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.
Tuesday 31 May 2011
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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