When the sky falls out of your world.

[Mrs_Elton]

Starting from the beginning.........,probably about Dec 08 hubby had been feeling excessively tired, had no energy, just wanted to sleep whenever he wasn't at work. I remember on Christmas day last year he was asleep in the chair and an older Uncle was commenting about how he shouldn't need a 'nanna' nap at his age. In late January he started getting abdominal pain, as well as the fatigue. I told him ne needed to see a Dr as it was more than just 'run down' stuff. Like most 'blokes' he didn't like seeing Drs but he went,a number of blood tests were done, results suggesting that he was anaemic, ahh, that made sense as to why he was so tired. He was put on iron tablets. On the first day of school in Feb 09, our youngest son had started Pre-primary but first week was only half-day sessions, as CJ and I were sitting eating lunch, hubby came home complaining of stomach pain and went to bed. After 3 days he still had the pain and I insisted it wasn't normal and that he should go back to the Dr. He did. Feb 10 he had an ultrasound of his abdomen, nothing showed up to explain pain. Pain continued, referred to gastro-enterologist (gastro-guy) suspecting he may have an ulcer. Hubby didn't think it was likely as he hadn't had problems with reflux etc. Endoscopy booked for Feb 23rd at 7.30am(my Dad's birthday), hubby stayed with my sister overnight and she dropped him to the day surgery and plan was I would drive in to pick him up after I had taken boys to school. I received a call from the day surgery advising he would be ready to be picked up soon (they knew I had a 45 min drive to get there). Just as I am getting into the car, hubby phones and says don't leave yet, they have found an 'abnormal growth' at the base of his oesophagus and want him to have a CT scan which he could do at 1.30pm that day. I start to worry.... What does it mean, what do they think it is? I ask hubby. Worst possible case cancer, I didn't hear what came next.............. I make arrangements for someone else to pick up boys (both full time by now) from school (little did I know that was to become a more regular event) and head in to pick hubby up. When I arrive we are told he will need to have a second endoscopy, this time with an ultrasound attachment at SCGH, it may take 2 weeks for a scan time to be available. Driving along (I'm driving, he is passenger)he is busy on the phone making calls very chatty, upbeat. Between his calls I tell him I didn't catch all of our earlier phone conversation...He says, "just before they started the endoscopy I told the 'gastro-guy' that I needed to have a drink to wash down my first mouthful each time I ate, otherwise I would feel like the food was stuck in my throat" the gastro guy told me he had that problem too and it was not likely to mean anything. When they found the growth, they said worst case scenario, cancer,...........I said I didn't hear what the best case scenario was............"well, there isn't one really" Talk about the wind being knocked out of you........... I drove home on auto-pilot. Hubby off to work as normal next day, mid-morning I receive a phone call advising he has been contacted by SCGH and they have a vacancy for endoscopic ultrasound, so he is catching a cab there and will be need to be picked up around 5.30pm. Again, I need to organize something for the boys, call my mum, she meets me at their swimming lesson after school and will then take them home to her place. I head to the hospital. Hubby not ready, wait, wait, wait. Call me into the recovery ward, first words he says, "I've got good news.. I've got cancer". I try to hide the fear I am feeling, he is very woozy from the anaesthetic, I force a smile and say "we'll get through this". Dr who did procedure comes in, starts talking about 'the team' who will be meeting the next night to discuss hubby's case, gastro-guy,surgeon, radiation therapist and oncologist. What has happened to our world? Gastro-guy appears at the end of the bed, tells us to make an appointment with his office for a week's time. The waiting game starts........... March 3rd. Our appointment time arrives, finally, I have questions, lots of questions. We are told, tumour is at the base of oesophagus, the last 6cm near the junction to the stomach. You will need chemotherapy, in combination with radiotherapy, for about 4 weeks, have a week recovery time, then surgery to remove tumour, 1 week stay in hospital, 4-6 weeks recovery time at home, yes you can work from a lap-top and I will see you in a year for a check-up. You need to phone these people (oncologist, radiation therapist and surgeon) to make appointments with them. All sounds simple? Start making calls, first appointment available with oncologist is March 19, first with radiation therapist March 16 and surgeon March 11. Wrong order than we were told to make them, but we just want to get things started. First lot of frustration, why didn't gastro-guy tell us the week before who he was referring us to and then we might not have had to wait so long. March 11, hubby asks if we are taking 2 cars (so he can go straight to work from appt),I say I prefer that we go in one together, even though it is a little less convenient for him. We set off, drop off boys so they can be delivered to school by someone else, scans in hand we walk into surgeon's office. He 'glances' at the CT scan report and has a feel of hubby's abdomen. "are you ready for me to torture you?" he says. "This is what I see will happen, you'll have chemo/radiation therapy for 6 weeks, then 6 weeks recovery time, eight hours surgery, 2-3 days in intensive care, two weeks in hospital and 3 month recovery at home, no, you won't even feel like looking at a lap-top, you are going to be in major discomfort. At the end of it, you will be left with an 1/8th of your stomach". What the hell just happened? 