Jean and I married in our front room with a small handful of witnesses on this day in 2001. I'm always at a loss for words when I try to describe how much she has meant, and means, to me - I don't have the vocabulary to do it justice.
We've been through a lot of stuff in the intervening years - it's been a struggle to keep afloat, at times - but I have never wavered in my love for her and in the certainty of her love for me.
I can't imagine what my life would be like without her love and support - she's seen me through all my myriad accidents, incidents and illnesses of recent years and she is inspiring me through this current chapter. I've put her through a lot of heartache and pain, but she's never wavered and has always been there with exactly what I have needed.
I'm planning to be around for at least another 15, which hopefully will be less stressful and with more time to just enjoy being together.
The last few days, as predicted, have been hard physically - the drugs I'm taking are dealing with the side-effects of the chemo, but they are making me really tired and listless. Also, as predicted, I'm feeling like I'm not achieving anything now that the daily radio-therapy appointments are no more. The plan is for me to get my strength up for the operation in February, but that's so amorphous! I need something concrete to focus on.
Thursday, December 29, 2016
Thursday, December 22, 2016
I feel like a Fraud
So, here I am after 6 weeks of chemo- and radio- therapy and I'm basically feeling pretty good!
I get tired quickly, and I don't really want to know how I would be feeling without the magic mouthwash, anti-nausea, anti-diarrhea and urinary flow drugs that I'm taking daily, but basically I look and feel pretty normal and to look at me, now that I'm not carrying around a big pump all the time, you wouldn't really know that anything is wrong.
I've decided to answer the "How are you?" question with "Not bad, considering...", which I think will do for both people who are aware and unaware of the diagnosis.
Lots of stuff happening at home and work, which is keeping me engaged, but I do think I need to start working out at the gym, or at least get back into a regular exercise program, so that I can build up my strength for the operation in February. I want to feel like I am doing something pro-active to combat this thing - while I had my daily appointments this was a given, but now I need to make a bit of an effort myself.
It's the anniversary of Joe Strummer's death today, which always brings me down - but playing Clash or Mescaleroes songs in the car makes it better!
Fuck Cancer!
I get tired quickly, and I don't really want to know how I would be feeling without the magic mouthwash, anti-nausea, anti-diarrhea and urinary flow drugs that I'm taking daily, but basically I look and feel pretty normal and to look at me, now that I'm not carrying around a big pump all the time, you wouldn't really know that anything is wrong.
I've decided to answer the "How are you?" question with "Not bad, considering...", which I think will do for both people who are aware and unaware of the diagnosis.
Lots of stuff happening at home and work, which is keeping me engaged, but I do think I need to start working out at the gym, or at least get back into a regular exercise program, so that I can build up my strength for the operation in February. I want to feel like I am doing something pro-active to combat this thing - while I had my daily appointments this was a given, but now I need to make a bit of an effort myself.
It's the anniversary of Joe Strummer's death today, which always brings me down - but playing Clash or Mescaleroes songs in the car makes it better!
Fuck Cancer!
Edit:
OK, so I wrote all that at about 9:30am, It's now 12:30pm and I no longer feel like a fraud! Time for a nap!
Tuesday, December 20, 2016
I was able....
...this morning, for the first time in 7 weeks, to have a shower without having first to wrap my arm up in clingfilm and a long plastic glove, and without a tube coming from my arm out of the shower! It's amazing how much easier life is without a picc line!
End of Chemo
I showed up to get my pump re-attached on Monday morning and was told that I was done! Now the radiation is over, the chemo-therapy is no longer required - what is still in my system will keep working and the side-effects will worsen for a couple of weeks, but there is no need to add any more of the stuff! So I have no pump!!! Yay!
Today is Tuesday and the first weekday for a long time that I have had no appointments to get to. I came to work (which I am starting to regret) and have a couple of errands to run, but otherwise I am free of commitments. Very odd!
Today is Tuesday and the first weekday for a long time that I have had no appointments to get to. I came to work (which I am starting to regret) and have a couple of errands to run, but otherwise I am free of commitments. Very odd!
Saturday, December 17, 2016
Reserved Parking and Preferential treatment
There's an area of the Hospital Car Park that is reserved for those of us attending the infusion center. It's often busy, but rarely absolutely full. With the state of the parking there at the moment, this is a blessed relief - there's building work going on and parking that has always been less than adequate is even worse because of it. But that is not the only perk of being a cancer patient - we also have our own pharmacy, upstairs away from the madding, coughing, sneezing, throng.
We also get a fast track pass for the labs - although as I have a picc line, which theoretically makes it a breeze for any old nurse to get blood out of me, I've not needed to wield this particular power. I say theoretically because once again today, my line refused to allow extraction and I had to wait for some thinning drugs to take effect on whatever was blocking up the end of the tube. Again, it's a minor annoyance - like the skin irritation under the dressing that I desperately want to scratch RIGHT NOW - and I realise that it is a small price to pay for the convenience of the treatment being provided as I move around, rather than having to spend a long intensive session in the infusion suite as many others have to.
I've taken to nodding and smiling at anyone with a woolly hat and a nervous expression anywhere in the vicinity of the hospital, as the chances are that they are fellow travelers. I'm still in possession of my hair, though I did trim it fairly dramatically as it was starting to thin a few weeks back, so am not a fully paid up member of the club. After the operation, I will be on a different chemotherapy treatment, so I may fall victim then.
We also get a fast track pass for the labs - although as I have a picc line, which theoretically makes it a breeze for any old nurse to get blood out of me, I've not needed to wield this particular power. I say theoretically because once again today, my line refused to allow extraction and I had to wait for some thinning drugs to take effect on whatever was blocking up the end of the tube. Again, it's a minor annoyance - like the skin irritation under the dressing that I desperately want to scratch RIGHT NOW - and I realise that it is a small price to pay for the convenience of the treatment being provided as I move around, rather than having to spend a long intensive session in the infusion suite as many others have to.
I've taken to nodding and smiling at anyone with a woolly hat and a nervous expression anywhere in the vicinity of the hospital, as the chances are that they are fellow travelers. I'm still in possession of my hair, though I did trim it fairly dramatically as it was starting to thin a few weeks back, so am not a fully paid up member of the club. After the operation, I will be on a different chemotherapy treatment, so I may fall victim then.
Thursday, December 15, 2016
Radiation over
Feel a bit sad, really, that I won't have the daily routine. Won't miss the tape!
I gave a couple of boxes of candies to the staff and they were appreciative - I can't say enough about how easy they made the whole process. It was scary and alien to start with, but they dealt with me in such a calm, caring, matter-of-fact way that it became just another chore! I'd have liked to have got pics of the machinery, but I didn't think it was appropriate and never got around to asking - suffice to say, it was big and very automated and made whirrry-clicky-sounds when it was getting into position.
I even have a certificate to prove I've got through it!
Onwards!
I gave a couple of boxes of candies to the staff and they were appreciative - I can't say enough about how easy they made the whole process. It was scary and alien to start with, but they dealt with me in such a calm, caring, matter-of-fact way that it became just another chore! I'd have liked to have got pics of the machinery, but I didn't think it was appropriate and never got around to asking - suffice to say, it was big and very automated and made whirrry-clicky-sounds when it was getting into position.
I even have a certificate to prove I've got through it!
Onwards!
Tuesday, December 13, 2016
Intensifying
So, apparently the last three radiation treatments are going to be "more intensive".
From a practical point of view, this means just an extra minute or two on the slab and the blast from the machine is more powerful - for the first time, I could feel a burning sensation as I left the table.
Doctor Lee and nurse Annabelle both warned me that there is going to be a period of a couple of weeks after we are done when the symptoms will intensify, because I will have received the full dose of radiation and it will be doing it's stuff - both were very encouraging and told me that I have done well and "been brave".
The "brave" thing really confuses me, to be honest - I really have just done what I've been told to do, asked a few questions about what is happening and tried to not do anything that is going to interfere with the treatment. I didn't really have much choice!
I'm currently feeling pretty nauseous, tired and a bit achy, but there's nothing that requires bravery! I guess it's the facing of the unknown?
Anyway, 2 more and then I'll be whingeing about having nothing to do!
https://www.gofundme.com/PLUChris
From a practical point of view, this means just an extra minute or two on the slab and the blast from the machine is more powerful - for the first time, I could feel a burning sensation as I left the table.
Doctor Lee and nurse Annabelle both warned me that there is going to be a period of a couple of weeks after we are done when the symptoms will intensify, because I will have received the full dose of radiation and it will be doing it's stuff - both were very encouraging and told me that I have done well and "been brave".
The "brave" thing really confuses me, to be honest - I really have just done what I've been told to do, asked a few questions about what is happening and tried to not do anything that is going to interfere with the treatment. I didn't really have much choice!
I'm currently feeling pretty nauseous, tired and a bit achy, but there's nothing that requires bravery! I guess it's the facing of the unknown?
Anyway, 2 more and then I'll be whingeing about having nothing to do!
https://www.gofundme.com/PLUChris
Friday, December 9, 2016
Mixed Feelings
So, there's just four more radiation treatments to go - next Thursday will be my last. It's a relief - it's starting to get sore down there and, while it's hard to tell whether it's the chemo or the radiation that's doing it, I'm slowing way down these last few days!
But, it's a routine! It's a routine that I've got used to - I show up every morning, I'm greeted at reception, I chat to the technicians, I check in with the nurses, I talk to other patients, I update the doctor on my latest symptoms.....I'm going to miss it! Butt-cheek tape and all!
Obviously, there is going to be something to replace it. The next phase is recovery, and preparation for the big operation, so I need to get in to some sort of new routine to help me with that. I need to feel like I am doing something to help get rid of this thing, so hopefully there is something pro-active that I can get onto. There's a gym in Santa Rosa that offers free use to cancer patients - I guess it would be foolish not to advantage of it, get a fitness/strengthening routine going? The only worry would be showering while I still have the picc line attached. We'll see. Upwards and Onwards!
https://www.gofundme.com/PLUChris
But, it's a routine! It's a routine that I've got used to - I show up every morning, I'm greeted at reception, I chat to the technicians, I check in with the nurses, I talk to other patients, I update the doctor on my latest symptoms.....I'm going to miss it! Butt-cheek tape and all!
