerate any more treatment at present, if we were to find something, there is nothing that we can do about it, so what would we gain?" That is the only answer that I could come up with, but I wanted to hear it from him to see if it was the same. He agreed that in the future it may be appropriate to have one. At this point, he was winding things up, but there was one issue that had not been discussed. I had given Greg and the Onc. the opportunity to raise it and neither had mentioned it, so I said "If you won't say anything, I will. We read the report before we came in and it mentions something about the lungs, what is that about? The report says that two ill-defined nodes of 3mm and 5mm are showing on the right lung base and a lesion of 4mm on the left lung base. They are indeterminate for metastatic disease but had not been present on the previous scan. In the comment it says 'require ongoing follow-up.' The oncologist says they are very small and we don't know yet what it means as it is too early to tell. He is not overly concerned and advises he will request a chest/abdomen/pelvic CT scan for the next scan which will give a better picture of the lungs than what we have. Previous scans have been abdo/pelvic. I ask if it were to be cancer, what symptoms could we expect, he replies "shortness of breath and coughing". Greg has not said a word. We leave the office and head to the reception desk to pay our bill and book the next CT scan and appt. 8 weeks was going to bring us to 29th December, so we brought it forward to 22nd December (same day as Greg has a port flush booked). Timing not perfect just before Christmas, but I figure we will be worrying about it anyway, so why put ourselves through torture of waiting, we may as well know what we are dealing with. As we walk along the corridor Greg is feeling (or at least appearing) very defeated. The results were not what he was expecting and not close to what he had prepared himself for. I, on the other hand, had gone into the appt expecting that the oesophageal tumour was likely to be well under control, maybe some reduction in the abdominal stuff and open to the possibility (but desperately hoping there wasn't) of something new showing up. I suggest we get a coffee downstairs, he has another read of the report and then dials our friend M from Sydney (who happens to be in Brisbane at the time!). I am stunned to hear that he only mentions the oesophageal and abdominal results but does not even mention the new information regarding the lungs. As he is talking, I point to the paragraph on the report and he shakes his head. When he completes the call I ask why he didn't mention it. His response is that the onc. isn't concerned so he is not going to mention it. Is this denial? Is it shock? Is it realistic? Is it normal? ... View more

September 2009, We've got through the hospitalization and the high temps, no clear reason found for what was causing them. No results confirmed that it was swine flu. We have 10 days before the sixth and final round of chemo is scheduled to start. Guess what, Greg is suffering from tinnitus really bad. It is something he is asked at each appt and whilst it has always been there (even before chemo) it is now a constant and has gone up in intensity. On Friday,Greg tells me he is considering not going through with the final round. I suggest it is something that we need to talk about with the oncologist before he makes a final decision. By Tuesday he is telling me that it has lessened, I immediately know that he will be doing the chemo as once he tells the onc. that it has reduced then it will be a case of 'lets just get this done'. I can't go to the pre-chemo appt with him as I have my 12mth old nephew for the day,,,, the weather is crap and it's going to be a standard appt anyway. The appt time is 2ish and Greg rings me while I am at the school picking up the boys. There is a gale blowing, noise all around and my nephew is trying to take my phone - I can barely hear a word he is saying. Later that night, when the kids are in bed, I ask him to tell me about the appt. The onc. had asked for a rating out of 10 on the tinnitus. Greg answered 3! I couldn't believe it, why did you say 3, he's not going to take you seriously when you only say 3. "how would you know what I am feeling, on their scale it is probably only a 3. I said it's not their scale, it's how bad it is to you that matters. He is not going to think it is very bad if you say 3, there is still a long way to get to a 10 being the worst it can be. Greg then turned the tv up to a considerably high volume and says "so you think that's not loud". I answered it is very loud and he said well that is what I have all the time. I said then you need to tell the onc. that. Well, I copped another load of abuse about how I didn't know what he was feeling etc etc. He went ahead with the chemo cycle, it was relatively minor in terms of side effects, lethargy being the worst. Now it's over. What now? We have an appt with the O on 9th October and expect that the CT scan will happen the following week. At the appt, Greg admits that he is losing feeling in his fingertips and that the soles of his feet feel like he is wearing the old masseur sandals constantly. The tinnitus is still a problem too. The onc. wants to wait 2 months to have the CT scan, we say we are not comfortable with that. He says you have only just had one, we say no it was 2 months ago. He agrees to schedule it for November 4th. I ask about having a PET scan, as we have never had a full body scan done. The onc. says we wouldn't get any information from one and then clarified it by saying 'wouldn't get any useful information'. I don't push it further, we will wait and see what the CT scan shows. I wonder about his comment about 'useful information', all I can think of is, he doesn't see the point in doing it as Greg can't have any more treatment, so if something were to show up on it, we wouldn't be able to do anything about it and what then is the value of knowing? ... View more

