How will we cope with this?

Thursday 29 March 2012
After nearly three months waiting Jon had his appointment with the consultant today. He didn't want me to go with him and I was surprised when he was back so quickly.
He came into the kitchen and I looked at him and asked how it went. He couldn't speak and went out onto the deck. He was so upset and all I could do was hug him. My very worst fears were confirmed without him speaking a word.
When he could speak he told me that they would arrange a colonoscopy, a CT scan and an MRI in about two weeks also radiotherapy followed by surgery. Under the circumstances I think that is too long so I suggested we pay privately to have it done and Jon agreed.
I phoned the surgery and really wanted to speak to the GP who I am so angry with. I want to know why it took so long to get him seen and even then only a 'semi urgent' appointment. With my little medical secretary knowledge I know it should have been 'urgent' - but that can wait. The nurse I spoke to suggested I call and speak to the hospital and the consultant.
I called and spoke to the nurse who had seen Jon this morning and understanding my distress she said she would speak to the consultant and call me back. Five minutes later she called to say the consultant said it would now be better to stay in the public system. I was choked as two weeks seems such a long time to wait. The consultant kindly came and spoke to me and said although it often appears that they are complacent in these cases all the wheels where now in motion and it would be better to keep with that route as he did not think two weeks would make a difference - Do I read more into that???? He said that Jon had obviously had the tumour for some months. I now feel so guilty for not making him go to the doctor back in October when I noticed blood on some paper that had not flushed away after he had been to the loo. He has been so healthy, not tired, eats well and goes to the gym so I thought he was OK.
We are both in a terrible state of shock and today has been the longest day of my life. I phoned my friend Viv and she was very kind and told me to be positive but it is so hard. I keep thinking of all the things we had planned and how life is now really good and he has worked so hard to get us to this point. However, I would give it all up for him to be healthy.
My reaction is being unable to eat so in a way all the pounds I have gained since Christmas are coming in useful. Jon managed to eat lunch and we sat on the deck looking at the most beautiful view. How can such a beautiful day bring such bad news?
Jon spent the afternoon in the garden cutting the grass and generally making it all tidy and for him it was the right thing to do. I spent the afternoon ironing and for me that was the right thing to do.
Where do we go from here? I don't know. What and when do we tell the girls? Heather knew something was wrong when she was here. What does he tell work? The owner is not good at keeping quiet and we don't want it to get back to Heather via some of the girls in the office who she is in touch with. I think the best thing is to say he needs more tests and when we have a definite diagnosis and treatment plan then we can tell the girls first and everyone else after. I can't believe this is happening.
We had dinner, well Jon did! I really don't know how he is managing to eat I can't get much down at the moment. I feel like I want to go out into the garden and scream and scream till it all goes away, I am so frightened as to what Jon is going to have to go through but if it works it will be worth it. I have to keep reminding myself it is all about him and to put my feeling to one side.
Friday 30 March
I felt so ill this morning after a really terrible night. I woke at 1.40 and then went back to sleep but woke again about 2.30  and then could just not get back to sleep. Jon seemed to be asleep for most of the time though. I was glad when it was time to get up.
Jon was very emotional when he was leaving for work and commented 'we are a long way from home'. I think he is worried about me and being on my own here but I do have good friends here.
After taking Tot out I went to the Red Cross and as soon as I walked in Les knew something was wrong so I told her and Sharon and they were so kind and both hugged me and say I have to be positive. They both could not believe it as they said Jon looked so well at the bbq last week.
It was good to go to the shop as it kept my mind off things a little. I still can't eat and even my coffee I could only drink half. I need to eat though as I am feeling pretty awful and very light headed.
I stayed at the shop till nearly 1.00 and then came home. I had a crispbread and a bit of cheese and then just sat and watched TV.
The hospital called to ask if Jon could make the MRI appointment for next Wednesday at 12.00 so I said yes he could and I am going to go to every appointment regardless of what he says.
I called Jon but he was still in the board meeting but he did call me back later and said he had a meeting for Wednesday but would change it. He told Mark (MD) that he needs tests and will need time off but that is all he said to him. He also told Rachel, HR but told her if Mark says anything to make sure nothing is said to Heather until we get round to telling them.
