Sad News

This has got to be the hardest thing to write and really no words can express how I am feeling but my courageous, beautiful, fun loving, husband and best friend sadly past away last Friday 21st June. He was so brave and put up such a good fight, staying positive until the end with hope that the Doctors could buy him a little more time.

He has left us with so many happy memories, he really did live life to the full, enjoying all sorts of hobbies including, cycling, motorbikes, shooting, diving, cars, his allotment, to name but a few over the years and most of all family life. He was so proud of all of our children and their achievements in life and I know they will continue to make him proud. He made us extremely proud too especially with his amazing achievement of riding around the country on his Honda C90 last year and his Olympics volunteering all since his diagnosis.

Dene was the love of my life and soul mate, we had been together since I was  15 and him 19 and have grown through life together. I know with the support and love from the children, family and our wonderful friends I will be carried through, but this is going to be the hardest thing I am ever going to do people say it gets easier but I can't see that at the moment, the only thing I know is that Dene would want us to enjoy everything we do and always live every single as if it was our last.

So on that note I will say goodbye and leave you with details of "The celebration of his life"
Wednesday 3 rd July at 12 noon, St Matthews Church, Redhill, Surrey. Internment at Redstone Cemetery followed by a party at The Harlequin Theatre Redhill.

Dene's wishes are that everyone wears bright colours to the church No Black and all those that want to wear fancy dress to the party afterwards!!!

We are having family flowers only and donations to St Catherine's Hospice and Epsom Canine Rescue as Dene got great comfort from our dog while we were out at school and work.

All welcome

Missing you already xxxx

Short update

As promised here is a short update on treatment this week.

Well I met with my new consultant Wednesday, and this was a very productive meeting, and the trialhe wants me to go on sounds very interesting. Its basically using trojan horse viruses to get inside the tumours and then the virus kills the tumour. There are only 32 people on this trial in the UK and around 2000 worldwide, so once again I am part of a select group. The downside is that I will need to spend a few days in hospital after each treatment, so I can be closely monitored, which is to be expected as its a trial. We asked what the measure of success is, and as a phase 1 trial, they are looking to see if the virus gets into the tumour. Now of course they would not do this if they did not expect this to also have a major benefit for me. In the labs this approach is very successful, so hopefully this will also work for me too.

My biospy, which was booked for Thursday, was cancelled as they want to carry out the biopsy in their own labs next Thursday. I will need regular biopsies throughout the treatment, as this is the only way they can check the virus is in the tumour. At the first biopsy they will also send a sample to another lab in London where a separate trial is looking at the genetics of tumours, and the benefit for me here is much more information about my tumours, and hopefully more targeted tresatment.

Now on returning from seeing the consultant, there was an update letter from my oncologist, which he sends to the whole clinical team, and a copy to me, after each visit. Both Sarah and I were srprised to see a statement in the letter that it had also spread to my lungs, which had not been mentioned to us before. I ncould not get hold of my consultant but did speak to my radiologist who confirmed this bad news, but he was extremely sorry it had not been explained to us in person. So thats another worry for us to deal with.

However to end on a positive note, Jackie, Sarah's big sister, has sent us 2 tickets to see rod Stewart at the O2 next Tuesday. She was worried I would not be up to it, I replied that I will dose myself up with morphine and Red Bull, but I will be there. Yesterday I booked the disabled parking, and was somewhat surprised to find this is in the cap park furthest from the O2, I feel a letter coming on ....

Road has come to a T- junction, which way to go???????

The last week or so has been a real roller coaster emotionally, and the time has come to make some decisions.

Last weekend was my cousin Tracey's birthday. Now I am a gentleman and won't say how old she is, but the amount of time she has to wait for her telegram is now less than she has waited so far. She had a great birthday, with a big marqee, or tent as she called it, disco, band and a pig roast. It was a really good evening, it was just a shame I was feeling pretty tired and had to leave by about 10.15pm. We had an hours drive home, which I slept through pretty much all the way. the party went on til 3am, so I am sure everyone went home happy,and maybe even with sore heads the next day!

The following day was Leisha's birthday, and we had a small family do here at home. for once the weather was good, nice and dry, and warm to boot. Leisha had a great day and was very happy with all her presents. Her birthday list made me laugh as she numbered every item, so 1 was money (lots), 2 was a mobile phone etc. However coming in at number 9 was Dad to get better. It bought a tear to my eye, then a tear of laughter as I was only at number 9!!