August 09. Greg has a pre-treatment appt booked with the oncologist (O) and after the last appointment I am feeling that it is not worth me making the effort to:- organize someone else to pick up the kids, drive the hour or so trip and sit waiting for the always late O to call us in and potentially cop another "I don't exist" scenario. I feel guilty that I am even considering not going, I feel that it is lazy and selfish and not supportive of Greg. But I also know that it is a 'routine' appointment that only takes 5 minutes, there are no results to discuss and no new issues arising. I decide that I am not going to go. The appt is standard and over quickly as expected and I didn't miss anything (or so I am told) as expected. Chemo is booked for the following Monday morning. I make arrangements for the kids to be dropped off at a friends to be taken to school so that we can get to the hospital in time. We both have books to read, I have some sudoku puzzles to do and Greg has his i-pod. We settle in for the next 6 hours. Our usual oncology nurse 'the G' is taking Greg's blood pressure, standard procedure, and comments that it is very high. He tries a different machine, again it is high. He chastises Greg for not taking his blood pressure medication. We both say "He isn't on any". G advises us that Greg should see his GP urgently as the reading was 'stroke territory'. Bloody great! another thing to add to the list of worries. Greg's dad had multiple minor strokes from the age of 50 that gradually killed off brain cells, resulting in a vegetative state for his last two years of 'life', if you can call it that. A stroke had always been my first thought of what would take Greg. Now we were hearing that it was a real possibility. The chemo and hydration is completed and Greg is connected to the pump and we can leave. While we are driving home, Greg rings his GP to make an appt for the Thursday, I plead with him to make it earlier, but he refuses. Thursday comes and he sees the GP, gets his new medication and I relax just a little. The next appt with the O is due, our youngest son is not well so again I stay home. Am I avoiding the O?? A date is set for the next scan. Anxiety starts to build. The scan occurs during the middle of Greg's 5th round of chemo. This is the scan that Greg had always said he would take 'notice' of, as it would show a 'trend'. Following these results, he was going to make decisions about the future. The scan shows further reduction in the primary oseophageal tumour and also some reduction in the abdomenal/peritoneal stuff. The O isn't as upbeat as he had been after the last scan but is still positive about the result and comments that Greg has responded faster than he would have expected. His prognosis remains the same, 18 months. Overall, again a good result, best we could be hoping for, but still doesn't feel like a win/win. Greg completes his treatment via the pump the following day, Friday and comes home feeling very tired. This time his mouth didn't get too sore, we have found a product that is helping with that discomfort. Monday arrives, Greg has gone to work, I have taken the boys to school, everything is normal! ........Agh spoke to soon! I receive a phone call from a mum at school who has a child in our eldest son's (JK) class. She asks me if I had heard that two of the children from the class are suspected to have swine flu. GREAT. No I hadn't heard, she tells me one has been rushed to hospital and the other is at home. I make a call to the mum whose daughter is at home, hers is a precautionary step, she is not badly suffering but the mum will keep me posted. I decide it is too risky to leave the boys in an environment that we know has been exposed, so I go back to the school and pick them up. I have to say that I was disappointed that the school (who are fully aware of our situation) had not bothered to notify me of the potential risk so that I could make my own decision as to what I did. A parent of a child with asthma was notified but we weren't. That stinks.......... anyway I tell them I will keep the boys home until we know what is going on. Later that day I am rung by the parent I had spoken to earlier whose daughter was at home, telling me that the other girl had been 'confirmed' as having swine flu. I feel that I have made the right decision and kept the possible exposure to a minimum. Wednesday night, Greg comes home from work feeling very cold and rugs himself up with thick jackets etc. I have a feel of his forehead and he is burning up, we take his temperature and it is 39.8C. GREAT. Thursday morning Greg goes to work and also goes to see his GP. She gives him a prescription for antibiotics and tamiflu as a precaution and takes swabs etc for testing. He is feeling lousy and starts to drive home but 20 mins down the road he is violently ill (in his brand new car) and we doubt that he is likely to have got the benefit of any of the tamiflu into his system. I had taken the boys out for the day as we were all sufferring a bit of 'cabin fever' after 3 days at home. I had sent Greg a text earlier asking what the Dr had said and when I hadn't heard from him after an hour or so, I sent him another. He replied saying that he was home in bed, I rang him and told him that we were on our way home and asked if he would