Pretty much what the title says. I was first diagnosed with Sarcoma in February 2018, had radiotherapy and surgery to remove the tumour. Then it came back in May 2019, I was told it was incruable and I had 2-3 years left if I was lucky. Since then I've had chemotherapy and it was stable for a year. It has since started growing again and I am now taking part in a gene therapy trial.

Edit: wow this blew up, thanks to you all for your questions! A few points that might be important.

I have a wife and 7 month old. I am physically well and mostly symptom free.

Edit 2: wow, I'm trying to keep up with all the questions, there are some excellent ones for sure! One thing that is cropping up is regrets. I am very happy with my life so don't have any major regrets. I never grew a proper beard or moustache, but I'm doing that now, much to my wife's annoyance!

Edit 3: I live in London and in the UK we have free healthcare so haven't had an issue with cost. I cannot believe how tough it would be to have cancer and worry about funding treatment

Edit 4: thank you all so much for your kindness and insightful questions and thanks for the awards.

Edit 5: I'm amazed at the response to this. I was expecting maybe a few dozen questions if I was lucky but wow. I've since been to sleep and woken up and answered more questions. I think I've answered them all. There has been some overlap, so if I didn't reply to you, check and I've probably answered it before.

I'm going to call it a day now but thank you all so much for your insightful questions. If you're still interested or have something to ask, feel free to DM me.

The last thing I'll say is a few people have asked about what advice I would have to give others, the main things would be:

1) be kind, you don't know what people are going through and kindness to a stranger benefits everyone

2) find what and who you love and don't let go. Try lots of different things to see what you enjoy and run with it. Enjoy your life.

Peace out!

Comments: 1228 • Responses: 104  • Date: 

-Nitrous-1462 karma

As a nurse, how can I make it easier for yourself and people in your situation? What’s tacky and what actually helps?

parkerpencarkeys1496 karma

Honestly, being friendly. I'm a relatively optimistic guy and come in to most treatment/appointments with a smile one and it's nice when the nurses respond in kind. I don't want pity, just a genuine conversation about how I'm doing etc. Also honesty, often people try to change conversations but I feel I can be frank with the nurses and say when I'm feeling awful and they're happy to chat and not try to change the subject. And I must say all the nurses I've been treated by have been great at this.

Devilpuppet168 karma

The whole “not pity, but conversation” stuff also works when being cured from cancer (or probably any life-changing disease)! My family has until now never REALLY asked how I am and was doing, it’s like they rather pretend it never happened, because I have expressed I don’t want pity.

They don’t seem to understand that I can’t just throw the subject of cancer on the table when eating breakfast, whenever I say that we never talked about me being sick. They’re always like “if you want to talk about it, why don’t you?”.

It’s hard not being understood. Good luck throughout your treatment! I hope they find something that will pause it or put it in remission.

skankyfish65 karma

I feel this. I had a (very small, early stage) carcinoma removed from my mouth last year. My instinct was to talk about it a fair bit but also to be very breezy about it, because the only treatment I needed was surgery. But it was still cancer, and I have permanent changes to the way I eat and talk, so it's very much part of my every day experience. It's a very different experience to someone with terminal disease, and to most people that seems to mean that it's over now. They've forgotten, because they're very overwhelmed with the shit show that the last year has been.

I don't have much of a point, other than to offer some empathy and a "me too".

parkerpencarkeys54 karma

I totally get what you mean. After my surgery I was pretty complacent, like, it's gone, hey let's not worry about it! But it still affected me as I had a big chunk out of my leg!

zoinks548 karma

How did you initially discover you had sarcoma? Were you having symptoms or was it just found during some other routine check?

parkerpencarkeys716 karma

I woke up one day and had a big lump in my leg. It was bizzare, like a swelling. At first thats what my doctor thought it was, an ultrasound and MRI later showed what it was. Other than that I had no symptoms. I guess thinking back maybe I had a numb ankle from where it may have been pressing on a nerve but can't say for sure. They don't know how long it had been there but my the time we found it, it was roughly 500ml in volume!

hellahater37 karma

Where on your leg was it if you don’t mind me asking?

parkerpencarkeys81 karma

It was my right leg just above the knee in the thigh. So originally they thought it was a knee swelling

Zeikos39 karma

I'm curious, given that it's on the leg is amputation not an option? Sure, avoiding it unless absolutely necessary to save your life makes sense, but why did they tell you that you have 2-3 years?

parkerpencarkeys262 karma

So amputation was an option but my surgeon said 'why waste a good leg' they were able to remove the tumour and a good area around it so there was no positive margins. Essentially, no cancer left in the leg. When it came back it was no longer in the leg.

With this type of cancer there was no difference in survival rates between amputation and simply removing the tumour. If it was to come back, it's because it had already spread but just not been picked up by scans as it was so small. It was described to me that it's the case that little cancer cells could be whizzing round already regardless of whether or not they cut off my leg.

xsairon17 karma

Just wondering, would going throught "preemptive" chemo help cleaning out any spread of cancer in case there is? Or does chemo just attack the big masses?

parkerpencarkeys39 karma

I did wonder about this but it seems if it has spread that's it pretty much. Chemo does a good job at attacking not just the masses but it can't mop it all up if that makes sense. So I think they don't go for chemo unless they need to

lumpyspaceemily354 karma

What does the gene therapy trial entail? Good luck!!

parkerpencarkeys947 karma

It's pretty intense but the long and short of it is: 1) they harvest my t cells through a process called aphoresis. Essentially a tube in a vein going in to a fancy machine and I sat a waited for a few hours. 2) some very clever people genetically modify my t cells to target a specific protein in the cancer 3) I have chemo to destroy my immune system 4) they put the cells back in me 5) hope for the best

nayhru431 karma

This sounds like CAR-T therapy! Correct me if I'm wrong, I don't know what it's called in adults, but we use this in some end-stage pediatric cancer patients.

