Results are in

[Mrs_Elton]

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?

[harker]

Yes. Yes. Yes. Yes. And in addition: One of the few thing Greg can control at the moment is information about his condition. You have information needs, too, but the friend doesn't. Work out a way, together, for both of you to get the information you need. Then what he says to a friend won't rankle with you so much.

[Mrs_Elton]

Thanks harker, I've had three 'into bed after midnight' nights in a row, so forgive me if the brain isn't processing as effectively as it should! I don't follow what you mean by 'for both of you to get the information you need.' I wasn't looking for information from our friend. I was confused why Greg wouldn't mention it as part of the conversation, he is a very close friend to both of us. Like I said, I am very tired so I may be missing the mark by a long shot here, I'd appreciate your clarification. Anything to help me 'minimise the rankle' is appreciated!!! Will head off to bed now before I turn into a pumpkin!

[harker]

You needed information from the oncologist, not your friend. That's what I meant to say, but I was clumsy about it. My wife and I have had to work through the same things in relation to my condition (multiple myeloma). I tend to go with what the oncologist has to say (given that I do trust him) so I don't independently come to a view about a report. My wife sees it differently. She feels left out if I put the phone down and say 'All fine' or 'no change' when she wants to know the answer to a particular question that had occurred to her. It has been a good power struggle to work through as I am now better able to consider her information needs and at the same time still say 'It's my illness, I'll decide how much to say'. I also think that she's better able to see that I process things differently to her. Seeing it as an information need helped me. She's the one who identified that as the issue. H

[bev]

Mrs Elton, Hope you get some answers to your questions. We can never ask enough, though I feel at times it was hard to know what to ask. Wishing you and your husband kind thoughts.

[Mrs_Elton]

Harker You are a very wise man and I appreciate the sharing of your wisdom and experience. Your wife sounds pretty wise too!! We both trust the oncologist, even though at times we find it highly frustrating that there are no 'conclusive' answers to our questions. The "let's wait and see what the next scan shows" is a line we hear too often!! Men and women definitely seem to process things differently, I guess men really are from Mars and women from Venus!! Mrs Elton