rather we stay out a bit longer so that he could get some proper rest. He said yes, so we headed up to my parent's place. When we got home about 4ish, he was still feeling very unwell, his temp was still up at 39.9C, I asked if he had contacted the day unit as our oncologist was on leave that week. He hadn't, so I made a call, told them what had been happening over last 24 hours, they spoke with the 'locum' and told us to come into the hospital so that they could 'check him out'. I start to make calls to arrange someone to watch the boys for us and then pack some things in a bag and we head off to the hospital. I drop Greg off at the main entrance and go off to park the car, planning to meet him at the ward. When I get there, they tell me he hasn't arrived, so I retrace the steps back to the main entrance to discover that he has been 'nabbed' by a semi-emergency doctor and taken for assessment. A chest x-ray is ordered and bloods are taken, the results come back reasonably quickly, the chest is clear, good and his neutraphil count is in the low side of normal. Good. He sees another doctor and eventually he is allowed to go to the oncology ward. By now it is about 8pm, they take more bloods and also take some blood from the port to ensure there is no infection there, given that he had only finished using it 6 days earlier. By 9ish, I leave, he is not happy about being there but I feel better knowing that he is in the best place to receive care if it is needed. I stop at the Maccas drive thru on the way home as I haven't eaten and also I want to be sure that I don't fall asleep on the way home as I am very drained. I decide to make some phone calls even though it is late, just to keep me alert. Friday I don't go into the hospital, we just communicate by phone and text. Saturday afternoon I leave the boys with my sister at Kings Park while I head to the hospital for a visit. We are trying to minimise the cross-contamination possibilities. Greg's temp is still high, but they have told him if it stabilizes for 24 hours, they will let him go home. There is a spike in his temp later on the Saturday afternoon but he phones on Sunday morning saying that he can come home. We go in and collect him. We get home, I head into the study so that the three of them can have some time together. The boys ask if he will play Junior Monopoly with them. He tells them he is too tired. They go away and find me in the study. Next thing he is asking me to log on to the internet banking so that he can do a transfer to buy some shares. The boys are wanting to go on the internet, I explain they can't and next thing he is shouting at them to get out and leave him alone. They leave the room confused and upset. I tell him that they have missed him for the last 3 days and they just want to be with him. He could play Junior Monopoly with them, which does not require much effort and that would satisfy their needs. I feel annoyed that I have to point this out to him. Next thing I know he is outside playing footy with CJ, something that he can only maintain for 5 mins and then he is out of energy! I think he may have felt guilty. Monday morning he goes to work and doesn't get home until 9.30pm!!! I am NOT happy. When will he get that he needs to take things a bit easy?? Tuesday morning he goes off for his 6km walk (not a stroll, not just a walk around the block, it has to be the whole hog!) He heads off to work and I head off to school feeling very frustrated! 3pm I get a phone call while I am picking the boys up, "I'm at home, my temp is 40.0C, I'm about to ring the O, I'll probably need to go to the hospital. What a surprise, not! I start to make calls myself to make arrangements for the boys, I find a mum at school and they can go home with her and I will get my Mum to pick them up from her place (Mum has about 40 min drive to get to us). I get home and Greg tells me he needs to have a blood test, the results will be available in 2 hours and then we ring the O for further instructions. We can do the bloods in Midland which is only 20 mins away. I quickly pack a bag for him and we get in the car, we are barely out of the driveway when he says we should pick up the boys and do the bloods then go up to my parents place to wait for the results. We call the mum who has them, she doesn't answer the first time but we reach her on the second call, the boys are not happy about being picked up when they have only just arrived there. We head into Midland, I phone mum to tell her not to leave home. The bloods are done quickly and we arrive at mum's place with 2 whiny boys who don't understand why they couldn't stay where they were. Greg immediately goes to the spare room to lie down. 2 hours pass and no news. His temp is still up and he has been told not to take anything for it until he has spoken with the O again. He tells me he is feeling very unwell and very cold, but he is still burning up. After 2 1/4 hours I phone the after hours number and leave a message advising what had been done and what was happening. I think I hear Greg talking and go into the room to find that he is on the phone with the O but hadn't bothered to let me know. Greg has a bad cough happening as well and throughout the conversation it is evident. I can hear the O ask how he is feeling. His answer is I just feel hot. What? He told me he was feeling very cold and very unwell. I feel like the O is going to think that I am a drama queen, blowing things out of proportion just to get attention. When all I had done is tell him exactly what Greg had said to me. The oncologist said that he didn't have the blood results yet, that Greg should take some Panadol, get some cough suppressant