Obviously, there is going to be something to replace it. The next phase is recovery, and preparation for the big operation, so I need to get in to some sort of new routine to help me with that. I need to feel like I am doing something to help get rid of this thing, so hopefully there is something pro-active that I can get onto. There's a gym in Santa Rosa that offers free use to cancer patients - I guess it would be foolish not to advantage of it, get a fitness/strengthening routine going? The only worry would be showering while I still have the picc line attached. We'll see. Upwards and Onwards!
https://www.gofundme.com/PLUChris
Wednesday, December 7, 2016
The radiation waiting room
I think I've mentioned before that the Radiography center at Rohnert Park Cancer Center is an efficient, almost production-line-style operation. You check in on arrival, get your kit off and then sit in the waiting room to be escorted to the cookers. Sadly, this very efficiency means there is little time to chat with other patients, however from time to time it is possible.
Last week a guy showed up for his first session, where they show you the ropes and get you tattooed - we were able to have a chat about my experiences there and I helped him pick out a woolly hat from the box of donations that is on the table in the waiting room - I'm sure he was absolutely thrilled to get my fashion input! ;-)
Today, there was a bit of a bottle neck, so I was able to strike up a conversation with a guy who I have seen around quite a bit before - his sessions frequently coincide with mine. We compared notes. He has 35 sessions, and each of them are about 15 to 20 minutes long (I only have 28 and they are rarely over 5 minutes), however, he does not have to suffer the indignity of having his butt-cheeks taped open and simply has to sit. He was surprised to hear that I was having the treatment and chemotherapy before the operation, so I was able to explain about the plan to shrink the tumour to make the chances of success better. He seemed to think that I had it worse because of the added chemo, but I maintain that my 5 minute sessions must be a hell of a lot easier than his daily marathon!
It's really good to talk with people who understand and have experienced, or are experiencing, similar things - if anyone reading this is prevaricating over joining a support group, I say "Do it!" It's a rewarding, if emotionally challenging, experience and, rather like this blog, it's a good way to download thoughts and feelings without burdening my wife with absolutely everything!
There was a wonderful surprise donation to the GoFundMe page (https://www.gofundme.com/PLUChris) that came through today. Peoples' kindness and thoughtfulness will never cease to amaze and delight me!
Last week a guy showed up for his first session, where they show you the ropes and get you tattooed - we were able to have a chat about my experiences there and I helped him pick out a woolly hat from the box of donations that is on the table in the waiting room - I'm sure he was absolutely thrilled to get my fashion input! ;-)
Today, there was a bit of a bottle neck, so I was able to strike up a conversation with a guy who I have seen around quite a bit before - his sessions frequently coincide with mine. We compared notes. He has 35 sessions, and each of them are about 15 to 20 minutes long (I only have 28 and they are rarely over 5 minutes), however, he does not have to suffer the indignity of having his butt-cheeks taped open and simply has to sit. He was surprised to hear that I was having the treatment and chemotherapy before the operation, so I was able to explain about the plan to shrink the tumour to make the chances of success better. He seemed to think that I had it worse because of the added chemo, but I maintain that my 5 minute sessions must be a hell of a lot easier than his daily marathon!
It's really good to talk with people who understand and have experienced, or are experiencing, similar things - if anyone reading this is prevaricating over joining a support group, I say "Do it!" It's a rewarding, if emotionally challenging, experience and, rather like this blog, it's a good way to download thoughts and feelings without burdening my wife with absolutely everything!
There was a wonderful surprise donation to the GoFundMe page (https://www.gofundme.com/PLUChris) that came through today. Peoples' kindness and thoughtfulness will never cease to amaze and delight me!
Tuesday, December 6, 2016
Getting Through
The skin infection looks like it is under control - they told me to watch my temperature and treat any fever as an emergency, but basically concluded that a week covered in the anti-bacterial swab would sort it all out!
Tuesdays are my updates with Dr Lee at the Rohnert Park Cancer Center - he was pretty happy with everything and said "You're on the homeward path now", which is encouraging. Just 7 more radiation treatments to go.
To be honest, having the appointment every day has been very grounding - giving me a daily schedule and a focus of attention - I'm a bit worried about how I'm going to deal with not having it there any more. I'll still have appointments and check-ups, plus the support group, but there will not be that daily commitment that demonstrates to myself that I am "Doing Something".
I guess I just have to keep going: recover from this treatment and get through to the operation, then get through the operation and get through the recovery period, then face the next set of Chemo drugs and get through that. I've said from the start that I'm putting myself firmly in the hands of the doctors and having faith that their advice will get me through - that's how it's going to have to be!
https://www.gofundme.com/PLUChris
Tuesdays are my updates with Dr Lee at the Rohnert Park Cancer Center - he was pretty happy with everything and said "You're on the homeward path now", which is encouraging. Just 7 more radiation treatments to go.
To be honest, having the appointment every day has been very grounding - giving me a daily schedule and a focus of attention - I'm a bit worried about how I'm going to deal with not having it there any more. I'll still have appointments and check-ups, plus the support group, but there will not be that daily commitment that demonstrates to myself that I am "Doing Something".
I guess I just have to keep going: recover from this treatment and get through to the operation, then get through the operation and get through the recovery period, then face the next set of Chemo drugs and get through that. I've said from the start that I'm putting myself firmly in the hands of the doctors and having faith that their advice will get me through - that's how it's going to have to be!
https://www.gofundme.com/PLUChris
Saturday, December 3, 2016
Minor Complications
When things go smoothly, I'm in and out of the infusion lab in 20 to 25 minutes on a Saturday - clean up the old dressing, change the dressing, take some blood... on your way, sonny. Last week, they couldn't draw blood, so I had to sit and wait until the blockage dissolved, this week was a bit more worrying!
Taking off the dressing, the nurse asked "Has this been itching?" to which I replied "Yeah, a bit, but not badly." I looked down to see that the circular pad that covers the point where the picc line enters me was soaked in red stuff, and the skin all around was glowing a worrying colour!
The nurse called over another nurse and they tutted and worried for a bit, before getting on the phone to the picc line specialist. After a short wait a little lady called Rene showed up - she looked like Benny the Ball out of Top Cat, and was just as jolly. It seems some moisture must have got under the dressing and there was the beginnings of a fungal infection around the insertion point - this is not a good thing, as the picc line is pointed right at the heart, so if the area gets infected, it is going to spread very quickly. Anyway, they calmly and efficiently dealt with it - covering the area with a huge, heart-shaped, anti-bacterial pad which will hopefully calm down the infected area. I'm due in again on Monday for the re-connection of the pump, so they will review it then and decide whether it needs any more treatment or not.
When these things happen, my default mode is panic - fortunately the staff at the hospital are so calm and matter of fact about things that they diffuse the panic immediately. They called the specialist, who was happily there on a Saturday, and decided on the appropriate course of action right there and then! I have nothing but praise for these people - it must be a horribly emotional room to work it, there are people in way worse situations than me that they have to deal with all day everyday, but they are professional, respectful and maintain a great sense of humour throughout!
Taking off the dressing, the nurse asked "Has this been itching?" to which I replied "Yeah, a bit, but not badly." I looked down to see that the circular pad that covers the point where the picc line enters me was soaked in red stuff, and the skin all around was glowing a worrying colour!
The nurse called over another nurse and they tutted and worried for a bit, before getting on the phone to the picc line specialist. After a short wait a little lady called Rene showed up - she looked like Benny the Ball out of Top Cat, and was just as jolly. It seems some moisture must have got under the dressing and there was the beginnings of a fungal infection around the insertion point - this is not a good thing, as the picc line is pointed right at the heart, so if the area gets infected, it is going to spread very quickly. Anyway, they calmly and efficiently dealt with it - covering the area with a huge, heart-shaped, anti-bacterial pad which will hopefully calm down the infected area. I'm due in again on Monday for the re-connection of the pump, so they will review it then and decide whether it needs any more treatment or not.
When these things happen, my default mode is panic - fortunately the staff at the hospital are so calm and matter of fact about things that they diffuse the panic immediately. They called the specialist, who was happily there on a Saturday, and decided on the appropriate course of action right there and then! I have nothing but praise for these people - it must be a horribly emotional room to work it, there are people in way worse situations than me that they have to deal with all day everyday, but they are professional, respectful and maintain a great sense of humour throughout!
Thursday, December 1, 2016
New medication and another milestone!
Mouth sores! That's what they promised, and that's what have shown up!
The pharmacist in the infusion room has promised me that what she has prescribed is a "Magic Mouthwash"! We shall see! I had been gargling with salt water, which seemed to be doing the trick, but today I have started to feel rough patches around my lips and gums which don't seem to be going away - like the beginning of a mouth ulcer - so, I thought I'd better try and nip it in the bud!
I'm not that keen on taking multiple medications to deal with the side effects of the primary medication, but I think it's better to give it a go now than to wait until it gets to an intolerable level!
Just 10 radiation treatments to go now! That's a milestone, right??? Yay!!!
The pharmacist in the infusion room has promised me that what she has prescribed is a "Magic Mouthwash"! We shall see! I had been gargling with salt water, which seemed to be doing the trick, but today I have started to feel rough patches around my lips and gums which don't seem to be going away - like the beginning of a mouth ulcer - so, I thought I'd better try and nip it in the bud!
I'm not that keen on taking multiple medications to deal with the side effects of the primary medication, but I think it's better to give it a go now than to wait until it gets to an intolerable level!
Just 10 radiation treatments to go now! That's a milestone, right??? Yay!!!
Wednesday, November 30, 2016
Itchy, streaming eyes and light sensitivity!
Oh, yes! More symptoms of the Chemo-therapy drugs have started to display themselves. Itchy, streaming eyes combined with increased light sensitivity - fortunately, I have a pair of prescription sunglasses which I can drive in still, even though they are not the current prescription.
Yet more generous donations to the GoFundMe page (https://www.gofundme.com/PLUChris) coming in from both sides of the pond - really touching, but I'll blame my bursting into tears on the itchy, streaming eyes and increased light sensitivity!
Yet more generous donations to the GoFundMe page (https://www.gofundme.com/PLUChris) coming in from both sides of the pond - really touching, but I'll blame my bursting into tears on the itchy, streaming eyes and increased light sensitivity!