Then on Tuesday things started to change. I had a visit from Gill, my St Catherine's nurse to help with my pain, and I was somewhat dismayed to have my pain relief increased, not because I want the pain, but because of what it may signify. One extra prescription was for some morphine tablets, which I am using sparingly. The on Thursday I had to go into A&E, as I had some bad pains in my chest/abdomen. It was also lucky as my Oncologist has a clininc in my local hospital on that day, so after going through A&E, with all the tests, it was over to see my Oncologist. He wanted me to have an emergency CT scan as the initial tests at A&E showed nothing significant. A quick drive down to Gatwick Park and my CT scan was done. The bad news was two fold. The first thing was the pain was down to an enlarged liver, which is one possible side affect of the new tablets I have been on for 6 weeks. The other bad news was that these tablets are not working, as things continue to grow and get worse. Friday then saw me back in Guildford to see my Oncologist at my normal appointment.

Friday was also the day our loft extension was finished and signed off by the buildings inspector, so the day started well. However at the appointment, the news I have avoided so far came out. The tablets I am on are the last treatment available for me to try and manage the cancer. So we have reached the junction, do we say enough is enough and try and make the best of what I have and manage the pain. Or do I ask to go onto a research program to see if that helps me, or others. To be honest it was a no brainer, so this Wednesday see's me meeting my new Oncologist to discuss research programs. I am quite excited about this, and am treating it as just another medication to take. However, this alos meanms that Thursday I have to go to hospital again for another liver biopsy to check the tumours have not mutated, and to give the research team some tissue to base their medication on. I have had this done once before and the procedure itself is ok, but it was not too good afterwards for a few hours.

Now all this news has led me to another decision, in that I cannot go back to work. This was always a goal of mine as I have been lucky enough to have a great career, doing something I loved, at a company I enjoyed working at. I wish everyone there well, and ask that they keep in touch.

I will update again at the weekend, after everything has settled down.

Lots to update you all on ...

Over the last week or so, we have been mega busy and loads has been going on.

As you may have seen last Wednesday was Sarah and my 20th wedding anniversary and what a great time we had. First of all Sarah came home with a lovely present from work. Her work colleagues had bought us a night away at the Nutfield Priory Hotel, including dinner and breakfast. Thanks so much to everyone for this fantastic present, which also happened to be the hotel we spent our wedding night at. Now we knew of this present a few days before our actual anniversary so we managed to get well prepared, including sorting the kids out. Unbeknown to Sarah, I also had a chat with my good friends Jeremy and Jane, who lent me their Porsche 911 for a couple of days. Jeremy did offer me his Caterham 7, but I can't get in it without breaking switches so decided it was best not to pursue that option. Thank you Jeremy and Jane for this, and don't forget I still owe you for the petrol!

Well we started the day off by going to Chartwell, Winston Churchill's house, over near Westerham. We had lunch plus a walk around the house. I would have liked to walk around the grounds more but I was not up to it, more on that towards the end. We decided not to have a desert after lunch, and thought about a nice ice cream on Westerham green. However, as we parked up right outside a tea room offering lovely cream tea's, we decided it would be rude not to, so sat down in the sun to enjoy a very nice cream tea indeed.

We then left to go to the hotel and when we arrived we made use of the pool and spa for a while before getting ready and heading down to dinner. Now we were expecting a 3 course dinner, especially after all we had eaten so far, but no, we had a 5 course affair to get through. It was a major challenge but we made it, just!

Next morning we dropped the bags at home and checked that Mum had arrived to allow the builders access, then headed off to Rye for a day by the coast. Again we parked up and had a nice walk around town, whilst trying to find somewhere for lunch. As we were by the sea, I wanted something with fresh local crab in it. We tried several cafe's and really struggled to find somewhere, but in the end we did. I had a lovely salad, Sarah had sandwhich - I had had enough carbs by now and a salad was just fine. We left Rye and made a short visit to Tenterden, before heading over to Sarah's sister, Jackie, on the way home. Once again food was invlolved as a curry was bought in, which we did our level best to polish off, but this time we didn't quite make it.

We have had loads going on aside from our anniversary. Leisha's football team played in the League cup final against Croydon Borough. Now Croydon won the league premiership and are also in both the league and county cup finals, for the second year running. They had some very BIG wins on the way to the final. South Park, Leisha's team, are in their first year, and have finished 3rd in Division 1. Their progress to the final was a little more sedate, but make it they did. They played a great game, and although they lost 3-0, they were not outplayed or outclassed. I think this means they can look foreard to next year with great excitment. Rather like Leisha's football team, Max's team was also relatively new this year, and they were playing in the Premiership Division. After a dreafdful start to the year, when they hardly knew each others names, and were at the bottom of the league, they turned things around after Christmas. Since then, they have played 8, winning 7 and drawing one. Which if they had played like this since the start of the season would ahve meant they would have won the league. Instead, they went from second last to 6th on the last day, so avoiding relugation. Again roll on next year.

Freja has just finished school for a few weeks on study leave, as she prepares to take her AS exams. We have also planned the university visits, to see which one she would like to go to. We have a shortlist of 5 for our roadtrip, Manchester, Leeds, Huddersfield, Plymouth and Brighton. Anya was involved in a photo shoot for one of her dance teachers who is seeting up a new dnace company, she looks great, and I will put some photos up when I can.

