ok, here goes. after a long long day i have had a few glasses of red wine, so please bear with me.on april 6th 2011 my wife was told "in error" that she had stomach cancer.[long story - but this should have happened in my presence at some later pre-arranged time, but the fact was dropped while i was on childcare duties 30 miles away .. ]given that my wife had previously been to see her GP for 2 years re ongoing stomach issues this came as no real surprise, but still, 2 years is quite a long time to have such concerns.[turned out to be a stomach ulcer that had been left untreated .. resulting in the cancerous growth, but still the advise is that it has not spread beyond the stomach]so after a 3 month stretch of radical chemo, to isolate and focus the growth, the surgeon today removed my wifes stomach, meaning that today is the beginning of a whole new life for us all.so, the question is : are there ILX'r who have been through this process, as i have no idea as to what happens next !how will she be able to digest food etc ?and far more importantly, will red wine be no longer suitable as a method for her to deal with the daily demands of modern life ? oh, and in the spirit of the original thread (i hate cancer) : fuck cancer.
― mark e, Wednesday, 10 August 2011 23:25 (seven years ago) Permalink
as far as i could tell (i looked - honest !) , ile needed a proper 'fuck cancer' thread.
― mark e, Wednesday, 10 August 2011 23:26 (seven years ago) Permalink
=( Best of luck to both of you
― Elderflower Gimcrax Flores (admrl), Wednesday, 10 August 2011 23:26 (seven years ago) Permalink
Oh fuck, I'm so very sorry to hear that. btw there is a 'curse cancer' thread but fuck anyone who holds this thread against you.
― ceci n'est pas une witty dn (Schlafsack), Wednesday, 10 August 2011 23:27 (seven years ago) Permalink
mark e, I am so sorry you and your wife are facing this. I know a few people who have had some or all of their stomach removed, for various reasons - each has certain foods that aren't processed well and so those are avoided, but digestion starts with chewing and nutrients are absorbed in the small intestine. One friend takes an additional enzyme with each meal, but the others eat smaller meals more frequently. They all are able to still enjoy alcohol, though I'm sure that can vary. See if you can find a support group locally or on-line that can help with the questions/concerns you will both be confronting. I wish your wife a rapid return to health and strength.
― Jaq, Wednesday, 10 August 2011 23:52 (seven years ago) Permalink
while i understand and appreciate the concerns, can i just state the following : today is a great great] day.the surgery went well, my wife is ok (as far as i know), and that is a massive, repeat massive thrill-buzz.oh, and while red wine is not the answer to most of our daily stresses it can form part of our occasional parental release .. (i would prefer a very loud listen-n-dance session to kylie, but hey, cant have everythintg ! )
― mark e, Wednesday, 10 August 2011 23:59 (seven years ago) Permalink
others eat smaller meals more frequently. They all are able to still enjoy alcohol, though I'm sure that can vary.
have heard this from others.only time will tell.
― mark e, Thursday, 11 August 2011 00:28 (seven years ago) Permalink
Fuck cancer indeed, so many of my relatives are dead from or are have contracted some form of cancer.
― Super Villains With Drum Machines (MintIce), Thursday, 11 August 2011 13:39 (seven years ago) Permalink
My paternal grandmother had her stomach removed for the same reason back in the 1960s. Although her meal size was reduced, she still very much enjoyed food and drink; one of the first things she taught my brother and me when we used to go and visit as wee lads was how to make a "proper" gin and tonic for her. She lived until she was 90.
I really hope your wife can continue to enjoy life in a similar spirit, and that she's making a fast and full recovery from the op.
― that mustardless plate (Bill A), Wednesday, 17 August 2011 12:01 (seven years ago) Permalink
cheers bill.cant believe that its only 7 days since surgery given that yesterday she was looking so good, and up and walking (aka "thank f*ck for the nhs").and yes, the advise seems to be that she can eat-n-drink whatever. there may be some food types that may cause issue, but hopefully, the main impact will be that meal times will be a lot more relaxed as opposed to gobble-and-go.
― mark e, Wednesday, 17 August 2011 12:06 (seven years ago) Permalink
I guess it must not be too major to have your stomach removed since lots of people get their stomach removed who have a gastric bypass. I mean not too major compared to having your pancreas removed or your colon and getting an ostomy or something. I hope it goes well, I'm sure you will adapt in time and you will be just fine. SOrry to hear it
― I love obscure members of the Athrotheiria mammal genus and... (Latham Green), Wednesday, 17 August 2011 13:34 (seven years ago) Permalink
My grandfather is in the last stage of leukemia. I am trying to keep in mind he had a long and healthy life so far. But given that his life wasn't too great, it's difficult...
― nathom, Friday, 13 January 2012 13:51 (six years ago) Permalink
exactly one year on and shit gets raised to a new level of emotional chaos.
we weren't even able to get away for 7 days for some well deserved family time without a mad midnight 250 mile dash to a&e.
oh, and all the positivity and hope i displayed earlier in this thread proved to be fucking worthless.
outcome post chemo/surgery : stage 4. terminal. no more treatment.
we currently live in waiting rooms dreading the test results.