Tuesday, November 29, 2016
Busy Morning!
First down to Rohnert Park for cooking, followed by an update meeting with Dr Lee. The nurse, Annabelle, talked about a bakery in Windsor that does British pies and promised to see if they can do me a Pork and Stilton one! (Reckon I'll end up having to make my own, though! http://jo-pratt.com/archives/105 )
Dr Lee was pretty happy with progress, said to just keep looking after myself. So all is good!
Then drove back up to Santa Rosa for an update with Dr Akhtar in Oncology. Again, vital signs and blood test results all look just fine. He said with a wink, "What we are doing is trying to break you down, but your body's fighting back just fine!". He suggested that I ask Glynn in the infusion room to prescribe me a specific mouthwash rather than just using salty water - makes sense, I guess! The salt water rinse seems to work pretty well, even though it is quite remarkably unpleasant at the time!
Then to work! Ugh! It's hard to concentrate and keep focused - I'm worried that I'm going to do something stupid (I came close to updating the live environment rather than the test environment this morning, which is exactly the sort of stupid I can imagine committing!).
Dr Lee was pretty happy with progress, said to just keep looking after myself. So all is good!
Then drove back up to Santa Rosa for an update with Dr Akhtar in Oncology. Again, vital signs and blood test results all look just fine. He said with a wink, "What we are doing is trying to break you down, but your body's fighting back just fine!". He suggested that I ask Glynn in the infusion room to prescribe me a specific mouthwash rather than just using salty water - makes sense, I guess! The salt water rinse seems to work pretty well, even though it is quite remarkably unpleasant at the time!
Then to work! Ugh! It's hard to concentrate and keep focused - I'm worried that I'm going to do something stupid (I came close to updating the live environment rather than the test environment this morning, which is exactly the sort of stupid I can imagine committing!).
Monday, November 28, 2016
"We don't want to deprive you of all your fun!"
Re-attachment of the pump this morning and the infusion nurse is concerned that I have lost 5lbs over the last week. I told her that it was down to not drinking beer during the week. I'd been told by another nurse that a couple of beers would be OK on the days when I do not have the pump attached, but this one said that it wouldn't do any harm in moderation throughout the treatment - "We don't want to deprive you of all your fun!". Better check with Dr Akhtar! Either way, I think it is probably a good thing that I have cut back - it was getting to be a too regular thing, so sticking to a couple at the weekends is a better plan for me anyway. When I was riding regularly, I was weighing in at about 180lbs, so I think I can safely lose a good deal more without it impacting on my strength.
Sadly, my radiotherapy session was at a later time today, which made it impossible to attend the support group in Santa Rosa. Mouth is still sore, but the nurse looked it over and said it looks OK, just keep gargling the salted water! Temperature, blood pressure and heart rate all fine.
Progress meeting with Dr Akhtar scheduled for 9:00am tomorrow.
Sadly, my radiotherapy session was at a later time today, which made it impossible to attend the support group in Santa Rosa. Mouth is still sore, but the nurse looked it over and said it looks OK, just keep gargling the salted water! Temperature, blood pressure and heart rate all fine.
Progress meeting with Dr Akhtar scheduled for 9:00am tomorrow.
Sunday, November 27, 2016
Mouth Sores
They warned me about mouth sores! They said most people complain of mouth sores because of the chemotherapy!
I now have mouth sores!
It's like toothache, but not severe, and pretty much generalized around the mouth - though for me, there's a concentration around the top right where it is more severe, which I think might be related to an area that my dental hygienist was nagging me about months ago.
They recommend salt-water gargling - I just tried it and I think I need to change the ratio of salt to water!
It seems churlish to complain, as it's really just a little thing - more of an inconvenience than anything. Same with the slow urinary flow - it's annoying and inconvenient, but it's just that and you deal with it (not chuffed that I had to get up 4 times overnight, though!). The nausea is controlled pretty well by the medication that Glynn, the infusion room's own dedicated pharmacist, prescribed - I just take a pill when I feel it coming on and it is sorted.
I published the GoFundMe page and have been thrilled with the response! A couple of people had already sent me cash independently and that emboldened me to go public with the plea - I love my friends!
I now have mouth sores!
It's like toothache, but not severe, and pretty much generalized around the mouth - though for me, there's a concentration around the top right where it is more severe, which I think might be related to an area that my dental hygienist was nagging me about months ago.
They recommend salt-water gargling - I just tried it and I think I need to change the ratio of salt to water!
It seems churlish to complain, as it's really just a little thing - more of an inconvenience than anything. Same with the slow urinary flow - it's annoying and inconvenient, but it's just that and you deal with it (not chuffed that I had to get up 4 times overnight, though!). The nausea is controlled pretty well by the medication that Glynn, the infusion room's own dedicated pharmacist, prescribed - I just take a pill when I feel it coming on and it is sorted.
I published the GoFundMe page and have been thrilled with the response! A couple of people had already sent me cash independently and that emboldened me to go public with the plea - I love my friends!
Saturday, November 26, 2016
One of the big advantages...
...of having a picc line installed in your arm, at least for the patient (and, I think, the nurses), is that you can have blood drawn for lab work really easily and quickly. I go in to the infusion center on a Saturday morning, get the pump disconnected (YAY!), get the dressing changed, get a couple of test tubes of blood taken and skip merrily on my way.
Except this morning, when apparently a blood clot was blocking the end of the catheter - things were going in just fine, but they couldn't draw any blood out the other way. So, they pump in some stuff which sorts out the clot, you sit and wait for 1/2 an hour and they try again. Today, it failed again at this point, so they tried another dose, followed by another 1/2 hour wait, after which everything was hunky dory!
Now, obviously, in this connected day and age, I'm able to sit there with my phone, check Facebook, write a blog post, listen to footie on the radio, all that sort of stuff - except this morning was the morning that I managed to drop my phone once too often and all I have is a very slender paperweight which shows a strange pattern of multicoloured lines when you turn it on and doesn't respond to any tapping, shaking or anything! Good job I took out the replacement insurance! And luckily I have a back-up phone to use in the meantime (if the darn thing will ever finish charging!)
Except this morning, when apparently a blood clot was blocking the end of the catheter - things were going in just fine, but they couldn't draw any blood out the other way. So, they pump in some stuff which sorts out the clot, you sit and wait for 1/2 an hour and they try again. Today, it failed again at this point, so they tried another dose, followed by another 1/2 hour wait, after which everything was hunky dory!
Now, obviously, in this connected day and age, I'm able to sit there with my phone, check Facebook, write a blog post, listen to footie on the radio, all that sort of stuff - except this morning was the morning that I managed to drop my phone once too often and all I have is a very slender paperweight which shows a strange pattern of multicoloured lines when you turn it on and doesn't respond to any tapping, shaking or anything! Good job I took out the replacement insurance! And luckily I have a back-up phone to use in the meantime (if the darn thing will ever finish charging!)
Friday, November 25, 2016
Thanksgiving
2 consecutive days with no appointments! Wonderful!
Woke up this morning to an unexpected email from PayPal. I have some wonderful friends! Money is always an issue with us, as I'm sure it is with everyone on the planet, and it's going to be more so when I have to take extended time off work later, but things like that make me believe that things will work out!
Smoking the turkey today as yesterday sort of got away from us - Finn finally showed some symptoms of the virus that has been hanging around him for the last few weeks. He lost his voice and had a temperature up over 100, so our traditional trip to Kathy's had to be broken into two - Evan went on his own, then Jean and I went down later when he got back. We then performed the traditional watching of the Bob Newhart, Snoopy and Buffy Thanksgiving specials.
Nice to have nothing medical to report for me! Tomorrow it's back to the infusion unit to disconnect the pump and change the dressing on the PICC line, but aside from that, I am free until Monday - how nice!
OK - back to the turkey!
Woke up this morning to an unexpected email from PayPal. I have some wonderful friends! Money is always an issue with us, as I'm sure it is with everyone on the planet, and it's going to be more so when I have to take extended time off work later, but things like that make me believe that things will work out!
Smoking the turkey today as yesterday sort of got away from us - Finn finally showed some symptoms of the virus that has been hanging around him for the last few weeks. He lost his voice and had a temperature up over 100, so our traditional trip to Kathy's had to be broken into two - Evan went on his own, then Jean and I went down later when he got back. We then performed the traditional watching of the Bob Newhart, Snoopy and Buffy Thanksgiving specials.
Nice to have nothing medical to report for me! Tomorrow it's back to the infusion unit to disconnect the pump and change the dressing on the PICC line, but aside from that, I am free until Monday - how nice!
OK - back to the turkey!
Wednesday, November 23, 2016
I've just made this blog public
Seems pointless to just keep talking to myself - if my experiences can be of help to anyone else, then they should be able to find them! Not advertised it's existence yet, but may give a Facebook mention later.
Just had a quick chat with DK at work - his daughter in law has just been diagnosed with breast cancer and has had her first chemo session. I emphasised to him how much the support group has helped me and encouraged him to encourage her to get involved if there is such a thing at her location.
Thanksgiving tomorrow - and 4 whole days off of the radiation treatment! Yay!
Just had a quick chat with DK at work - his daughter in law has just been diagnosed with breast cancer and has had her first chemo session. I emphasised to him how much the support group has helped me and encouraged him to encourage her to get involved if there is such a thing at her location.
Thanksgiving tomorrow - and 4 whole days off of the radiation treatment! Yay!
Tuesday, November 22, 2016
Nearly half-way.
Dr Lee is on vacation, so I saw a different specialist at RPCC this morning - Dr Fields who looks disconcertingly like Saul Goodman's brother in Better Call Saul! He was very encouraging - said that I was "coping remarkably well" with the treatment so far.
He advised me to expect a deterioration in the next few weeks, then when the treatment is done there may be a couple of weeks during which time it (the fatigue and whatever other side effects develop) worsens before the body can recover enough for surgery - which is why there's the 8 week gap between completing treatment and undergoing surgery.
I think I knew all that already, but it was good to get it underlined.
Tomorrow is the half-way point of this stage of the radiation treatment - just 14 more to go starting Monday 28th.
The haircut is being remarked upon all over the office - few have asked about the pump, though. Again, I want to talk about it and want to tell people what's going on, but I don't want to burden people! I know that people do still run away from the "C" word and are unsure of how to react, so I'm still being reticent and will only discuss it with people who give me the impression that they actually want to know!