Of course we have also had the loft extension still continuing, however the end is in sight, as most of  it will be finished this week, with it all finished by next Tuesday. then we can start getting everything back in order, and the painting and decorating really begins. So far we have spent a small fortune or so it seems on paint etc, quite a lot of it appears to be on my at the moment rather than the walls. We also had a work day down the allotment, with lots of people turning up to help get it in shape for this coming year. The helpers were Paul & Clare, Jo, Steve, Adam, Sian, Dee and Tess, Emma & Liz, Mum, Norm and Daph, and Jackie. (If I have missed anyone, sorry!!!) We provided tea and coffee, with bacon rolls to keep the energy levels up.

Lastly, on Friday I saw my oncologist, to see how I was settling in on my new medication. It seems as though I am fine on the new tablets, my bloods appear good, and my blood pressure is ok, which are the two area's of concern, However, for several weeks, I have had quite a bit of pain in my left hip and my left shoulder. This is linked to the bone where some of the disease has spread to, and the reason I have had some radiotherapy. The shoulder has cleared up fine, but the hip is still sore. I now have to wear a pain releif patch to help manage the pain, as well as taking paracetamol on a regular basis. I am meeting with my St Catherine's nurse this week, to check I am on the right level of pain relief. The oncologist is hopeful the hip will settle down, as damage to the bone can take quite some weeks to become better after radiotherapy, but we will see. All this means I am not as mobile as I would have liked, and am having to use my blue badge more than I like, but it was fun parking up the 911 and placing the blue badge in the window.

Another quick post

Happy 20th Wedding Anninversary Sarah Marsh. Thank you for being there through thick and thin, or in my case thin and fat! You have made my life complete, and I love you more every day. Here's to making the most of the next period of our lives together.

Quick update on the weekend

The weekend went very well for us all, but as usual was very busy in the Marsh household. In no particular order:

Freja spent most of the weeknd working, both earning money and also preparing for her A* exams. She got the results of a sociology mock exam, which she did not really studdy for, and she got an A.

Max had two football matches, playing for Perrywood. The first was against Merstham, who are bottom of the leaqgue, one place below Perrywood. Max's team won 4-2 after a sloppy start, going 2-0 down inside 1o minutes. Yesterday they played Caterham, who are currently 3rd. and they got a great 2-0 away victory. That's 5 matches unbeaten. As a pretty much new team this year, they had a slow start, but since Christmas they ahve played like league winners, so I hope they stay up. Max also started his first job, delivering a free local paper, he's already turning into a tycoon, as he has offered to outsouce some of the deliveries to Leisha for £2 a week!!

Anya spent all Saturday at a photoshoot for a new ballet company, soon to be launched in the Redhill/Reigate area, which ius being set up by one of her teachers. She, and a few other girls, had a great day, doing a wide range of shots, from classical to contemporary. We are really looking forward to the results.

Leisha had her final football match of the season for South Park ladies. They recorded a fine 14-1 win, which to be honest was not flattering at all. This secured them 3rd place in the league. However, next week they play the Premier League winners in the league cup final, so they probably could have done with a harder game to keep them on their toes. The cup final is being played on Sunday at Merstham FC, so if you are free, please come down to join us.

Lastly, Sarah and I played taxi to all these events, as well as sorting the house/loft extension. Today we have the plasterer's starting, and we hope to have it all ready for decorating by the end of next week.

Now ....  rest!

Radiotherapy over

Last Wednesday I had my last treatment of radiotherapy and I am pleased to say all went well. So far no side affects, and I am feeling much better every day, although if I overdo it one day I am still paying for it the next!

We had an extremely busy weekend, and I must say it was good to get involved. Firstly we finally found the tiles for our new shower room, which is in the loft. We saw so many tiles we struggled to find anything good, then we popped into The Extra Special Tile Company in Reigate. After some really good customer service, which started with Sarah saying she "had a rough idea what she wanted, but would not know exactly untill she saw it". The guy found some really great samples and within 15 mins we were sorted, highly recommended. We ordered them there and then, and had a call wednesday to say they were in.

Saturday we choose the new bathroom suite, as well as doing the food shopping. Now as I am not working at the moment, I should really do this during the week, but never mind. We also had a quick trip to the allotment, and I was really pleased to see my grapevines I had transplanted to the greenhouse coming on very well. It all looks a bit messy but nothing a little hard work won't sort out. In fact we are having a "help Dene with his allotment" day on Saturday 4th May. Free bacon roll's, tea & coffee and a cardio-vascular work out to anyone that wants to help out. Please email me or post a comment if you can help, so I can sort the catering.

