So, I went along to Oxford yesterday. It's quite a drive out there, and we got a little lost coming back, and I've been told any further treatment or tests will need to be done there. A little inconvenient, but necessary.
That being said, my trips there should be limited to about once every 3 months or so. For the next 5 years. Read on..
We got there on time, and Megan and I headed in while my mum found a parking place. The building was huge, and was just one of many. Oxford hospitals is a very, very large place. We found a map and found the route to the cancer/haemotology ward pretty quickly, then talked to the receptionist there and took a seat. There were 4 waiting areas just for this one ward, and scribbled on a whiteboard in black marker was the following:
DR NICUM - 40 MINS WAIT
DR SOMETHING - 60 MINS WAIT
DR SOMETHING ELSE - 70 MINS WAIT
I didn't actually know my doctor's name. I didn't catch it in the phone-call originally, nor when I signed in at reception. I was however pretty sure it was none of the three on the whiteboard. Still, we got ready to wait a while.
After a while, Megan noticed we were the youngest people in the entire waiting area. Apparently, despite being very common in men aged 20-35, testicular cancer wasn't too common that day. Most of the other patients were 60+, with a few middle-aged people here and there.
Mum eventually found a place and managed to find the ward too, and then thankfully a few minutes later I was called in. Not sure why we didn't have to wait 40+ minutes (the board was updated while we were waiting, another 20 minutes or so added onto each number), but I wasn't about to complain. I went in alone.
I was weighed and measured.. for some reason, then asked if I came in alone. I told the nurse who was with me, but decided to speak to the doctor alone. I'd done that for all the talks so far, why not continue the same way? I was then lead into a small doctor's office and told to wait.
While waiting in this small, no windowed room, I kept my mind busy by thinking of ways to defend myself against the possibility of a shambling zombie stumbling into the room. Eventually I decided a chair would be the best defensive weapon, and then the doctor came in. He moved too fast to be a zombie, so that train of thought ended there.
He introduced himself, but I still didn't catch the name. Something starting with P, I think. We talked for a bit, about my case and how it all happened, he took some notes about my circumstances and my health, and asked if I knew why I'd been referred. I told him I didn't know, but that I knew my markers had gone down, and as he started to explain, a nurse interrupted and he had to go take a phone-call. He apologized, but was still gone for about 10 minutes. Thankfully no zombies attacked during that time, either.
When he returned he told me all patients in my situation are referred to Oxford for further tests, treatment and general information, as they are the main cancer body for this entire area of the UK. Milton Keynes is somewhere in the middle, sometimes being referred to Northampton, other times Oxford, but he assured me it should always be Oxford and nobody should be referring patients to Northampton anymore.
He then told me about the tumour that was removed. It was a roughly 3cm large sphere, which is apparently pretty small. It did contain several types of cancer, a lot of seminoma, some infant stage teratoma, and also some embryonal carcinoma. Yum.
He gave me some figures - due to the types of cancer, the lack of spreading shown on the CT scan and the dropped tumour markers, 95% of men in my situation are fine and don't need any further treatment. I have a low chance of the cancer coming back, and if it does, the odds that my remaining testes will be affected is even lower. He did tell me however, that Oxford are going to go over all the results of the tests Milton Keynes did, and if they feel there is something amiss, I may get another call. The chances of that are "less than 5%", though.
So, what happens now? Well, I have to go back in 6 weeks (28th November) for another blood test (AWESOME) and a chest x-ray. So that'll be fun. And the likelihood is that I will have another CT scan around January. And every 3 months after that. For 5 years.
What does that mean for me? Well, obviously if I leave the country again, I lose my free-CT-scan card. So we'll just have to take it one step at a time. If I can get another scan just before I leave, at least it'll give me a few months to get enough funds to start taking care of myself out there. And while USA CT scans are hella expensive, blood tests and x-rays aren't quite as bad, and hopefully I can get a job with health insurance.
After I was finished with the doctor, he sent in one of their cancer support nurses. She went over a few basic problems men like me have, and then gave me a checksheet with a bunch of help topics in them, such as cancer and dieting, infertility worries, depression, all sorts of problems or worries men get while going through this sort of thing. I checked a few and she said they'd send some information through the mail, and also gave me a website that I can check out at my leisure. I haven't had a chance to do that yet, but hopefully I'll have time soon.
But all that is a worry for another day. I am officially cancer free - for now. As soon as I shake the last remnants of this annoying cold, it'll be time to start doing things again.
That being said, my mother is going under the knife tomorrow for an operation to do with the veins in her legs. I won't go into detail, but it's something that's been plaguing her since she was younger than I am now, so if anyone is still sending me well wishes, I'd appreciate if they could send them her way instead.