medication from the chemist and ring him if he deteriorated!! GREAT. I was feeling very frustrated and worried and confused. We all headed home, having attempted to get the cough medication at 5 different pharmacies, 4 of whom were already closed and the fifth that closed its doors after I had walked in! All this before 8pm. WA really is the 'backward' state in relation to shopping hours!! We get home, the boys are tired and confused, Greg is still feeling lousy and is tired, and you know how I am feeling! I get the boys into bed as quickly as possible. When I come out to the family room I quietly tell Greg that I am disappointed that he didn't tell the O what he had told me, that it was just another example of him under-mining me when it came to communicating with the O. Wrong thing to say, I copped a barrage of abuse, telling me I was being silly and over-reacting and then started to deny that he had said something different to the O to what he had said to me. When I pointed out what the difference was, he told me he couldn't remember what he had told the O. When I told him what he had said, he then denied that he had said it. How the hell can you deny it if you don't remember what was said?? By now, we were in a shouting match and our eldest son had appeared at the doorway. I took him back to bed and told him that I was sorry that we had been shouting and explained that we were both feeling tired and frustrated and that I was worried about Daddy not being well. After a short while I felt that he was calm enough to go to sleep. Greg and I didn't speak that night. He went to bed in our room and was snoring away so I slept in the spareroom and just checked on him during the night a few times. Wednesday I took the boys off to school and then had a major vent with some of the mums about how frustrated and anxious I was. Greg stayed home that day and spent most of the day in bed, he could get his temp down to 38.5C using panadol but it didn't go any lower. Thursday was the boys athletics carnival at school. When I had first mentioned the date to Greg he had said that he could probably stay till about 10am (why bother coming at all was my thought) and then he would need to head to work. When he woke up on the Thursday it was quite a chilly and blowy day and whilst the night before he had been planning on coming with us, we both agreed that he probably shouldn't be out in the weather. I set off with the boys, wondering if this was the last carnival he had the opportunity of seeing. By 11.30 he phoned me asking what the weather was like at the school, the sun was out, it was quite pleasant and there was only a very gentle occasional breeze. He decided to come over, I showed him where my chair was (the one that I hadn't even sat in as I had been working in the canteen) and he parked himself there with a bottle of water, some panadol and his thermometer! By the time I had finished with the lunch-time rush, I got to sit with him for maybe 5 minutes and then noticed that our eldest son was looking upset in his faction bay. I was just about to head over there when I saw the faction captain walking past, so I called to her to check on JK for me, as it turns out, she was looking for me as JK had said he wanted me. I left Greg and headed to the faction bay, JK was in tears and just clung to me, he was very upset and eventually I managed to glean from him that he was disappointed that he wasn't in any events in the afternoon as then Daddy couldn't see him participate. I nearly melted on the spot, I had been so concious myself that this 'might' be his one and only opportunity to see them in a sports carnival and now my precious boy was telling me this. I am still not sure exactly how much he 'gets' about what is going on.. Whenever I raise the subject I get very little feedback and certainly more often than not get a 'don't have any questions for you Mum' response. I just sat and held him and let a few tears roll down my face. Just before the carnival was over, he told me to go back to Dad, so I did. By the end of the carnival Greg s temp was 40.0C so he popped some more panadol and headed home to bed. Friday Greg spent the day at home in bed, I had a busy day and was out most of the day. Friday night when he was taking some more panadol I asked what his temp was, 37.5C was the response (the lowest it had been for almost a week). I'm just taking it (panadol) now because when my temp goes up it seems to stay up for a long time. Saturday morning when he woke up, his temp was 36.5. He went to golf!! I wasn't surprised that he went to golf, I had expected it, I was a little concerned about it.......but I know he finds it enjoyable and he deserved some enjoyment and he was in a group where there were carts, so he didn't have to walk the entire course. I thought it won't be too taxing on him and may even do him some good. And, truth be known, I wasn't going to be able to stop him from going anyway. When he arrives home he proceeds to tell me that he didn't get in the cart at all, he walked the whole way! Sat night he is tired! Sunday morning our youngest son CJ is asking him to play footy with him, he plays for a few minutes and then needs to rest, this continues for a while then he announces he is going for a bike ride to the end of the street and back (approx 1.5km round trip). He takes our eldest son JK with him. Ten minutes pass and they are not back, 20 mins pass and they are not back. A friend arrives with a casserole for dinner, she hasn't seen them on the road, 1/2 an hour later, they arrive back having ridden approx 6km. Monday morning he goes for his walk, again 6km and then it is off to work. ... View more