He advised me to expect a deterioration in the next few weeks, then when the treatment is done there may be a couple of weeks during which time it (the fatigue and whatever other side effects develop) worsens before the body can recover enough for surgery - which is why there's the 8 week gap between completing treatment and undergoing surgery.
I think I knew all that already, but it was good to get it underlined.
Tomorrow is the half-way point of this stage of the radiation treatment - just 14 more to go starting Monday 28th.
The haircut is being remarked upon all over the office - few have asked about the pump, though. Again, I want to talk about it and want to tell people what's going on, but I don't want to burden people! I know that people do still run away from the "C" word and are unsure of how to react, so I'm still being reticent and will only discuss it with people who give me the impression that they actually want to know!
Sunday, November 20, 2016
The Weekend Starts Here!
Well, the weekend starts with a dressing change, but at least I get to remove the pump until Monday morning.
The nausea is getting worse - I've woken up at about 4:00am the last 2 nights and had to go get a tablet. Plus, I have to pee 2 or 3 times a night - no wonder I'm tired during the day. Again, this was all predicted and I was forewarned - doesn't make the reality easier to deal with, though!
Took Finn with me to the infusion lab so that we could head straight from there to Flying Frogs.
Sunday was a bonus radiation session - they are closed Thursday and Friday for Thanksgiving, so they saw everyone today so that we only miss one session on the week. Music was Aretha's RESPECT - which I found quite amusing as they taped open my buttocks!
On the way back, I decided to bite the bullet and get my hair clipped - a 3 on the back and sides and a 4 on top - which will make it easier to take care of, and not be so messy if it starts falling out in any quantity!
The nausea is getting worse - I've woken up at about 4:00am the last 2 nights and had to go get a tablet. Plus, I have to pee 2 or 3 times a night - no wonder I'm tired during the day. Again, this was all predicted and I was forewarned - doesn't make the reality easier to deal with, though!
Took Finn with me to the infusion lab so that we could head straight from there to Flying Frogs.
Sunday was a bonus radiation session - they are closed Thursday and Friday for Thanksgiving, so they saw everyone today so that we only miss one session on the week. Music was Aretha's RESPECT - which I found quite amusing as they taped open my buttocks!
On the way back, I decided to bite the bullet and get my hair clipped - a 3 on the back and sides and a 4 on top - which will make it easier to take care of, and not be so messy if it starts falling out in any quantity!
Friday, November 18, 2016
2 Weeks of Radiotherapy in the bag!
Just 3 and a half more to go! "Getting through it" pretty much describes it.
Side-effects still minimal - although the frequent urination and slow slow slow flow are not my idea of fun!
It's been great to get contact from various friends old and new, mainly through Facebook, and now I'm debating whether to open up this blog to everyone. Not really sure how many people would care, or whether anything I've been writing down would be useful to anyone. Maybe! I've tried to be honest and informative.
Maybe, maybe not!
Side-effects still minimal - although the frequent urination and slow slow slow flow are not my idea of fun!
It's been great to get contact from various friends old and new, mainly through Facebook, and now I'm debating whether to open up this blog to everyone. Not really sure how many people would care, or whether anything I've been writing down would be useful to anyone. Maybe! I've tried to be honest and informative.
Maybe, maybe not!
Thursday, November 17, 2016
Self-pity
Feeling sorry for myself today! Felt a pain in my shoulder when I reached to catch a falling coffee cup and it sent me into a funk - a month ago, that was the worst of my health issues!
Nurse visit at RPCC today, blood pressure and temperature still fine - weight still hovering around 200lbs, so really nothing to report. I'm still tiring fast - yesterday I got home from work around 2:00, lay down and then woke up after 6:00. Was back in bed by 9:30! I guess it's to be expected, but I still need to pull my weight around the house. Will make sure I cook tonight.
Nothing else, really. Oh, but I had a quick FB chat with Little Steve Hickman. We were talking about the days at the Spread and I mentioned Ross - he said "Oh, was he the guy who had never been to a football match, but came with us to the Aldershot/Wolves game?" I had to disabuse him of the notion (Ross being a Chelsea season-ticket holder for years!) Classic Ross wind-up - the pay-off coming nearly 20 years down the road! It's a talent, that's for sure!
Nurse visit at RPCC today, blood pressure and temperature still fine - weight still hovering around 200lbs, so really nothing to report. I'm still tiring fast - yesterday I got home from work around 2:00, lay down and then woke up after 6:00. Was back in bed by 9:30! I guess it's to be expected, but I still need to pull my weight around the house. Will make sure I cook tonight.
Nothing else, really. Oh, but I had a quick FB chat with Little Steve Hickman. We were talking about the days at the Spread and I mentioned Ross - he said "Oh, was he the guy who had never been to a football match, but came with us to the Aldershot/Wolves game?" I had to disabuse him of the notion (Ross being a Chelsea season-ticket holder for years!) Classic Ross wind-up - the pay-off coming nearly 20 years down the road! It's a talent, that's for sure!
Wednesday, November 16, 2016
I'm slacking!
Meant to keep this up daily, but I've not posted since Thursday! What has happened? Let's think....
Friday was pretty much like the rest of the week, except that I got to sit down with Dave Kilat and tell him about my diagnosis. I've always liked and respected Dave. He was sympathetic and kind, as expected. Turns out that he has a daughter-in-law who has just been diagnosed with breast cancer (at only 31), Sad sad sad! Hopefully they have caught her early.
Saturday should have been Flying Frogs day, but Finn had a dress rehearsal for his Suessical on Sunday. I dashed to the Infusion unit to get my dressing changed, which went fine - nurses are all kind and generous with their time. Took Finn to rehearsal, but he didn't know where he was supposed to be! We eventually found the rehearsal already started in the gym - a little late, but it didn't matter. Rest of Saturday, went for a walk, cooked and played on the PC.
Sunday - phoned home via skype as usual. I think it's helpful to talk about things to everyone I can, and Mum and Dad both went through similar treatment, though Dad may not remember. Not too many technical difficulties this time, which was nice - they had had Jon and his family, plus Coral, over to visit on Saturday, so there was a lot of news.
Then the Suessical. A lot of technical issues with sound dropping out and disappearing altogether, but it was a lot of fun. Finn looked like he was enjoying himself (though taking it very seriously!) and was in time with the rest of his group during his performance (they were army cadets at military reform school, appropriately!). Had 2 beers on Sunday night while cooking - I confirmed with one of the nurses that it would do no harm, while the pump was not attached, although she warned me it may not taste right! It was fine, and I enjoyed it! I think for future Sundays, I shall invest in something a bit more special than Brew Free or Die, although that is perfectly fine!
Monday was the re-attachment of the pump. It had been nice to be free of it for a couple of days. Then radiotherapy as usual, and then back to Santa Rosa for the Cancer Support Group. Really glad I went - also glad that Kathy was there to break me in! There are people there who have been suffering for a long time and with far worse conditions than mine, but everyone is positive and forward-looking. I'm going to enjoy attending, I think!
There's one guy, Jay, who had Colo-rectal cancer and underwent the same treatment as me, even down to the same surgeon (although neither of us could remember his name!). It was interesting to talk to him and get some insight. He's 74 and has weathered the treatment just fine, so it should be a breeze for a youngster like me, right!!!
The rest of Monday was spent sleeping! I decided not to head back to Petaluma and headed home - described the meeting to Jean and then fell asleep! Evan went to get Finn, so I basically just stayed in bed until about 5:30!
Tuesday is the regular check in with the doctor day at the Rohnert Park Center. Weight was pretty much stable (although I'm expecting it to drop just because I'm not drinking), temperature and blood pressure fine. I described my toilet habits, which are definitely changing, but not dramatically as yet - although I have started taking precautionary nausea meds and have bought some wet wipes.
Now it's Wednesday and HR are making a fuss about the form that we gave to Dr Akhtar and that he appears to have lost! I've got a copy and they've given me a week to get it sorted - no idea what they would do if I don't do anything about it! Tired, but I have been able to get some work done! I don't think I can take on any major projects, though - I think my most useful role at the moment is as a sounding board for Luke/Tatiane and to just fix data here and there!
Friday was pretty much like the rest of the week, except that I got to sit down with Dave Kilat and tell him about my diagnosis. I've always liked and respected Dave. He was sympathetic and kind, as expected. Turns out that he has a daughter-in-law who has just been diagnosed with breast cancer (at only 31), Sad sad sad! Hopefully they have caught her early.
Saturday should have been Flying Frogs day, but Finn had a dress rehearsal for his Suessical on Sunday. I dashed to the Infusion unit to get my dressing changed, which went fine - nurses are all kind and generous with their time. Took Finn to rehearsal, but he didn't know where he was supposed to be! We eventually found the rehearsal already started in the gym - a little late, but it didn't matter. Rest of Saturday, went for a walk, cooked and played on the PC.
Sunday - phoned home via skype as usual. I think it's helpful to talk about things to everyone I can, and Mum and Dad both went through similar treatment, though Dad may not remember. Not too many technical difficulties this time, which was nice - they had had Jon and his family, plus Coral, over to visit on Saturday, so there was a lot of news.
Then the Suessical. A lot of technical issues with sound dropping out and disappearing altogether, but it was a lot of fun. Finn looked like he was enjoying himself (though taking it very seriously!) and was in time with the rest of his group during his performance (they were army cadets at military reform school, appropriately!). Had 2 beers on Sunday night while cooking - I confirmed with one of the nurses that it would do no harm, while the pump was not attached, although she warned me it may not taste right! It was fine, and I enjoyed it! I think for future Sundays, I shall invest in something a bit more special than Brew Free or Die, although that is perfectly fine!
Monday was the re-attachment of the pump. It had been nice to be free of it for a couple of days. Then radiotherapy as usual, and then back to Santa Rosa for the Cancer Support Group. Really glad I went - also glad that Kathy was there to break me in! There are people there who have been suffering for a long time and with far worse conditions than mine, but everyone is positive and forward-looking. I'm going to enjoy attending, I think!
There's one guy, Jay, who had Colo-rectal cancer and underwent the same treatment as me, even down to the same surgeon (although neither of us could remember his name!). It was interesting to talk to him and get some insight. He's 74 and has weathered the treatment just fine, so it should be a breeze for a youngster like me, right!!!
