Now that chemotherapy has finished and I have had the scan results Clare and I are keen to get back to as normal a life as possible so this is the last post from me as I face getting fit again and hoping the cancer stays away for many many years.
If I start again it will be bad news and the cancer is back so here's hoping this is it for a lonnnnnggggg time. In the meantime I am going to life my life to the fullest. Cancer is terrible for the sufferer and loved ones but it gives you a unique perspective on life only a few can relate to. Without labouring this it's time to look at life a whole new way. If you are lucky enough to share a pint with me I will no doubt bore you with what all this means to me :)
It's been a hell of a year but I am looking forward and will deal with the complexities of living with this disease the very best I can. On the plus side I have a great wife and kids and a lovely new baby daughter. My boss and colleagues have been incredibly supportive and I am very thankful to my friend Jon for his charity efforts. Also we owe a lot to many others from the school mums who helped out with school runs to those who put up with me when I was not feeling too cheerful about my situation.
I do plan my own charity event next October next year. Inspired by Jon and others I plan a coast to coast cycle run in Ireland to raise money for research into lymphoma. I will no doubt run a blog on these adventures and chase everyone for sponsorship :)
That's all fom me. Wish us luck and thanks for reading.
Tuesday 6 December 2011
Scan results
Got scan results today. Summary is I have good partial remission (complete is very rare with my disease). All the enlarged lymph nodes are pretty much normal size with the exception of 1 which is greatly reduced from 5cm x 5cm to 1.7. Normal size is 1cm and the enlarged one may only be that size due to scar tissue. All round a good result and consultant is happy.
What's next?
Well as planned I get maintanence treatment every 8 weeks for 2 yrs. This only takes a couple of hrs and has no side effects. How long I stay in remission is unknown. Could be a couple of years or could be 20. Who knows. The maintanence treatment is to push the cancer further away and keep me in remission so if that does the trick I will be good.
When it does return i will have a few options. A stem cell transplant which although currently risky can cure the cancer or possibly other treatments and many are on the horizon which can cure or greatly extend remission. Thinking positive here.
The best I can do in the meantime is get healthy, live well and get stuck into the greatest life possible with my lovely kids and Clare. 1st step is to get well then start on the push to fitness and live healthily.
Right now I feel pretty good and although far from 100% well I am working longer days than before and feeling more up to the normal day to day.
What's next?
Well as planned I get maintanence treatment every 8 weeks for 2 yrs. This only takes a couple of hrs and has no side effects. How long I stay in remission is unknown. Could be a couple of years or could be 20. Who knows. The maintanence treatment is to push the cancer further away and keep me in remission so if that does the trick I will be good.
When it does return i will have a few options. A stem cell transplant which although currently risky can cure the cancer or possibly other treatments and many are on the horizon which can cure or greatly extend remission. Thinking positive here.
The best I can do in the meantime is get healthy, live well and get stuck into the greatest life possible with my lovely kids and Clare. 1st step is to get well then start on the push to fitness and live healthily.
Right now I feel pretty good and although far from 100% well I am working longer days than before and feeling more up to the normal day to day.
Saturday 26 November 2011
Last Achy week
Had mild back pains all week as well as odd stomach muscle and neck pains. Seems to be easing a bit tho. Glad it's the last week of these aches. Should just have the fatigue to deal with from next week and pushing to kick that as soon as I can!
Starting early planning for my charity bike run. Very early in fact as I won't do it until Oct! Looking at cycle computers with Gps as my Xmas pressie and have my contact at charity comg back to me on routes in Ireland and training plan hopefully. Aiming to get on my bike next week and very slowly ease in. So looking forward to being fit.
In other news kids already getting xmas mad here. School Xmas fayre tomorrow. Should be fun!
Starting early planning for my charity bike run. Very early in fact as I won't do it until Oct! Looking at cycle computers with Gps as my Xmas pressie and have my contact at charity comg back to me on routes in Ireland and training plan hopefully. Aiming to get on my bike next week and very slowly ease in. So looking forward to being fit.
In other news kids already getting xmas mad here. School Xmas fayre tomorrow. Should be fun!
Tuesday 22 November 2011
Award winner
Last night I attended an awards event hosted by luekemia and lymphoma research in London. My friend Jon was invited for his run and he kindly asked me to join him.
What a great evening. Great to see so many great fundraisers, drink champagne with Jon with an amazing view of London and event better Jon won an award for his run. Alastair Campbell presented it to him as well! It was very bizarre hear Alastair Campbell talk about me, Criterion Games and baby Lily. Was great to see Jon up there get the award. Great job!
The whole thing really inspired me for my own biking charity event next year and I have a contact at the charity now who will help me get this organised.
In other news it's achy week and so far I am not feeling too bad despite my night out. Took the last of my drugs this morning as well so threw the pharmacy paper bag in the bin with an amazing sense of pleasure! Another milestone met. Just over 1 week until my scan!
What a great evening. Great to see so many great fundraisers, drink champagne with Jon with an amazing view of London and event better Jon won an award for his run. Alastair Campbell presented it to him as well! It was very bizarre hear Alastair Campbell talk about me, Criterion Games and baby Lily. Was great to see Jon up there get the award. Great job!
The whole thing really inspired me for my own biking charity event next year and I have a contact at the charity now who will help me get this organised.
In other news it's achy week and so far I am not feeling too bad despite my night out. Took the last of my drugs this morning as well so threw the pharmacy paper bag in the bin with an amazing sense of pleasure! Another milestone met. Just over 1 week until my scan!
Wednesday 16 November 2011
Final chemo done!
Last treatment yesterday. Fairly usual crappy experience. Spent afternoon in bed and after helping get kids to bed went off to bed again myself. Feeling better today but still pretty tired.
I have a scan in just over 2 weeks followed by appointment with doc to go over results then that's me until first maintanence treatment in 8 weeks.
Really hoping achy week not bad this week and I am on road to normality by Xmas.
I have a scan in just over 2 weeks followed by appointment with doc to go over results then that's me until first maintanence treatment in 8 weeks.
Really hoping achy week not bad this week and I am on road to normality by Xmas.
Wednesday 9 November 2011
Frustrations
Hate to moan, but hell it's my blog so who cares, but what a mixed week. For a week 3 it's been challenging because I have pushed myself harder than ever under treatment and been frustrated I cannot achieve as much as I want. I should probably be chuffed I have managed so much but instead I am annoyed how I still feel held back. I am such high maintanence!
We had a fireworks party over at neighbours which we all enjoyed, was godfather at a best friends baby's baptism in London and had two full days of meetings at work - first full days since chemo started.
And it's only Wednesday night!
Looking forward to the weekend, getting my chemo out of the way and looking forward best I can. I am so glad Tuesday's is the last. I am sick of the drugs, sick of the tiredness, sick of putting Clare through the stress of picking me up with the kids cos I can't drive, sick of those hospital beds, the smell, the food, every little detail of the experience of being in the hospital.
We had a fireworks party over at neighbours which we all enjoyed, was godfather at a best friends baby's baptism in London and had two full days of meetings at work - first full days since chemo started.
And it's only Wednesday night!
Looking forward to the weekend, getting my chemo out of the way and looking forward best I can. I am so glad Tuesday's is the last. I am sick of the drugs, sick of the tiredness, sick of putting Clare through the stress of picking me up with the kids cos I can't drive, sick of those hospital beds, the smell, the food, every little detail of the experience of being in the hospital.
Wednesday 2 November 2011
Ouch!
Week 2 and it's achy achy time. Suffering awful back pains this time but trying to resist the heavy pain killers as they could upset me and i am taking enough crap right now.
Taking the afternoons to rest so I can work in morning and help with kids at night but still suffering. Trying to be positive that the next time I go through this will be at end of chemo but still pain is hard and making me grumpy as hell.
Taking the afternoons to rest so I can work in morning and help with kids at night but still suffering. Trying to be positive that the next time I go through this will be at end of chemo but still pain is hard and making me grumpy as hell.
Sunday 30 October 2011
Day of the Big Run
Today Jon Lawrence, my friend and colleague ran the Great South Run and beat his record time. As Jon would say 'Strong!'
He has raised nearly £3,500 for Leukemia and Lymphoma Research, an amount that EA will match. The man should be very proud of himself!
He even made it to be fund raiser of the month. I am very touched by his commitment and effort to raise much needed funds and many thanks to all those people who sponsored him.
