Start of treatment, nothing went to plan.

[Mrs_Elton]

So, our life as we knew it has changed forever. We have a diagnosis of cancer and a prognosis of hopefully 18 months. What now? As I drive home alone from that first appointment with the oncologist, I am devastated. Greg (hubby) has gone back to work to tell his colleagues. I dial our good friend M's number. He is expecting my call, he lost his partner to secondary liver cancer 2 1/2 years earlier after a 6-8 week battle. I know that he will understand exactly how I am feeling. I can't remember exactly what our conversation was, but I know that it helped because he had been there. His words were not empty. I think I rang my Dad next, this was the day of my Grandpa's funeral, we had been to the service but had to leave immediately it was finished to get to the oncologist appt. The rest of the extended family were at my parent's place for lunch. I didn't want to speak to Mum as she had enough on her plate that day, so I dialled Dad's number and asked him to bring any leftovers out to our place for dinner as we needed to talk with him and Mum. I didn't say anything about the appt to him then, but he knew that it hadn't been good news. I remember ringing the school and speaking with the Principal to advise him that we would need access to the school pyschologist and/or chaplain. By now I had arrived at my eldest son's JETS class to pick him up. I put up my 'shield' and hugged him tightly and we drove to the friend who had picked up my youngest son from school. I remember silently crying in her bathroom, I wasn't ready to cry in front of the boys yet. Mum and Dad arrived with dinner, we talked about everything else but the cancer, because we wanted the boys to be in bed before we told them the prognosis. We sat outside on our patio and gave them the rundown. We hugged each other and we cried together. Mum and Dad prayed for us, it was what they needed to do and we let them. They didn't stay too long after that. Greg went to bed and I started to ring my two sisters and my brother. The phone calls were short, no-one knew what to say. By this time it was about 10pm, I could see lights on at our neighbours so I rang them too. I seem to recall that I slept reasonably well that night, all things considered. I think I woke early the next day, it was a Friday and I was grateful that I only had one day left in the week to get the boys off to school. I made arrangements to speak with both the boys teachers and the Principal about the new information. They have been fantastic throughout. I started to tell other Mums at school of the prognosis. The more I told it, the less emotional I became while telling it. It wasn't that it didn't hurt to tell it, more that I got into a kind of rythym when I told it because I was saying it so often. Within a week, Greg's work had said they wanted to send us all to the Gold Coast for a family holiday before he started treatment. WOW! what a generous offer (we're from WA so the airfares aren't the cheapest!!) His work were going to pay for the accommodation as well, but my parent's were able to book an apartment through time share which was absolutely fantastic. Knowing that work was only paying for the flights made it easier to accept the generous offer. We decided we would tack on a trip to Sydney at the end of it so that we could catch up with friends there too. It was very exciting, but for me, knowing why we were doing it, it was very emotional too. We had a wonderful time, did 4 worlds in 4 days and then we had a day of rest! Managed to catch up with some old travelling friends who live in Brisbane that we had met on a European coach tour we did in 1998, which was great. We headed to Sydney on Good Friday to stay with our good friend M, who we met on the same tour. S from Melbourne flew up to join us and it was really special spending time with them. S & M took me under their wing (while Greg and the boys did a tour of the Olympic stadium) and shared their concerns for me and what we were facing. These are people we met 11 years ago and only spent 19 days with but they have been better friends to us than some people we have known for years. It is just such a shame they are on the other side of the country. Our farewell at the airport was very emotional. The week after we got home, Greg had his port fitted. Welcome back to the real world! 5 days later we had a family picnic with all of my immediate family to have some photos taken. It was a lovely April day and we were in beautiful spot on the Swan River. Mum had organized for someone from her church to come and take a family group photo and then photos of each family too. Greg is not smiling in one of them, he was very anxious about starting chemo in two days. We sang Happy Birthday to him, as his birthday was the day he started chemo. What a birthday present. I shed some tears and held back more wondering how many more birthdays there would be. The night before his chemo starts we take the boys to my parent's place. We have an hour travelling time in the morning and need to be there by 8am, so the boys have a sleepover at nanna and grandad's place. 