johnr's blog

bubbles and snowflakes a christmas video from the rockafella centre NY 2010

2010-12-01T21:46:08Z

Sorry cannot upload the video so go to you tube to watch I think its great and watch it in full screen its only a couple of minutes

enjoy john

http://www.youtube.com/watch?v=4Qt1bmVdTS8

Xmas pictures from new york

2010-12-01T20:59:25Z

here are just a few of the pictures I took of the various window displays and xmas lights last weekend in new york.

we had a great time watching macys parade (seeing Santa) shopping on black friday then relaxing and playing the tourist. Lots of pics and memories, just thought I would share some to introduce some festive cheer. As you will see the designer shops are very different.

next challenge is to upload a great video for all to enjoy

ho ho ho merry xmas

A year post treatment and chemo brain still strikes

2010-10-15T21:49:41Z

As there has been alot of sad news again, we seem to havespells of this, I thought I would share my one year post treatment treat.

12 months ago on the 15th oct I had my final r-chop treatment and was totally goosed but relieved that it was finished and I had survived it, and like lots of others wondered had it worked, I was sure it had but we had to wait and see so it was recovery phase. Well I have made it to a year and guess that makes me a stat so next goal is 2 years.

Anyway I digress to celebrate we went to our usual bolt hole in the Lakes and I was determined to do a longer walk and higher climb than last time, so we decided to do Ambleside to Troutbeck then upto Wansfell Pike for those who know the lakes. This meant parking in Ambleside for suficient time to allow us to enjoy the walk, first mistake, chemo brain strikes. I convince myself that I can buy 5 hours of parking, you cannot its 4 or 6hrs. So I put in the £5.30 thinking 5 hrs will be fine, push the button for the ticket and 4hrs appear in the little window and the ticket is printed. I realised what I had done and as you cannot take the ticket back, don't know why exceptions cannot be made for us as we do have a disability ha ha, I head back to the car and explain I have cocked up again thanks to my chemo brain. Normally its a 3 to 4 hrs hike if you are fit so we think fine we will do it.

We head off and enjoy the walk taking in the views of windermere and the Langdales as we walk parallel to the lake climbing as we go. Make it to Troutbeck with plenty of time and take a breather, then head off to climb upto Wansfell so intially we head towards Kirkstone pass then turn upto the summit. Still thinking we have time, stop for another breather and enjoy the view of the Lake and down to Morecambe Bay and across to the yorkshire dales, its a clear sky and about 22c. Then its a 10min hike and we are at the top, but so are about a million flies, where have they come from so it spoils it a little so its a 360 degree set of pictures and we head down thinking its only about 20 mins, second mistake. Since we last did this walk some volunteers who get a strange kick have built a path from the top of the pike all the way to the road that leads back into Ambleside. why would you want to lug large stones up a hill? 20 mins became 40 and as we got closer to running out of time descending on this path became harder and my lack of strength started to kick in as most of the way down was really steep. So with wobbly legs and totally knackered we made it back to the car 10 minutes late but no ticket fortunately. And have I suffered since 3 days of being stiff and struggling to walk until I get moving, and today is the first day it has not hurt, so that will teach me.

But we have to celebrate and we have to push because we need to win and be incharge and I could not think of a better way to celebrate, so it was back to the hotel, a nice meal and an even nicer bottle of white, life can be good and as all athletes say, no gain without pain so I guess I must be an athlete again ha ha. So we laugh rather than cry when chemo brain strikes and it seems to strike more these days which means more laughter, every cloud etc.

and the next challenge will be to get to 2,000 feet or higher but that may have to wait till next year, we will see. Keep on enjoying everyday and for those having treatment hang in there there is a light though at times it may appear dim.

take care john

Well done to all great north run runners

2010-09-19T16:11:09Z

Just thought it would be good to say well done to everyone who took part in the run today and raised money for the various cancer charities which in turn help all of us patients.

so from me thanks and well done

John

t'was Groundhog day - a week before easter

2010-03-28T18:46:58Z

It was nearly a year ago when I was admitted for investigations and found out I had cancer, but it was the Saturday before Easter weekend and I escaped on Easter Saturday 2009.

Roll on 2010

So yesterday was the Saturday before Easter and yes you guessed it I was admitted again for investigations as I had severe abdominal pain again, but a totally new type of pain. So I appeared on ward 13 and Rachael the staff nurse was on duty again, how spooky is that.