In other news, we all went to a Halloween and Fireworks party on Friday night. The kids loved it and we had a really nice time eating and drinking outside at the country club as it was such a mild night.
End of the half term holidays today. Its been a tough one what with it being treatment week but the good news is only 2 weeks until the final round of chemo.
On Tuesday my consultant took me through the steps thereafter:
I will get a scan on 1st of December to assess how well treatment has gone then starting 10th Jan I will get what's called maintenance treatment every 8 weeks for 2 yrs to keep the cancer in remission. At least that's the theory and in most cases what happens.
So looking forward to Xmas now. Starting to get some aches and pains as usual for this stage but nothing too troublesome yet.
He has raised nearly £3,500 for Leukemia and Lymphoma Research, an amount that EA will match. The man should be very proud of himself!
He even made it to be fund raiser of the month. I am very touched by his commitment and effort to raise much needed funds and many thanks to all those people who sponsored him.
In other news, we all went to a Halloween and Fireworks party on Friday night. The kids loved it and we had a really nice time eating and drinking outside at the country club as it was such a mild night.
End of the half term holidays today. Its been a tough one what with it being treatment week but the good news is only 2 weeks until the final round of chemo.
On Tuesday my consultant took me through the steps thereafter:
I will get a scan on 1st of December to assess how well treatment has gone then starting 10th Jan I will get what's called maintenance treatment every 8 weeks for 2 yrs to keep the cancer in remission. At least that's the theory and in most cases what happens.
So looking forward to Xmas now. Starting to get some aches and pains as usual for this stage but nothing too troublesome yet.
Friday 21 October 2011
Prestige
Not a bad week despite having a cold. Been busy at work and home with the baby. Feeling a bit sore tonight but I think that's just tiredness from the busy week.
After months of play when I could get time I have finally hit Prestige on Call of Duty modern warfare 2 (rank 70+). Clare is happy cos i have been playing for a while and playing this game online winds me up.
Gaming season has very much begun with a new big hitter out every Friday. Now if only I had more time to play!
Quiet weekend planned this weekend. Lots of nice fAmily time before round 7 of chemo on tues.
After months of play when I could get time I have finally hit Prestige on Call of Duty modern warfare 2 (rank 70+). Clare is happy cos i have been playing for a while and playing this game online winds me up.
Gaming season has very much begun with a new big hitter out every Friday. Now if only I had more time to play!
Quiet weekend planned this weekend. Lots of nice fAmily time before round 7 of chemo on tues.
Monday 17 October 2011
Clan Gathering
Had my parents, sister and brother in law visit until Sunday which was busy but really nice. Unfortunately I now have a cold so dealing with that and hoping it does not get any worse.
Was nice to see the family, take them out for a lovely lunch and get some time out with Clare.
Week 2, traditionally the 'achy back week' was less severe that my last cycle but still slowed me down a bit.
Lily doing well. Over a month already and full of smiles for daddy - result!
Getting into the groove of week 3 with added sniffles.
One more week then its cycle 7 - the penultimate one. Feels like the end is getting closer. Can't wait to feel healthy again!
Was nice to see the family, take them out for a lovely lunch and get some time out with Clare.
Week 2, traditionally the 'achy back week' was less severe that my last cycle but still slowed me down a bit.
Lily doing well. Over a month already and full of smiles for daddy - result!
Getting into the groove of week 3 with added sniffles.
One more week then its cycle 7 - the penultimate one. Feels like the end is getting closer. Can't wait to feel healthy again!
Tuesday 11 October 2011
Family time
Had my brother visit over the weekend which was busy but nice. I felt pretty good over the weekend so we managed to go for a walk and take the kids swimming. This week my parents, sister and brother in law visit which I am looking forward to. I have even been uber organised and sorted out Xmas presents for them to take home with them.
Unfortunately the aches and pains have set in again so I am not sleeping or functioning as well as I would like. Hoping pains subside so I have energy to do family stuff.
My friend Jon, who is running the Great South Run has managed to get a piece about his run and I in the lymphoma association newsletter and website so I have been writing my contribution for this about my diagnosis and experience with cancer. All good publicity to hopefully raise more money and awareness.
Unfortunately the aches and pains have set in again so I am not sleeping or functioning as well as I would like. Hoping pains subside so I have energy to do family stuff.
My friend Jon, who is running the Great South Run has managed to get a piece about his run and I in the lymphoma association newsletter and website so I have been writing my contribution for this about my diagnosis and experience with cancer. All good publicity to hopefully raise more money and awareness.
Wednesday 5 October 2011
Number 6. 2 to go!
My third week on cycle 3 was great. After the pain and frustration of week 2 I felt almost normal. I felt focussed at work and in good spirits. What a roller coaster! Was also nice to see my Bro at the weekend.
Go round 6 chemo yesterday and feel not too bad so far but week 2 is the one to watch. Got my detailed results from scan and all pretty good. Swollen lymph nodes all heading down and termed as 'partially reduced'. Doc happy with this so hopefully they will keep shrinking as much as possible. I will get a scan at end of chemo then another 1 yr into my maintanence therapy.
My niece and nephew did the Cumbrian run this weekend to raise funds for lymphoma research. Very proud of them!
My friend jon also does the great south run at the end of the month.
Lily, clare and kids doing well. Clare dealing with lily still at nights so I can rest. My wife needs some kind of medal! She is great!
Parents, sister and bro in law visiting next week which is great so hoping week 2 more forgiving than the last time!
Go round 6 chemo yesterday and feel not too bad so far but week 2 is the one to watch. Got my detailed results from scan and all pretty good. Swollen lymph nodes all heading down and termed as 'partially reduced'. Doc happy with this so hopefully they will keep shrinking as much as possible. I will get a scan at end of chemo then another 1 yr into my maintanence therapy.
My niece and nephew did the Cumbrian run this weekend to raise funds for lymphoma research. Very proud of them!
My friend jon also does the great south run at the end of the month.
Lily, clare and kids doing well. Clare dealing with lily still at nights so I can rest. My wife needs some kind of medal! She is great!
Parents, sister and bro in law visiting next week which is great so hoping week 2 more forgiving than the last time!
Thursday 22 September 2011
Frustrated...
Productive at work and nice wander out at lunch but then tonight I am knackered and suffering lots of muscular pain.
Been like this for most evenings this week. Not sure if it's because life is busy with baby or what but aches and pains a killer this time. Hoping this subsides later this week so I feel better soon.
Other news is baby Lily is doing well. She is so good. Clare taking the brunt so I can rest in evenings so we are both knackered...no fun.
Been like this for most evenings this week. Not sure if it's because life is busy with baby or what but aches and pains a killer this time. Hoping this subsides later this week so I feel better soon.
Other news is baby Lily is doing well. She is so good. Clare taking the brunt so I can rest in evenings so we are both knackered...no fun.
Wednesday 14 September 2011
Half Time Results
Cutting to the chase my scan results are good. My consultant has not looked at detail but all swollen lymph nodes, including the worrisome one deep inside are down nicely. He seemed pretty happy...so am I to say the least!
More detail in next appointment in 3 weeks. Also small lumps I found on my back a while back - that I have been keeping quiet about on blog - are very likely lypomas (spelling?) - harmless fatty tissue most of us have. Amazing how paranoid you get about your body going through something like this. Doc says they did not show up on CT scan plus ultra sound results good.
Other bonus is no planned Bone marrow check at the end. He will do another scan at end before I go on maintenance therapy at end of chemo.
So 5 down and 3 to go.
Very bizarre being in the hospital for chemo with Clare and my new born baby. All the nurses were coo'ing over her while all I could think about was how do I get my blood test done!
So far a little tired but hard to judge as we have baby Lily to look after although clare is doing most of the hard work through the night.
She is a good wee baby all round and the kids love her. Clares mum heads home to Scotland on Saturday so we are on our own from then. Her help has been invaluable this past few weeks.
More detail in next appointment in 3 weeks. Also small lumps I found on my back a while back - that I have been keeping quiet about on blog - are very likely lypomas (spelling?) - harmless fatty tissue most of us have. Amazing how paranoid you get about your body going through something like this. Doc says they did not show up on CT scan plus ultra sound results good.
Other bonus is no planned Bone marrow check at the end. He will do another scan at end before I go on maintenance therapy at end of chemo.