8 days ago we were looking at about a 12 week lay-up and everything would be fixed. Now we can write off the rest of the year AND make the huge adjustment of living with 1/8th of a stomach. We are in SHOCK. The surgeon tells us he wouldn't even consider doing this operation for anyone older than hubby (54) and it's only because hubby is fit and in good shape and has two young boys at home that he will do it. He says he has done the operation once before on a 40(ish)yr old guy and that was two years ago and he is doing OK. Hubby has broken out in a sweat, very pale, totally floored by the change in treatment plan. He is not good with needles/blood/surgery etc etc (doesn't even like to hear people talking about it or starts to feel nauseus). Surgeon says he wants hubby to have a PET scan and advises us to make an appointment with him for 6 weeks time. Somehow, our legs work so that we can leave his office. Hubby sinks into a chair in the waiting room while I arrange the appointment/payment with receptionist. Tears are streaming down my face. 6 weeks time is 28th April, hubby's birthday, I ask for an appointment for 29th... We make our way downstairs to cafe, I get a drink and something to eat for hubby, he needs some sugar. Neither of us can understand how this can be so different to gastro-guys treatment plan. We head to the car, hubby is not fit to drive, so glad we brought the one car, I put the car onto auto-matic pilot to get us home. Hubby makes some calls to the office to advise he won't be in today and give instructions for what needs to be done in his absence. "Happy Anniversay hon" he says, it is our 15th wedding anniversary the following day, "what a present". As soon as we arrive home, he is on the mobile outside and I make a quick call to my parents. I give a brief run-down of the appt and then add, "don't get rid of Grandpa's hydraulic chair, it sounds like we will need it." My Grandpa had died on March 10 (he was 103) and he had a chair that could raise up and down to make him more comfortable. I get off the phone and I can hear hubby outside making gut-wrenching cries and shouting. I head outside, he is sitting on the front step, I sit beside him, my arm around his shoulder. He sits up and says, "if you need to cry, do it now because I don't want the whole day taken up with crying". I couldn't cry. We receive a phone call from one of his work colleagues/bosses, he is coming out. He arrives, hubby gives him another rundown and then the conversation is turned to everything but 'this cancer'. I make tea and toasted sandwiches. He leaves, my Dad arrives, I make more food and then head off to pick up boys from school. Dad has gone by the time I am home. Can't remember what happened the rest of the day. March 12, our wedding anniversary, no idea right now what gifts we gave, just know hubby went to work. March 14, my birthday, no reason to celebrate. March 15, family reunion with Dad's side of the family, kids had fun at the park, we spent day explaining hubby's situation. March 16, appointment with radiation therapist, organized kids with friends after school, headed off to meet hubby. Called in by (registrar) someone other than the name we had been given. He looks at the scan pictures and the report. He leaves us to take a copy. He is gone a long time. He returns and takes scans with him. He is gone a long time. Not getting a good feeling about this........... He returns with the specialist we were booked to see, registrar sits on the exam table, specialist sits across from us at desk. Specialist advises us that radiation therapy is not an option, the cancer has spread to the abdomen/peritoneal and it would cause more damage than good to go with radiation treatment. He said surgery would not be an option because there were enlarged lymph nodes attached to the aorta and one slip of the scalpel and hubby wouldn't make it off the operating table. Chemo was the only treatment. We are in shock. Hubby finds his voice and says "gastro guy and surgeon had both indicated that treatment was on a curative approach, was this his opinion?" He advised "no, this is a management approach". Our hearts sink. We walk to our cars, I immediately phone the mum who had the our boys and told her. Hubby phoned me and said he didn't want to tell anybody the news until we had seen the oncologist on 19th. I rang my friend back and told her it was confidential. March 17th, hubby goes to work. I have a P & C meeting (I am President) and advise them only that hubby has been diagnosed with cancer and I will stay on at this stage but may need to step down from position before year is out. I haven't told anyone this is not curable. It is tearing me apart, I don't even feel I can have any kind of conversation with people as I will want to talk about it and I promised hubby I wouldn't. March 19th, my Grandpa's funeral and our appt with the oncologist. We have time to go to the service, inwardly I am struggling, I am wondering whose funeral I might be at next. Outwardly I can't talk to anyone, it is so hard. We don't have time to go have a cuppa, perhaps it is easier that way, as we didn't have to try to make conversation. We arrive at the oncologist's rooms. We wait. Hubby's name is called and we enter the office. The oncologist is gentle, he takes time to read the scan report and looks at the scan pictures. He asks hubby about his swallowing, hubby tells him he has probably had to have a mouthful of fluid with the first mouthful of food for the last 18 months. WHAT, how could he have not known that that wasn't normal. Why didn't he get it checked out earlier? Why hadn't I noticed? The only time I had been aware of him having a drink because something was stuck was in November 08 when we were driving down South for a family holiday and he was eating a sausage roll and asked for some water because the pastry had got stuck in his throat. I didn't think anything of it because that had happened to me on the odd occasion. I had no idea that it was happening with any food on the first mouthful. How could I have missed that? The oncologist explained with the spread of the cancer, that hubby's mobility may be affected within 2-3 months if he didn't have treatment. He 'estimated' 6-9 months survival without treatment and hopefully with treatment we could double that (12-18mths). I felt like I had been hit by a train. We advise that the surgeon had told us to have a PET scan done and it was scheduled for March 23rd, oncologist told us not to bother with it. We cancelled it. We somehow find ourselves down in the cafe, not feeling like eating but knowing that we had to eat something, we forced ourselves to eat a sandwich. I told hubby I needed to be able to talk with people about this. He reached for his phone and asked who I wanted to call. I said no-one in particular that moment but I couldn't go through another period of keeping it to ourself. He was OK with that. We hugged each other tightly and then made our way separately to our cars, he heading back to the office, me heading to pick up our eldest son JK from his JETS session. Tears streamed down my face. I picked up my phone and dialled one of our closest friends, M, (who isn't close at all in distance - he is on the other side of the country) and spoke the words "Hubby has cancer, the oncologist has told us without treatment 6-9 months, with treatment hopefully we can double that". Our journey has begun...........