Just like you said, we harvest the good white blood cells, "beef" them up using lab technology (takes about a few months), and give them back. Take my experiences with a grain of salt but these kids do SO well since their body recognizes the cells as "self." It's heartbreaking to see what chemo does but know it's necessary, but since this therapy is biological it's much more gentle on the immune system.

I am so happy you are able to take part in that study. I've seen many positive outcomes, though I do have to add that no, it is not a cure. But it really adds some quality time off chemo. I really wish you all the best. :)

parkerpencarkeys314 karma

Yes that's right! I'm being treated by the CAR-T team.

RedheadedManc133 karma

I’m an Oncology nurse. We’ve just started CAR-T therapy at my hospital. Good luck with your treatment ♥️

parkerpencarkeys78 karma

Sweet, you rock!

KnuckleSangwich38 karma

There is hope, hang in there!

My 10 y/o son just completed two rounds of CAR-T in 2019 to treat his leukemia (ALL) which has relapsed multiple times. His specific therapeutic was Kymriah.

The CAR-T cells did not last nearly as long as they would have liked, and technically by protocol both of his treatments “failed”, however, he is still in remission 15+ months later, which is the longest he’s ever been in remission. Just making the point that this is all very new and not to be discouraged if the treatment doesn’t specifically conform to protocol. It might still do the trick. Wishing you the best of outcomes!

We actually just came back from Disney World and Universal yesterday, thanks to CAR-T and his doctors. This might not have been possible otherwise 🙌

parkerpencarkeys11 karma

That's amazing! All my best wishes to you and your son! The things the medical professionals can do it's truly astounding

angry_sprinkles71 karma

I was about to say I work in allied health adult oncology in social work stuff and this sounds like CAR-T Therapy! My patients always talk about how amazing the science of it is :)

parkerpencarkeys76 karma

It is proper amazing, sounds like the sort of thing you'd read about but think it doesn't actually happen as it's very futuristic!

CaulkingHoles48 karma

My sister had stage 4 cancer lymphoma and had the same treatment. She has been in remission for over 5 years. Obviously different types of cancer, but they told her at the time it was a long shot she live past 5 years. Stay positive!

parkerpencarkeys29 karma

That's great news for your sister, send her my well wishes!

Molly-Millions31 karma

How long do they think it will take to see results after they inject you with the genetically modified cells?

parkerpencarkeys83 karma

I'll be having follow up scans every few weeks or so to see the progress. Hopefully things happen quickly, theoretically it should see a change as the cells should attack the cancer pretty much immediately. How long they work for is another thing.

It's all very experimental, I'm not sure of the number undergoing this, but I'm the second in the main sarcoma centre in the UK. The trial is also in America and some other places in Europe I think.

WolfFaceKillah203 karma

How has being given a prognosis at a young age affected your view on life and death? I’m not much older than you, and I can’t help but wonder how to conceptualize such an ever-present menace to my being.

Thank your courage to share your experience with us and any insights you can share. I hope you have a support system of loved ones close to you.

parkerpencarkeys474 karma

When I was a child I was terrified of death, like staying awake at night thinking about it terrified. But now I've accepted it. Like it's going to happen and there's nothing we can do about it. I'm more sad about missing out on things. Like who knows how much I'll see if my son's life. That makes me sad, but the actual concept of death doesn't worry me so much. It's so hard to actually grasp though, like what is it?

To me it's probably just nothingness. But what even is that. The best way I can think about nothing is what is beyond your vision, it's not 'black' behind your head, it's just, nothing. But who knows maybe there's something or maybe when you die your brain goes in to over drive and you have crazy dreams for what seems like an eternity?!

ButterbeansInABottle49 karma

Man, what if when you die you wake up 16 years old in the year 2850 or some shit and your friend removes your vr helmet and is like "so how was it dude? How long did you live?"

parkerpencarkeys61 karma

I'm genuinely not dismissive of the simulation theory

VerisimilarPLS182 karma

How do you stay positive mentally?

parkerpencarkeys451 karma

Tbh I have down moments of course but generally I'm happy. I love my life, I've got an amazing wife and son, great friends and day to day I have a good time! I eat good food, watch good movies and enjoy my life as much as anyone else. I don't dwell, no point in that!

kidhockey5217 karma

Fuck dude you are just built different than me. I’m 26 and have a tough time staying happy and honestly my life is good. Crazy how a post online can inspire me but you have inspired me to try and be more positive. I wish you all the best man.

parkerpencarkeys10 karma

Thanks man, try different things and find what you love, that's the best advice I can give

orincoro-114 karma

Why would you stay positive?