So 5 down and 3 to go.
Very bizarre being in the hospital for chemo with Clare and my new born baby. All the nurses were coo'ing over her while all I could think about was how do I get my blood test done!
So far a little tired but hard to judge as we have baby Lily to look after although clare is doing most of the hard work through the night.
She is a good wee baby all round and the kids love her. Clares mum heads home to Scotland on Saturday so we are on our own from then. Her help has been invaluable this past few weeks.
Sunday 11 September 2011
Dad Again
Little Lily was born on Saturday at 1am. She is 8 pounds 6 and a little sweetie. Clare was amazing.
Clare went in as planned to be induced on Saturday but as it happened the early stages of labour were starting so luckily no need for much help to bring the baby on. I arrived at the hospital at midnight after a call from clare to say it was all happening and baby was born just after 1am. A very fast labour...thank god for that as a I am not sure now I would have managed a long one with my fatigue.
Clare and lily got home next day so now we are settling in to baby world again. The kids love her and so far she has been pretty good although she was awake a lot last night. Clare is taking the brunt to let me sleep. She really is awesome. Her mum is still here as well which is a great help, cutting down othe chores and entertaining the kids a bit.
Had my scan on Tuesday so less than 36 Hrs to wait for results. I so hope I have good news.
Clare went in as planned to be induced on Saturday but as it happened the early stages of labour were starting so luckily no need for much help to bring the baby on. I arrived at the hospital at midnight after a call from clare to say it was all happening and baby was born just after 1am. A very fast labour...thank god for that as a I am not sure now I would have managed a long one with my fatigue.
Clare and lily got home next day so now we are settling in to baby world again. The kids love her and so far she has been pretty good although she was awake a lot last night. Clare is taking the brunt to let me sleep. She really is awesome. Her mum is still here as well which is a great help, cutting down othe chores and entertaining the kids a bit.
Had my scan on Tuesday so less than 36 Hrs to wait for results. I so hope I have good news.
Saturday 3 September 2011
No baby yet
No arrival of baby yet. Due date is actually mid month but Clare was early with Connor and Neve so expected the same.
Clares mum is here and has been a good help to us both. It's the last week of the school holidays as well.
I managed to work all week as usual despite some really nasty back ache mid week. Right now not feeling too bad at all, just tired from a busy day out with the kids.
Scan on Tuesday and results when I go in for next treatment on 13th.
Clares mum is here and has been a good help to us both. It's the last week of the school holidays as well.
I managed to work all week as usual despite some really nasty back ache mid week. Right now not feeling too bad at all, just tired from a busy day out with the kids.
Scan on Tuesday and results when I go in for next treatment on 13th.
Monday 29 August 2011
Bank holiday weekend
After a fun busy bank holiday weekend I am knackered. We went to Thai food festival and a local air show called Wings and Wheels. Was a lot of fun with the kids but lots of aches and pains in back and shoulders tonight. Still happy I managed to do everything we wanted.
Frustrated I could not eat all the lovely prawns at the Thai festival tho. When chemo is done I am eating shellfish by the tonne!
At work tomorrow and then picking up Clares mum from the airport so early night tonight!
No baby yet! Hoping for arrival this coming weekend...
Frustrated I could not eat all the lovely prawns at the Thai festival tho. When chemo is done I am eating shellfish by the tonne!
At work tomorrow and then picking up Clares mum from the airport so early night tonight!
No baby yet! Hoping for arrival this coming weekend...
Thursday 25 August 2011
2 days after cycle 4 chemo
Not too bad. Little bit tired and achey but better than cycles 1 and 2 by far. I get a scan in 2 weeks so I will know much better how treatment is going when I get results in mid sept for cycle 5. Fingers and everything crossed!
Hoping I am fit for a busy bank holiday weekend. No baby arrived yet but all set!
Hoping I am fit for a busy bank holiday weekend. No baby arrived yet but all set!
Sunday 21 August 2011
Getting close to half way
My 4th of 8 cycles of chemo is due on Tuesday. Been feeling ok most of this week until today - feel tired. I think it's due to having visitors and going out for dinner last night tho. It was great to see my brother and nephew and take Clare out for dinner at Kinghams in Shere but paying the price today. Never mind hopefully a restful sleep and I will be feeling a bit better.
Interesting development in the news - they have discovered that modified ecstasy could be a great treatment for leukaemia and lymphoma. So maybe a future of raves is ahead for me. Sounds like the Shamen were right about Ebenezeer after all :)
Wish me luck for Tuesday!
Interesting development in the news - they have discovered that modified ecstasy could be a great treatment for leukaemia and lymphoma. So maybe a future of raves is ahead for me. Sounds like the Shamen were right about Ebenezeer after all :)
Wish me luck for Tuesday!
Wednesday 17 August 2011
Every cycle seems a little different
Been working until around 3 this week which has been cool. Lots to keep me busy so enjoying that.
Fatigue has been fairly manageable this cycle but I have had aches and pains to varying degrees throughout. Each cycle really does seem a little different.
Meeting my good old mate Ewen tonight for dinner which will be really nice. He's just become a dad so lots to catch up on!
Also my bro and nephew arrive tommorrow so a busy few days ahead before I hit cycle 4! Half way there nearly!!
Fatigue has been fairly manageable this cycle but I have had aches and pains to varying degrees throughout. Each cycle really does seem a little different.
Meeting my good old mate Ewen tonight for dinner which will be really nice. He's just become a dad so lots to catch up on!
Also my bro and nephew arrive tommorrow so a busy few days ahead before I hit cycle 4! Half way there nearly!!
Monday 15 August 2011
Back from weekend away
Just back from a long weekend with the family. Visit to Hastings was a mixture of tacky seaside fun which the kids loved and visit to site of Battle if Hastings in the village called, er Battle. The lodge we stayed at was great with a view over the sea in the countryside They had a great wee pool and cheesy bar with entertainment. All good British holiday fun.
My aches and pains bothered me up until Saturday but now I just have a little pain if I push myself too hard. Hard to take it easy with kids and 8 Month pregnant wife!
Tonight we're home and getting Clares hospital bag ready and overnight stuff for the kids in case baby arrives before her mum comes down.
My brother and nephew visit later this week. Will be nice to see them and get some help with the kids. Back to work on tuesday - aiming to work till mid afternoon all week. Hoping week 3 is a good week as it should be. Certainly fatigue less than before which is strange as that is meant to get worse not better! Not that I am complaining.
My aches and pains bothered me up until Saturday but now I just have a little pain if I push myself too hard. Hard to take it easy with kids and 8 Month pregnant wife!
Tonight we're home and getting Clares hospital bag ready and overnight stuff for the kids in case baby arrives before her mum comes down.
My brother and nephew visit later this week. Will be nice to see them and get some help with the kids. Back to work on tuesday - aiming to work till mid afternoon all week. Hoping week 3 is a good week as it should be. Certainly fatigue less than before which is strange as that is meant to get worse not better! Not that I am complaining.
Wednesday 10 August 2011
Feeling like an old man
So not too tired but lots of aches and pains this week. Mainly back ache. Feel a bit like an old man creaking about. Still managing to work mornings tho.
Really wanted an hour or two on the golf course this week but so sore I can't.
Every cycle of chemo is a little different so far. Thankfully no progression in the numbness in my hands tho so fingers crossed that stabilises.
We are off on Friday for a long weekend so trying to pace myself so I can deal with the drive to the coast and have energy for a few days of fun with Clare and the kids.
Really wanted an hour or two on the golf course this week but so sore I can't.
Every cycle of chemo is a little different so far. Thankfully no progression in the numbness in my hands tho so fingers crossed that stabilises.
We are off on Friday for a long weekend so trying to pace myself so I can deal with the drive to the coast and have energy for a few days of fun with Clare and the kids.
Sunday 7 August 2011
Round 3 week 1 - not too tired
Was in work on Friday which was good. Tiredness less for week one so far although suddenly knackered tonight, likely due to late night last night. Clare and I went to see Super 8 - we are really taking advantage of the baby sitting service we joined! Good movie too.
I have slight numbness in my hands. Doc tells me this tingling is likely a side effect to one of the chemo drugs. Hopefully it won't get worse but if it does I may have to come off that drug.