Jon came home early and said he had had a 'can't be bothered' kind of day and said he was very short with them at the board meeting but I think it is only to be expected.
We just sat around and watched some TV and I have been looking at diets for cancer patients to see if I can help in that way.
We had fish and chips for dinner but neither of us could eat it all. It was then TV for the rest of the night. Depending on how he feels tomorrow and what the weather is like we might go out to Whangamata for the day.
Saturday 31 March
I slept a little better last night but we were still up early. When I wake I have a few lovely minutes of happiness before I remember what is happening and then I feel so desperate. We have had such a lovely three years here and we had so many plans and so many places we wanted to visit. I managed a bit of cereal for breakfast and Jon ate his normal breakfast.
We spent a nice few hours in Whangamata at the Beach Hop and it was the right thing to do as it took our minds off things and looking at the cars was good. I took a photo of Jon and not sure if it is just me or he does look tired but there is certainly a sadness in his eyes.
When we got back we had the letter for his MRI on Wednesday. It feels good now that we can see something is going to happen.
Jon went and did some gardening. I think it helps him to go out there and not sure what he would do if we didn't have it.
I cooked dinner and Jon enjoyed it but I couldn't eat. I told Jon I didn't like it as I don't want him to start worrying about me. We had some cheese after dinner which was good.
I really don't think he has any idea what is in store for him with the treatment. If he does he is doing a very good job of covering it up. I hope it is a case of ignorance is bliss.
Sunday 1 April
I had another really bad night last night in fact, I don't think I will ever sleep well again.
I cooked scrambled eggs and toast for breakfast and Jon managed to eat it all and I struggled with mine again.
After giving Tot a bath we took her out for a walk and then went to the local garden centre for coffee and we bought some silver beet seedlings to plant, green leaf veg are good for you.
Jon spent most of the day gardening and making it all look good for next summer, I watched TV
I cooked dinner and Jon asked me why I was not eating these days and I told him I was very worried about him and he said he is worried, too. I told him worry always effects my tummy which he knows anyway.
We watched TV and Heather called but as our clocks have changed it was a bit late and so after an hour of chatting Jon was ready for bed and we didn't get to watch the end of our programme.
I keep considering all the options and different things that the consultant might tell us and I am just going round in circles but really until Jon has had all the tests and the results come in we really can't decide anything.
Monday 2 April
After another bad night I was glad when it was time to get up as we had both been awake since 4.00 when Totty woke me for the second time with her itchy bottom and I had been in a pretty good sleep till then well, since the last time I woke at 1.00!
Jon said he would go to the gym after work as he needed to keep fit now more than ever.
I spent the morning reading about how diet can help cancer and trying to feel useful. I found a good website which is here in NZ www.alternative-cancer-care.com and the people are based in Whangamata where we were on Saturday. Les called me and we arranged to meet at the health food shop to get some things for Jon, she knows a lot about nutrition and I need all the help I can get to understand it all.
I had some cheese and a cracker for lunch as I need to keep my strength up as I don't want to get ill and so far I have lost 7lbs so I need to be careful for Jon's sake.
I bought Jon some Flax seed oil which is apparently good mixed with cottage cheese and this allows the oil of the flax to get into the blood stream which in turn goes to the cancer cells and stops them growing so quickly. I also got him a multi vitamin and a high dose vitamin C as his immune system needs to be strong. I went to the supermarket and bought lots of organic fruit and veg and some ground Linseed (Flax) to go with the oil and cottage cheese and you make a sort of smoothie with it. Hopefully, it will help. After reading a lot of what was on the website I am feeling more positive and it says being positive is a really good thing but it is very hard.
Jon came home and said the hospital had left a message to say his colonoscopy will be on 19 April - that is more than the two weeks the doctor said!!! Jon is going to call them tomorrow to say if they have a cancellation he can come in at anytime and hopefully he can get it sooner. It is so frustratingly slow compared to the UK system.
One of his managers who he thinks highly of resigned today leaving him with a lot on and all this stress he could do without.
We both manged to eat our dinner tonight and I have put my oil burner in the bedroom with some lavender and now the dog is sorted maybe we can get a bit more sleep.
It hit me today that, whatever happens, life is never going to be the same again.
Tuesday 3 April
Well the lavender in the burner seemed to work as we both slept much better last night.