The rest of Monday was spent sleeping! I decided not to head back to Petaluma and headed home - described the meeting to Jean and then fell asleep! Evan went to get Finn, so I basically just stayed in bed until about 5:30!
Tuesday is the regular check in with the doctor day at the Rohnert Park Center. Weight was pretty much stable (although I'm expecting it to drop just because I'm not drinking), temperature and blood pressure fine. I described my toilet habits, which are definitely changing, but not dramatically as yet - although I have started taking precautionary nausea meds and have bought some wet wipes.
Now it's Wednesday and HR are making a fuss about the form that we gave to Dr Akhtar and that he appears to have lost! I've got a copy and they've given me a week to get it sorted - no idea what they would do if I don't do anything about it! Tired, but I have been able to get some work done! I don't think I can take on any major projects, though - I think my most useful role at the moment is as a sounding board for Luke/Tatiane and to just fix data here and there!
Friday, November 11, 2016
Change of Plan
Didn't go to the Support Group after all - Jean needed to get the pension documents in. I should be able to make it to Monday's session in Santa Rosa, so that may be better as it happens.
Stomach is making strange sounds and I do feel a little burning around the anus, which must be down to the radiation. I'm peeing frequently, but not huge amounts. I'm not having much fun!
Stomach is making strange sounds and I do feel a little burning around the anus, which must be down to the radiation. I'm peeing frequently, but not huge amounts. I'm not having much fun!
Thursday, November 10, 2016
Support
There's a "Living with Cancer" support group on a Monday morning that Kathy went (and still goes occasionally) to in Santa Rosa - sadly, this clashes with my Radiation treatment, so if I go to that, I will have to show up late, which I don't really want to have to do. The alternative is one in Petaluma this afternoon at 3:00, which I'm planning to attend today.
Things are OK at the moment. I'm getting odd feelings in the stomach occasionally - like I was really nervous about something (which I am, but anyway...) - and I am pretty tired most of the time, and head-achey, but that is how I have been anyway in the wake of the various shoulder operations and the lingering pain from that, so I am not sure if I am imagining things that are not there. I'm right now, for the first time, experiencing a bit of a burning sensation in my arse, and I do constantly feel like I need to poo, even immediately after pooing! Need to get some wet wipes! I'm expecting the worst, but have not yet experienced anything that out of the ordinary.
Will try to update this after the support group meeting.
Still taking daily photos at the bottom of the stairs. Not sure that I look any different yet, and not sure if I will - may as well keep it up and see if it becomes interesting at all.
Things are OK at the moment. I'm getting odd feelings in the stomach occasionally - like I was really nervous about something (which I am, but anyway...) - and I am pretty tired most of the time, and head-achey, but that is how I have been anyway in the wake of the various shoulder operations and the lingering pain from that, so I am not sure if I am imagining things that are not there. I'm right now, for the first time, experiencing a bit of a burning sensation in my arse, and I do constantly feel like I need to poo, even immediately after pooing! Need to get some wet wipes! I'm expecting the worst, but have not yet experienced anything that out of the ordinary.
Will try to update this after the support group meeting.
Still taking daily photos at the bottom of the stairs. Not sure that I look any different yet, and not sure if I will - may as well keep it up and see if it becomes interesting at all.
Wednesday, November 9, 2016
Education
Chemo education session. As the only one there to have actually started it, I assumed that people would be more interested in asking me what was happening and how it was going, but only one person asked and she seemed to be in no mood to listen to the answers - which I guess is fair enough! I should go to the support group and hear what people have to say there. The Monday one is tricky because it generally clashes with my radiation appointments, although I may be able to make it this coming Monday.
Fucking Trump won! Unbelievable! One of the "jokey" things I'd thought of saying on Facebook was that if he wins, I'll turn down any treatment - that's not so funny now! We need to stand up and fight!
The next three days are pretty nothing-y - just going for the radiation treatment and coming to work. Dressing change on Saturday and then back to the infusion center for the refilled pump on Monday and back to the grind! I think that the support group would help to break that up a bit - maybe the Petaluma one would work better? I think that is on Thursdays. I have the booklet in the car! I can check! 3:00pm tomorrow. David Martin is the leader and it is at 3900 Lakeville Highway, Petaluma.
Fucking Trump won! Unbelievable! One of the "jokey" things I'd thought of saying on Facebook was that if he wins, I'll turn down any treatment - that's not so funny now! We need to stand up and fight!
The next three days are pretty nothing-y - just going for the radiation treatment and coming to work. Dressing change on Saturday and then back to the infusion center for the refilled pump on Monday and back to the grind! I think that the support group would help to break that up a bit - maybe the Petaluma one would work better? I think that is on Thursdays. I have the booklet in the car! I can check! 3:00pm tomorrow. David Martin is the leader and it is at 3900 Lakeville Highway, Petaluma.
Tuesday, November 8, 2016
Chemo and Radiation start
9:00am appointment at Kaiser to get my pump fitted. Nurse had a bit of trouble with air in the line, so it took a bit longer than expected, but got there in the end. Then got sent up to the upstairs pharmacy to pick up some nausea meds. In line, I heard a beeping sound and looked around to try to see the cause - turned out that it was me, of course! I hit reset, but 2 minutes later, it went off again, so I headed back to the infusion center where another nurse loosened the clamp which was causing it!
It's all fun!
Then drove down to work - didn't get there until about 11:20 and had my first radiation appointment in Rohnert Park set for 12:30, so I ended up just spending about 40 minutes at work (my kind of day!).
Radiation was pretty straightforward, apart from having to deal with the pump, which I am getting used to having there. It really only took a minute or two once they had lined me up on the gurney. Boombox was playing "Spirit in the Sky". Decided to head home afterwards and glad I did, I was pretty worn out - mainly from the stress of it all.
Slept for a couple of hours while Jean went down to her old office to try to sort out the pension stuff. Bad news on that score, we're not going to be getting the dosh until the end of the year! Will need to talk to ASC to explain that we are planning to pay them!! Not looking forward to that at all!
Robbie replied to my message and it was lovely to hear from him. If there's one good thing from this whole affair it is demonstrating to me how much people do care about us!
Overnight, got woken up by the pump alarm 4 times! I'm assuming because I was lying on the tube. Need to get that sorted - don't want to be losing sleep!
Tuesday I needed to be at the Rohnert Park Cancer Center at 8:10 for an 8:20 session. This meant forcing Finn out of the house early, which was fine - he was very good. The session seemed to be longer, I should ask the doctor if it is going to be consistent lengths of treatment everyday or if there is a variable pattern.
Not really feeling any side effects yet, although I do have that metallic taste in my mouth and am pretty tired all the time.
Class this afternoon on dealing with Chemotherapy and the side effects. 
It's all fun!
Then drove down to work - didn't get there until about 11:20 and had my first radiation appointment in Rohnert Park set for 12:30, so I ended up just spending about 40 minutes at work (my kind of day!).
Radiation was pretty straightforward, apart from having to deal with the pump, which I am getting used to having there. It really only took a minute or two once they had lined me up on the gurney. Boombox was playing "Spirit in the Sky". Decided to head home afterwards and glad I did, I was pretty worn out - mainly from the stress of it all.
Slept for a couple of hours while Jean went down to her old office to try to sort out the pension stuff. Bad news on that score, we're not going to be getting the dosh until the end of the year! Will need to talk to ASC to explain that we are planning to pay them!! Not looking forward to that at all!
Robbie replied to my message and it was lovely to hear from him. If there's one good thing from this whole affair it is demonstrating to me how much people do care about us!
Overnight, got woken up by the pump alarm 4 times! I'm assuming because I was lying on the tube. Need to get that sorted - don't want to be losing sleep!
Tuesday I needed to be at the Rohnert Park Cancer Center at 8:10 for an 8:20 session. This meant forcing Finn out of the house early, which was fine - he was very good. The session seemed to be longer, I should ask the doctor if it is going to be consistent lengths of treatment everyday or if there is a variable pattern.
Not really feeling any side effects yet, although I do have that metallic taste in my mouth and am pretty tired all the time.
Class this afternoon on dealing with Chemotherapy and the side effects.
Sunday, November 6, 2016
Dramatic Saturday
Finn was off school for a couple of days with some sort of virus. When he gets sick, he never really shows any symptoms, just gets a bit of a fever and slows down a bit - and it always seems to be worse come the evening. By Saturday morning, he seemed right as rain, so we set off to Flying Frogs in the morning.
I went to Raleys to get a couple of things, then went back to the gym and sat on the sofa. Finn came over and said he thought he was going to throw up - I told him to get some water, which he did and then he went into the restroom. He seemed to recover ok, without throwing up and then went back to join his group. 2 minutes later he was back saying he wanted to go home, so we headed out. Just as we were about to leave the building, he said he couldn't see, started throwing up and passed out in my arms! With help from one of the Flying Frog guys, we laid him on another sofa and he came round after about 30 seconds, but was still bugle-y and obviously not well.
2 minutes later and he was just fine - right back to his usual self!
It was pretty scary at the time. We called Kaiser and I spoke to a duty nurse who said we should take him in, so we got an appointment for the afternoon - sadly, I couldn't get it to coincide with my existing dressing-changing appointment, so I had to make 2 trips down.
Dressing change went fine and Finn's appointment put our minds at ease. Doctor said he was obviously fighting a virus and the activity at the gym had just been too much, so the body just shut down for a few seconds. Said to keep an eye on him and drink plenty of fluids.
So, tomorrow is my big day! Get issued with my pump and then at 12:30 it is down to Rohnert Park for the first radio-therapy session!
I can't say I'm not scared, but the logical part of my brain knows that the chances are everything will work out! I just need to do what they tell me and keep positive!
I went to Raleys to get a couple of things, then went back to the gym and sat on the sofa. Finn came over and said he thought he was going to throw up - I told him to get some water, which he did and then he went into the restroom. He seemed to recover ok, without throwing up and then went back to join his group. 2 minutes later he was back saying he wanted to go home, so we headed out. Just as we were about to leave the building, he said he couldn't see, started throwing up and passed out in my arms! With help from one of the Flying Frog guys, we laid him on another sofa and he came round after about 30 seconds, but was still bugle-y and obviously not well.
