After a bad Friday, the weekend was much better. We went to Cambridge on Saturday for a haircut. Lauren drove all the way there and all the way back. She was clearly paying attention all that time she has spent in my passenger seat, she anticipates well, keeps herself safe and drives with confidence. Sunday we went to Silverstone for MG Live. Sharon and I first went about 25 years ago and have been many times since, with and without the MG. The racing was good, with a variety of grids, the parking areas were great with a huge variety of cars and the classic bus tours of Silverstone were great fun (Lauren and Sharon went twice!).
Today Mandi from Macmillan came to see us. We had a good chat, found out some useful things,cried and laughed. She is going to put together an advance care plan for me. This will tell all the health care professionals that I don't want to die in hospital and I want to spend as little time overnight in hospitals as I possibly can. I'm not being stupid, if the chemo results in an infection I will go in for antibiotics, but I don't want to end up like the elderly men on the Oncology Ward whilst I was having chemo. I would like to keep some dignity and Sharon is happy for me to be at home. I am writing about it on here so everyone else knows my wishes.
Whilst we were chatting to Mandi, Andy turned up in the van and snuck down the side of the house to the Land Rover. By the time I got out there he had got the clutch pipe and cylinder off, fitted the new cylinder and was almost ready to bleed the system. We bled it and it is now sorted. I took a run out in it this afternoon and called at the scrapyard to get a 'new' headlight switch for the Polobanger.
Sharon has had her first grass mowing lesson and spent a whole chunk of the afternoon in the garden. I joined her for a couple of little jobs. It is such a nice place to be.
Monday, 17 June 2013
Friday, 14 June 2013
Not A Great Day
Today's meeting at The Churchill confirmed that the cancer is back. The biopsy analysis says it is sarcoma again, in my groin. The last PET scan also showed up an area in my left kidney. I didn't see Prof Hassan, Dr Pratap stood in for him. Probably a good job as I fear I would have been angry and agressive to the Prof, but Dr Pratap is so lovely I stayed calm and logical, only crying when she was out of the room.
Dr Pratap offered 2 different possible chemo regimes to slow down the cancer after she had confirmed it was back and that it will take my life. I have said I will try one of the regimes as long as I can have it at The Brodie Centre in Banbury. I can't see any point in going to The Churchill every day for 2 weeks, the time it extends my life by will be spent sat in traffic. We are planning two rounds of chemo and then review. If it isn't working we can swap to the other regime which involves daily tablets and has a side effect of raised blood pressure. With my abnormally high blood pressure the tablet version sounds dangerous.
I asked the "How long do I have?" question. Dr Pratap's answer was, on average a year, some people live longer, others less. So I should make my birthday on 23rd June this year, might make Christmas and could even make it to my birthday next year.
I don't really feel any different to how I felt yesterday, I knew the cancer was back, I can feel the tumour getting larger. It is good to have it confirmed, the doubt is gone. I am not sure there is any point in getting a second opinion, but I have made an appointment with my GP for next week as she will have to initiate the process. I also checked with Dr Pratap and she suggested a couple of places that may be able to give a second opinion. However, I have a tumour, surgery removed it before and it grew again, intensive chemotherapy didn't get rid of it, radiotherapy only works on small areas. They don't have any more tricks up their sleeves.
When Dr Trent first had to tell me and with Dr Pratap today, I really felt for them. It must be an incredibly rewarding job when everything is going well, but must be so hard with news like mine. They do an incredible job and deal with enormous emotional stress. I respect and admire them.
Dr Pratap offered 2 different possible chemo regimes to slow down the cancer after she had confirmed it was back and that it will take my life. I have said I will try one of the regimes as long as I can have it at The Brodie Centre in Banbury. I can't see any point in going to The Churchill every day for 2 weeks, the time it extends my life by will be spent sat in traffic. We are planning two rounds of chemo and then review. If it isn't working we can swap to the other regime which involves daily tablets and has a side effect of raised blood pressure. With my abnormally high blood pressure the tablet version sounds dangerous.
I asked the "How long do I have?" question. Dr Pratap's answer was, on average a year, some people live longer, others less. So I should make my birthday on 23rd June this year, might make Christmas and could even make it to my birthday next year.
