The Most Painless Trip

I think I had the least painful trip to Oxford that I could have possibly had, today.

We got there a few minutes late - despite learning the route, you still can't account for traffic, etc - but the receptionist told me the clinic was probably behind anyway, so I took a seat.

Within a minute I was being called in (compared to the normal 20-40 min wait) and within 5 minutes of going through, the doctor came in. Wowzers.

We had a chat.. partly about how I'd been coping, and partly about my imminent departure back to the USA. He said as far as the cancer went, I had no reason to worry - he asked if my shaving patterns, libido, weight etc had all stabilized, and I told him yes - he even remarked on how much weight I'd lost since coming in last (all good weight loss: been trying really hard for the past month). He also suggested we make another appointment for June, and if I'm still in the country, to come by for more surveillance. If not, he'll pass all the info to whoever in the USA needs it.. not sure who that would be, but we'll see.

After that, I just had to give blood again (mum took a waiting number ticket thing, and I came out just before it was called! The phlebotomist took blood on her first try - a first, for me, ever!), and have a chest x-ray (5 minute wait, then the x-ray took about 12 seconds), then I was gone. And a nice sunny day to go for a drive, too.

So all in all, I'm happy with the way things are going. Our visa petition got approved, and we'll get the interview booked soon. I'm down 23lbs on when I started, and I'm making the most of the sunny weather and going for almost-daily walks. My Canadian uncle is visiting soon, so hopefully I'll get to see most of the family together before I leave the UK again.

I'd say things are going pretty well.

But not so well that something ironically bad has to happen, okay, fate? Good.

The Most Valuable Hemoglobin

Oh what fun Oxford was yesterday.

Went back there at about 12:30pm to speak to Dr Protheroe (I finally learned his name!), get the results of last week's CT scan, and get more blood taken. More blood! BLOOD!

The scan results were clear - no regrowths, nothing out of the ordinary at all. I relayed a few fears and problems I've been having since my last checkup (nothing major, and the doctor informed me they were indeed nothing to worry about - apparently remaining testicles and scar lines can hurt for months if not years after testicle removal surgery! Who knew?!), and we just chatted about my health for a while.

I even mentioned this blog to him, and he's given me the email address of his secretary to send it to. Maybe they can use it to help other guys in my situation. Who knows.

He ended the session by telling me to go get more blood drawn, so I left the doctor's office and drew a ticket for the phlebotomist. From one of those ticket machines you get at old butcher counters, or government buildings. Kinda surreal.

After waiting 40 minutes, I trundled in to the phlebotomist room. She knew what she was doing, but still managed to fail twice, once on each arm. Kinda getting sick of my veins. And the best part is: apparently phlebotomists can only try twice before they have to refer you to someone else. Unfortunately, there were no other phlebotomists on call yesterday, so I got sent back to the doctor.

Who, of course, had gone home by then. So I got sent through to the day clinic. Oh, Oxford's day clinic. What a fun place you are. A huge ward full of sick people on beds, in chairs, wandering around, shuffling and limping. I was sitting next to a nice old lady that was getting her last round of chemo, right there while we were talking. Again, surreal.

I get sat down, a heat pack shoved on my arm, and told to wait. After another 40 minutes of waiting, a nice nurse (or head matron? I don't know the terminology, but all the other nurses were asking her questions) came and took the blood (3 vials!) from a different vein immediately. By then the heat pack had gone cold, but that didn't seem to matter.

We were finally free to leave at about 3:30pm. We had plans to go to the covered market on high street, since it's Megan's last trip to Oxford. As we were getting there, the place was closing, but we still managed to grab something to eat at Pie Minister and looked around some of the shops.

So that was my day yesterday. I have to go back to Oxford again around the end of March for another Xray. And more bloods. I wonder if someone can pull out a waiting ticket for me now..?

Surveillance

Hello blog, it's been a while. About 3 months and 1 week, really. That's a while. I realize the end of January is not November, but honestly..

.. there's not much to report on, really. No bad news. No good news, but no news is good news, so that's good. News.

I'm currently what the hospital calls "Under Surveillance" which is basically me checking in every few months and having a scan or a blood test to make sure nothing evil and sneaky is trying to regrow anywhere. So far, so good.

I did go to Oxford in November, and again yesterday. In November I had a blood test and another chat with the doctor, along with a quick chest X-Ray. Both tests came back fine, and the talk was over quickly. I received a letter after that chat, just like I did after the first one, summing up what we discussed.

I also had a chat with Gemma, a.. possibly nurse, I don't really know her job title.. about the NHS website. They asked me, when I first went there, to check it out, try using the help files and let them know how it went when I went back.

When I told them, Gemma took down my bug reports (some of the "I survived!" stories were broken, things were in weird orders, etc) and seemed genuinely thankful I'd taken my time to check. Didn't learn anything new from the help files, but that's to be expected at this point.

Had another appointment for earlier this month for a CT scan and a chat, but when I phoned on the day to confirm my scan time.. they told me the scan was a week earlier, and that I didn't turn up. When I informed them that I did not know about the scan, they confirmed they sent out a letter on the 14th of December.

Maybe it went to Santa, instead. I'm not sure.

Regardless, they rebooked the scan for yesterday, the 25th, with another check up on the 30th to discuss the results (and take yet more blood!). I attended yesterday and it went fine (I didn't receive a letter for that appointment, either) and I was out after a few hours.

As mentioned, we're going back on Monday the 30th to discuss the results. We're going to try to make a day of it and visit Oxford's covered market while we are there. Oxford's a very busy, clustered place. I think I've learned that I don't want to live in a big old city.

While there, I'm going to mention this blog to the doctor, or maybe to Gemma. I wonder if they'd be interested in using parts of it in their help files. I'm not sure where they get their "I survived" stories from, but they only had a choice of 2 when I looked, so another one might be good for them. We'll see.

So, how have I been since November? Alright. Coping. Happy that the cancer itself is gone, but still annoyed by it's after-effects, both physical and otherwise. The fact my life has been on hold for yet another 6 months with still no end to the waiting in sight is annoying. The fact that my wife has to return to the USA in a month and I'll have yet another part of my life without her is annoying.

But still, one thing I am thankful for: an annoying life is much better than no life.

Aftermath

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.

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.

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!

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.