2 minutes later and he was just fine - right back to his usual self!
It was pretty scary at the time. We called Kaiser and I spoke to a duty nurse who said we should take him in, so we got an appointment for the afternoon - sadly, I couldn't get it to coincide with my existing dressing-changing appointment, so I had to make 2 trips down.
Dressing change went fine and Finn's appointment put our minds at ease. Doctor said he was obviously fighting a virus and the activity at the gym had just been too much, so the body just shut down for a few seconds. Said to keep an eye on him and drink plenty of fluids.
So, tomorrow is my big day! Get issued with my pump and then at 12:30 it is down to Rohnert Park for the first radio-therapy session!
I can't say I'm not scared, but the logical part of my brain knows that the chances are everything will work out! I just need to do what they tell me and keep positive!
Friday, November 4, 2016
I'm connected
I've obviously got tough old veins! Last time I had to have a PICC line put in, they took 3 or 4 attempts and I ended up getting wheeled down to an x-ray room to have the task completed. This time, the nurse took 3 attempts on 2 different veins before it finally slid in. Perfectly positioned, though - as confirmed by a quick x-ray.
Nurse afterwards showed me where my blood had spurted out all over the computer during one of the unsuccessful attempts! Really glad I wasn't aware of that at the time!
Also got shown the sort of pump I'm going to be given on Monday. It's pretty bulky, but there is a long connector, so it can be handled pretty easily.
Nurse afterwards showed me where my blood had spurted out all over the computer during one of the unsuccessful attempts! Really glad I wasn't aware of that at the time!
Also got shown the sort of pump I'm going to be given on Monday. It's pretty bulky, but there is a long connector, so it can be handled pretty easily.
Thursday, November 3, 2016
No teeth cleaning allowed!
Seems that one of the things that they discourage when you are on Chemotherapy is tooth cleaning! I had an appointment set for next Thursday at Dr Bauer's so had to reschedule for today. So, the hygienist was the first 'stranger' that I have had to tell about the diagnosis. Very strange feeling having to tell someone! I hardly understand it myself and when she asked details it was hard to decide what to say - I don't want to go into all the details, but she asked about the diagnosis (whether it was because of symptoms or because of a routine test), so that was easy to answer.
Tomorrow is the picc line installation. Went through that before after the last shoulder operation, as I recall it wasn't very pleasant, and they had to have 2 or 3 goes at it before they got it in position correctly. Hopefully it will be less eventful this time.
Tomorrow is the picc line installation. Went through that before after the last shoulder operation, as I recall it wasn't very pleasant, and they had to have 2 or 3 goes at it before they got it in position correctly. Hopefully it will be less eventful this time.
Wednesday, November 2, 2016
Waiting waiting waiting
Everything is confirmed - PICC line will be inserted on Friday morning, then on Monday I get the first pump and then it's down to Rohnert Park for the radiation. I'm trying to find more information about what the pump is going to look like and how it is carried around and all that stuff, but my Googling skills are letting me down! Wait and see, I guess!
Nurse at Kaiser said that I will not need anyone to drive me on Friday, so I guess I will be on my own getting the PICC line inserted. I think I want Jean around when I get the first treatments, though!
Advice is not to have any teeth cleaning while doing chemotherapy, so I have managed to re-schedule next Thursday's appointment to this week.
Nurse at Kaiser said that I will not need anyone to drive me on Friday, so I guess I will be on my own getting the PICC line inserted. I think I want Jean around when I get the first treatments, though!
Advice is not to have any teeth cleaning while doing chemotherapy, so I have managed to re-schedule next Thursday's appointment to this week.
Tuesday, November 1, 2016
Under starter's orders...
Have been able to move up the start date of the radio- and chemo- therapy to Monday 7th instead of Monday 14th - that's great, the less waiting around.
Just got called back to say I have to get blood work done and my port installed before then (and also that the Chemotherapy Class has been cancelled, which is a bummer, but they have booked me in for next week's class). Just realised that we didn't talk about support groups at yesterday's meeting with Dr Akhtar - wonder who I should be asking about that!
Just got called back to say I have to get blood work done and my port installed before then (and also that the Chemotherapy Class has been cancelled, which is a bummer, but they have booked me in for next week's class). Just realised that we didn't talk about support groups at yesterday's meeting with Dr Akhtar - wonder who I should be asking about that!
Monday, October 31, 2016
It's going to be a pump
We just got back from our Dr Akhtar and he told me that initially, in the run up to the operation, they will be putting a PICC line into my arm and I'll be carrying a pump around which will be delivering the chemicals. I'll be contacting RPCC to see if they can bring forward the initial appointment by a week, so I can get going on the 7th rather than the 14th - we will see.
I was kind of hoping for a pill, but he said that because I'm young and fit, he prefers the pump! I'll have to find out what the benefits are.
After the operation, I will be on a different schedule which will involve fortnightly treatments, but there will be no further radiation.
There is a newcomers to Chemotherapy class at 3:00 on Tuesdays. I'm planning to go tomorrow.
I'm not feeling very brave right now, and the whole thing has caught me off guard, but I can can be a determined bugger - and I've got way too much to live for to let this take me down!
I was kind of hoping for a pill, but he said that because I'm young and fit, he prefers the pump! I'll have to find out what the benefits are.
After the operation, I will be on a different schedule which will involve fortnightly treatments, but there will be no further radiation.
There is a newcomers to Chemotherapy class at 3:00 on Tuesdays. I'm planning to go tomorrow.
I'm not feeling very brave right now, and the whole thing has caught me off guard, but I can can be a determined bugger - and I've got way too much to live for to let this take me down!
Facebook update
I decided to go ahead and post about what is happening on FB.. Really positive response, many people asking to be kept informed, so I guess that the odd update there would not be a bad thing! I'll keep this private for now.
Went with:
"I've been going back and forth over how, or whether, to post this, but have decided to dive straight in.
Off to see Dr Akhtar this afternoon - hopefully to get some sort of idea as to when the Chemo treatment is going to get going - then over to Kathy's for our traditional Halloween (although Finn claims to not want to go trick or treating, which is a turn-up!).
Tired and distracted, not really achieving anything at work. Ho-Hum!
Went with:
"I've been going back and forth over how, or whether, to post this, but have decided to dive straight in.
A week ago, I had a diagnosis of rectal cancer confirmed by way of an
endoscopic ultrasound. Previous to that, I had first tested positive
via a stool sample, then a colonoscopy. A CT scan indicated that the
cancer had not spread to other parts of my body, and the ultrasound
further confirmed that the cancer was confined to the rectum.
I’m going to be starting chemo- and radio- therapy in the next few days for a period of about 6 weeks - after that, I will have a recovery period, followed by a laparoscopic operation towards the end of February, followed by further chemotherapy.
We're dealing with the news and preparing as well as we can to fight this thing. I'm going to be putting myself firmly in the hands of the team of doctors at Kaiser and have amazing support from my family.
Sorry to break such bad news like this, but I could think of no other way to reach everyone."
Had a meeting with Julie from HR and filled her in - got forms for FMLA which need to be filled in by one or other of my doctors.I’m going to be starting chemo- and radio- therapy in the next few days for a period of about 6 weeks - after that, I will have a recovery period, followed by a laparoscopic operation towards the end of February, followed by further chemotherapy.
We're dealing with the news and preparing as well as we can to fight this thing. I'm going to be putting myself firmly in the hands of the team of doctors at Kaiser and have amazing support from my family.
Sorry to break such bad news like this, but I could think of no other way to reach everyone."
Off to see Dr Akhtar this afternoon - hopefully to get some sort of idea as to when the Chemo treatment is going to get going - then over to Kathy's for our traditional Halloween (although Finn claims to not want to go trick or treating, which is a turn-up!).
Tired and distracted, not really achieving anything at work. Ho-Hum!
Saturday, October 29, 2016
Why do I want to tell everyone my diagnosis so much? I keep formulating Facebook posts in my head and arguing with myself about how to go about it and what to say, and whether I am going to come off as needy, or whether people are just going to get annoyed by it! But I still really feel that it would help me in some way if I do! I don't know how, or in what way that help will manifest itself...maybe someone will have a great suggestion for dealing with the side-effects of the radiation treatment? or maybe someone will suggest some food or drink that is going to help with keeping up strength? I don't know. But I feel that I really want to speak out, but at the same time I don't! I know that I want to tell those closest to me in person rather than through a Facebook post, but who does that include? Probably the only relevant person is Kathy - and I do absolutely want to sit down with her - but what about Ross, Robbie, Jon? If I email them personally, how are they going to react? What good would it do to do that? Last night's dreams were not good, but they were just dreams! Shit shit shit.....I hate this so much! I just don't know what to do!
Meeting my surgeon
Went solo down to the City in the end -figured that Jean would be better off getting stuff done at home or sleeping. Good decision, as it turns out! It was the most intrusive and uncomfortable examination I've ever had while conscious! Another first for the week, to add to the tattoo and the enema!
Doctor was really encouraging. Told me the tumour is 10cm from the anus, in the middle of the rectum, explained in detail how the operation goes (small incisions, minimally invasive, area is cut out and the 2 loose ends re-connected). Warned that there is about a 5% chance that I will have to use a colostomy bag permanently, and a 50% chance that I will have to use one for at least a little while after the operation. I will definitely have changed toilet habits (more frequent and less reliable).
The operation is provisionally set for February 23rd. The Radiation/Chemo treatment should be over just before Xmas, so I will have 6 to 8 weeks of recovery, although he did emphasize that the effects of that treatment carry on after you have finished actually receiving the treatment.
He advised me to forget about the operation until the chemo and radiation treatment is done - concentrate fully on that and not worry about or even think about the operation until the time comes. He also praised the team in Santa Rosa and said that I have the best experts working on my team!
Drove back feeling reasonably positive, if a little glum!
Then last night had some horrible nightmares about trying to tell people about the cancer and being ignored or laughed at - friends, family, complete strangers all doing the same thing! Really disturbing!
I want to get started and get this thing moving! I'm scared, worried and feel a big hole in the pit of my stomach. I keep tearing up. I don't like this one bit!