[Versaillon]

Thank you for sharing Mrs Elton. Hopefully, it has brought you some relief to get it all down on paper per se and unload a little. What a story and I can relate on so many levels. I'm sorry to hear about your husbands diagnosis, I can only imagine what you must be feeling. I'm sitting here trying to think of something to say that doesn't sound condescending, superficial or pathetic because both my husband and I feel that, while people mean well, when they tell us to stay strong, it doesn't help. I think I failed but know that there are people here are standing where you stand and you aren't alone. Take care Jo

[Mrs_Elton]

Thanks Jo, I totally agree with the 'stay strong' bit. Easy to say and something you want to do, but extremely hard to carry out most of the time, let alone all of the time! I know when people say whatever it is that makes them feel better, like they've done their duty by asking how things are going, that MOST of the time they genuinely care. There are plenty of others who just don't know what to say, so they say as little as possible, (if anything). I know people care, I need to FEEL that people care. So many times I have said to people, there is very little that you can say to me that is going to upset me more than what I already am. My world has been turned upside down and if I need to cry then I should. Anything people say to me that may make me cry is not a problem to me, it's a release for me, but it seems to be a problem to them. So instead they choose to say nothing and sometimes even avoid having to talk with me one to one. I am a person who needs to talk, needs to 'let out' stuff so that I don't bottle it all up and end up with so much pressure that there is an almighty explosion! I have suggested to various people, if they don't feel comfortable talking with me then they could send a text or email, just to let me know they are thinking of me. Even that doesn't get through!!! I am so glad that I have found this site, as I CAN FEEL that people care. Thanks so much, will have to add the next installment to my blog, when I find a spare hour!!! Best wishes to you and Rob, Jill.