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!!!
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