VerisimilarPLS34 karma

It helps the remaining time less miserable. Honestly I've given up on staying positive ever since my leukemia relapsed, but if I could stay positive, I would.

parkerpencarkeys23 karma

Sorry to hear that bud, don't give up on happiness though! Try to enjoy your life!

bakedheptapod152 karma

What’s the advice you know now that you wish you could have told yourself when you were first diagnosed in 2018?

parkerpencarkeys280 karma

It's ok to feel crappy. And I mean crappy as in sad and as in unwell. When I have treatment I always get a but depressed. Not because of the cancer but because I feel too crap to do much and then I feel guilty. Like not being able to cook or help out but just lying on the sofa makes me feel useless. But that's ok, and it will pass and you will feel better soon.

It's kinda like yknow when you have a blocked nose and you forget what it's like to breathe normally? It's like that but feeling exhausted all the time.

R1verS0ng59 karma

This is so important. It took me YEARS to come to terms with this with my medical issues. Raising my daughter as a single mom (I now have an incredible partner of almost 10 years) I was way too hard on myself and pushed myself way past my limits regularly. It only made things worse. I'm sure part of has to do with my daughter being a teen now but as I got older realized I could slow down, I didn't need to feel guilty for having some days where I couldn't cook dinner or clean the house. Thanks for taking the time to do this AMA, I feel I learn so much reading through these!

parkerpencarkeys24 karma

I'm glad your feeling better now! It definitely takes time to realise you can lie on your butt doing nothing to get better. And no one is judging you, you've got to take care of yourself, you're not being lazy! But it's a hard thought to shake.

alexander_london119 karma

My sister is in the same position but she's 31 and it's metastatic breast. What can we do to help her? What have friends and family done that has made this experience easier for you? Sending you my deepest compassions & thanks for jumping on reddit to spend some time with us!

parkerpencarkeys165 karma

I'm sorry to hear about your sister, I hope she's dealing with it as well as she can.

I would say the best thing is to not let it define her. She's your sister first, and keep that in mind. I don't want my friends and family to think of me as 'the guy with cancer'. One of the first things I said to people when I was diagnosed was not to treat me any differently. Obviously still ask how I'm doing etc. But don't dwell on it and don't let it define me.

And just be there for her, if she wants to talk about it, let her. If not, then that's also fine. If she just wants to hang out, or talk as if nothing is wrong then that's also good. Let her lead I guess. I hope that helps!

ZackMorningside101 karma

How are you doing bud? Like ignoring the crazy stuff. Just you know, how are things otherwise?

parkerpencarkeys144 karma

Thanks for asking! Day to day I would say I'm pretty good. I enjoy spending time with my wife and son. We had a fantastic wedding, amazing honeymoon in new Zealand and I still enjoy life, eating (a big part of my life), watching films, just sitting and relaxing on the sofa with my wife. Yeah I get down sometimes, but mostly I have a good time if I'm honest. And having a 7 month old we're pretty busy! Covid has been a bit rubbish as haven't been able to see friends as much as I'd like.

DanosHermanos91 karma

Do you think life is unfair, or is it our perception of what life should be?

parkerpencarkeys296 karma

My wife asks me this. She asks if I think 'why me?' but oddly I don't. I've lived a really good life. Sure I'd rather not die anytime soon. But I've experienced loads, travelled lots, eaten lots. I guess it is unfair but I don't think there's any reason to anything (not in a bleak way mind you) I think things just happen and yeah I got unlucky. We all die and I guess I'm just going sooner rather than later.

shelly12345678113 karma

Your deep love of food makes me smile :)

parkerpencarkeys115 karma

It is one of my main loves! I love cooking and I love tasting things. Luckily, living in London I am able to try so much different food. I'm looking forward to covid being over and eating out again!

Silver-pony48 karma

Have you thought about having a child. Will that be unethical since you know, your ultimately going to perish? Sorry if that came out harsh

parkerpencarkeys51 karma

I can see why your getting downvoted but it's an interesting point. I do have a 7 month old and we decided to have him after knowing it was incurable. I know my wife will do an amazing job looking after him though. And hopefully with my pretty good pension they'll be ok financially. It it does make me sad to think he will grow up without me

ranomaly24 karma

Make some videos, at least 18 different ones, where you have a dad and son convo and wish him happy birthday. You might not get to see him grow up, but you can still be there.

parkerpencarkeys28 karma

I'm definitely planning on doing something like this. It'll be hard, but worth it I'm sure

Borigh12 karma

They don't have to be profound. Just so he knows who you are and how you think about things. What books do you love, which ones are overrated, which movie adaptations are great, which are rubbish.

I'm sure his mother can impart loads of wisdom: just tell him who you are. And in the effort, you'll end up making absolutely priceless documents for future archaeologists.

parkerpencarkeys18 karma

Yeah I think I'll be myself, any attempt at being profound and I'll end up looking foolish. It'll likely be me telling him why lord of the rings is so good for a couple of hours!

2020ismine77 karma

I'm so emotionally weak I'm literally crying imagine your situation My aunt died from breast cancer 3 months ago I hope you will be all okay , your treatment will be successful I'm sending you positive vibes and lods of love. Fuck cancer

parkerpencarkeys14 karma

Im sorry to hear about your aunt. Hope you and your family are well. And crying isn't weakness, it's an important way of processing emotions. I watched inside out the other day and was bawling!