So, I think that's about it, for now. I'll keep this blog updated when.. or if, anything happens. If all goes well, the next update will be at the end of November, when I head back to Oxford, but who knows what might happen.
Well, at least if the thing that happens is zombies, I'll be prepared.
Tuesday, October 18, 2011
Sunday, October 16, 2011
Oxford
So, I already posted this on Facebook, as I knew I wouldn't get around to blogging it for at least a day - my blood results came back, and I have normal, low tumour markers now. So that's good. That means the blood isn't reporting any hidden tumours that we don't know about. That, plus the clear scan, is really good news.
I have, however, still been referred to Oxford. I am heading there tomorrow morning, and there they shall discuss MY FUTURE. Again. Seems I might not be out of the woods yet. Chemo, radiotherapy or none of the above? Hopefully I'll know 12 hours from now.
I am however, still a little ill. Nothing major, just a cold. All kinds of coughing and sneezing, fun stuff. But at least I don't need to get anything surgically removed. That's a plus.
It's also my mum's birthday today, so I've spent the day cooking dinner and a cake. Curry and chocolate cake go together, right?
Oh also also here is a lovely picture of the bruise on my right arm, from where they took blood effortlessly five days ago. I swear I applied enough pressure. Apparently not.
I have, however, still been referred to Oxford. I am heading there tomorrow morning, and there they shall discuss MY FUTURE. Again. Seems I might not be out of the woods yet. Chemo, radiotherapy or none of the above? Hopefully I'll know 12 hours from now.
I am however, still a little ill. Nothing major, just a cold. All kinds of coughing and sneezing, fun stuff. But at least I don't need to get anything surgically removed. That's a plus.
It's also my mum's birthday today, so I've spent the day cooking dinner and a cake. Curry and chocolate cake go together, right?
Oh also also here is a lovely picture of the bruise on my right arm, from where they took blood effortlessly five days ago. I swear I applied enough pressure. Apparently not.
Wednesday, October 12, 2011
Blood Sample #5
Yes! Had my blood taken for the fifth time in the last 2 months today! I should be earning points or something, maybe get a free milkshake once I get to 6?
So I had my chat with Mr Andrews today, the surgeon that did my operation and also the consultant urologist in charge of my case. Arrived at MK hospital around 11:50am, and was called in at about 20 past 12. Not too bad.
He asked me some basic questions while bringing up all my files and images. He had the image of someone else's testes on the screen when I came in. It was kind of strange. Finally once the computer stopped freezing every 5 seconds, he got the files he needed.
He asked how the implant was sitting, and I got to ask him a few questions about it. I explained how it remained swollen for over a week, but that antibiotics fixed it. I asked exactly.. how it was sitting in there, and if it was stitched in. He told me they "attach" it to the skin, but didn't use the word stitch. He also told me they "close the hole" to stop it from floating back out. He told me I didn't want to cough it up one day. So I think I am stuck with how it feels now, which is very different from the other one.. but at least it helps my balance, right?
Then he started discussing the results of the scan. He said it was all good, and that it showed no spreading whatsoever. Good news. He also told me I needed another blood test today (number 5!) to check for tumour markers. If they've gone down too, there's a good chance I am in the clear. Regardless of result, my further treatment is up in the air at the moment, I could still need a round of chemo, or "a few packs" of radiotherapy. We'll see.
He told me about the tumour that was removed - it apparently had several types of germ cells within it, not just a single type. I thought tumours were always a specific type, teratoma, seminoma etc. But apparently mine contained both of those and more! Terrifying. But it hasn't spread. According to the scan. So that's good.
I told him that Mr Choudhary had booked me an appointment at Northampton before I even saw anybody. He said he shouldn't have done that, and asked him to be called in to ask why, but he was with another patient. He told me I should have had my chat first, and then had this blood test, and then further treatment discussed. He also said they don't work with Northampton anymore - any further treatment will probably be up in Oxford! But I'll worry about that if the time comes.
Oh, and the lady who took my blood today managed it first time. I was quite impressed. She then told me what great hair I have. As if I didn't know that already..
So.. for now, more waiting. But at least it's almost certain that I am fine now, instead of just hoping I'm fine.
Oh, and also, I have a cold. My throat is killing me. Megan has been sick for nearly a week now, so I have that to look forward to too! Hooray!
So I had my chat with Mr Andrews today, the surgeon that did my operation and also the consultant urologist in charge of my case. Arrived at MK hospital around 11:50am, and was called in at about 20 past 12. Not too bad.
