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.
Wednesday 29 June 2011
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.
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