Slickbock38 karma

My little sister has been diagnosed with Sarcoma on Christmas eve. Initially there was just a tumour in her stomach but after scans it has been living in her for months. What can I do to make her life better? She's mid way through radiotherapy, is there anything I can buy? Or any resources I can use to figure all this out?

parkerpencarkeys46 karma

I'm sorry to hear about your sister, I hope she's coping well. As for things to buy, I can't think right now what things helped the most. Comfy clothes were a godsend! And a little fan was useful. Some sensitive creams for the radiotherapy were also useful to help soothe it. Macmillan has loads of excellent resources that might be able to help

Doomaga37 karma

I have health anxiety, and from reading your comments feel like I worry about my health more than you do which is actually stupid.

I dont feel like I'm specifically scared of dying, but getting some illness and feeling like shit for years as I die is what actually worries me.

Do you have any advice for someone like me? I spend so much time worrying if this spot/lump/cough/rash I just developed is actually serious.

parkerpencarkeys23 karma

I would say if you have a lump definitely get it checked. Part of worry comes from not checking but obsessing and not actually talking to the people who can help you!

Get to know your body as well, learn what feels normal. If something persists or is totally out of the ordinary get it checked.

BuildEraseReplace37 karma

I'm the same age. I regularly get a bit disillusioned with how things are going in my life, even though I know I should be grateful for what I have.

I imagine you've had to deal with a reality I could never imagine, problems that might make mine seem like a stubbed toe or a rainy day.

What are your thoughts on life? How do you keep it all in perspective? What helps you get out of bed?

parkerpencarkeys40 karma

Generally I enjoy things. Find things you love to do and people you like to spend time with. What gets me out of bed is pretty much everything! I enjoy spending time with my family and friends, food, movies, TV, anything. Wallowing does little good.

I think the main thing is find things you enjoy doing, then you'll want to do them. No point in doing stuff for the sake of doing it because you feel you should. It's a cliche, but live your best life!

QUOKKI1335 karma

How did you react when they told you that you had incurable cancer?

parkerpencarkeys129 karma

I felt the blood drain from my face and just held my head in my hands. It was an instant and visceral reaction. After a few minutes I calmed down and was able to talk about it and discuss ways forward with my doctor and family. It was a truly horrible experience, one of the worst experiences since the whole thing started.

GrayNights21 karma

How do you think about life now? Do you regret not savoring the times in the past, or are you currently just enjoying the time you have left? Also, Fuck cancer!

parkerpencarkeys48 karma

I would say I'm enjoying the times I have now. I don't have many regrets if I'm honest, I've lived a pretty good life and like trying lots of things. Also oddly I have a terrible memory so I'm kind of forced to live in the present! But definitely try to make the most of what I've gotm for example, before chemo I was told it could affect my taste buds (and I love eating) so that was a worry. My wife and I went to some amazing restaurants, spent waaay too much money but heck, it was worth it! Taste did go during the chemo but luckily only for a week or so each time.

electromatic19 karma

Future palliative care physician here—I wish you all the best from Greece. Have you benefitted from palliative or supportive care? Is it something you have already looked into?

parkerpencarkeys18 karma

I'm slightly confused by the terms, what do you mean in the term palliative? As in dealing with symptoms? So far I'm relatively symptom free. The cancer centre in London I go to has other complimentary therapies like massage and things which has helped.

MedicalJargon-itis24 karma

Palliative Care is a field of medicine focused on symptom management and focuses on the whole patient. It's an interdisciplinary team approach incorporating physicians, nurses, chaplains, and social workers. It's availability is varied in different settings and different countries, but I'd imagine London would have access.

parkerpencarkeys12 karma

Yeah luckily I've had excellent care and have had access to a wide range of support which has been really helpful.

minecraftmedic14 karma

Palliative care is when you've exhausted all treatment options and your illness is getting worse and causing symptoms. Instead of trying to treat the disease they focus on improving symptoms.

e.g. We can't cure your cancer, but you're in pain and short of breath and anxious, so here are some meds and support to help.

Sounds like you haven't needed their support yet. Fingers crossed you get a really good response from your immunotherapy!

parkerpencarkeys7 karma

I'm kind of at that point where they aren't treating to cure but to manage and slow it down. Luckily no symptoms as such yet, but the treatment is delaying that I guess. I did have some symptoms when it was in my back and they treated it with radiotherapy and that solved the back pain

voicedm19 karma

What was it like mentally, knowing that you have cancer? Was it a strain/burden on you? Take care!

parkerpencarkeys33 karma

It's funny because like most people, you never think it'll happen to you. My wife says I'm pretty mentally strong and that I deal with it well. It is a burden and doing the treatment isn't pleasant, but it passes and for the most time I feel well in myself.

And often I don't think about it, I can still do stuff I love without constantly thinking about it.

Shivan_snake18 karma

What is the best advice you could give to unhappy people in general, those who have everything and still don't enjoy their lives?

parkerpencarkeys30 karma

I would say find things you love. Perhaps I'm lucky in the sense that I am generally happy and enjoy lots of things. But yes, if people are unhappy they need to think why. Maybe see someone to talk to or find hobbies that you're passionate about. Try new things, watch a film you wouldn't normally watch, eat something that you normally wouldn't eat and go somewhere you wouldn't normally go. Expand your horizons and you might just find the thing you love.