Anyway the good news is I escaped before midnight when I was told I could either stay in overnight or go home, so I took the home option. It turns out I had experienced either a twisted bowl or kink in the bowl which is what was causing the pain. I was lucky it settled back to normal, its one of the things that can happen after having your bowel handled, in my case it was taken out and put back as it was the only way they could get the biopsy and they checked for secondaeiws at the same time. The registrar explained that the bowel is like wriggly worms and once disturbed is prone to such things. So as well as my residual mass, scar tissue galore I now am the host to wriggly worms ha ha.

So I escape for another episode

till the next time

hope all is well with everyone ....john

Quick results, Positive news, another good result

2010-02-15T20:53:20Z

Well hows that for good service, had my PET scan on Friday morning and the consultant got the report today and I got a call from one of the heamatology nurses with the results tonight.

The scans are done by the private sector and therefore reports done by consultants who do private work for them, I had not expected such a quick turn around but pleased it was. So onto that brief call updating me on the results.

My NHL is stable, showing limited activity and is as would be expected following treatment. So not having time to digest and ask any questions as I was sorting appointments etc, my interpretation is.

I still have a mass which relates to the comment limited activity, but that there are no active cells showing so thats a positive result as if it was bad news they would have told me. So, so long as not too many urgent case end up on the list I will be discussed on Friday at MDT and will see the consultant on Tuesday 23rd, when I can ask some questions and hopefully move onto 3 monthly checks, now that will be a result to celebrate.

Another year older - Clouds, Silver Linings & Snow

2010-02-12T22:03:22Z

Well last week I became another year older and that’s all thanks to the wonders of chemo and the NHS. I should have been celebrating in Tenerife but the docs would not sign me off as fit to travel so it was off to the Lake District for 3 nights and as we all learn with this disease every cloud has a silver lining just you don’t always know.

I had always wanted to be in the Lakes in the winter when it snowed and as we arrived at the hotel it started snowing for over 3 hours, in between taking photos I sat in front of the log fire drinking nice milky coffee watching the flakes get bigger and bigger as the sun went down. This was followed by a lovely meal and a bottle of white.

The following day was my Birthday and off walking in Little Langdale and taking lots of pictures then off shopping, eating and drinking to boost the local economy, followed by another great meal and another bottle of that white. My birthday treat from the hotel was 2 desserts as I said I could not decide so it was poached pear in a chocolate sauce and treacle tart with vanilla custard mmmmmm!

Elterwater Valley

Oh and more picies as we had a mini sunset

Friday we headed north and left the mists behind and found the sun in Borrowdale, this was a day of resting driving and more photos with a journey up Hardknot pass and back via Rhino pass with quiet clear roads to let rip on and have some fun.

Saturday was a lovely but cold day and after picking up some things we wanted in Grasmere we got a picnic and headed off to Ullswater where it was stunning, still lake, clear blue sky with some fluffy clouds. The scenery was magnificent and the photos do not do it justice.

Ullswater from Glenridding

Ullswater looking to Kirstone pass

So it was 12 months to the week since we had had a proper break and it turned out to be so much better than Tenerife so I have done something right in a previous life to have the sun shine down on me and allow some dreams to be realised and boxes ticked.

On my return it was chase the scan time so that’s was booked for Friday at the Freeman in the mobile unit as it’s a pet scan and we don’t have a permanent one in the north, so pray its not too cold for me on Friday.

Well Friday has come and I have had the scan and it was much warmer, another week at work where the 4th day on the trot became very tiring and an early finish was needed. So it looks like its still going to take some time to get up to ful time but its nice having to engage the little grey cells again, that is the ones left following chemo ha ha!

So it’s fun time again though I am hoping that waiting for the results won't be a problem but as we all know this is a roller coaster ride where we ride blind never knowing where the highs and lows are.

Best wishes to everyone ...john

Karen hope the SCT has gone to plan and you are now on the road to recovery.

take care all

Post chemo joys and blues

2010-01-15T14:27:59Z

Well had my review with the consultant its now 3 months since my final chemo, only had to wait half an hour so thats not bad, would have been quicker if I had not had to wait for bloods to be done.

In gereral they are happy with my progress, chatted about how I felt and issues I had with the after effects of chemo and all as to be expected, but when I asked was I fit to travel for insurance purposes.... after a may be, probably ok, well better wait till after the next pet scan to make sure, so no trip to tenerife, it was a bargin too. So I have to wait till the end of Feb to have the scan and see him again to get confirmation re my status. which means they are happy I don't need monthly check ups, thats good. Talked about the odds of it reoccuring and signs to lookout for just to confirm what I understood, he explained I would still be experiencing various aches and pains as I had been through alot. Yet I find I don't think that way and it is hard sometimes just to step back and accept this is how it is as I don't know how it should be if that makes sense.