I got up at the same time as Jon to make him his cottage cheese and flax oil mixture. He ate it with blueberries and said it was OK.
Once Jon left for work I called the hospital and spoke to the secretary and asked if the appointment could not be sooner or could we go on the cancellation list. She said she would put us down for that and I said we could go anytime. I told her the doctor said all the test would be done in two weeks and that this appointment was actually three weeks and I felt it was more urgent. She told me that usually you wait 'six months'!!!! Give me the NHS any day. She told me we needed to collect a box of sachets for Jon to take prior to the appointment and so I said I would pick them up later.
I went to my keep fit class but it was hard. I went straight up to the hospital and collected the box and the receptionist told me they had changed the appointment to 12 April which is next week so I was very pleased.
I seem to be going round in a daze most of the time but Les, Viv and Carol are being very good and keeping in touch with me through the day, I don't know where I would be without them.
I went to my aqua aerobics class at the hot pools this afternoon and it was really nice to be there and a very different feel to the morning class.
When Jon came in from the gym he told me he had tried to call this afternoon to say he was going for a CT scan at 3.00. They called him just after he had lunch and said he could go in for 3.00. They did his chest and abdomen. He said he noted on his notes they had him down for 16 April so I assume the 'we'll take a cancellation anytime' message got through which is good. So now we have the MRI for tomorrow and the colonoscopy for next week and then hopefully a 'soon' appointment with the consultant to see the results. He doesn't want me to go with him tomorrow as he says it is only like an x-ray and they won't tell him anything so I suppose I will just have to go along with what he says for now.
Hopefully, the lavender will work tonight, too.
Wednesday 4 April
Lavender seems to have worked again as we both slept well. I woke a few times but wasn't lying awake for hours as I have been doing.
Jon had all his concoctions again this morning and told me he had lost one and a half pounds in weight so I am going to have to give him more fattening foods.
I went to the supermarket after my aqua class and bought some monk fish for dinner tonight and have found a nice recipe shame it didn't taste as good as it should have done.
Jon came home after his scan and had lunch here so just one more to go and then hopefully we will get an appointment through with the consultant to tell us what treatment he will have.
I am feeling really down again today. So many things to consider. But we just have to wait and see what the consultant says. Jon is going to the gym every night after work so hopefully that will help with his fitness.
Thursday 5 April
Jon didn't sleep so well last night as the dog was up at 4.00 and he said he didn't settle after that but that is still better than it has been. I set off for the hour and a half drive to meet my friend from the UK and her daughter and baby granddaughter at 9.00. I wasn't looking forward to the drive on my own but I was glad I went and it did me good to be away from things and just enjoy meeting up with my friend from Newmarket and catch up on all the happenings back home. We had a really lovely day and the baby is just beautiful and sooooo good and I enjoyed lots of cuddles with her. So I was really glad I went and came home feeling much better. Jon went for a haircut after work and when he came home we had dinner and I had a glass of wine and feel pretty good at the moment. I am really looking forward to our weekend away and I don't care if the weather is not great. We are going to forget everything and just enjoy it.
Easter weekend 6-9 April
I was glad we went away as we did really enjoy it despite the rain. However, it is so hard keeping up a front and I think we are both trying so hard not to let each other see how we are feeling. I am not sure if I am imagining it or Jon is losing weight, he has to go to the loo so often after he has eaten which can't be good.
By Monday I was glad we were going home and I was happy to get there. Once home I felt very tearful and really had to get a grip.
Only a few days to go before Jon has the colonoscopy. My friend's mother was told after her colonoscopy what would be done so I hope we will, too as this waiting and not knowing the full extent is awful.
Tuesday 10 April.
We both slept badly last night and were up early. Sometimes I just long to go to bed to make the days go faster and then I long to get up as it all seems so horrible at night.
Jon is back on his Flax oil and cottage cheese and blueberries for breakfast. I didn't take it away with us as I could not guarantee keeping it at the right temperature.
I didn't stay for coffee after keep fit as I just find having conversations with people and trying to put on a normal front too much hard work. I went to buy some vegetables to make some soup for Jon as he needs to have clear fluids as from after lunch tomorrow and then only water on Thursday till he goes to the hospital in the afternoon.