I never used to think about photography much, but one day I just thought, why not? And bought an old film camera, now it's like my main hobby!

Sixunderground0018 karma

Where do you find your peace?

parkerpencarkeys45 karma

In the things I enjoy. While I'm here I'm gonna be sure to enjoy life. I love my family and friends and I have a load of hobbies which I spend time on. I don't have religion or a belief in a higher power but I get peace in the world and the people in it.

Mickeyyyyy16 karma

What have friends done or should have done to make the burden you have easier to deal with?

parkerpencarkeys23 karma

Honestly, all my friends were excellent, really supportive. The main thing was to not treat me any differently but be there for me when j needed them. And they've all been amazing. Ask me how I'm doing every now and then but don't make it the dominant thing in our relationship

re3dbks16 karma

What are some things you wish non-cancer folks knew about cancer? What are your thoughts on clinical cancer research as a whole? More of it, not enough - or we seem to be progressing at the right speed.

parkerpencarkeys25 karma

I think an important thing is they're all so different, what will work for one type, doesn't work for another. For example even my very specific type of cancer, only 10 percent were eligible for this trial.

Given what I know now I think research is progressing well but I guess more can always be done. This trial wasn't even mentioned earlier on in my diagnosis as it wasn't even known about, but hey, then it popped up! So it seems like things are happening all the time.

meiyiyeap15 karma

I'm sorry you have to deal with this, and I hope gene therapy will work out for you.

I understand that gene therapy is really costly. If you don't mind it, could you share the cost and if that's something that insurance covered? Thank you

parkerpencarkeys40 karma

Luckily I live in the UK and we have free healthcare covered by the NHS. The trial is covered by the research company conducting it too I believe.

sarahjewel13 karma

Hey! Stage 4 Synovial Sarcoma here, well... Formerly. I did the t-cell therapy in July and my tumors are gone! Go to my profile to find my posts about it, if you want.

I didn't read all the comments (literally just woke up haha), what kind of Sarcoma do you have? Where in the treatment process are you now?

parkerpencarkeys8 karma

Hey that's great news, glad it worked for you!

I've got a myxoidliposarcoma. I'm currently waiting to have the t cells put back in, they're going to be infused on Tuesday, wish me luck!

If you don't mind me asking, how did you find the infusion? The chemo sucks but at least I kinda knew what to expect, but the cells are uncharted territory!

1hamidr_12 karma

Friendship. What do you expect from your friends? Do you experience mood swings? Has this affected your relationships?

parkerpencarkeys26 karma

Everyone takes it differently. Ideally I want treat me the same. After my diagnosis, one of my very good friends didn't get in touch for a while which put me out a bit. But I bumped in to his mum in town and she told me he was finding it hard to process. We spoke and now we're closer than ever. I know I'm the one who is going through it but it affects everyone I know differently.

Luckily I haven't experienced mood swings (or if I have, no one has told me about them!)

UncleNate2312 karma

You smoke weed?

parkerpencarkeys22 karma

I used to in university, before diagnosis. I haven't in a while and being in the UK it's not legal. But I have it on my list to try for pain relief etc perhaps when the cancer hurts more. So far I'm pretty symptom free.

cbra0111 karma

Hi, hope your day is pleasant! Can you describe your thoughts on deciding to have a child?

parkerpencarkeys20 karma

My wife and I always wanted a child and so we had one. I was concerned thinking that he will grow up without me but my wife is amazing and I know she will be an amazing mother smand we have a close family and she will be well supported. I also have a good pension which will be able to support them financially. My main concern about bringing a child into the world is with climate change, and the state of the world more so than my illness!

john_dune9 karma

You should record videos of yourself talking about your life and how you think.

I've started doing this as a relatively healthy 34 year old. It's felt really good to share it.

parkerpencarkeys9 karma

I think I'll definitely do that to leave some sort of recording capsule for him

john_dune8 karma

Leave some for the wife as well.

parkerpencarkeys6 karma

Definitely will!

FireflyCaptain10 karma

Would you live your life any differently if you’d known that you’d be in this situation?

parkerpencarkeys13 karma

I don't think so, I don't really have any regrets. And I am happy with where my life is so wouldn't change much. But definitely get checked if you think anything is wrong medically!

sicarius9710 karma

What do you think of the battle metaphors cancer is associated with ?

parkerpencarkeys58 karma

This is a real hot issue it seems. I would say I am relatively anti them. In no way to I feel like I'm in a battle. Like this thing is inevitable. And yeah the treatment sucks and so it can be a 'battle' to get up when I'm feeling drained but in no way am I battling cancer. I don't feel like I've lost a battle. We don't talk about other diseases like this, I think it's largely down to the treatment. We wouldn't say someone lost a 'battle' with the inevitable passing of time and dying of old age. I'm not weak because cancer won, it's bloody cancer!

vietnamese-bitch9 karma

How would you say you have lived life before the diagnosis and after the diagnosis, other than medical related things, what changed?

parkerpencarkeys16 karma

I was always open to doing lots of things but maybe that has increased even more. My wife and I have definitely said 'fuck it why not?' to more things. Usually in the case of spending money on nice food and other stuff. Like, if I want a new pair of shoes, I'm just gonna get them, don't sweat the small stuff.

andrewzorz9 karma

What would you say is the best/worst parts of going through gene therapy, compared to radiotherapy/chemotherapy so far?