So it has set me contemplating what do we really expect post chemo/surgery, when does the peripheral neuropathy disappear or is this how it will be, if so I want a new set of feet lol. Why do I suffer with a dry mouth and have to use synthetic saliva when it was only an issue at the start of chemo and seems to have crept back long after chemo finished. With the various abdominal pains how can you ever be sure you know what your body is trying to tell you. no one knows!

I guess I am not alone in moving forward and I know life won't be the same but I will try dam hard to make sure that its my like and not controlled by those evil little B Cells that thought they would come out to play. Hopefully they have been kicked into the long grass and are lost and long may it stay that way.

Wells thats enough of contempating today now on with the serious stuff, tonights meal ..... think it will have to be beef and squash stew with cheddar mash, off I go to prepare ... oh and a glass of nice chilled white cheers

hope everyone is as well as can be expected

john

Goals for 2010 - need to start thinking, or do I?

2009-12-30T13:27:25Z

As we all do when we complete our treatment plans we stop and draw our breath and wonder how things will be. I have been lucky that despite some setbacks during chemo and post treatment scans, I have still achieved the goal I set to return to work in January. So its back to work on a phased return mixed with annual leave so that takes me to April and hoping to be working a full week by then, guess thats one goal.

Having a successful PET scan around the end of Feb is another which will let me plan more longer term I hope and start to move on.

And this will I hope allow me to plan a return visit to New York as a big thanks to my wife who has been my carer throughout this challenge and who has been a true rock.

Other than that I need to decide what I want and need to be important in my like, like many others you learn that people, time and thought are key elements of life post treatment.

so on the wet snow day I sit and contemplate what the future holds and how will this experience influence the rest of my life, as you can tell I don't have many answers but feel that I should but also realise I need time to sort it out, so may be goals no longer become important and its about the moment.

anyway enough rambling from me, have a good new year everyone and I wish you all health and happiness and may your dreams and wishes become reality.

PS please promote the what now calendar if you can

regards .... john

Good News for now 3 months watch and wait, Merry Xmas to me (and everyone else)

2009-12-01T19:38:01Z

Hi All

An update following today’s consultation, .... and roller coaster ride of the last 3 weeks or so,.... when, after the CT scan report came back showing I still had a mass, I was told that further treatment would be needed. I then saw the consultant who said the MDT meeting was inconclusive, they could not say the mass was not active and that they wanted me to have a PET scan and that even if I had 2 negative scans it would not mean I was clear and that radiotherapy was still a likely option but they would send me for a Pet Scan and discuss it further.

The PET scan has also come back negative which means that whilst the mass is still there and always will be, it does not appear to be active and the bowel is showing as inactive as well.

Normally they would send patients for radiotherapy as a backup, however:

-as things are under review as they start to use PET scans more and radiotherapy less and

-given where my cancer is and the potential side effects from radiotherapy

They have decided to put any further treatment on hold as they do not want to carry out any unnecessary treatment now, which may be needed in the future.

So plan B or maybe even C is – watch and wait, I will have a repeat PET scan in 3 months along with monthly check ups to monitor my progress, if it’s still inactive in 3 months then I may be considered to be in remission, though that’s a word they do not use these days.

So I take this as good news, I know it will return, but at least at present this battle may have been won.

Thanks to everyone who has wished me well and sent me good wishes messages for todays meeting and for all the advice and support to get to this point.

Strong minds and determination can produce results and there are many examples on here, so those who are starting their journey, there is hope and hang in there we are not statistics we are fighters.

Cancer Care report web link

2009-12-01T08:08:36Z

For anyone who is interested this link will take you to the full 88 page report which gives some stats on each PCT. Happy reading.

http://i.telegraph.co.uk/telegraph/multimedia/archive/01534/Full_cancer_report_1534203a.pdf

The call I did not want ... so what comes next

2009-11-06T09:16:32Z

Had my CT scan Tuesday, after finishing my 8 R-Chop and chased the outcome of the scan this morning as the team are usually very good, but as they did not know they were not looking for it.

Anyway just had the call back and it was not the news I wanted but half expected, there has been a further reduction in the mass but there is still some left. They did not say how much or whether the bowel was clear as well, just that they will have to study the imaging and see what is best for the next step. Had i rung earlier then I would have been squeesed into MDT meeting today so it will be next Friday now and meeting with the consultant on Tuesday 17th.

Not looking forward to telling everyone as they were all hoping for the best possible outcome, but we all carry the expectation of others on our backs and sometimes it would be nice to not have this concern.