Doctor was really encouraging. Told me the tumour is 10cm from the anus, in the middle of the rectum, explained in detail how the operation goes (small incisions, minimally invasive, area is cut out and the 2 loose ends re-connected). Warned that there is about a 5% chance that I will have to use a colostomy bag permanently, and a 50% chance that I will have to use one for at least a little while after the operation. I will definitely have changed toilet habits (more frequent and less reliable).
The operation is provisionally set for February 23rd. The Radiation/Chemo treatment should be over just before Xmas, so I will have 6 to 8 weeks of recovery, although he did emphasize that the effects of that treatment carry on after you have finished actually receiving the treatment.
He advised me to forget about the operation until the chemo and radiation treatment is done - concentrate fully on that and not worry about or even think about the operation until the time comes. He also praised the team in Santa Rosa and said that I have the best experts working on my team!
Drove back feeling reasonably positive, if a little glum!
Then last night had some horrible nightmares about trying to tell people about the cancer and being ignored or laughed at - friends, family, complete strangers all doing the same thing! Really disturbing!
I want to get started and get this thing moving! I'm scared, worried and feel a big hole in the pit of my stomach. I keep tearing up. I don't like this one bit!
Friday, October 28, 2016
Down to the City again
Had nothing scheduled for today, until late yesterday when Dr Alkoraishi rang from San Francisco and said he could see me during his lunch-break on Friday if we can get down by about 12:00. We want to get on with this, so I agreed. He asked me to give myself an enema before heading down, so I had to go to CVS to buy one.
In line, there was a woman making a big fuss about the receipt and failing to use the payment machine properly and generally being crap. I just waited patiently, with my 2-pack of enemas (enemae?) on the belt. She turned to me and apologized and I said no problem - then she said, well I can see you are planning a big night tonight, so I really don't want to hold you up. I looked confused, as did the checker, who said "Well, you are dressed very smartly!" to which the woman said "No, no, I know about these things, I'm a nurse, you know!" I'm still really baffled by what she meant or what she thought I had planned, and I don't think I really want to know!
Odd.
Anyway, this morning it is tipping down with rain, so the drive down to the City is not going to be pleasant. Not sure that the enema is going to be too pleasant either!
In line, there was a woman making a big fuss about the receipt and failing to use the payment machine properly and generally being crap. I just waited patiently, with my 2-pack of enemas (enemae?) on the belt. She turned to me and apologized and I said no problem - then she said, well I can see you are planning a big night tonight, so I really don't want to hold you up. I looked confused, as did the checker, who said "Well, you are dressed very smartly!" to which the woman said "No, no, I know about these things, I'm a nurse, you know!" I'm still really baffled by what she meant or what she thought I had planned, and I don't think I really want to know!
Odd.
Anyway, this morning it is tipping down with rain, so the drive down to the City is not going to be pleasant. Not sure that the enema is going to be too pleasant either!
Thursday, October 27, 2016
Rohnert Park Cancer Center
When we got home, we got up on the roof and attempted to fix a leak in the in-law unit. Sticky black tar-like stuff stuffed into the gully where we think the leak is occurring. It was actually quite fun!
Thursday was my measuring day at RPCC. They have a CT Scanner that just records images and allows them to mark the exact point on the body that they will need to line up the radiation machine later. So, I have got my first tattoo!! Three of them in fact. I've not looked at them yet - I should be able to see the ones on my hips. I'm going to be going there 5 days a week for about 6 weeks (with a day off for Thanksgiving!) - the appointments most days will only be 10 minutes or so. Time of day to follow. Hopefully I can get it to fit in OK with Finn and Work schedules.
The effects of the radiation are cumulative, and are accentuated by the chemo-therapy (I will find out what sort of Chemo-therapy they have selected for me on Monday - woohoo!), they are preparing me for tiredness, soreness, frequent urgent urination, diarrhea, itching and that sort of thing! I will get another list of the side effects I should expect from the chemo-therapy on Monday.
It's really not going to be a lot of fun!
Still, others have got through it before, and I'm going to join them!
Wednesday, October 26, 2016
On we go!
The weekend was basically spent waiting for Monday and the UltraSound scan that was going to determine my fate (cue the melodramatic music!). Cooked, did stuff, worried, called M&D, not much else. Very worried.
Monday arrived and we toddled down to SF - I drove so as to keep my mind engaged on something. Admittance was a bit odd, the guy spent most of his time ignoring me and just clicking around his screen - maxed out the Benny card with the cost of the procedure - we need to get some cash together!
Procedure passed without incident - they let Jean into the room, so I got a hug before they put me under, which was nice! Woke up and got the news that:
It's a tumour.
It's at stage T3.
It needs to be shrunk.
It needs to be removed.
The drive home was quiet and tense, neither of us are looking forward to the next few weeks. I want to get on with getting this thing sorted.
Dr Akhtar had mentioned a trial that they would like me to be a part of, however, having read through the details, it really doesn't appeal - there would be only chemo-therapy, no radiation, but the treatment period would be twice as long before the operation. It was really stressing me out just thinking about it. I emailed him with some questions, but didn't really get a straight answer.
On Tuesday, I got a call from the Cancer center in Rohnert Park, over the road from the old Cross-check office and we arranged a "get to know you" meeting for Wednesday afternoon. I tried to message and call Jean to make sure that there was nothing clashing with that, but couldn't get through - that and a couple of work-related things caused me to start panicking a bit, just starting to feel out of control. Jean phoned a short while later and I managed to reach a private office down the corridor before I burst into tears!
First time I've cried.
Felt bad for Jean having to deal with me in hysterics. I'm trying to be strong. I'm not strong!
Tuesday evening, we agreed that we should let Finn know what is going on. He already suspected and had been asking me why I was sad. I really blew it, though! He was getting Ice Cream and I was tidying the kitchen and I just started blurting it out without Jean even being in the room. I think he took it pretty well, considering, but I really should have done a better job of it!
This morning on the way to school, he gave me a sympathetic pat on the shoulder, which almost set off the waterworks again!
I filled in Shane and Darlene on the latest updates - they have both been really supportive. I mentioned working from home and Shane said "Of course!" like it was no problem, but I am not convinced that HR will be so accommodating. He told me to talk to HR to make sure that I am still covered by FMLA, which I should do, but can't face right now.
Next up today will be the meeting in Rohnert Park - WooHoo - we are due there at 2:00!
Monday arrived and we toddled down to SF - I drove so as to keep my mind engaged on something. Admittance was a bit odd, the guy spent most of his time ignoring me and just clicking around his screen - maxed out the Benny card with the cost of the procedure - we need to get some cash together!
Procedure passed without incident - they let Jean into the room, so I got a hug before they put me under, which was nice! Woke up and got the news that:
It's a tumour.
It's at stage T3.
It needs to be shrunk.
It needs to be removed.
The drive home was quiet and tense, neither of us are looking forward to the next few weeks. I want to get on with getting this thing sorted.
Dr Akhtar had mentioned a trial that they would like me to be a part of, however, having read through the details, it really doesn't appeal - there would be only chemo-therapy, no radiation, but the treatment period would be twice as long before the operation. It was really stressing me out just thinking about it. I emailed him with some questions, but didn't really get a straight answer.
On Tuesday, I got a call from the Cancer center in Rohnert Park, over the road from the old Cross-check office and we arranged a "get to know you" meeting for Wednesday afternoon. I tried to message and call Jean to make sure that there was nothing clashing with that, but couldn't get through - that and a couple of work-related things caused me to start panicking a bit, just starting to feel out of control. Jean phoned a short while later and I managed to reach a private office down the corridor before I burst into tears!
First time I've cried.
Felt bad for Jean having to deal with me in hysterics. I'm trying to be strong. I'm not strong!
Tuesday evening, we agreed that we should let Finn know what is going on. He already suspected and had been asking me why I was sad. I really blew it, though! He was getting Ice Cream and I was tidying the kitchen and I just started blurting it out without Jean even being in the room. I think he took it pretty well, considering, but I really should have done a better job of it!
This morning on the way to school, he gave me a sympathetic pat on the shoulder, which almost set off the waterworks again!
I filled in Shane and Darlene on the latest updates - they have both been really supportive. I mentioned working from home and Shane said "Of course!" like it was no problem, but I am not convinced that HR will be so accommodating. He told me to talk to HR to make sure that I am still covered by FMLA, which I should do, but can't face right now.
Next up today will be the meeting in Rohnert Park - WooHoo - we are due there at 2:00!
Thursday, October 20, 2016
Negative!!!
CT Scan came back negative!!! Yay!
Can't celebrate too wildly, because we will not know until next week how far the tumour in the rectum has progressed, but that's good news, right? They can't see anything anywhere else! $395 well spent, I'd say!
So, today a call from Kaiser in SF pre-registering me for Monday. Asked me if I was religious or needed spiritual support! Hmmm...anyway, this one is going to set me back $1,340.80, and that can go up depending on if the doctor orders any more stuff to be done. I guess we are just going to have to accept that we are going to hit our maximum out of pocket and try to budget for that - HA! "budget", that's a laugh!
Wish Monday was here already, I just want to know what needs to be done!
Can't celebrate too wildly, because we will not know until next week how far the tumour in the rectum has progressed, but that's good news, right? They can't see anything anywhere else! $395 well spent, I'd say!
So, today a call from Kaiser in SF pre-registering me for Monday. Asked me if I was religious or needed spiritual support! Hmmm...anyway, this one is going to set me back $1,340.80, and that can go up depending on if the doctor orders any more stuff to be done. I guess we are just going to have to accept that we are going to hit our maximum out of pocket and try to budget for that - HA! "budget", that's a laugh!
Wish Monday was here already, I just want to know what needs to be done!
Tuesday, October 18, 2016
Another Day, another scan
CT Scan today - $400 worth! WooHoo! They pump iodine through you, which sends this sort of warm flush through your veins, very interesting. Only took about 1/2 an hour, including sitting in the corridor for 10 minutes waiting for the nurse to take the IV needle out.
Not sure when the results will show up.
Not sure when the results will show up.
Monday, October 17, 2016
Not a lot
Monday appointment with a dietician - pretty standard stuff: eat more vegetables, less fat and make sure you keep it balanced. The surprising thing was that once you start treatment, the advice is eat whatever you want and as much as you can! The appetite is going to be effected by the treatment and it's important to keep the weight up!