I wish you the best and thank you for doing this AMA!

parkerpencarkeys7 karma

The gene therapy involves some chemo so it's similar. I am having the new cells put back in a few days time so maybe I'll have more to say then! But it seems like I'll get a fever and get tired and confused.

Radiotherapy for me was actually ok, I essentially got some sunburn and a bit tired. But chemo is awful and proper knocks it out of you for a week or so.

no_witch_dies8 karma

what sort of things do you spend your time doing or thinking about now that you know it’s pretty limited?

I recently had an overall not too serious preventative kidney surgery a few months ago at the age of 24 and it really made me start to think of my own mortality.

How much of the science in the trial did they explain to you? do you care at all or are you just hoping it cures you?

parkerpencarkeys13 karma

Interesting question, at first I did go through a bit of an existential 'why would I watch mindless TV when I don't have all the time in the world' phase. But then, hey, I like mindless TV now and then! I pretty much just do things I like. But luckily I like quite a lot of things, I cook, watch movies, hang out with friends (online - thanks covid!), spend time with my wife.

They explained a lot to me and gave me a while load of information, a lot of which goes over my head, but I get the gist of it! They said it isn't aiming to be curative but to help slow the progression, how well, we don't know as it's so experimental

I hope your kidneys are ok!

brokecollegekid698 karma

I was 28 when I was diagnosed with cancer — not too far off from you. Also did the surgery, chemo and radiation. Sending you the most positive vibes I can, man! I hope you and your family get the most out of this new trial and your time together! Keep fighting the good fight :)

Also glad to hear your relatively symptom free - That’s outstanding!

As someone working in an oncology company, what are things that you feel would help us better serve you? What do you think of your treatments? Would things like shorter infusions help or more supportive trials? What do you think?

parkerpencarkeys9 karma

Wow sounds like a very similar situation, and to be working in oncology, that's amazing!

I've been very happy with my treatment so far. I think one of the important things is communication and honesty. Like why these certain drugs, how they work and what they hope to achieve. It's hard to explain to a layperson which is the trick. But at every stage, the more informed I was, the more in control and happy about treatment I felt.

SHXO6 karma

Do you have any advice for someone who's struggling to find their place in life?

parkerpencarkeys11 karma

I would say find things you love. Perhaps I'm lucky in the sense that I am generally happy and enjoy lots of things. But yes, if people are unhappy they need to think why. Maybe see someone to talk to or find hobbies that you're passionate about. Try new things, watch a film you wouldn't normally watch, eat something that you normally wouldn't eat and go somewhere you wouldn't normally go. Expand your horizons and you might just find the thing you love.

I never used to think about photography much, but one day I just thought, why not? And bought an old film camera, now it's like my main hobby!

And talk to your friends, if your struggling, talk to them. Everyone I know has been so happy to talk. And being men we often don't do that. But you can almost feel relief from both sides when guys open up and say they're not well or are struggling. Like a weight is off and 'yes we can talk about these things'

bbrown106 karma

Congrats on the family, baby, and generally awesome outlook in an impossible situation. Was your baby planned? I want to be clear—absolutely zero judgment from me on this. Children are a blessing, they’re the absolute best. I am genuinely happy for you, your wife, and your baby that you all get to experience each other for as much time as possible. No doubt in my mind that having a kid has helped you and your family tremendously to experience the best things in life, and no doubt in my mind that your baby is in the best place he or she could possibly be by having you as a dad. Seriously. No doubt about it. I just have absolutely no idea what I would do in a situation like yours or how I could even process the thought of having a baby with a legitimate fear that I wouldn’t be around. Knowing that it’s absolutely for the best is one thing, taking that leap is entirely different.

Happy for you! Going to give my rascals an extra squeeze for you tonight.

Edit: I should have read more. I see your son was planned. Amazing. Amazing courage from you and your wife. I hope you never have doubts about that decision but just wanted to let you know that I don’t. Easy for me to say, I get it. But it’s true. Wishing you and your family the best.

Edit again: Also, dude, having a 7 month old is hard. Wonderful but hard. Little shits!

parkerpencarkeys6 karma

He was definitely planned, die to my treatment we had to have IVF to have him, so that was an intense process! He is such a blessing and I do worry about not being around, but my wife is amazing and I'm sure will love and support him amazingly well. Also I have a good pension which will help them financially. We also have a close family so she'll be well supported. I do worry about the impact of growinf up without me but I'm sure he'll be loved so much.

TheB1GLebowski6 karma

Since you know the time you have left is finite do you think it helps you to enjoy life more now than any other point in your 27 years? Good luck to you.

parkerpencarkeys6 karma

Yeah I definitely enjoyed my previous years but there's a lot more, 'yeah why not' and doing what we want even more!

gaff20496 karma

How has the NHS been during this? In the us the only way forward do you cost is typically to liquidate all assets and use them for cost leaving you broke and only then when you are destitute will you qualify for medical insurance for the poor. If you are employed and can continue to work through all of it you may fare better. At least we don’t have lifetime coverage caps on insurance like we did before the ACA anymore.

parkerpencarkeys14 karma

They have been absolutely incredible. It seems crazy to me that people have to go broke to cover their healthcare. Not once have I had to worry about money funding treatment or anything. And the charity MacMillan has been great and signposting me to accessing other funds and benefits/welfare that I'm entitled too.

drakefrancissir6 karma

Are there any foods that you loved but started to hate during treatments?

parkerpencarkeys12 karma

Luckily not, my taste went a bit funny during chemo to the point that water tasted terrible. But it went back to normal after a week or so. I like pretty much every food, apart from blue cheese, I can never get on with it.