I don't really feel any different to how I felt yesterday, I knew the cancer was back, I can feel the tumour getting larger. It is good to have it confirmed, the doubt is gone. I am not sure there is any point in getting a second opinion, but I have made an appointment with my GP for next week as she will have to initiate the process. I also checked with Dr Pratap and she suggested a couple of places that may be able to give a second opinion. However, I have a tumour, surgery removed it before and it grew again, intensive chemotherapy didn't get rid of it, radiotherapy only works on small areas. They don't have any more tricks up their sleeves.
When Dr Trent first had to tell me and with Dr Pratap today, I really felt for them. It must be an incredibly rewarding job when everything is going well, but must be so hard with news like mine. They do an incredible job and deal with enormous emotional stress. I respect and admire them.
Thursday, 13 June 2013
Black Friday Again
After a pleasant trip to my dad's, I have had a bad day today. Picked Mum up from hospital last night and got her back to the flat. She is still not right and it is grief I could do without. Been over 3 times to check on her, I don't think she has eaten anything, all of which I could do without.
Also tried to fix the Land Rover but it wasn't being helpful and I didn't have the physical strength or mental stamina to deal with it. Thought I would postpone it to another day and that set me off wondering how many more 'another days' I have. Perhaps I will get some idea when I see the Prof tomorrow.
Tuesday, 11 June 2013
It's not my day.
Just went out to the Land Rover to load it up for my excursion. All the clutch fluid has disappeared and I have no clutch. Polo going into action, I wonder if it works as a camper? Will pack the hammock and find a couple of trees.
Sent using BlackBerry® from Orange
Sent using BlackBerry® from Orange
Hospitals, family and stuff.
Had a great couple of days in Dorset. Well OK, overnight and two lots of traveling, but I love traveling. So I am going to do some more.
Mum went into hospital last Thursday with an infection, it made her very weak and confused. The doctor thought it would be the best place for her and I agreed. However, it seems getting her out again is almost as chaotic as my exits from The Churchill have been. When I went in yesterday they said the OT and PT would do an assessment this morning and she would be able to come home this afternoon. I was planning to go and see my Dad this week, so I delayed a day, hoping I could pick her up this afternoon, get her settled in the flat and go tomorrow and Thursday. Hospital rang this morning to say the OT can't do the assessment until tomorrow, so Mum can't come out until then. So, If I go to see my Dad, I won't be able to collect my Mum. If I don't go and see my Dad, I don't know when I will be able to. I am planning to drive over this afternoon, after I have been to the hospital and checked they can cope with letting my sister know that Mum needs picking up. Then I can go and see Dad on Wednesday morning. I just want a simple life.
Not sure what signal I will have in terms of wifi, should be able to blog from the blackberry and can usually manage to get a blipfoto up from there, but just in case I am taking the Olympus and the tablet. Might be visiting Macdonalds for coffee and free wifi.
Looking forward to a long trip in the Land Rover. I am aiming to find some Suffolk fords and might even try a few lanes round Thetford way. Need to be careful though as I am not as fit as I used to be.
Just had a phone call from the hospital, they wanted to arrange a CT scan for Mum, I told them she was in Juniper Ward and they could go and get her. They told me she had been discharged! Time to stop blogging and walk across to the hospital.
Mum went into hospital last Thursday with an infection, it made her very weak and confused. The doctor thought it would be the best place for her and I agreed. However, it seems getting her out again is almost as chaotic as my exits from The Churchill have been. When I went in yesterday they said the OT and PT would do an assessment this morning and she would be able to come home this afternoon. I was planning to go and see my Dad this week, so I delayed a day, hoping I could pick her up this afternoon, get her settled in the flat and go tomorrow and Thursday. Hospital rang this morning to say the OT can't do the assessment until tomorrow, so Mum can't come out until then. So, If I go to see my Dad, I won't be able to collect my Mum. If I don't go and see my Dad, I don't know when I will be able to. I am planning to drive over this afternoon, after I have been to the hospital and checked they can cope with letting my sister know that Mum needs picking up. Then I can go and see Dad on Wednesday morning. I just want a simple life.
Not sure what signal I will have in terms of wifi, should be able to blog from the blackberry and can usually manage to get a blipfoto up from there, but just in case I am taking the Olympus and the tablet. Might be visiting Macdonalds for coffee and free wifi.
Looking forward to a long trip in the Land Rover. I am aiming to find some Suffolk fords and might even try a few lanes round Thetford way. Need to be careful though as I am not as fit as I used to be.