Sunday was also busy, with Max playing football. It was a pleasure to see how well the team has come on over this year, they had a 2-2 draw with a team they lost 5-0 to earlier in the season, and to be honest they should have won. The highlight of the weekend for me however was the visit of Kate, Christian and Addison. Addison is only a couple of months old, and is a real little sweetie. I thought Sarah might get broody, but no she was ok. It was great to see them, and you can see the love and affection in Kate and Christian's faces.

This week has also been busy, although I have had to take it easy on a couple of days. The loft extension is now only about 2 weeks from being finished, and we are really pleased with it. I also managed a little work down the allotment, including cutting the grass on my new lawn mower. The 3 I have at home all died, so a new one had to be purchased. thanks also to Ross for clearing all the wood for me. today I had my first 2 weekly check up following my change in treatment, and all seems good so far. Well good in the way that they told me I could go after my blood test, and they would ring me if there were any problems. Well the phone has not yet gone, so I am assuming all is ok.

Next week will also be busy, but more about that another day ...

2 down, 3 to go

Friday night, chilaxin after a bath, thinking about how today has gone, and as usual in the Marsh household, it's been hectic! Where to start, ok, lets start at the beginning ...

So my appointment for round 2 was for 9.06am. Now why do hosppitals, or anyone, set a time for an appointment for such a random time as 9.06. We all know that things never start on time, and usually run late. Now a 9.06 start(?) means leaving plenty of time to travel round the M25 in rush hour, so we set off at just about 7.45. The plan if we are early is get breakfats somewhere as i haven't yet eaten due to my new tablet regime requiring at least an hour clear of food after taking them, and more worringly 2 hours clear of food before I take them. So they are the first thing I have when I get up. No surprise but the M25 was empty and we arrived in Guildford just after 8.20, so we had loads of time to kill. Now next to the hospitla is a 24hr Tesco, so breakfast was had there. Now unlike most large Tesco's, the one in Guildford does not have it's own cafe, it has a Costa instead. So spending nearly £10 on a breakfast roll and hot choc for me, and a tea for Sarah, we settle down for 10 mins before we drive the last 1/2 mile or so to the hospital. Here we have our first, and probably bets laugh of the day. From our seats we could see the car park, and then we saw him. On a mobility scooter, going past fast in the rain, is an old boy driving past. Rain mac on - check. Flat cap on - check. Ski googles on - check. Did I say ski googles, yes I did, and bright blue ones at that. They kept the rain from his eyes, either that or his brakes had failed as he flew past the window!

After breakfast and treatment it was time to come home and today we had no punctures or other mechanicals to slow us down. We had to get home quickly as Max was at the dentist today having a couple of teeth removed, ready for his brace. That went fine, no pain at all, for me anyway, Max of course had a bit of pain but he has recoevered enough to go to Air Cadets tonight.

We also had a surprise with the loft, the first Velux window has gone in, the loft hatch has been sealed, and a new one created, and finally all the floor joists have gone down and a couple of the floor boards. So things are continuing apace.

So what does the weekend have in store. Well nothing to do with treatment of loft for a start. We are having a clean break. Saturday, Jake, Alison and Garry's youngest, has a football cup final, which we try to go to. Then in the evening, we have Rachel and Stuart's wedding reception. I truly hope the weather stays good for them, as they deserve it. I am sure they will have a great day whatever, but it would be the icing on the cake. Sunday see's more football, Leisha has a game, then so does Max, and for once we can go to both games. I am looking forward to 2 good wins for them.

Then Monday it all kick's off again.

1 down, 4 to go

So Thursday night, and just had first round of radio therapy. Well that's the easiest treatment I have ever had. Take most of your clothes off, lie down here, don't move, machine goes whirrr, 15 mins later, up you get, get dressed and go home if you want. That's it. Very easy. Then off to Tesco shopping and lunch - I know how to treat a lady, let Sarah have a £3 meal deal - back to car to drive home and ..... puncture.

Now as you know the loft started this week and Sarah has the car filledwith loads of stuff for the charity shop, and guess where the spare is, that's right, underneath the whole lot. So there we are, in Tesco's car park, unloading loads of boxes and bags, finding the spare wheel, which I only put back a couple of days ago, Get it and all the tools out, change wheel, which took quite some effort as I am still very tired, load all the gear back in the car, now with a full size wheel, and off we go home, at last. As usual nothing is easy and my chemo brain kicks in, Where is my wallet? We stop in a layby to check Sarah's bag, as she say's it's in there, but it's not. So we start to empty the car again, and then I find it, it had fallen down the side of my chair.

We finally get home safe and sound with everything we should have and nothing we shouldn't. The guys doing the loft have left for the day, but they have made terrific progress, and hopefully are ahead of schedule. It's pretty impressive what they do, and we are all getting excitied about the future, except Sarah and I who have to finally sort all the junk/stuff/momentos we took out the loft, as currently they are filling my Mum's back bedroom, Sarah's Mum & Dad's conservetory and one of my good friends spare bedroom's, and we have space for about 1/10th of all this.