Well return to work in January is off now so its deep breath and focus on the next stage what ever that may be. Think a walk on the beach is required to bring some laughter into the weekend.

Probably have to be Sunday if its not to bad weather wise as she who must be obeyed is running a swine flu clinic on Saturday till 1.00pm so thats Saturday gone as she will be goosed when she gets home and will want to relax.

Will update after the 17th

have a good weekend everyone hope you all manage a special moment, I will be making sure we do.

john

Laughter and joy the best painkiller around

2009-10-05T09:19:17Z

Just thought I would share my fun weekend, as it reminded me that fun and laughter are the best painkillers and they come free. Currently I have shingles so treatment is on hold till it clears, I know everyone said its painful and I can confirm it is especially when it tracks round to the breast, you would think someone was tweaking my nipple constantly when the pain killers are not working.....ouch and sleeping on one side is another experience.

Saturday was a quiet day due to the weather, play on the computer, have a short walk to try to help get some fitness back, pick up some conkers as I wander along the riverside as the wind has blown loads down and back home. We are lucky as we live on the edge of the countryside and next to a river. Get home and reread the camera manual as we were going out to take some photo’s on Sunday. The camera a canon 50D was one of my treats once I got out of hospital, even though I have taken over 2000 pics with it, still getting to grips with digital slr’s.

Plus she who must be obeyed wanted to catch up on house work as caring for me means the house gets left, so I do my best to keep out of the way and lift my feet at the correct time.

Sunday, lie in till 8.45 which is a nice treat, played online a bit again, had a lovely lamb roast for lunch with lots of mint sauce made with balsamic vinegar its so much better than the standard type, followed by some New York cheesecake, well a quarter of a cheesecake actually, the steroids are my excuse.

Then off we head to the coast as its only 10miles to the nearest beach, next to the one used in Get Carter for those who remember and Alien was also shot there too.

The sun is still shining and the traffic is busy which is unusual, but when we get there we see there is a horse fair on, just along from the beach. We park on the cliffs and walk down to the beach, there are a few about, families enjoying the last of the summer sun, dog walkers and several fishermen.

Jackie was taking the pictures and was not used to the camera so I was having to give instructions and as many of you will understand the brains of men and women are different, we use different languages but we get there and only a few have my head missing.

We walk along the beach to the harbour taking lots of pics of me, the sea and the stormy waves (little ones). Decide to get closer to the water the tide is coming in, and catch a big wave breaking behind me. Jackie is standing on a wall on the beach about 5mtrs away, takes some pics and shouts run, ... to late I am standing in the sea, run to where she is, jump on the wall and the water is still coming both of us get soaked so I jump back into the sea as the water retreats. Anyone one watching would be thinking who are those daft !!!!!!!. Well we laughed and laughed all the way back along the beach and up to the car, soaking wet to just below the knee.

Warning Gore-Tex shoes are not sea proof.

All the time we were out and laughing I felt no pain, back into the car and bingo pain returns. Back home and a milky coffee and cookies, download the pics then start to edit them and laugh lots more. A day we will both remember so Andrew if you read this not jumping in puddles, but the north sea, same effect though.

I know from the chat room and various posts a number of people are having a hard time, just remember there are magic moments out there waiting for all of us.

John

shingles and r-chop treatment

2009-09-26T16:12:46Z

Hi All

would have posted in chit chat on old site but here we go my first blog as I come to the end of my chemo treatment.

I have NHL LDBC and was due to have my last treatment of 8 R-CHOP's on Thursday coming, well I am guessing that won't happen now. My bloods took a nose dive on Tuesday when I went for my regular check up after treatment, so its no suprise that I have ended up with shingles, but I have been really good throughout the treatment so am dissapointed I got this close to getting through with only the regular side effects. A rash appeared last night but was not sure what it was as I have spent a large part of the last 2 days in bed with a bad back, well this morning the rash was worse and had moved round from my back to my chest. We new what it was but had to go to the out of hours clinic to have it confirmed. I now have to take an anti-biotic 5 times a day and they are bigger than the horse pills you get as part of the treatment.

So its a call to my specialist nurse on Monday to find out what happens now, if anyone has been in a similar position would love to hear what happened to you. How long was your treatment delayed for?

Well if the saying that things come in 3's is true I wonder what is lurking around the corner LOL

To all the regulars I enjoy reading how you are all doing and hope all is well with everone this fine weekend, sods law for me to wreck all my plans but hey out there is someone much worse than me so I am not complaining, just very flustrated, where is that vent your anger forum ha ha

John