I went to my aqua class and enjoyed it and Jon arrived home at the same time as he didn't feel like going to the gym. Roll on Thursday when hopefully we will know what we are up against.
Wednesday 11 April
Jon was working from home all day today as he needs to take the bowel preparation mixture and will need to be near the loo. When I got out of the pool today I started with a migraine type thing with lots of funny black and white shapes in my vision and the drive home was a bit scary but it didn't go into a full blown migraine thank goodness.  I cooked us a proper lunch as after 1.00 Jon can only have clear fluids for the rest of the day and then nothing at all after 8.00 tomorrow morning until after the procedure. He started drinking the mixture which consists of four sachets which need to be made up with one litre of water and a glass drunk every 15 minutes until they are all gone. He started OK but by 10.00 pm he had just about had enough and could not take anymore as it was making him feel ill but he only had about one glass to go. He has spent all night just standing in the kitchen ready to go to the loo which has been often. Not sure what time he will stop going or if he is going to manage to get any sleep. I made some clear vegetable soup but he can't face it now and is just on water.
Thursday 12 April
Jon finally managed to get to bed at 1.00 but we both had a very restless night and once again I was glad when the dawn broke and I could get up. Jon is now on water and we will leave for the hospital about 1.15. I need to make a decision as to when we tell the girls as I have some things coming up for Lions and I really need to let them know I won't be able to do them and feel bad about leaving it so long but it can't be helped and I hope they will understand.
We arrived at the hospital at 1.40 and were shown to a bed and Jon got changed. The nurse came in and did all the questions etc and put the cannula in his arm. She told us he was fifth so we would not go down till about 3.30. Jon hadn't brought a book so I went and bought a magazine for him. I had brought my eReader but when I turned it on the battery was flat!! I spent the afternoon reading 'old' magazines. Jon went in at 3.40 and it was expected to take 25- 45 minutes, he was in for 65 and I was beside myself with worry. When he did come out he was in a lot of pain due to the air they pump into you. Once he had managed to get rid of it he felt better. He finally came round and the nurse brought us a cup of tea and a sandwich for Jon.
The consultant came out to speak to us and I found him very kind and easy to talk to. He said they found two tumours one 30cm up and the other just inside his bottom. He said he believed they were curable and as Jon is young and healthy he thought it would be good. The biggest problem is the one just inside his bottom. They need to leave a 1cm margin where they cut and as this is in a difficult situation they will have to fit a stoma bag which will be for the rest of his life. Jon is very distressed about this. On the whole I was relieved and felt more positive than I have for two weeks as the MRI and CT scan results are all clear and my biggest worry was that it had spread. The surgeon said no special diet is needed and just to eat as much as he can to be strong and he said he could drink alcohol and if it was him he would 'have a few'!
The next step is a discussion over at Hamilton on Wednesday and they will decide on either a six week course of radiotherapy of a one week intensive course and then both would be followed by the surgery so we should know in two weeks.
When we got home I called the girls which was very hard as I couldn't do anything to make it easier for them. I only managed to speak to Jane and Heather as Kirsty had gone to work. Jane went over to be with Heather and hopefully they will get to speak to Kirsty soon. They will be in shock as we were but they need to be positive. I also spoke to my sister in law, Julie and she will kindly tell Jon's sisters. I tried my sister but she was out so spoke to my brother in law and our friend Roger. Malcolm was out so I emailed him. I seem to have been talking or typing all night and I am now exhausted so I am off to bed and hopefully sleep a little better tonight.
Friday 13 April
I did sleep well but Jon didn't and was awake at 4.00 and finally got up at 6.00. I spoke to Heather this morning and she seems OK and I was glad to hear they are all supporting each other. Jon was happy for me to go to the Red Cross this morning and it was good for me and it really helps. Les and Sharon are so kind even though Les is going through some real problems trying to get her visa to stay here and things are not going well for her. The shop was busy and I finished at about 1.00. I popped into the supermarket and when I got home at 1.45 Jon was still in the garden and hadn't had any lunch yet. It was another beautiful day so we sat on the deck for lunch. Jon then went back into the garden. This garden has not had so much attention for years. I spent the afternoon emailing people, it is very hard. We had our usual Friday fish and chips and watched some TV. Jon went up to bed early and I am just about to go as I am so tired.
WEATHER
Sunny 23 degrees.