Plan is to work at least mornings in coming week. Off for long weekend on Friday which will be nice. Clare really suffering now. Can't see her go for more than a few weeks. Babies arrival feels close. We make quite a pair with our aches and pains for different reasons!
I have slight numbness in my hands. Doc tells me this tingling is likely a side effect to one of the chemo drugs. Hopefully it won't get worse but if it does I may have to come off that drug.
Plan is to work at least mornings in coming week. Off for long weekend on Friday which will be nice. Clare really suffering now. Can't see her go for more than a few weeks. Babies arrival feels close. We make quite a pair with our aches and pains for different reasons!
Wednesday 3 August 2011
Day after round 3 drugs
Not a bad day so far, though I think the steroids are making me pretty wired. Really hot right now in Surrey so combination of heat and steroids meant very little sleep last night...although I still seem to be trucking on...
Doc really happy with my progress yesterday. He is planning a scan just after my next cycle to see how treatment is progressing in more detail. Hope he does not do another bone marrow but kind of suspecting he is planning at some point but does not want to tell me. Last one was hellish afterwards and I was under general anaesthetic that time. Normally they do them local. This involves sticking a huge needle into my back to extract some marrow to test. But it is a pretty important test.
Clare's birthday tomorrow. Hardly the celebration we planned but we'll have a nice day. I have planned a weekend away in Hastings for mid way though this cycle when I should be feeling pretty good.
In a way we're both denying this years birthday and planning a big double celebration for next year when I hit 40.
Doc really happy with my progress yesterday. He is planning a scan just after my next cycle to see how treatment is progressing in more detail. Hope he does not do another bone marrow but kind of suspecting he is planning at some point but does not want to tell me. Last one was hellish afterwards and I was under general anaesthetic that time. Normally they do them local. This involves sticking a huge needle into my back to extract some marrow to test. But it is a pretty important test.
Clare's birthday tomorrow. Hardly the celebration we planned but we'll have a nice day. I have planned a weekend away in Hastings for mid way though this cycle when I should be feeling pretty good.
In a way we're both denying this years birthday and planning a big double celebration for next year when I hit 40.
Sunday 31 July 2011
Round 3 coming up!
We took the kids to Arundal castle to a jousting tournament on Saturday. We had a really nice day. Neve loved wandering about dressed as a princess and Connor got a plastic helmet and sword. He wore the helmet all day like a Knight despite the sweltering heat. What a kid!
Both of us paying for it today tho. Very hot down our way which is all the more tiring for Clare.
Had a really nice chat to my Big Sis tonight. She's such a star. Planning the next few weeks tonight as due date approaches. Arranging Clares mums visit around chemo cycles.
Ending this cycle happy I could work and help out and managed a few pretty normal days. Here is hoping round 3 is kind to me,
Both of us paying for it today tho. Very hot down our way which is all the more tiring for Clare.
Had a really nice chat to my Big Sis tonight. She's such a star. Planning the next few weeks tonight as due date approaches. Arranging Clares mums visit around chemo cycles.
Ending this cycle happy I could work and help out and managed a few pretty normal days. Here is hoping round 3 is kind to me,
Wednesday 27 July 2011
The roller coaster
Having this truly is a roller coaster. On the plus side it's been great this week as I have managed to work into the afternoons but I have found I have been frustrated with my inability to get the things done I want to achieve. This is tough to deal with. I am so driven by getting things done that it constantly annoys me that I can't get there because of the fatigue I have to deal with through chemo.
However i just have to remember that it could be a lot worse and at least I can function. God knows how I would deal with this if I had sickness and other side effects too.
Putting my grumbling aside it's been good to be at work.
The kids are on holiday as well now so Clare can finally get a break from school runs without my help. 6 weeks until her due date now. We're looking at her getting induced early should baby not arrive before a chemo cycle starts so I can be there with her at the hospital. Not great but better than risk her going to the hospital alone!
Planning to work the rest of the week, have a nice weekend then dive into round 3 or chemo next week.
However i just have to remember that it could be a lot worse and at least I can function. God knows how I would deal with this if I had sickness and other side effects too.
Putting my grumbling aside it's been good to be at work.
The kids are on holiday as well now so Clare can finally get a break from school runs without my help. 6 weeks until her due date now. We're looking at her getting induced early should baby not arrive before a chemo cycle starts so I can be there with her at the hospital. Not great but better than risk her going to the hospital alone!
Planning to work the rest of the week, have a nice weekend then dive into round 3 or chemo next week.
Sunday 24 July 2011
Almost forgetting I'm on Chemo
Busy weekend and not felt too bad. Took kids to local forest Alice Holt on Sat and managed driving range and swing park today. A wee bit tired and slightly achey tonight but much much better than before on chemo. Going into work tomorrow and trying longer days to see how I get on.
I definitely feel the swollen lymph node in my neck is much reduced which is excellent. Just hope the big one deep inside near my kidney is shrinking nicely too.
Best thing is had to remind myself I am on chemo a couple of times. Strange I know but nice to not have it constantly on my mind.
I definitely feel the swollen lymph node in my neck is much reduced which is excellent. Just hope the big one deep inside near my kidney is shrinking nicely too.
Best thing is had to remind myself I am on chemo a couple of times. Strange I know but nice to not have it constantly on my mind.
Wednesday 20 July 2011
Not a bad Week 2
After some pretty nasty back ache and tiredness post wedding I am actually not feeling too bad this week. Managed mornings at work and consciously stopping pushing too hard so I can manage through the week without being too knackered. In a pretty good frame of mind all round.
It's been strange at work. Feel oddly disconnected from the day to day but am coming in with a different perspective than ever before. It's strange not being in my normal mode of ploughing through a lengthly to do list of problems to fix or tasks that need done.
School breaks up tomorrow for the summer so it will be funny having the kids around while I am at the house. Still hoping to work longer days next week so I won't see that much of them until my 3rd cycle of chemo the week after and it's back to being knackered again for a few days.
Going to see Harry Potter tomorrow night. Baby sitter booked and set for a night out with Clare. Looking forward to it.
It's been strange at work. Feel oddly disconnected from the day to day but am coming in with a different perspective than ever before. It's strange not being in my normal mode of ploughing through a lengthly to do list of problems to fix or tasks that need done.
School breaks up tomorrow for the summer so it will be funny having the kids around while I am at the house. Still hoping to work longer days next week so I won't see that much of them until my 3rd cycle of chemo the week after and it's back to being knackered again for a few days.
Going to see Harry Potter tomorrow night. Baby sitter booked and set for a night out with Clare. Looking forward to it.
Sunday 17 July 2011
Great night out
Went to Fionas wedding last night. What a fantastic wedding bash! Great to see everyone, awesome fireworks and all in her lovely garden.
Paying the price a bit today tho as totally knackered. Sunday on week one seems to be one of my bad days as that's when I come off the steroids. Still hopefully after a reasonably restful day I will be not bad on Monday and can get some work done this week.
Now we've tested put the new baby sitting service (wish we'd joined that ages ago) we might go and see Harry Potter later this week as well.
Paying the price a bit today tho as totally knackered. Sunday on week one seems to be one of my bad days as that's when I come off the steroids. Still hopefully after a reasonably restful day I will be not bad on Monday and can get some work done this week.
Now we've tested put the new baby sitting service (wish we'd joined that ages ago) we might go and see Harry Potter later this week as well.
Wednesday 13 July 2011
Cycle 2 - day 1
Yesterdays treatment went well. Got some good news from the Doc - he thinks my swollen nodes have got smaller. It's great to get this result so early so hopefully this will continue nicely. Also my blood count is good which means energy levels permitting I can go to the wedding we are invited to this weekend.
Hopefully my count will remain good meaning Clare, the kids and I can go away for a night to celebrate Clares 40th at the start of Aug - hoped to do something a bit more grand but not great timing. We are thinking we'll postpone the proper celebration until April and make it a joint celebration as I hit the big 4-0 as well.
Helping my friend Jon raise sponsorship for the run on my behalf (see link at top of page if interested). We are over £2000 now which is awesome! He's pushing on to break his £2500 target.
Resting today and hoping I am fit for a bit of work next week.
Hopefully my count will remain good meaning Clare, the kids and I can go away for a night to celebrate Clares 40th at the start of Aug - hoped to do something a bit more grand but not great timing. We are thinking we'll postpone the proper celebration until April and make it a joint celebration as I hit the big 4-0 as well.