Cynthimon5 karma

With all that you've been through, if you could talk to your younger self again, what would you want to tell yourself?

parkerpencarkeys9 karma

Go for it. If you want to do that thing, do it. And definitely ask out that girl you like!

one_dalmatian5 karma

Thank you for sharing - wish you all the best in this battle.

What is your advice to people?

parkerpencarkeys8 karma

Find what you love doing. Try lots of different things and keep an open mind. Just because you like science doesn't mean you shouldn't try art and vice versa. You never know what you might fall in love with. And eat well! Life is too short for bad food.

william15118865 karma

What did you expect to experience or see for yourself that might not happen anytime soon in your lifetime? Fk Cancer.

parkerpencarkeys17 karma

I thought technology might change more. It seems like yes, we are progressing, but it seems to me like consumer tech getting a bit smaller and faster. Where are all the diverse crazy inventions we were promised in the 90s?!

ankmoody5 karma

were you healthy at the time of your first diagnosis?

parkerpencarkeys3 karma

Yes, completely, I had no symptoms other than the lump. I was/ama bit chubby, but other than that healthy!

poo_finger5 karma

What's your blood type? If I'm a match, I'll donate. DM me.

parkerpencarkeys7 karma

I don't actually know to be honest, thanks for your thoughtfulness but I think I've got all the blood I need covered by the NHS

tony_fappott5 karma

Which sarcoma, specifically?

parkerpencarkeys8 karma

It's metastatic myxoidliposarcoma with round cell component. As they say in the movie 50/50, the more syllables, the worse it is!

secretchuWOWa15 karma

Despite knowing that it is incurable and terminal why have you chosen to put yourself through treatments? I don’t know too much about specific cancer treatments but I do know that a lot of them have horrible side effects with the only benefit being you stop having cancer. But if in your case that won’t happen why are you proceeding with these therapies?

parkerpencarkeys21 karma

Essentially it buys time. I had chemo 6 rounds in three weekly cycles I would feel bad for the first week and pretty much ok for the second two. That essentially bought me a year and was worth it and I would definitely do it again. I have a lot to live for, so feeling crappy for a few weeks is worth months of living.

Great_Palpatine5 karma

Have you read books like Paul Kalanithi's When Breath Becomes Air?

If you have, how do you see them? Do you agree with what they say or do your experiences and outlook on life differ? Have they shaped your impression of life?

Do you plan to write a biography about yourself to leave a legacy behind?

parkerpencarkeys10 karma

I haven't no, but I'll look it up.

I did consider writing up a script or something but I think it'd take too long. I'm now focussing on enjoying more new things than writing down my past. My wife has known me for all my adult life so hopefully bshe can pass on my memories and legacy.

Nateiums4 karma

Where are you your happiest?

parkerpencarkeys10 karma

In the kitchen with my wife and son

dtagliaferri4 karma

Which gene therapy trial?

parkerpencarkeys8 karma

It's called spearhead

SafeRecommendation554 karma

what's are your hobbies as of now?

parkerpencarkeys18 karma

My main hobbies are: dungeons and dragons, film photography, movies, cooking, warhammer

H0tTamalE4 karma

What motivates you to keep trying treatments?

parkerpencarkeys13 karma

I want to keep living. It may well come a point that the treatment seems like too much, I know it gets that way for some people. But for me, so far, as long as I want to keep going and am open to treatment

brodymulligan4 karma

When you sleep, do you remember your dreams? If so - of what do you dream?

parkerpencarkeys4 karma

I do remember my dreams, and I haven't noticed a real difference pre and post diagnosis. They are much the same as other peoples dreams I think.

muppetjones3 karma

That is rough. I can't imagine what that's like. I'm so sorry, and I hope you're able to get successful treatment.

I'm curious if you've had any genetic testing done, such as Foundation One or Tempus? (Those are in the US. I'm not familiar with options available in Europe.) If so, were the results helpful for improving diagnosis or treatment?

Disclosure: I'm a scientist at a genetic testing company. It's my hope that "incurable cancer" will one day be an oxymoron.

parkerpencarkeys3 karma

I've signed up for all my information to be relayed to the human genome (I think that's what it's called) I'm not sure how it will impact treatment etc. Though. But I'm happy to do anything I can to help the science!

my_human_opinion3 karma

how did the diagnosis change the way you live your life? did it?

parkerpencarkeys8 karma

Not a great deal of I'm honest, it made me go for things more than I may have previously, but I've always been open to trying things! I definitely sweat the small stuff less. A lot less worrying and more 'fuck it, why not?'

chriss1613 karma

Is gene therapy a new way to cure cancer? What benefits does it have?

parkerpencarkeys12 karma

As far as I know they don't do it on cancers that are treatable through other means, as it's so experimental. But it seems like it could be the future. Though I have been told that this treatment isn't expected to be curative, but help manage the progress.