He asked me some basic questions while bringing up all my files and images. He had the image of someone else's testes on the screen when I came in. It was kind of strange. Finally once the computer stopped freezing every 5 seconds, he got the files he needed.
He asked how the implant was sitting, and I got to ask him a few questions about it. I explained how it remained swollen for over a week, but that antibiotics fixed it. I asked exactly.. how it was sitting in there, and if it was stitched in. He told me they "attach" it to the skin, but didn't use the word stitch. He also told me they "close the hole" to stop it from floating back out. He told me I didn't want to cough it up one day. So I think I am stuck with how it feels now, which is very different from the other one.. but at least it helps my balance, right?
Then he started discussing the results of the scan. He said it was all good, and that it showed no spreading whatsoever. Good news. He also told me I needed another blood test today (number 5!) to check for tumour markers. If they've gone down too, there's a good chance I am in the clear. Regardless of result, my further treatment is up in the air at the moment, I could still need a round of chemo, or "a few packs" of radiotherapy. We'll see.
He told me about the tumour that was removed - it apparently had several types of germ cells within it, not just a single type. I thought tumours were always a specific type, teratoma, seminoma etc. But apparently mine contained both of those and more! Terrifying. But it hasn't spread. According to the scan. So that's good.
I told him that Mr Choudhary had booked me an appointment at Northampton before I even saw anybody. He said he shouldn't have done that, and asked him to be called in to ask why, but he was with another patient. He told me I should have had my chat first, and then had this blood test, and then further treatment discussed. He also said they don't work with Northampton anymore - any further treatment will probably be up in Oxford! But I'll worry about that if the time comes.
Oh, and the lady who took my blood today managed it first time. I was quite impressed. She then told me what great hair I have. As if I didn't know that already..
So.. for now, more waiting. But at least it's almost certain that I am fine now, instead of just hoping I'm fine.
Oh, and also, I have a cold. My throat is killing me. Megan has been sick for nearly a week now, so I have that to look forward to too! Hooray!
Monday, October 10, 2011
I don't know what to call these entries anymore
So just a quick (hopefully) but quite important update today.
So, I have my appointment with the urologist Mr Andrews on Wednesday. I already knew about that one, the hospital has confirmed the appointment no less than three times.
But today, Monday, I got a call from Northampton General Hospital asking me to attend the oncology department on Thursday. I say that's fine, but ask why and who set it up. The lady tells me it's with a Dr Falst, who I've been referred to by Mr Andrews. I tell her I haven't even seen Mr Andrews yet, but she tells me that's fine and that I still need to attend that appointment too.
So I get off the phone and think for a minute. Back before my surgery, I saw a Mr Choudhary, who discussed the procedure with me, asked about my implant preferences, etc. He told me about what would happen post-surgery - that I would have a follow up meeting, and then decide if I need further treatment (radiotherapy, chemo, etc). He told me if I did need either of those, that they would be done at Northampton General Hospital.
So my mind was racing at that point. Has Mr Andrews looked at my scan results and found out I need follow up treatment? Am I going to have to get chemo after all? I talked to Megan who agreed that it was kind of worrying. I went downstairs and told my mum, and she said it would probably all be fine, they probably just want a chat, but that I should phone my doctor and ask what was going on.
So I phoned my GP and the receptionist answered. I explained my case in a rather confusing and panicy way. She got a little confused, but eventually we got to the point. They hadn't sent anything to the hospital for over a week, and hadn't heard anything new. She suggested I phone MK hospital, which I did.
I was put through to Mr Andrews secretary, who confirmed I had been referred to Northampton, but was shocked that I hand't been told. Apparently this usually happens post-consultation, not before. She told me my case was discussed in a meeting last Tuesday, and then Mr Choudhary had dictated a letter to be sent to Northampton that Wednesday. They'd now received it, and have booked me in.
I asked why I'd been referred, and she told me it was a normal part of procedure. She told me all radical orchiectomy patients were referred to Northampton for further care. She started reading from either the letter to Northampton or directly from my file, and I managed to type a few phrases into Notepad to Google afterwards. They were, complete with their very simplified Google'd meanings, as follows:
No metastatic disease - Turns out a metastatic cancer is the bad kind, the one that can spread. I apparently show no signs of metastatic disease. I'm going with that being a good thing.
Raised tumour markers - When the body notices cancers, it produces chemicals that can be detected in blood. These are called raised tumour markers, and the fact I do have them means it was indeed cancer and not just a big cyst or something. Yuck.
Completely abscised - Turns out abscision is just another term for "cut out". If my tumour was completely cut out, that means there's no more in there. Hooray.