Helping my friend Jon raise sponsorship for the run on my behalf (see link at top of page if interested). We are over £2000 now which is awesome! He's pushing on to break his £2500 target.
Resting today and hoping I am fit for a bit of work next week.
Sunday 10 July 2011
Weekend before round 2
Had not a bad weekend at all. Managed to cut the grass, look after the kids so clare could do a quick shop and go out for a country walk. Don't feel too bad but getting ready to be wiped again once I get injected with another round of crazy drugs and steroids.
Clare has had a tough week tho. At 7 months now she is quite big and getting tired very easily. She's not been feeling great at all. Normally at this stage I would ramp up and help loads so she could rest for the final run...not this time.
Jon, my friend has put his site up for sponsorship for the run he is doing for leukaemia and lymphoma research. He is running on my behalf so I am really touched. He's a top bloke!
Please sponsor him if you have not already. Details are:
http://original.justgiving.com/jonlawrence4
Wish me luck for cycle 2 of drugs on tues!
Clare has had a tough week tho. At 7 months now she is quite big and getting tired very easily. She's not been feeling great at all. Normally at this stage I would ramp up and help loads so she could rest for the final run...not this time.
Jon, my friend has put his site up for sponsorship for the run he is doing for leukaemia and lymphoma research. He is running on my behalf so I am really touched. He's a top bloke!
Please sponsor him if you have not already. Details are:
http://original.justgiving.com/jonlawrence4
Wish me luck for cycle 2 of drugs on tues!
Thursday 7 July 2011
Less than a week before more chemo
Week 3 and managed to be at the studio in the afternoons and work at home a bit in the mornings.
Felt good on Friday and I as a result over did it on the weekend with clare and the kids. Crazy think think teaching my son to ride a bike is over doing it! As a result had bad back pain until Tuesday. Also ended up with a rash on Monday which I think is a reaction to one of the drugs I am taking. Learning the importance of pacing myself and being aware of not pushing too hard. This is hard for me as I find it hard to sit on my backside even when I am well!
It's been really good to be in work. Also been getting organised for baby. Only 2 months now. Hoping baby does not arrive on days around my treatment otherwise I might not be able to go to the hospital with clare. That would be horrible.
Expecting to be completely knackered and out of action next week like last time they pumped me full of drugs. Time to watch Game of Thrones when I can concentrate!
Felt good on Friday and I as a result over did it on the weekend with clare and the kids. Crazy think think teaching my son to ride a bike is over doing it! As a result had bad back pain until Tuesday. Also ended up with a rash on Monday which I think is a reaction to one of the drugs I am taking. Learning the importance of pacing myself and being aware of not pushing too hard. This is hard for me as I find it hard to sit on my backside even when I am well!
It's been really good to be in work. Also been getting organised for baby. Only 2 months now. Hoping baby does not arrive on days around my treatment otherwise I might not be able to go to the hospital with clare. That would be horrible.
Expecting to be completely knackered and out of action next week like last time they pumped me full of drugs. Time to watch Game of Thrones when I can concentrate!
Saturday 2 July 2011
Nearly week 3
It's the 2nd weekend since treatment started and I am feeling less tired but my back is killing me and I felt sick last night. Frustrating to feel better in one way and worse in another. Still, trying to get on regardless.
Spoke to my buddy the other night. Was great to speak to another person with this complex cancer. She has been in remission for 5 years and had lots of useful advice on her experience with chemo and more importantly the challenges of living life after treatment knowing the disease will almost certainly return at some point. Very glad I took Clares advice to do this.
Was also in work on Thursday which was great. Also have some home work to get stuck into. Planning to be in a few days this coming week before cycle 2 starts. Doubt I can manage more than 1/2 a day at a time tho. Avoiding crowds and anyone with even a sniffle due to infection risk still although a little more relaxed than I was. Can't live like a hermit after all!
We had a cleaner start today. This took pressure of Clare who at 7 months should be resting more than she is. Nice to have someone clean while we took the kids out and chilled in the garden. We are doing anything we can right now to make life easier as it's tough having no family support around us. Lots of offers of help from friends which is great and Clare increasing the help from school mums for taking Connor in. They really are awesome.
Really hoping my consultant is happy with my blood on 12th July so I can be in work more and get out and about a bit when I feel well enough.
A friend has offered to run the Great South run on my behalf which really touched me. He will be raising money for lymphoma and leukaemia so get ready to dig deep ;)
Once I nail this bloody thing into remission and I'm back on my feet I'll be helping how I can as well. Can't promise a marathon from me. Think I would need a fair amount of training :)
Spoke to my buddy the other night. Was great to speak to another person with this complex cancer. She has been in remission for 5 years and had lots of useful advice on her experience with chemo and more importantly the challenges of living life after treatment knowing the disease will almost certainly return at some point. Very glad I took Clares advice to do this.
Was also in work on Thursday which was great. Also have some home work to get stuck into. Planning to be in a few days this coming week before cycle 2 starts. Doubt I can manage more than 1/2 a day at a time tho. Avoiding crowds and anyone with even a sniffle due to infection risk still although a little more relaxed than I was. Can't live like a hermit after all!
We had a cleaner start today. This took pressure of Clare who at 7 months should be resting more than she is. Nice to have someone clean while we took the kids out and chilled in the garden. We are doing anything we can right now to make life easier as it's tough having no family support around us. Lots of offers of help from friends which is great and Clare increasing the help from school mums for taking Connor in. They really are awesome.
Really hoping my consultant is happy with my blood on 12th July so I can be in work more and get out and about a bit when I feel well enough.
A friend has offered to run the Great South run on my behalf which really touched me. He will be raising money for lymphoma and leukaemia so get ready to dig deep ;)
Once I nail this bloody thing into remission and I'm back on my feet I'll be helping how I can as well. Can't promise a marathon from me. Think I would need a fair amount of training :)
Wednesday 29 June 2011
My Buddy
Into the second week after 1st treatment and feeling much more normal. Still a bit tired and achy but definitely much more human. Actually managed a trip to the driving range today! My swing is rubbish again so need to get my act together.
Still avoiding crowds and sick people of course. Trying to manage this best I can and still have some kind of life. Popping in to work tomorrow for a few hrs and hoping to do more next week before my 2nd cycle.
Contacted the Lymphoma association yesterday to get what they call a buddy - someone who also suffers from the disease who you can talk to. They put me in contact with someone who has a young family, got the disease at 40 and went straight into chemo like me. She has been in remission for 5 years now. Hardest thing for me right now apart from short term of next 6 months is living with the knowledge it will almost certainly return at some point. Think it will really help chatting to someone going through this. Gonna call her on Thurs.
The other contact Clare found who is going through diagnosis right now has finally had his results. He is the same stage as me but no nodes in risky places right now so is going on 'watch and wait' - meaning no treatment until lymphoma progresses. All swings and roundabouts as they are now debating whether this is a good strategy in the medical world.
11 year anniversary of day I met Clare on Friday - a very different life back then. No dinner out for us this year...we'll stay in and have a nice meal instead.
Still avoiding crowds and sick people of course. Trying to manage this best I can and still have some kind of life. Popping in to work tomorrow for a few hrs and hoping to do more next week before my 2nd cycle.
Contacted the Lymphoma association yesterday to get what they call a buddy - someone who also suffers from the disease who you can talk to. They put me in contact with someone who has a young family, got the disease at 40 and went straight into chemo like me. She has been in remission for 5 years now. Hardest thing for me right now apart from short term of next 6 months is living with the knowledge it will almost certainly return at some point. Think it will really help chatting to someone going through this. Gonna call her on Thurs.
The other contact Clare found who is going through diagnosis right now has finally had his results. He is the same stage as me but no nodes in risky places right now so is going on 'watch and wait' - meaning no treatment until lymphoma progresses. All swings and roundabouts as they are now debating whether this is a good strategy in the medical world.
11 year anniversary of day I met Clare on Friday - a very different life back then. No dinner out for us this year...we'll stay in and have a nice meal instead.
Saturday 25 June 2011
1st weekend on chemo
Well it's 5 days in now. Felt achy and tired every day but no sickness. Getting pains in different parts of body which is common and energy levels still suck. Tired often after the most basic task. Steroids screwing with me a little as well...making it hard to sleep and a wee bit agitated. Thankfully steroids finished for this cycle now.