I think ultimately it's training your body to fight the cancer which sounds pretty impressive. Unfortunately I don't understand a lot of the science beginfy it, but I'm happy to be the guinea pig!

Yeuph3 karma

What's it like when you're alone, not trying to project strength or wellness socially? Knowing the end is closing in for you.

Those of us likely not facing our death soon are probably familiar on some level with stoic viewpoints or our loved ones that we saw that "died well". But what is your alone human mental state like when confronting the end. Whats the stuff you don't wanna tell people or talk about like?

parkerpencarkeys9 karma

Interesting question. Often I don't feel my stoicness is socially constructed. I'm very open with my friends and wife. But yes I do get upset about it.

I'm worried about death as it is such an unknown. I'm definitely sad that I won't see my son grow up.

skautist3 karma

Hello! I hope you’re doing great today. I have an opinion to ask of you.

I recently had a friend/acquaintance I had known and kept up with since middle school pass away at 19 from Ewing’s Sarcoma. All the terminology they use for this stuff is ‘she never lost the battle, she won, because she is finally free of pain. Cancer never wins.’

This has always bothered me. She’s not here anymore and they keep saying she won. Everyone misses her so badly in the community, nothing about it feels like any kind of victory. How do you feel about this? Hopefully this is not offensive to ask. Sorry bout how long it is.

parkerpencarkeys3 karma

I think terming it the language of a battle is wrong in the first place. I'm not fighting cancer, it's just happening to my body. This is a journey, not a fight.

polskiftw3 karma

Since you have nothing to lose, do you ever consider just saying fuck it and doing risky or even illegal activities? Such as trying hard drugs or robbing a bank or stealing a car. I'm not sure how much energy you have and maybe you physically can't do a lot of that stuff now, but it's always been something I was curious about.

parkerpencarkeys9 karma

I see what you mean, but I want to enjoy the time I have left. Imagine if I robbed a bank and got caught and spent the end of my life dealing with lawyers and prison and stuff! That would be awful! Luckily physically I'm fine!

conmancool2 karma

How do you react when people say things like diet and exercise or herbs and vitamins can cure cancer? And I'm not talking about preventing or increasing quality of life.

parkerpencarkeys2 karma

I kinda just ignore it to be honest, I'll listen to the doctors. I think those things yes, are important but it is dangerous to reject treatment and have herbs and vitamins instead. Im sure it often comes from a good place and based on anecdotes or something they've heard. However if it's people actually selling things as a cure that obviously aren't, that's not cool.

feed-my-brain2 karma

Do you have a history of having lipomas, or did it start as a lipoma?

parkerpencarkeys3 karma

No family history, just bam, myxoidliposarcoma outbid nowhere. They have no idea what causes it

Great_Palpatine2 karma

How have your experiences with healthcare professionals (doctors, nurses, pharmacists, allied health professionals) been like? How have they shaped your view of the medical profession?

parkerpencarkeys5 karma

They have been almost universally positive. The doctors who have been treating me are amazing and are literally the ones that wrote the book on treating this type of cancer. Nurses have all been really supportive and really friendly and knowledgeable.

I am mostly amazed at how intelligent they all are but how they are very honest and also learning every day.

Great_Palpatine2 karma

If you could give your 2019 self some advice, what would it be?

What would you have changed about your life then, if you could?

parkerpencarkeys5 karma

I wouldn't have changed much, the main advice would be that it's ok to feel crappy with treatment and don't push yourself too hard when you're not feeling well.

classic_renarde2 karma

What do you want from other people right now? Support? Commiseration? Pity? To be treated normally? (My dad had liposarcoma and was oddly calm through the whole process but I always wondered)

parkerpencarkeys3 karma

One of the first things I said to people was to treat me normally. I want people to ask how I am etc. but not to wallow or treat me differently.

jam1981 karma

What’s your favorite food? Is there any food you won’t eat?

You seem like a great guy, OP. Best wishes going forward. I hope to be a husband/father like you one day.

parkerpencarkeys2 karma

Thanks man! Great question, favourite food is so hard! I would say as a general rule, pizza or mexican food (sadly living in UK the Mexican food selection isnt great but I try to cook it as best I can). But a favourite dish would be something like scallops with bacon and pea, such a good mix. Or maybe just a good roast chicken with all the trimmings. The only food I don't really like is blue cheese, can't stand it, however much I try!

GoinGoinGon31 karma

What can others do that are (a) kind to you specifically, and (b) from your current perspective, kind to others like you and (c) has your answers to (a) and (b) changed as you navigate your current situation?

Send much peace your way. I wish you well and may you find whatever it is that you seek.

parkerpencarkeys3 karma

I think the main thing is to be honest and don't treat us differently. Cancer doesn't define who I am, sure, it's a big part of my life but it's not my main thing. I'm a friend, husband, father, person who likes food, movies, photography, d&d, and also has cancer. And to be honest, that has stayed pretty consistent throughout.

Criss-Istr1 karma

do you have any regrets?

parkerpencarkeys2 karma

No major ones, growing a moustache now which I never did before!

kangarufus-1 karma

Why aren't any of the cars in Cyberpunk 2077 self-driving?

parkerpencarkeys4 karma

There is delemain, but it is odd that there aren't more self driving cars. That said when you call your car it drives up to you, so are they all self driving?