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...........
... View more
Glad to hear that you are feeling ok within yourself.
Enjoy your looooonnnnnnnggg weekend and the time spent with your husband. It would be very hard with your family being so far away.
I am sure the grandies will be looking forward to seeing you again when you get home. My boys saw my mum today for the first time in 3 weeks (she was lucky enough to be away cruising the Rhine for work) and it is always special to see that little re-union.
... View more
Thanks Sham and nice to meet you too! You are obviously an incredible and special person to be a parent of 7 children! It must be very busy in your house and tough, tough enough without having to add cancer to the mix. I take my hat off to you!
I feel very strongly about keeping the teachers/school informed, they are my eyes and my ears when I am not with the boys. We are hoping to pick up on any changes quickly and address them before they become bigger problems. So far so good!
I have realized that I need to have time for me and have started putting things in place so that that can happen. Tuesday I spent the majority of the day on the couch watching The Thorn Birds on DVD, thoroughly selfish and thoroughly enjoyed! It is an old favourite of mine and gave me a trip down memory lane and a brief escape from the 'real world'!
Good luck with your appointment tomorrow (hope that is a current note) and take care of you........
... View more
Thanks Sangeeta, that was really helpful.
I have kept both our boys teachers informed every step of the way and as ours is a relatively small school, most of the other staff are aware of our situation too.
The school is a 'safe' place for me and the boys. I have spent a lot of time there over the last 3 years with my involvement with the P & C Assoc. so am well-known amongst the staff (for good reasons!) and most of the students know who I am as well as I often speak at assemblies. I have seen our school chaplain a few times earlier on in the journey, but not so much of late. We have discussed her speaking with the boys individually just to let them know they have someone they can talk to, but it hasn't happened yet.
When I first started telling other mums of hubby's diagnosis and got the usual 'If there's anything I can do to help' speech, I made a 'register' with columns for name/phone number/mobile/days not available and asked them to complete it. I had (or could have got) most of their numbers but thought by having them complete it, 1, it meant they did the work and not me! and 2, showed them I was taking their offer seriously. I haven't had to call on any of them for help too many times so far, hubby has a 'port' fitted so the first day of treatment was always a 6-7 hr day which would mean I may need someone to take and collect the boys from school, We've had the odd oncologist appt that has been outside of school hours but fortunately most of them have been middle of the day sort of timing which hasn't interfered with the boys schedules.
We spent 6 days on the Gold Coast prior to hubby starting treatment as we weren't sure how his mobility/energy would be once it got started. We're from WA so it's not a short trip for us! We really did enjoy it (well I mostly did, I guess I was acutely aware of why we were doing the trip and that took a little of the shine off it at times for me).
We have been fortunate that hubby has coped with the chemo fairly well all things considered. His first 3 cycles he had a very tender mouth and his tongue would swell up, I mean really swell up, which would make talking/eating etc very difficult. Luckily we have a friend who is a dentist who was able to suggest another product to the one our oncologist had suggested and it was much more effective in providing relief. Tinnitus is the biggest issue in terms of side effects now, he has completed his 6 chemo cycles, obviously his energy levels are low but he LOOKS normal. He always has looked normal, to look at him you would not know there is anything wrong. I sometimes think it is causing great confusion to our boys that Daddy looks just the same and yet he isn't the same.
It is so hard to fathom as an adult, so it can't be easy for our children. I am grateful that he is so 'well' and grateful that our boys don't have to see him disappearing before their eyes,......but I have to wonder, What will the future hold?
Strength and courage to you all.
... View more
Hey Sailor and Harker,
Thanks for your feedback (no pun intended H!!), hubby has been to the GP today who has suggested a nasal spray and the old head under the towel with the steaming euclayptus bowl!! Hasn't helped yet!
At least now I know he can't blame me for keeping him awake by snoring!!! and I get to watch my tv shows while he working on his laptop and it doesn't disturb him one iota!
... View more
Wow Alana, you are amazing! I really admire your strength and courage. I hope it helped to 'purge', you certainly helped me to put things into perspective a bit more. Have been having a few down days lately, but just starting to pick up again, as we all do.
I was only thinking last night, as I lay awake beside my sleeping hubby, thinking, thinking, thinking........how many others are doing the same?! I have also said the same thing in relation to crying, 'I'm scared to start as I might not ever stop'. Still, I have cried, only one really gut-wrenching cry and I did manage to stop and life goes on..........or the resemblance of what life was before this horrible disease came into our lives.
Have an absolute ball on Saturday night, and congrats on surpassing your fundraising goal.
Take care of you.
... View more
Thanks for the welcome Julie,
I have spoken with various 'professionals', I was hoping to get some feed-back from 'real' people who have 'walked the walk' not just 'talked the talk', so to speak!!
As a mum and a wife, like most women, my kids and my hubby are at the top of my list and I'm a distant third! I am also highly aware that I need to share my own fears, concerns, hopes and rollercoaster ride with other people in a supportive environment just to try and keep some sanity in the mix!
I am and always have been the kind of person who finds it best to talk about things rather than pretend everything is OK. I do have some school mums who I can talk to but I am concious of not wanting to 'wear out' their ears or have them turn away because they don't know how to 'handle me'!!
Having read several of the posts on this site, I am sure I will find this is a 'safe and comforting' place to visit and share the ups and downs.
Best wishes to you and yours,
... View more
I can't help you with your questions, I am 'the partner' of a cancer sufferer (don't feel like I am a carer just yet). I just wanted to say I hope that you can find some answers here and, if nothing else, that you feel the caring and warmth of others to take away the sense of isolation that can be overwhelming.
Best wishes to you, take one day at a time.
... View more
Hi, my husband is the same, making jokes or brushing it aside is his usual response regarding his cancer. During the time he was having chemo he wanted to focus solely on being positive and getting through the treatment as best he could. He didn't want to discuss anything until we had results from CT scan after 4th round, then when those results were through and the prognosis hadn't changed, he didn't discuss anything anyway! He has improved 'slightly' since he completed his treatment, he could only have 6 rounds of chemo and that has finished now. We are waiting for another scan in early November to see what we are dealing with now.
I guess we all only have a certain amount of energy to use and we each have to use it in the most effective way possible, and it will be different for the patient than it is for us the carer.
Best of luck with your fundraiser on Saturday 24th October (our youngest son turns 6 so it is a special day for us too), well done on exceeding your target and have a ball in your pink wig!!
Good luck with your
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.