Tomorrow I am back for round 2, then Monday - Wednesday next week and then, hopefully, that's it. Let's hope the next 4 treatments are a little less eventful. Have a good weekend all!!!

The Good, the Bad & the Ugly - Part III

I have receoived lots of very positive comments following my post yesterday and I re-read my post and realised it could be taken in a couple of ways. So to clarify:

The Good

The good news is the chemo has finished - for now at least. So no more tiredness or side affects. I am now moving onto a tablet based medication, which should make life much easier.

The Bad

The bad news is that I am coming off chemo as it was not working as well as we had hoped.

The Ugly

The ugly is that the tablets are the next form of defense to try and contain everything.

Now I am not down about this as it will enable me to, hopefully, have a much better time of it, and really get stuck into all the things I want to do, but have be unable to recently. As the song says, "Always look on the bright side of life" except my names not Brian!!!!

The Good, the Bad & the Ugly part II

Just back from the hospital and have an update on my treatment. It seems as though I now don't need my little op, as everything seems to be settling back to normality. I will still need to see my specialist when he is back from holiday next week, but things are looking good.

I also have finished with chemo for now, and instead will be having a course of radio therapy, 5 sessions over 5 consecutive days and also a new drug, which comes via 4 horse pills I need to take at the same time, oncee a day. This will last for the foreseeable future. And that's it. So hopefully no more tiredness, no more hair falling out, and no more needles.

To say we are looking forward to this is an understatement. Apart from decorating the new loft room and all the other bedrooms, Sarah has a little list of other jobs to do, which bear no relation to the jobs I had planned, such as golf etc, but I am sure we will sort it out.

The Good, the Bad, and the Ugly

The Good

Well since the last update, there has been a lot happening. Sarah finally got to Iceland with her sister Jackie, and the two girls had a great time. They saw the Northern lights a couple of times at night and even on the bus back to the airport at 5am whihc they were told is very unusual. They also enjoyed an island tour, to see the glaciers, the volcanic geysers, and some great waterfalls. They also enjoyed a really good day at the Blue Lagoon, a volcanic spa, where they enjoyed the hot natural waters and mud packs. they also visited the world's only penis museum, I wonder if that's why mum's go to Iceland?

Freja had her driving test this week, and despite everything, she passed with flying colours. Well done Freja and well done Aunty Emma, her instructer from JEM Driving School in Redhill - if you or someone you know needs some lessons give her a call. Now I don't have to do the school run and we have an extra taxi in the house, it will make things much easier, and as we are paying most of her petrol bill, she has to earn it. Max is currently in Belgium in Ypres, where his Air Cadet group are parading tonight to the Menin Gates, and where they will play the last post, which is played every night of the year. I am a bit annoyed as I planned to go and watch, but hey ho.

We also had a visit from Duncan and Sara and their family from Lydney, for the Easter weekend. We enjoyed a really good night with them, along with Alison and Garry and Alison and Ross, and all their families, it was so good to socialise again. On Easter Monday Sarah and the kids joined Duncan and Sara on a visit to London and the Sealife Centre and Madame Tausauds, great time was had by all.

The scaffolding has started to go up today ready to start our loft extension on Tuesday, we really can't wait for this to be finished and have even bought our new bedroom furniture last week, albeit it is in storage untill needed, but we saved £100 by getting it over Easter.

The Bad

The bad news is that as Sarah left for Iceland, I had a recurrance of my very first symptom, ie very difficult to pass water. So the week she was away was spent in and out of hospital, having more scans and tests to see how bad everything was/is. I have just got back from the follow up meeting with my consultant and this is due to the continued growth of my tumours. The treatment is not fun,hence the ugly!

The Ugly

Joy of joys I have to have a small op on 24 Aprii. This is to basically bore a new improved hole, wo't go into more details, but I think you get the picture. I will be in for 2-3 days and the recovery might be a little painful, but it will be well worth it. I dont know how this will affect my other treatment, but will find out on Monday, when I will post my next update.

Hope you are sitting comfortably

So as promised, here is a short update following my scan earlier today. The main point was that things are not going as planned. Despite good blood tests the cancer is spreading, and the exisiting tumours are still slowly growing. What this means for my treatment I don't know but I will find out in a couple of weeks at my next appointment, unless they call me in earlier.

Anyway, enough of that old rubbish, we plan to make the most of the next couple of weeks, especially as I am definitely feeling better day by day. So we have good friends Duncan and Sara coming up from the Forrest of Dean next weekend, and we plan a few days, and probably nights enjoying ourselves. As Easter approaches, we certainly plan a few days out with the family, but we might have to temper that by making sure the loft is finally cleared for a start date of 8 April, which just happens to be the same day as my next appointment.  And I know Sarah is in 2 minds about going to Iceland now, but I have told her to go and enjoy herself, as more than anyone, she deserves a good break.