Being ultra careful of infections. Washing hands a lot - super obsessive. Typical bad luck Neve has a tummy bug as well!
Despite all this off to not a bad start. Hoping this continues and I don't get anything worse in later cycles. Although I am told fatigue increases over months. Feels like a long road ahead...cycle 8 ends at start of December!
Clare reading up a lot on disease and various developments on horizon to prolong remission from it's return. Amazes me cancer research and research for other major diseases happens largely on donations, when we pay so much tax and pay for lovely big royal weddings etc!
We are starting a regular donation to the lymphoma association ourselves so we can do our bit.
Got out in the woods today with clare and the kids which was great. Also really nice to drive my mini with Plan B blaring out :)
Trying to keep life as normal as possible for sake of the kids.
Being ultra careful of infections. Washing hands a lot - super obsessive. Typical bad luck Neve has a tummy bug as well!
Despite all this off to not a bad start. Hoping this continues and I don't get anything worse in later cycles. Although I am told fatigue increases over months. Feels like a long road ahead...cycle 8 ends at start of December!
Clare reading up a lot on disease and various developments on horizon to prolong remission from it's return. Amazes me cancer research and research for other major diseases happens largely on donations, when we pay so much tax and pay for lovely big royal weddings etc!
We are starting a regular donation to the lymphoma association ourselves so we can do our bit.
Got out in the woods today with clare and the kids which was great. Also really nice to drive my mini with Plan B blaring out :)
Trying to keep life as normal as possible for sake of the kids.
Wednesday 22 June 2011
Cycle 1 - day after chemo
Yesterday was tough. 10 hrs in hospital having drugs slowly dripped into me while the docs observed blood pressure etc. 1st cycle always takes longer as they need to check there are no reactions against Rituximab drug which is essential to follicular lymphoma treatment. Thankfully all went ok. Long day tho. Still caught up on loads of top gear on Dave and played a lot of Zelda on 3DS!
Aside from feeling totally knackered and a bit sicky last night nothing nasty in terms of side effects yet. Fingers crossed.
Got a cabinet full of drugs to take all week. I have to take 20 steroid tablets each morning!
Energy levels crap. Helping out at home when I can but tired very easily.
Resting today and hoping I continue with no nasty side effects.
3 weeks till next cycle on 12th July.
Aside from feeling totally knackered and a bit sicky last night nothing nasty in terms of side effects yet. Fingers crossed.
Got a cabinet full of drugs to take all week. I have to take 20 steroid tablets each morning!
Energy levels crap. Helping out at home when I can but tired very easily.
Resting today and hoping I continue with no nasty side effects.
3 weeks till next cycle on 12th July.
Tuesday 14 June 2011
C Day is Set
Docs appointment today to sign consent form for chemo and set date for treatment to start. Agreed treatment will start on next Tuesday (21st June). I will be on R-CVP chemo for 8 cycles (each cycle is 3 weeks). This means drugs every 3 weeks at the hospital plus some to take at home.
All being well I will be done with Chemo for Christmas but it could take up to 3 months for full recovery. Hoping I can beat this so I can be back at work FULLY operational.
No idea how I will be on chemo. Lots of possible side effects and so on but hopefully I will be lucky.
Today was kind of scary. Treatment very real now.
Starting Tuesday means I have time to finish my to-do list, work a bit and get time to go out for dinner with Clare, play golf and get out on my new mountain bike before the fun begins.
Then I will be ready for battle!
All being well I will be done with Chemo for Christmas but it could take up to 3 months for full recovery. Hoping I can beat this so I can be back at work FULLY operational.
No idea how I will be on chemo. Lots of possible side effects and so on but hopefully I will be lucky.
Today was kind of scary. Treatment very real now.
Starting Tuesday means I have time to finish my to-do list, work a bit and get time to go out for dinner with Clare, play golf and get out on my new mountain bike before the fun begins.
Then I will be ready for battle!
Monday 13 June 2011
The to-do list
Still working through that to do list. Car service today and buying thermometer n other odds and sods I am told I need while in treatment.
Clare discovered a family in almost an identical position to us on the lymphoma society forum. They are a few weeks behind us and looks like my counterpart only has swollen nodes in his groin meaning it could be curable using radiotherapy. We are going to keep in touch.
No idea exactly when treatment will start but visit to docs tomorrow will clear that up.
Still feeling good apart from obvious stress. A few aches and pains but leg all ok.
Clare discovered a family in almost an identical position to us on the lymphoma society forum. They are a few weeks behind us and looks like my counterpart only has swollen nodes in his groin meaning it could be curable using radiotherapy. We are going to keep in touch.
No idea exactly when treatment will start but visit to docs tomorrow will clear that up.
Still feeling good apart from obvious stress. A few aches and pains but leg all ok.
Thursday 9 June 2011
London town
Had a really nice night out with a few of my oldest friends on south bank. Mexican food, drinks then rounding evening off in a posh coffee shop. How hardcore are we? :)
Have appointment on tuesday to sign consent forms for chemo and get ready. Expecting to start treatment probably the following Tuesday. In typical fashion for me drew up a to do list of things to sort out before treatment. Hopefully I will be in some way functional during chemo but have to be ready for worst.
Catching up on E3 (video game show) conferences as well. Reminding me why I love making games so much.
Have appointment on tuesday to sign consent forms for chemo and get ready. Expecting to start treatment probably the following Tuesday. In typical fashion for me drew up a to do list of things to sort out before treatment. Hopefully I will be in some way functional during chemo but have to be ready for worst.
Catching up on E3 (video game show) conferences as well. Reminding me why I love making games so much.
Tuesday 7 June 2011
Back from holiday weekend
Had a lovely weekend with Clare and the kids at Center Parcs. A little escape from it all in the woods. Kids had a great time and so did we.
Back in work today for a full day of appraisal meetings. Great to have a pretty normal day getting things done and being with work colleagues.
Got so many amazing emails from friends and family in telling them my news. Greatl to get so many kind thoughts and offers of support. Really, really touched.
Back home now and time to come to terms with all this crap. Kind of want to get into battle with this thing.
Tomorrow I will call the doc to commit to chemo and should know soon when it starts. Hoping it's ok to start in 2 weeks so I can have some time to get 100% fit again - still got a slight limp from op. Would be good to spend time at work, with friends and clare and get stuff sorted. But if doc presses the big GO button then fair nuff. Clare spoke to an oncologist friend today which was good and hopeful from that that my chemo will be more manageable as not full whack version of treatment. Just hope I am lucky so I can function somehow for next 6 months, help with baby, kids and get into work a bit. We'll see.
Read a great article about a guy who has had follicular lymphoma for over 40 years last night. He got it In the late 60's and it has only returned once. Again lots of fingers crossed I am one of the luck ones!
Meeting old friends Ewen, Ryan and Ken for drinks in London tomorrow night. Will be great to see them.
Back in work today for a full day of appraisal meetings. Great to have a pretty normal day getting things done and being with work colleagues.
Got so many amazing emails from friends and family in telling them my news. Greatl to get so many kind thoughts and offers of support. Really, really touched.
Back home now and time to come to terms with all this crap. Kind of want to get into battle with this thing.
Tomorrow I will call the doc to commit to chemo and should know soon when it starts. Hoping it's ok to start in 2 weeks so I can have some time to get 100% fit again - still got a slight limp from op. Would be good to spend time at work, with friends and clare and get stuff sorted. But if doc presses the big GO button then fair nuff. Clare spoke to an oncologist friend today which was good and hopeful from that that my chemo will be more manageable as not full whack version of treatment. Just hope I am lucky so I can function somehow for next 6 months, help with baby, kids and get into work a bit. We'll see.
Read a great article about a guy who has had follicular lymphoma for over 40 years last night. He got it In the late 60's and it has only returned once. Again lots of fingers crossed I am one of the luck ones!
Meeting old friends Ewen, Ryan and Ken for drinks in London tomorrow night. Will be great to see them.
Thursday 2 June 2011
Live
Blog now live to all.
I wanted to run a blog as a record of my experiences with follicular lymphoma and importantly as a way for family and friends to keep in touch with my progress and how Clare and I are dealing with this. So far this site has a record of my experience with this type of cancer from day one of discovering a painless lump in my leg back during Easter hols 2011.
Hopefully it can help people keep up to speed easily without the need to constantly check in with us.