28th April, the alarm goes off, but we are already awake. We drive in silence to the hospital, not sure of what is ahead of us. Greg is not the best with needles/hospitals/surgery/medical stuff in general, he feels very queasy when there is any kind of discussion/vision on tv etc. We arrive at the day suite, Greg chooses his chair and they shave the area around the port, as they insert the needle into the port Greg is struggling. They try to flush the port. Nothing happens. The nurse starts to jibber about how she might not have the needle in correctly and asks for the sister to come and check. Greg is more tense. The sister tries to flush it, the syringe won't budge, too much pressure. She recommends they take that needle out and try a bigger/longer one, she is sure it is in the middle of the port but just to be sure. They take the first needle out, Greg takes a deep breath and they push in the new longer one. He is so tense. Again, they can't get any movement with the syringe. Great start, not.! The sister decides it is a problem with the port and organizes for a chest x-ray to be done, Greg is not happy. We set off down to have the x-ray done, it confirms that the catheter leading from the port is not in the right position. They can't use the port this time, so he will have to have a canula in the arm. The nurse has said that once the canula is in he can't leave the hospital, I heard this, Greg didn't. They get it in and start his hydration. They tell us they will organize a bed on the ward for him. I have tried to tell him he will be there for his entire 5 days of treatment, but he insists he is only there for the day. The bed is ready, we take our stuff and head to room 10. The ward nurse comes in and asks where his pj's, toiletries etc are. It starts to sink in. This was not the plan. He is NOT HAPPY. I head home to collect everything he will need for his stay in hospital. I get back to the hospital 3 hours later and he is just getting his first dose of chemo. I sit with him till approx 7.00pm and then head to my parent's place to see the boys and stay the night. The boys are ready for bed and I tuck them in after briefly explaining that Daddy had to stay at the hospital to have the medicine because the port didn't work. Our eldest son, JK, was extremely upset that Daddy had to be in hospital on his birthday. I sat with him and talked with him and cried with him and ended up reading a meditation story to him to calm him down so that he could sleep. an hour and a half later he was calm and I was exhausted. I did get some sleep that night and then headed off to take the boys to school. In the afternoon picked them up early and took them into the hospital, Greg told them about the room and showed them his canula and then had a phone call from work. 45 minutes later, he was still on the phone and we had to leave to get the boys to swimming lessons. We wanted to keep their routine happening and I thought it would help to give them something else to think about before they headed off to bed and it would have been too late to go to the hospital after the swimming lesson. As Greg walked us to the car, he was texting the office again. I was not happy, I felt the boys needed to spend quality time with him and work could wait. After the boys went to bed I cried. I went to visit Greg on my own on the Thursday, the boys weren't keen to go back to the hospital, so they had a play date after school. Friday after school the boys and I went back in, this time I took a deck of cards so that we could play fish and snap together as a family. It worked much better. My Dad came into the hospital before we left, I can't recall exactly what happened, but I know that Greg said something that both Dad and I thought was very strange. Saturday we brought him home, tiredness had set in by now and he slept most of the rest of the weekend, with no energy to really participate in any activity. Monday he went to work.

[WishingStar]

I hope you and your family stay positive and together. I hope the blogging helped to get it all out - it certainly helped me, Hugs, Nickij

[samex]

Hi Mrs Elton, Yes our lives have all changed forever and as a survivor I often wonder about the carers. It sounds as though the blogging has helped you - I know that it helped me to clarify things when they weren't going right. I only wish I had found it while on treatment. You sound as though you have a wonderful family and I know how hard it is when good friends are so far away. Talk to the friend who has been there. Possibly my greatest comfort was from my friend who lost her husband and a friend who was experiencing chemo at the same time. They get it. Take each day as it comes and be sure to find at least a little time for yourself at some point. Good luck, Samex

[Mrs_Elton]

Hi Samex, Thanks, yes the blogging is a wonderful opportunity to 'get it out'. I am really grateful that I came across this site now, as I can feel the difference it has made to me in just a couple of weeks. Knowing that I can offload,( whether other people read my stuff, or don't and whether they reply or not), is such a relief or maybe release of the load. I have found it so helpful that I have recommended it to a number of people I know who have had cancer interfere in their lives. It is brilliant! Hope you had a wonderful time away and that getting back to 'the real world' isn't too much of a drag! Best wishes, Mrs Elton