So this is all just uh.. based on a very hurried phonecall, but hopefully I'm in the clear. I'll find out for sure on Wednesday. I still have to go to Northampton on Thursday. It's still very possible they will recommend radio or even chemo therapy, I'll just have to wait and see.
But hopefully it'll be fine.
So, I have my appointment with the urologist Mr Andrews on Wednesday. I already knew about that one, the hospital has confirmed the appointment no less than three times.
But today, Monday, I got a call from Northampton General Hospital asking me to attend the oncology department on Thursday. I say that's fine, but ask why and who set it up. The lady tells me it's with a Dr Falst, who I've been referred to by Mr Andrews. I tell her I haven't even seen Mr Andrews yet, but she tells me that's fine and that I still need to attend that appointment too.
So I get off the phone and think for a minute. Back before my surgery, I saw a Mr Choudhary, who discussed the procedure with me, asked about my implant preferences, etc. He told me about what would happen post-surgery - that I would have a follow up meeting, and then decide if I need further treatment (radiotherapy, chemo, etc). He told me if I did need either of those, that they would be done at Northampton General Hospital.
So my mind was racing at that point. Has Mr Andrews looked at my scan results and found out I need follow up treatment? Am I going to have to get chemo after all? I talked to Megan who agreed that it was kind of worrying. I went downstairs and told my mum, and she said it would probably all be fine, they probably just want a chat, but that I should phone my doctor and ask what was going on.
So I phoned my GP and the receptionist answered. I explained my case in a rather confusing and panicy way. She got a little confused, but eventually we got to the point. They hadn't sent anything to the hospital for over a week, and hadn't heard anything new. She suggested I phone MK hospital, which I did.
I was put through to Mr Andrews secretary, who confirmed I had been referred to Northampton, but was shocked that I hand't been told. Apparently this usually happens post-consultation, not before. She told me my case was discussed in a meeting last Tuesday, and then Mr Choudhary had dictated a letter to be sent to Northampton that Wednesday. They'd now received it, and have booked me in.
I asked why I'd been referred, and she told me it was a normal part of procedure. She told me all radical orchiectomy patients were referred to Northampton for further care. She started reading from either the letter to Northampton or directly from my file, and I managed to type a few phrases into Notepad to Google afterwards. They were, complete with their very simplified Google'd meanings, as follows:
No metastatic disease - Turns out a metastatic cancer is the bad kind, the one that can spread. I apparently show no signs of metastatic disease. I'm going with that being a good thing.
Raised tumour markers - When the body notices cancers, it produces chemicals that can be detected in blood. These are called raised tumour markers, and the fact I do have them means it was indeed cancer and not just a big cyst or something. Yuck.
Completely abscised - Turns out abscision is just another term for "cut out". If my tumour was completely cut out, that means there's no more in there. Hooray.
So this is all just uh.. based on a very hurried phonecall, but hopefully I'm in the clear. I'll find out for sure on Wednesday. I still have to go to Northampton on Thursday. It's still very possible they will recommend radio or even chemo therapy, I'll just have to wait and see.
But hopefully it'll be fine.
Thursday, October 6, 2011
Month 2
I haven't been posting much, but I feel like there isn't much to say. Officially, things are still the same, I'm still waiting for my appointment with the urologist to discuss my future and the results of my scan. That's been booked now, for next Wednesday, the 12th of October. At that point Mr Andrews will let me know if the cancer was malignant or benign, and if it has spread further. He'll recommend either chemo, radiotherapy or neither, and he'll hopefully tell me when my next scan will be too. Lots more will be revealed on Wednesday.
That's really why I haven't been posting. I feel that if I have no news, I have nothing to say. I read other's blogs sometimes and they are usually centered around events or how people feel about events, and since I have no events to share, that leaves me with feelings. And I'm not very good with feelings.
I have no idea how I really feel about myself or these circumstances at the moment. I change from happy to sad for no reason, I'm occasionally horny but often have no sex drive at all (too much info, but it's kind of a key thing with the type of cancer I had), I feel like pigging out way too often, but mostly I have a horrible sense of dread. What if it has spread? What if I am that one out of ten that gets bad news from their scan? Someone has to be that guy. If nobody was that guy, it would be ten out of ten, not nine. What if it's me?
I know it's pointless freaking out about something you aren't even sure about, and if it wasn't me going through it I would be telling myself that. But I can't shake the feeling that things are still wrong. I just wish I knew why.
Maybe it almost feels too easy, so far? While I did have to abandon my life and flee back to the UK, it seems a small price to pay compared to what I thought of cancer before this. I thought cancer was this life destroying disease, not something you might get sorted in one operation. Or maybe I'm just being pessimistic? I always have been, and it seems that sometimes if something else could go wrong, it will.