We have been so touched already at the support and kind feelings sent by our friends and family so thanks for that. I am sure we will need you all. We are going to beat this and come out strong.
Really useful sites:
Organisation website:
http://www.lymphoma.org.uk/
Specifics on the disease:
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/TypesofNHL/Follicular.aspx
I wanted to run a blog as a record of my experiences with follicular lymphoma and importantly as a way for family and friends to keep in touch with my progress and how Clare and I are dealing with this. So far this site has a record of my experience with this type of cancer from day one of discovering a painless lump in my leg back during Easter hols 2011.
Hopefully it can help people keep up to speed easily without the need to constantly check in with us.
We have been so touched already at the support and kind feelings sent by our friends and family so thanks for that. I am sure we will need you all. We are going to beat this and come out strong.
Really useful sites:
Organisation website:
http://www.lymphoma.org.uk/
Specifics on the disease:
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/TypesofNHL/Follicular.aspx
At work! - 2nd june
Went into work for the afternoon to hold appraisal meetings. Felt great to have a normal experience again. Knackering but great. Again so touched by support of my boss, colleagues and the company overall.
We are off for a long weekend hol to Center parcs tomorrow to just chill and have fun with the kids.
REALLY looking forward to this.
All family knows news now as does many friends. Getting more news out tonight and going live with this blog. Then switching off for the weekend. Next week I aim to finish appraisals, relax, rest and prep for chemo.
Clare spoke to lymphoma organisation today for advice as well.
Pretty good day and feel pretty good.
No more updates for a few days
We are off for a long weekend hol to Center parcs tomorrow to just chill and have fun with the kids.
REALLY looking forward to this.
All family knows news now as does many friends. Getting more news out tonight and going live with this blog. Then switching off for the weekend. Next week I aim to finish appraisals, relax, rest and prep for chemo.
Clare spoke to lymphoma organisation today for advice as well.
Pretty good day and feel pretty good.
No more updates for a few days
Wednesday 1 June 2011
Getting the word out - 1st June
Had a terrible nights sleep. So did clare.
Saw nurse today for preassement for chemo. She ws a tough old bird but actually very helpful and gave me a lot of hope.
I have 8, 3 week cycles ahead so by Xmas I will be coming out of chemo. For now we are taking a break from it all and will talk to Dr Robbins next week to get the ball rolling.
Booked a long weekend at longleat Center parcs today. Looking forward to time away with clare and the kids.
Main business of the day was telling family.
Found it incredibly hard telling my 78 year old mum news. Thankfully my big sis Val was there to be with her and help explain it to dad.
Emotionally drained after talking to her but glad to finally be getting all this out in the open as for 1 month now I have had to keep it all quiet.
Next up was to chat to my big bro in Singapore. Had a really good chat with him but again so tough doing this. Again my sis, Val stepped in and told my other sister Lynda the news. She's been a real help.
Last stop was to tell my mate and old best man Ewen. He was really supportive. Good man!
He agreed to tell another good old friend, Ryan so I could finish up for the day. Meeting them both hopefully next week for beers before the fun begins.
Mixed day - emotionally hard going but feel good it's all out there, taking a weight of my shoulders. I will likely tell other friends via email tomorrow and make this blog public before we go away for the weekend.
Heading into work tomorrow afternoon to hold appraisals. Will be nice to do something NORMAL.
Saw nurse today for preassement for chemo. She ws a tough old bird but actually very helpful and gave me a lot of hope.
I have 8, 3 week cycles ahead so by Xmas I will be coming out of chemo. For now we are taking a break from it all and will talk to Dr Robbins next week to get the ball rolling.
Booked a long weekend at longleat Center parcs today. Looking forward to time away with clare and the kids.
Main business of the day was telling family.
Found it incredibly hard telling my 78 year old mum news. Thankfully my big sis Val was there to be with her and help explain it to dad.
Emotionally drained after talking to her but glad to finally be getting all this out in the open as for 1 month now I have had to keep it all quiet.
Next up was to chat to my big bro in Singapore. Had a really good chat with him but again so tough doing this. Again my sis, Val stepped in and told my other sister Lynda the news. She's been a real help.
Last stop was to tell my mate and old best man Ewen. He was really supportive. Good man!
He agreed to tell another good old friend, Ryan so I could finish up for the day. Meeting them both hopefully next week for beers before the fun begins.
Mixed day - emotionally hard going but feel good it's all out there, taking a weight of my shoulders. I will likely tell other friends via email tomorrow and make this blog public before we go away for the weekend.
Heading into work tomorrow afternoon to hold appraisals. Will be nice to do something NORMAL.
Tuesday 31 May 2011
Lymph Day...May 31st
Saw consultant today with clare.
I have a small amount of lymphoma in bone marrow making me stage 4. Fairly typical for disease to be discovered at this stage. As doc says 'it kind of creeps up on you unawares'.
Tough day in many ways but good to have clare with me and she felt a lot more positive. We are left with the choice of either:
1. Do nothing and get regular scans to check disease is not putting me at threat.
2. Go on chemo to try and get it into remisssion.
Chemo is pretty grim and has small risks of causing another cancer such as leukaemia so not an easy decision. Also I would be on it for 6 months roughly meaning we would go through first few months of babies life with me feeling pretty crap.
We both think option 2 right now as doc advises this based on his concern that a swollen node deep in abdomen could put my kidney at risk if it grows unchecked. This could happen in the background with no other symptoms and not be seen a couple of months when I get a scan.
Feel less scared about chemo from meeting. Lots of potential side effects but hopefully I would be lucky. Also chemo planned for my condition is not the heavy full on one.
Other positive news is that although not curable i have a good prognosis. 85% chance of 10 plus year survival.
Sounds like not a long time but less scary than before.
Doc left me to take time to think before mking final decision.
Met oncologist nurse as well which was helpful. Going to meeting with her tomorrow to find out more about chemo.
Last twist of day was CT scan showed up what could be a clot on lung. Unusual at this age but they want to investigate in case a pulmerry emblism (spelling??)
What an experience! Never thought I'd spend so much time at hospital! It's like another world.
After appointment clare and I went for thai food to chill and chat then collected kids from clares friend, Helens, house.
Kids had a great time there. Kids are a strange tonic right now. They keep up smiling and very busy!
Leg better tho. Plaster off and docs says it's healing well.
Thinking of going away for weekend so we can all relax and get space to think.
I have a small amount of lymphoma in bone marrow making me stage 4. Fairly typical for disease to be discovered at this stage. As doc says 'it kind of creeps up on you unawares'.
Tough day in many ways but good to have clare with me and she felt a lot more positive. We are left with the choice of either:
1. Do nothing and get regular scans to check disease is not putting me at threat.
2. Go on chemo to try and get it into remisssion.
Chemo is pretty grim and has small risks of causing another cancer such as leukaemia so not an easy decision. Also I would be on it for 6 months roughly meaning we would go through first few months of babies life with me feeling pretty crap.
We both think option 2 right now as doc advises this based on his concern that a swollen node deep in abdomen could put my kidney at risk if it grows unchecked. This could happen in the background with no other symptoms and not be seen a couple of months when I get a scan.
Feel less scared about chemo from meeting. Lots of potential side effects but hopefully I would be lucky. Also chemo planned for my condition is not the heavy full on one.
Other positive news is that although not curable i have a good prognosis. 85% chance of 10 plus year survival.
Sounds like not a long time but less scary than before.
Doc left me to take time to think before mking final decision.
Met oncologist nurse as well which was helpful. Going to meeting with her tomorrow to find out more about chemo.
Last twist of day was CT scan showed up what could be a clot on lung. Unusual at this age but they want to investigate in case a pulmerry emblism (spelling??)
What an experience! Never thought I'd spend so much time at hospital! It's like another world.
After appointment clare and I went for thai food to chill and chat then collected kids from clares friend, Helens, house.
Kids had a great time there. Kids are a strange tonic right now. They keep up smiling and very busy!
Leg better tho. Plaster off and docs says it's healing well.
Thinking of going away for weekend so we can all relax and get space to think.
Monday 30 May 2011
Update done...
That's our story so far up to date. I will try and post as much as I can. Who knows what lies ahead. Clare mentioned a quote from someone about follicular lymphoma - 'it's like being on a roller coaster while blindfolded.'
Sounds spot on.
