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".
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.
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.