Or maybe it's something more physical. Before the operation, back in the olden days when I still had both testicles (ah, memories), it was very obvious that one was fine and one was not. I could compare. I had a control group, I had a test subject, old lefty was what I based old righty's poor condition off of. Now, I have one that I am praying is fine, and one fake implant that feels nothing like the real thing. I feel the one I have left and wonder to myself, "is that what it is supposed to feel like?". I worry that it's not. But I can only wait 'til next Wednesday. Fun.
I have a horrid habit of playing out what-if scenarios in my head. I guess most people do this, but mine are always tainted by my pessimism. I think to myself, what if it's spread. What if I lose the other testicle, how much will that affect my life? And I realise it will affect it quite a lot.
Just a warning, this may get a little uh.. personal, here, but I need to write it down at some point. I forsee my future self as being quite a family man. Having a boring 9-5 job in a cubicle somewhere in the USA doesn't bother me, so long as I have a family to provide for. Before I met Megan, I didn't know how much I wanted it, but now it turns out I really do. The idea that, while it will still be possible in this horrible maybe-future, won't seem.. right, is just terrifying. I don't know what I'd do. I don't know how I'd react. I wouldn't be able to do it myself, nor would I have the sex drive to do it myself without chemical hormones.
Everything would be test tubes and expenses. Megan would have to be over here if we went that route, and the sperm bank only freezes my stuff for 3 years (with possible extension, but still). Just lots of stuff to worry about if that is how it turns out.
If. I hate ifs. I can't plan around ifs. I'm sick of ifs.
Oh, and also, my old cat died today. RIP Taz, I'm sure I'll accidentally say your name about 12,000 times in the next two or so weeks and feel sad every time I do so.
That's really why I haven't been posting. I feel that if I have no news, I have nothing to say. I read other's blogs sometimes and they are usually centered around events or how people feel about events, and since I have no events to share, that leaves me with feelings. And I'm not very good with feelings.
I have no idea how I really feel about myself or these circumstances at the moment. I change from happy to sad for no reason, I'm occasionally horny but often have no sex drive at all (too much info, but it's kind of a key thing with the type of cancer I had), I feel like pigging out way too often, but mostly I have a horrible sense of dread. What if it has spread? What if I am that one out of ten that gets bad news from their scan? Someone has to be that guy. If nobody was that guy, it would be ten out of ten, not nine. What if it's me?
I know it's pointless freaking out about something you aren't even sure about, and if it wasn't me going through it I would be telling myself that. But I can't shake the feeling that things are still wrong. I just wish I knew why.
Maybe it almost feels too easy, so far? While I did have to abandon my life and flee back to the UK, it seems a small price to pay compared to what I thought of cancer before this. I thought cancer was this life destroying disease, not something you might get sorted in one operation. Or maybe I'm just being pessimistic? I always have been, and it seems that sometimes if something else could go wrong, it will.
Or maybe it's something more physical. Before the operation, back in the olden days when I still had both testicles (ah, memories), it was very obvious that one was fine and one was not. I could compare. I had a control group, I had a test subject, old lefty was what I based old righty's poor condition off of. Now, I have one that I am praying is fine, and one fake implant that feels nothing like the real thing. I feel the one I have left and wonder to myself, "is that what it is supposed to feel like?". I worry that it's not. But I can only wait 'til next Wednesday. Fun.
I have a horrid habit of playing out what-if scenarios in my head. I guess most people do this, but mine are always tainted by my pessimism. I think to myself, what if it's spread. What if I lose the other testicle, how much will that affect my life? And I realise it will affect it quite a lot.
Just a warning, this may get a little uh.. personal, here, but I need to write it down at some point. I forsee my future self as being quite a family man. Having a boring 9-5 job in a cubicle somewhere in the USA doesn't bother me, so long as I have a family to provide for. Before I met Megan, I didn't know how much I wanted it, but now it turns out I really do. The idea that, while it will still be possible in this horrible maybe-future, won't seem.. right, is just terrifying. I don't know what I'd do. I don't know how I'd react. I wouldn't be able to do it myself, nor would I have the sex drive to do it myself without chemical hormones.
Everything would be test tubes and expenses. Megan would have to be over here if we went that route, and the sperm bank only freezes my stuff for 3 years (with possible extension, but still). Just lots of stuff to worry about if that is how it turns out.
If. I hate ifs. I can't plan around ifs. I'm sick of ifs.
Oh, and also, my old cat died today. RIP Taz, I'm sure I'll accidentally say your name about 12,000 times in the next two or so weeks and feel sad every time I do so.
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