We know it's currently incurable except potentially at stage 2. It's slow and progressive so with treatment sufferers can live 5,10,20 plus years and can even live relatively normal lives despite having a ticking bomb over their heads.
Some good sites on the disease:
http://www.lymphoma.org.uk/
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/TypesofNHL/Follicular.aspx
Big day tomorrow.
Wish us luck!
Sounds spot on.
We know it's currently incurable except potentially at stage 2. It's slow and progressive so with treatment sufferers can live 5,10,20 plus years and can even live relatively normal lives despite having a ticking bomb over their heads.
Some good sites on the disease:
http://www.lymphoma.org.uk/
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/TypesofNHL/Follicular.aspx
Big day tomorrow.
Wish us luck!
May 30th - bank hol??
Bank hol today but not in our world. Strawberry picking with the kids.
Trying not to stress today but it's tough for both of us. With this illness there are so many unknowns...
Dr Robbins meeting tomorrow to go over results, confirming bone marrow results and next steps. Lots of questions.
Clare on the ball with a long list to ask.
Trying not to stress today but it's tough for both of us. With this illness there are so many unknowns...
Dr Robbins meeting tomorrow to go over results, confirming bone marrow results and next steps. Lots of questions.
Clare on the ball with a long list to ask.
May 29th
We go for a family walk to winkworth. Really nice to be out with clare and the kids. Really nice day.
Walking better now but still a little dodgy.
Walking better now but still a little dodgy.
May 28th
Cardiologist appointment. Tests all good so he is 99% sure my heart ok. I have to wear a mobile ECG monitor for 24 hrs to make absolutely sure tho. Have to laugh now...
Likely he will need to check on me during chemo as well.
Likely he will need to check on me during chemo as well.
May 27th - confirmation I have follicular lymphoma
Weirdest day ever. Matter of fact call from surgeons secretary. She reads out letter I will get in matter of fact way confirming I have follicular lymphoma. Boom! Clare and I are in tears. Poor little kids unaware but must wonder whats happening.
Life so random and cruel.
Call Dr Robbins secretary to talk but he does not return call. Still no idea on bone marrow results.
Life so random and cruel.
Call Dr Robbins secretary to talk but he does not return call. Still no idea on bone marrow results.
May 26th
Amongst all this madness Connor has ear op today to get grommet fitted to finally fix hearing in right ear. Clare deals with all this onn her own. My wife is amazing! I look after neve at home best j can.
Connor does great at hospital, Bounces back. He gets a certificate and a teddy...good lad!
Connor does great at hospital, Bounces back. He gets a certificate and a teddy...good lad!
May 25th
Manage to stay up all day! Nice one!
Removed plaster from back from bone marrow biopsy. Ouch
Played call of duty when clare at work. Now rank 52!
Managed a ahort walk outside in evening. Very tiring but good to hobble out....
At this point only my sister Val knows in family. Following docs advice to minimise people we tell until we know more...
Not easy keeping immediate family inm the dark but for te best.
Removed plaster from back from bone marrow biopsy. Ouch
Played call of duty when clare at work. Now rank 52!
Managed a ahort walk outside in evening. Very tiring but good to hobble out....
At this point only my sister Val knows in family. Following docs advice to minimise people we tell until we know more...
Not easy keeping immediate family inm the dark but for te best.
May 24th
Amazingly slept we'll for 1st time...
Feel much more mobile today and less tired. Playing with kids and spending time with clare...all good.
Got cardiologist appointment on sat to check heart after my fall.
Feel much more mobile today and less tired. Playing with kids and spending time with clare...all good.
Got cardiologist appointment on sat to check heart after my fall.
May 23rd
More mobile but still tired. Frustrated I am not getting better faster.
Shower and shave today so feel much better!
Semi-normal night watching tv with clare trying to forget about everything....we have been reading so much about chemo, pet scans, symptoms etc on Internet.
We have to wait a few more days for the results but already expect bad news.
Shower and shave today so feel much better!
Semi-normal night watching tv with clare trying to forget about everything....we have been reading so much about chemo, pet scans, symptoms etc on Internet.
We have to wait a few more days for the results but already expect bad news.
May 22nd
Rest again today. No shower since Thursday so now I smell!
Clare takes kids to school fair. School mums are so supportive, offering us lots of help.....we're gonna need it!
Clare takes kids to school fair. School mums are so supportive, offering us lots of help.....we're gonna need it!
May 21st
Home today!
Good friend ken picks me up and takes me home. I spend the day I bed sleeping off anaesthetic.
Great to be back with the ones I love. This is so hard on clare. At 6 months pregnant she should not have this to deal with!
Good friend ken picks me up and takes me home. I spend the day I bed sleeping off anaesthetic.
Great to be back with the ones I love. This is so hard on clare. At 6 months pregnant she should not have this to deal with!
May 20th
Fall over after fainting in loo in hospital so they keep in in anothe night to monitor heart. Cardiologist gives me all clear suspecting elevated heart rate due to fall or anaesthetic.
Food is good in hospital and watch tv and browse on iPad all day. Leg bloody sore tho. Feel shaky as hell.
Can't wait to get home to see clare and the kids...
Food is good in hospital and watch tv and browse on iPad all day. Leg bloody sore tho. Feel shaky as hell.
Can't wait to get home to see clare and the kids...
Biopsy operation - may 19th
Op happens in early evening. Involves cutting into leg/groin to remove node and taking bone marrow samo,e from my back while I am out cold.
Nice private room. I watch top gear on Tv trying not to think about up coming op....bloody scary
Stay night I hospital after op.
Nice private room. I watch top gear on Tv trying not to think about up coming op....bloody scary
Stay night I hospital after op.
May 18th
Go into work for a couple of hrs. Fiona is amazingly supportive. First time I break down while talking to her. Worried about clare and kids...Inc our 3rd on the way!
Operation on Thursday....
Operation on Thursday....
May 17th
See my consultant Dr Robbins to go over CT scan results. He is fairly confident I have follicular lymphoma. It's a slow progressive cancer most often found in 60 plus people. There is currently no cure!
I have swollen nodes in towards back as well. Next step is biopsy op to confirm type of lymphoma and bone marrow biopsy to check to see if it's in there as well.
Can't believe this is happening. Clare is so upset.
I have swollen nodes in towards back as well. Next step is biopsy op to confirm type of lymphoma and bone marrow biopsy to check to see if it's in there as well.
Can't believe this is happening. Clare is so upset.
May 16th
Pretty normal day at worm. I feel a little tired but nothing serious. I tell a few people...everyone is understanding and supportive. Life feels really odd now. What has happened in such a short time!?
May 13th
I take Fiona up on her offer of a day off. Clare, Neve and I go for lunch at old haunt in Pirbright. We start to read a lot online about lymphoma. So many questions and unknowns at this stage.
May 12th
Haematologist appointment at Surrey royal hospital. Doc tells me it's likely I have lymphoma...never even heard of this. It's a blood cancer with lots of different variations and extremes. More blood tests and CT scan in afternoon to determine if other lymph nodes swollen, again private care gets me seen quickly. Never been so glad of this company benefit.
I talk to clare after scan. We are both scared.
I tell my boss the news. She has never heard of disease. As ever she is very supportive.
I talk to clare after scan. We are both scared.
I tell my boss the news. She has never heard of disease. As ever she is very supportive.
May 4th
Ultrasound next day - god bless private insurance!
Doc tells me I have swollen lymph nodes in left groin. He tells me there are a number of causes but is evasive to discuss much, Refers me to haematologist.
Slightly worried at this stage. Clare sure its nothing so reassures me.
Doc tells me I have swollen lymph nodes in left groin. He tells me there are a number of causes but is evasive to discuss much, Refers me to haematologist.
Slightly worried at this stage. Clare sure its nothing so reassures me.
May 3rd
Go to the docs to get leg checked out. Doc tells me it's likely a hernia but agrees to an ultrasound to get it checked out to be sure.
Like being on a roller coaster blind-folded
I have been diagnosed of having follicular lymphoma. This is a type of blood cancer. A horrible bombshell for anyone but at 39 with a wife, 2 lovely kids and a 3rd due in e months the last thing I wanted to hear, This blog aims to be a record of my experience for friends, family and interested folks.
The following posts re rod the events running up to by diagnosis....
The following posts re rod the events running up to by diagnosis....
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