Keep in touch all

3 down - 1 week to results

So here I am, just had the third round of new treatment on Monday and wow how things change quickly. First round went very well and I felt great, as per the last posting, however last round was not so good to say the least. It was a complete turnaround, I was very fatigued and tired all the time. Not really sure why, but hey ho, so long as its working. And it seems to be. My7 blood tests showed that my PSA is now down to almost as low as it was when I finished my very first round of chemo last April, and I still have possibly several months to go on this treatment, so hopefully this will continue to improve. I won't find out really how well these first 3 treatments have gone untill next Thursday when I have my next CT scan, this is the only way they can say for sure that things are regressing. To aid the medicines i am on, I am still continuing with my alternative support therapies, such as the many vitamins I take every day, diet, and my healing friends. I am doing all I can, as well as being my usual positive self.

Things with the family continue to move ahead and once again I am so proud of each and every one of them. Freja is having rag week this week and is really enjoying it, but best of all were her AS results. She managed BBC, and one of the B's she got a U in the mock, so well done Freja, and keep it up. Max is working hard and still really enjoying his air cadets and football. Anya is now doing 3 ballet sessions a week, although she has sore feet from the pointe's, I am sure this will ease. Most of of all she is having fun and doing well. Yesterday she had a brace fitted, and this will benefit her in the long term, although she may not feel that at the moment. Max took the fun out of her yesterday, as brother's do, however he has to have 4 teeth out and his brace fitted early May, so he may get some payback. Leisha is also doing really well at school and has made really good progress this year, and is doing really well at football to. In fact both Max and Leisha managed to win player of the match on the same weekend.

Lastly Sarah is working really hard getting the loft ready for the extension, however a table top sale in the village actually cost us £4.50 to sell £5.50 worth of stuff, good job there was a car boot the next day, where she turned a good profit. She is also getting ready for her trip to Iceland with her sister a week Monday, which I truely hope they both enjoy.

We have also manged to catch up with some friends but not as many as I would have liked, given my fatigue, but I do have to take it easy, with the long term goals in mind. One small benefit this time is my next treatment is scheduled for Easter Monday, but we have delayed it for a week. This allows me to hopefully enjoy the Easter holidays with the family, as I have an extra weeks recovery, plus attend my cousin Tracey's birthday party, not saying how old she is but its a nice round number!!

Next psoting will not be as far apart as this one, as I will update everyone next Friday after my scans, as I know many of you want to know. So long as everything is working, I will continue on this treatment, so fingers crossed, and eyes, legs, arms etc. Speak soon...

Hello all

Long time since my last post, and I'm glad to say it's all going the same way. This treatment seems to be so much easier on me, I am even thinking about going back to work whilst on the treatment!

So I have been my usual busy self, been out and about, down the allotment, shopping, helping Freja with her driving, Max and Leisha with football and supporting Anya's ballet. As well as catching up with as many friends as possible, and all the while still trying to clear the loft and sort out the loft extension! Freja has now passed her theory test and has her full test booked for early April, so fingers crossed that will be another taxi in the house.

If I say too much you will think I am living the life of Riely, but its not all plain sailing, by 9pm I am usually in bed, and if anyone comes up after 5 mins or so, I wont hear them as I am already in a deep sleep. This hits like a light switch, one minute I am fine, then bang, I need my bed.

The best news this last update is that Sarah is off to Iceland with her sister Jackie for a week. This will be a great trip and to say I am jealous is an understatemt, but she really deserves a good break and I am so grateful to Jackie and Richard for arranging this for her.

Keep in touch all

One week on

So here I am , one week on from starting the new treatment, and once again I seem to be taking it well. The medical team told me it was the least toxic of all the treatments I have had so far, and I have to agree. Bearing in mind normally I would be just coming round to a degree of normality by now, I haven't really had any major downtime. For instance last Wednesday, we had an open eveing at Max's school to look at his options for his GCSE's. Now I did not think I would be able to go by any means, but I was ok, and went. Although I could not manage the whole evening, I did the majority, and just retired to the car when I had had enough. It means a lot to do little things like this so close to my treatment. Basically I had a little tiredness and shortness of breath, which by Thursday had pretty much abated, and today, I fell 95%, so you could say I am very happy. I have kept quiet on here just in case there was a delayed reaction, which I have had in the past.

So this new lease of life means I am actually pretty comfortable about facing several months of this treatment, again provided its all working. I must say the initial signs to my mind are positive. I have a little pain in my big toe, think it might be a touch of gout again, which the oncologist told me last time was actually a good sign, as its a side affect of dying cancer cells. So at the moment I am hoping the pain gets a lot worse!!