Other stuff - eat breakfast, have leafy vegetables at lunchtime (ramen is ok-ish, but need to have something with it!). Vegetables included in curry do count, so go ahead!
Picked up the stuff I need to drink for both Tuesday's CT scan and next Monday's probing. That's about it!
Other stuff - eat breakfast, have leafy vegetables at lunchtime (ramen is ok-ish, but need to have something with it!). Vegetables included in curry do count, so go ahead!
Picked up the stuff I need to drink for both Tuesday's CT scan and next Monday's probing. That's about it!
Sunday, October 16, 2016
I'm shrinking!
Friday 14th saw a visit to Dr Akhtar at the Kaiser center. His nursing assistant has vision problems and is very short - she was tasked with weighing and measuring me, which was a challenge. According to her measurements, I'm down to 5'10" from 5'11". Jean pointed out that the measure was dropping down every time I stood away from it. Never mind, eh! Ross always used to tell anyone who asked that he was 5'11", despite being at least 6'3" - yet another wonderfully pointless wind-up of his!
Anyway, the doctor couldn't really tell us much, he gave me a few prods and pokes, arranged for some lab work and a CT scan (more fasting and the drinking of iodine, whoopee!). I asked about diet and he referred me to a dietician who I will see on Monday.
Not much else, but at least I felt we were doing something - the ultrasound probe can't come quick enough for me! Need to know how serious or otherwise this is!
Finn's birthday today - he's turning 13. Cue the brave faces.
Anyway, the doctor couldn't really tell us much, he gave me a few prods and pokes, arranged for some lab work and a CT scan (more fasting and the drinking of iodine, whoopee!). I asked about diet and he referred me to a dietician who I will see on Monday.
Not much else, but at least I felt we were doing something - the ultrasound probe can't come quick enough for me! Need to know how serious or otherwise this is!
Finn's birthday today - he's turning 13. Cue the brave faces.
Thursday, October 13, 2016
It's official
Dr Feng called yesterday afternoon to confirm that it is definitely cancer, but that I am going to need an ultrasound examination to determine the extent of it. After that, it will be chemo-therapy to reduce the size of it and then an operation to remove it. Simple!
Weirdly, my mind has been mainly engaged in finding creative ways to "announce" the news on Facebook. I thought maybe send a photo of something that looks like crystal meth and say that I'm still trying to get that blue colour, any suggestions? Or a creative, ironic hashtag? Or maybe I should just keep quiet. I am conflicted. The sympathy would be nice, but it doesn't achieve anything, and the last thing I want is for people to tell me that they are going to pray for me, but what else can people do!
I'm not angry, but I am frustrated and very very scared. I've not cried yet. All the signs I can see point to this being treatable, so maybe I needn't be worrying at all, it's just the name "cancer" and the terms flying around ("chemotherapy", "infected tissue", "ulcerated lesion") that make it seem so dark.
Jean's been so sweet. I love her more than I have ever imagined being able to love. I hate the fact that this is going to be a burden on her - she's going to have to deal with all the household stuff and also with me, yet again! Plus, of course, we are going to have to find some money from somewhere!
Shit Fuck Bollocks!
Edit: I've asked twitter for help in naming the tumour "I've been told I have a small(?) cancerous tumour in my rectum. I think I need a name for it, any suggestions? I'm thinking maybe Arthur?"
Weirdly, my mind has been mainly engaged in finding creative ways to "announce" the news on Facebook. I thought maybe send a photo of something that looks like crystal meth and say that I'm still trying to get that blue colour, any suggestions? Or a creative, ironic hashtag? Or maybe I should just keep quiet. I am conflicted. The sympathy would be nice, but it doesn't achieve anything, and the last thing I want is for people to tell me that they are going to pray for me, but what else can people do!
I'm not angry, but I am frustrated and very very scared. I've not cried yet. All the signs I can see point to this being treatable, so maybe I needn't be worrying at all, it's just the name "cancer" and the terms flying around ("chemotherapy", "infected tissue", "ulcerated lesion") that make it seem so dark.
Jean's been so sweet. I love her more than I have ever imagined being able to love. I hate the fact that this is going to be a burden on her - she's going to have to deal with all the household stuff and also with me, yet again! Plus, of course, we are going to have to find some money from somewhere!
Shit Fuck Bollocks!
Edit: I've asked twitter for help in naming the tumour "I've been told I have a small(?) cancerous tumour in my rectum. I think I need a name for it, any suggestions? I'm thinking maybe Arthur?"
Monday, October 10, 2016
Off we go
No idea where this journey is going to lead, but I'm hoping that documenting it might help in some way.
On October 6th, 2016 I went for a colonoscopy at Kaiser Santa Rosa after blood was found in a stool sample I had provided a few weeks earlier.
I showed up, a little nervous, at the ambulatory clinic and was admitted - Jean was told that they would call her when I was ready to be picked up. They weighed me (I've gained 20lbs since my last Kaiser visit! Largely because I don't cycle any more and really haven't found a suitable replacement activity for keeping fit!), and took blood pressure and stuff and then showed me to a bed and told me to get the gown on.
A charming nurse came to complete the preliminaries - she asked if I had a problem with needles, which led to a garbled explanation of my medical history. Turns out that she is a cycle-commuter, too - I hope my horror story did not put her off. She told me that Doctor Feng who would be seeing me was great - another cyclist who had patented some water-proof shoe covers at some point.
So, I'm wheeled into the operating room and introduced to everyone (doctor, assistant and anesthetist), told to lie on my side and the next thing I know it's all over and I'm being asked if I want some apple juice.
Doctor Feng comes in to see me and explains what they found. This was the bit that I was worried about, turns out rightly! Polyps had been removed, but they also found an "ulcerated lesion" that may be cancerous. My mind basically shut down at this point! I know he also mentioned treatment options (including chemotherapy, cutting it out and radiation), but that until the tests came back from the labs, we would not know where we are going to start. I thanked him and he left.
Pretty much immediately I was joined by a male nurse (Paul?) who wanted to reassure me about survival rates - he asked me if I was religious, which was a bit concerning, and told me some stories of his cancer-surviving in-laws. I didn't really need that at this stage, my concerns are: How serious is this? What stage is the cancer at? What happens next? He asked me if I'd like him to break the news to Jean, to which I said "Yes" - I wanted her to hear it from someone who knew something about it rather than from me repeating half-remembered phrases that I have hardly taken in myself!
Went home and gratefully had some coffee and ate some food for the first time in 36 hours.
Friday morning I went to work and told Shane, my boss, about the news - asked him to keep it quiet. Thought it was only fair as I am more than likely going to need to take time of for tests/treatment/whatever, and my mental state may mean I am not 100% in the game - hope I don't live to regret the decision.
Work quiet apart from that - I googled symptoms and treatments, but until I know the stage of the cancer, there's not really any specific advice out there.
Weekend spent moping mainly - I tend to worry when I'm not busy and let my mind go to places it has no business going, so staying busy is going to be vital.
Phoned Mum and Dad on Sunday - I'd already let them know about the test results. Soo and Ipen were there, too. Mum & Soo concerned, Dad oblivious.
Emailed my GP to try to see if there was anything that I should be doing or avoiding doing - I think I confused the issue by bringing up shoulder pain meds, which was not really the issue. His answer didn't really lead anywhere.
Came to work on Monday and I'm moping around again, mainly - not really achieving anything and refreshing my email every 5 minutes in the hope of the test results arriving. 
On October 6th, 2016 I went for a colonoscopy at Kaiser Santa Rosa after blood was found in a stool sample I had provided a few weeks earlier.
I showed up, a little nervous, at the ambulatory clinic and was admitted - Jean was told that they would call her when I was ready to be picked up. They weighed me (I've gained 20lbs since my last Kaiser visit! Largely because I don't cycle any more and really haven't found a suitable replacement activity for keeping fit!), and took blood pressure and stuff and then showed me to a bed and told me to get the gown on.
A charming nurse came to complete the preliminaries - she asked if I had a problem with needles, which led to a garbled explanation of my medical history. Turns out that she is a cycle-commuter, too - I hope my horror story did not put her off. She told me that Doctor Feng who would be seeing me was great - another cyclist who had patented some water-proof shoe covers at some point.
So, I'm wheeled into the operating room and introduced to everyone (doctor, assistant and anesthetist), told to lie on my side and the next thing I know it's all over and I'm being asked if I want some apple juice.
Doctor Feng comes in to see me and explains what they found. This was the bit that I was worried about, turns out rightly! Polyps had been removed, but they also found an "ulcerated lesion" that may be cancerous. My mind basically shut down at this point! I know he also mentioned treatment options (including chemotherapy, cutting it out and radiation), but that until the tests came back from the labs, we would not know where we are going to start. I thanked him and he left.
Pretty much immediately I was joined by a male nurse (Paul?) who wanted to reassure me about survival rates - he asked me if I was religious, which was a bit concerning, and told me some stories of his cancer-surviving in-laws. I didn't really need that at this stage, my concerns are: How serious is this? What stage is the cancer at? What happens next? He asked me if I'd like him to break the news to Jean, to which I said "Yes" - I wanted her to hear it from someone who knew something about it rather than from me repeating half-remembered phrases that I have hardly taken in myself!
Went home and gratefully had some coffee and ate some food for the first time in 36 hours.
Friday morning I went to work and told Shane, my boss, about the news - asked him to keep it quiet. Thought it was only fair as I am more than likely going to need to take time of for tests/treatment/whatever, and my mental state may mean I am not 100% in the game - hope I don't live to regret the decision.
Work quiet apart from that - I googled symptoms and treatments, but until I know the stage of the cancer, there's not really any specific advice out there.
Weekend spent moping mainly - I tend to worry when I'm not busy and let my mind go to places it has no business going, so staying busy is going to be vital.
Phoned Mum and Dad on Sunday - I'd already let them know about the test results. Soo and Ipen were there, too. Mum & Soo concerned, Dad oblivious.
Emailed my GP to try to see if there was anything that I should be doing or avoiding doing - I think I confused the issue by bringing up shoulder pain meds, which was not really the issue. His answer didn't really lead anywhere.
Came to work on Monday and I'm moping around again, mainly - not really achieving anything and refreshing my email every 5 minutes in the hope of the test results arriving.
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