Just had a phone call from the hospital, they wanted to arrange a CT scan for Mum, I told them she was in Juniper Ward and they could go and get her. They told me she had been discharged! Time to stop blogging and walk across to the hospital.
Saturday, 8 June 2013
Just realised i haven't blogged all week
It has been a pleasant week. Not achieved a great deal, but the sun has been out, I have been surrounded by friends and family and very few things have made me cry.
Had the needle biopsy on Wednesday, uneventful, and the results should be out for next fridays meeting with Prof Hassan. People have been saying I should get a second opinion, anyone know how I do that? Suppose I could ask my GP or the Macmillan nurse.
Monday, 3 June 2013
It's been a great weekend.
I have been doing things I enjoy with the ones I love.
Went to the theatre on Friday evening. It is the 25th anniversary of Lauren's Dance School and they were putting on a gala performance. I have sat through many dance school productions over the past 20 years, but for obvious reasons, Friday was special. Lauren danced in several numbers and had also choreographed one. I am very proud of her. My sister and her kids and my mother also came, so a family outing with Ian along too. We all had tea at ours. My sister is clearly upset about my situation, I need to sort out a time to talk to her. I am still crying about it now and then. The strangest things set me off.
On Saturday morning I read the programme from the Gala and reading Lauren's biography brought tears to my eyes. I walked into town and back in the afternoon to get Sharon's birthday present. Sunday was a great day, Shelsley Walsh Hillclimb with Ian. I have always loved motorsport, I can remember going to watch the grasstrack racing with my Dad when I was about 10, I don't like the big bucks stuff like formula one, I like good grass roots club stuff. There were cars out on Sunday that were built and maintained in someone's garage at home and they do 120 mph, uphill on a 1000 yard long track that is 12 foot wide at it's narrowest point.
Today we have been to Stratford Upon Avon for a bit of a mooch. I like Stratford, it is always busy with people who are not in a hurry and are there to enjoy themselves. It always reminds me of Cambridge with its groups of tourists. We picked Lauren up on the way, went out to lunch, had a walk round the town and an icecream by the RSC. I captured an interesting image for today's blipfoto journal.
Tomorrow is Sharon's birthday and she wants to go and see some animals. So we are off to The Cotswold Farm Park. It is the farm you see on Countryfile that belongs to Adam Henson. Rare breeds and other stuff. I think we will make it a Land Rover trip as there are some lovely fords just up the road and some places to hunt bluebells for her. I was hoping to post a link to the video from last Thursday's day out in the Caterham 7, but it is still uploading to youtube. It takes so long! Try this, it may have uploaded by the time you read it.
Went to the theatre on Friday evening. It is the 25th anniversary of Lauren's Dance School and they were putting on a gala performance. I have sat through many dance school productions over the past 20 years, but for obvious reasons, Friday was special. Lauren danced in several numbers and had also choreographed one. I am very proud of her. My sister and her kids and my mother also came, so a family outing with Ian along too. We all had tea at ours. My sister is clearly upset about my situation, I need to sort out a time to talk to her. I am still crying about it now and then. The strangest things set me off.
On Saturday morning I read the programme from the Gala and reading Lauren's biography brought tears to my eyes. I walked into town and back in the afternoon to get Sharon's birthday present. Sunday was a great day, Shelsley Walsh Hillclimb with Ian. I have always loved motorsport, I can remember going to watch the grasstrack racing with my Dad when I was about 10, I don't like the big bucks stuff like formula one, I like good grass roots club stuff. There were cars out on Sunday that were built and maintained in someone's garage at home and they do 120 mph, uphill on a 1000 yard long track that is 12 foot wide at it's narrowest point.
Today we have been to Stratford Upon Avon for a bit of a mooch. I like Stratford, it is always busy with people who are not in a hurry and are there to enjoy themselves. It always reminds me of Cambridge with its groups of tourists. We picked Lauren up on the way, went out to lunch, had a walk round the town and an icecream by the RSC. I captured an interesting image for today's blipfoto journal.
Tomorrow is Sharon's birthday and she wants to go and see some animals. So we are off to The Cotswold Farm Park. It is the farm you see on Countryfile that belongs to Adam Henson. Rare breeds and other stuff. I think we will make it a Land Rover trip as there are some lovely fords just up the road and some places to hunt bluebells for her. I was hoping to post a link to the video from last Thursday's day out in the Caterham 7, but it is still uploading to youtube. It takes so long! Try this, it may have uploaded by the time you read it.
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