So given I am ok, what have we been up to. Well a lot actually. Of course I have told you we are looking at having the loft done, so we now have a couple of quotes in, just waiting for the last two, so we can make a decision. That of course means we actually have to clear our loft, think God had an easier time parting the Red Sea for Moses, as there is so much stuff up there. Still we are making an impact and finally selling loads of stuff on eBay. It's almost as if I am running an eBay shop we have so much stuff on there. And of course we have the kids and there activities.

Freja's driving is going well, it wont be long and she will have her theory test, and hopefully she will be driving on her own in about 8 weeks, but there is no pressure from us, when she is ready, she is ready. This is alongside her studying for her AS leve exams, and looking at universities, so she has a very busy life at the moment. Of course Freja's driving instructer is her Aunty Emma, so if you are in or near Redhill and want a really brilliant instructer, check her out http://www.drivejem.co.uk/ 

Max is looking at his GCSE choices, and wants to make the choices which will support a career in the RAF, and for once seems pretty focused on making the right choices. At Air Cadets he finally went flying at the weekend, in a glider. He did really well,a nd his instructer has suggested he put forward for the Flying Scholaship once he is 16, as he had a really good feel and touch. Of course he was elated, and this would mean he could be a qualified solo glider pilot. He also has some powered flight training coming up, so hopefully he can get on that course too. Sunday saw the county parade and service at Guildford Cathedral, and Max was given the honour of carrying the squadron banner. He was by far the lowest rank, and youngest, of any of the banner bearers, so he, and we, were very proud.

And so it oes on. Anya is still working hard at ballet, and will be soon going on points. For the non-ballet followers, including me, this means tippy toe ballet. The one that breaks toes and deforms feet. But she is excited and we will soon have a trip to London to source the correct shoes and get them fitted.

Lastly Lesiha is still doing well at football, and had a convincing 6-0 win at the weekend. I took her to the match and it was freezing. She palyed in defense in the first half and did really well, then went in goal for the second half. Her major contribution was a great save, and trying to keep warm!

That just leaves Sarah. Well as usual she has been an absolute rock.Looking after both me, and all the kids, when I cannot. We have had a few friends round to visit over the last coupel of weeks, Ross and Alison turned up with a chinease takeway - thanks guys - and Saturday, Alsion and Garry came round for dinner, and I was able to cook for everyone so Sarah could relax, to a degree. We also received a food parcel from the Taylor's which was great,but we had just filled the freezer, so its all got to be eaten quickly!! Also as usual we got a little card from Beth and Dave, always look forward to these as they always make us laugh, but Beth you must not include so many goodies. But Sarah's best news came via her sister,Jackie, who has invited Sarah to join her on a trip to Iceland, and no, not to go shopping, Iceland the country. Its for 5 days and all she needs take is her spending money.

As for me, one thing I need to do over the next few weeks is get my little Honda C90, which I used on my charity trip, back on the road and give it some TLC. Two  of the guys in the owners club are attempting  1000 miles in 24 hours on public roads on one soon, you can find out more here http://www.c90club.co.uk/viewtopic.php?f=11&t=13938. I am lending some of my kit to them and wish them well. If I am up to it I will pop over to Essex to add some moral support.

Finally thank you Jackie, and thank you to all our friends and family who help us so much, we really do appreciate it.

Change of treatment

A quick post tonight. Yesterday I went in for round 4 of this course of chemo following my good scan results on Thursday. However the Oncologist was not as pleased. He was happy that things had stopped getting worse, but was disappointed that nothing had shrunk. So, we discussed changing the chemo drug, to something which should attack everything more aggressively. The good news is this drug, which is not approved by NICE for NHS as its so expensive, so lucky me, has really good results. The bad news is I might have to have 10 rounds, one every 3 weeks. So thats 30 weeks before I even start thinking about getting back to normal. I would only go the full 10 rounds if I respond well, and things shrink. Wonder if it will work on my belly too?

Treatment will hopefully start on Monday, and I can have a break to go on our summer holiday. So look out Dunc, Sara, Andrew, Mary, Garry and Ali - I will still be there, you might just need to help us put up the tent though!!!

Lastest test results

So I ma at the end of round 3 of this cycle of chemo and yesterday I went down to Gatwick Park to see stev, my Consultant Radiologist for my check up CT scan. Now I seem t know everyone down at Gatwcik as I always have my scans there, and everyone is so friendly. However over the last few scans I have developed an intolerance to the dye they inject to make the tumurs stand out. The side affects of this dye are very short lived and some can be quite funny. Firstly you get a strange metallic taste in the mouth, then a hot flush aroudn yout shoulders and head. The funny one is a hot wet feelign down below, which does feel exactly as though you have wet yoursel, f I imagine, and lastly nausea. Now when I first started having CT scans I only got the metallic taste but about 3 or 4 scans ago I got the full works with a vengance. It is bloody hard to lie still and not breath for 30 secs or so while the scan takes place, when you are heaving away, but somehow I seem to manage it. I joked with the David, who did the actual scan, that he need to wear his wet weather gear. Since then they are well prepared for me. Yesterday for instance Davd supposedly was interviewing, so left me to the other radiologists!!

Anyway I digress, after the scan we met with Dr Gwyther, my Consultant Radiologist, to look through the scans and the good news is they have not got any worse and were in fact more defined., ie they have stopped growing. Which is the first aim of the treatment. That, along with my improved blood results is all great. Of course I would have liked to see some shrinkage, but I still have 3 rounds of chemo to go to allow that to happen. Dr Gwyther explained its like stopping an oil tanker, it all takes time and happens slowly. to see how much had grown in the 3 months between my checkup scans and now to see no growth over the last 3 weeks thanks to the chemo is a good result.

I have had a couple of comments about the fact I have been posting less, well as not much has been happening, there has not much to write about. I thought "got up today tired so didnt go out" every few days would be a little boring plus the fact I had some good targets like yesterday to look forward to, gave me some good opportunities to update everyone and some focus for me. Trust you all understand. anyway it has not all been boring. for a start we are finally, definately maybe, probably, pretty much certain going to have our loft extended to make a new bedroom and bathroom. Now not only is that going to cost quite a bot, and certainly more than we estimated, but we have to clear te loft. Now our loft is very well insulated, with several tons of clothes, and other assorted junk. Sarah seems to have kept all the kids clothes, ever, and now its time to go. So we have opened an ebay store and are posting many items online. We have agreed that we will be getting rid of as much as possible, those items that dont sell will either go to charity or the dump depending on what it is. This is a mamouth task but will be very good use of the time I have on my hands for the next few weeks.

Aside form that, we have a number of other things going on. Freja has just finished her AS exams first round of exams, as well as startign driving and looking at Uni's for the next stage of her education. Max is looking at his GCSE choices at the moment, we have to finalise these by early Feb, and on my part for him I have been in touch with the RAF in regards to his choices, as this is by far his preferred occupation. Anya has settled into secondary school and is progressing in her ballet, and maybe moving onto points and competitions in the next few motnhs. Lastly, Leisha is doing very well at school and in her football, her team has reached the cup semi-final in only their first year.And Sarah as ever is so supportive not only of me,but also of the children, and only has the occaisional noght out, like her book club, as her reward.

So over the next few weeks we will be busy doing all the above, plus my next treatment on Monday, only 6 weeks to go til my last one - yipee!!

Half way there ...

... so yesterday so me take chemo number 3, that's half way! As usual it all went well, no hiccups and once again some good news. I have not shared with you all the aims of this chemo, so here we go. When I had my scan it identified that I had some new growthj on my liver from exixsting tumours and also a couple of new lymph nodes had shown some signs we needed to get on top of. Therefore this round of chemo is targeting those areas alone. These cannot be tested by blood tests, only by scans. Hopefully my next scan in a couple of weeks will show that the chemo is working and these are getting smaller. Alongside this treatment, my PSA levels had shown signs of going up again from my low of 0.68, this had risen to 2.78 3 weeks ago. This is still relatively low, but of course represents a rise which was escalating. I have been on some additional tablets for the last 3 weeks and the good news yesterday was that my PSA had dropped by more than 50% to 1.3. So thjats good news.

Now Christmas was a quite low key and quiet, and we looked forward to New Years eve where we were spending some time with friends. However, I was very tired after Christmas, so Sarah took the kids, and I went to bed at 9pm! The dog came and joined me at midnight, even though she is not allowed upstairs as she hates fireworks and we had a lot going off. Then she set off again as Sarah returned home, and we had a small amount of family time together. Thanks everyone for all your kind wishes, cards and thoughts over Christmas, we really appreciate it

Then on New Years Day we have went out to Sian and Dee's for a lovely roast dinner, and spent most of the post dinner time talking to the police as it seems we saw an armed robber leaving the scene of the crime. I thought he was a bit suspicious as he came through the church but Sarah thought he was the husband of someone at the church. Either way we put it to the back of our minds, at least untill the po;ice arrived. Then of course it was time to rack the old chemo brain to remeber exactly what we saw LOL . So Ross look forward to speaking to you soon!

A few posts I put some lyrics up, and I have some more to put up today, the ;ast couple of verses and chorus from Bon Jovi's Livin on a Prayer


We've got to hold on to what we've got
'Cause it doesn't make a difference
If we make it or not
We've got each other and that's a lot
For love - we'll give it a shot

Whooah, we're half way there
Livin on a prayer
Take my hand and we'll make it - I swear
Livin on a prayer

We've got to hold on ready or not
You live for the fight when it's all that you've got
Whooah, we're half way there
Livin on a prayer
Take my hand and we'll make it - I swear
Livin on a prayer