― mark e, Friday, 6 April 2012 20:47 (six years ago) Permalink
i'm really sorry, mark. my best wishes and support to you and your loved ones. and fuck cancer.
― dayo, Friday, 6 April 2012 21:13 (six years ago) Permalink
mark, I'm so sorry. fuck cancer.
― that mustardless plate (Bill A), Friday, 6 April 2012 22:29 (six years ago) Permalink
I am at a loss for words. I... I wish I could take some of the pain away. Fuck FUCK FUCK cancer. I am so so sorry.
― Nathalie (stevienixed), Saturday, 7 April 2012 13:51 (six years ago) Permalink
How terrible. I wish you love. Fuck cancer.
― World Congress of Itch (Dr Morbius), Saturday, 7 April 2012 14:07 (six years ago) Permalink
Mark, I'm really, really sorry. My best wishes to you and your family.
― God, Music and Romeo and Juliet (DJP), Saturday, 7 April 2012 14:17 (six years ago) Permalink
Echoing the above. Utterly terrible news.
― Ned Raggett, Saturday, 7 April 2012 14:18 (six years ago) Permalink
emsley clan : -1
cancer scoreboard : +1
― mark e, Thursday, 26 April 2012 13:27 (six years ago) Permalink
Mark, I'm so sorry; my condolences to you and your family.
― I'M THAT POSTA, AAAAAAAAAH (DJP), Thursday, 26 April 2012 13:29 (six years ago) Permalink
oh Mark I am so sorry. sending you love and support in this time.
― cosi fan whitford (underrated aerosmith bootlegs I have owned), Thursday, 26 April 2012 13:31 (six years ago) Permalink
echoing the above. my sincere condolences to all of you
― dayo, Thursday, 26 April 2012 13:35 (six years ago) Permalink
A hug and kiss for you, Mark.
― Exile in lolville (Alfred, Lord Sotosyn), Thursday, 26 April 2012 13:37 (six years ago) Permalink
― dayo, Thursday, April 26, 2012 8:35 AM (1 minute ago)
^^^ So sorry, Mark. Fuck cancer.
― improvised explosive advice (WmC), Thursday, 26 April 2012 13:39 (six years ago) Permalink
Sending you love and the tiniest lightening of this burden. I'm so sorry.
― how did I get here? why am I in the whiskey aisle? this is all so (Laurel), Thursday, 26 April 2012 13:40 (six years ago) Permalink
i'm so sorry mark.
― diafiyhm (darraghmac), Thursday, 26 April 2012 13:42 (six years ago) Permalink
Horrible news, very sorry to hear this, good thoughts to you and family Mark.
― ooooiiiioooooooooooooooaaaaaaaaoooooh un - bi - leevable! (LocalGarda), Thursday, 26 April 2012 13:46 (six years ago) Permalink
ta for the wired tlc ..
this just goes to prove that even in this day and age of techno miracles, in the majority of cases, the powers that be really dont have a grasp on this evil disease.
we were told back in december that there was a good chance of 12 months of settled life.
to say the last 4 months have been a living hell of health related shyte would be an understatement.
we have no let up from the hospital/a&e chaos, so in some ways, i'm glad that she is now no longer suffering, but damn, its heavy on those of us left behind.
― mark e, Thursday, 26 April 2012 13:49 (six years ago) Permalink
how horrible, Mark. RIP, & I hope you too are able to find some peace in this.
― Euler, Thursday, 26 April 2012 13:50 (six years ago) Permalink
mark i'm so sorry for you and your family's loss, i hope you all get all the love and support you need
― seapunk run. run punk run! (Noodle Vague), Thursday, 26 April 2012 13:55 (six years ago) Permalink
Oh Mark, I'm so sorry to hear that. Wishing you all the strength in the world over the next few days and weeks.
― btw didn't i braek ur heart (NickB), Thursday, 26 April 2012 13:57 (six years ago) Permalink
That is horrible to hear, take care of yourself, man.
― Andrew Farrell, Thursday, 26 April 2012 13:58 (six years ago) Permalink
Also: fuck cancer.
― Andrew Farrell, Thursday, 26 April 2012 14:06 (six years ago) Permalink
Oh my God. I am so so sorry to read this. I can't imagine how horrible the past year must have been for you. My best wishes go out to you and your family.
― wolf kabob (ENBB), Thursday, 26 April 2012 14:10 (six years ago) Permalink
― Ned Raggett, Thursday, 26 April 2012 14:27 (six years ago) Permalink
mark, I'm very sorry. words on a message board don't do it justice.
I switched oncologists recently, going to the big medical center named after one of the Rockefellers. My new guy is the teacher who taught my two old guys.
We went down the list, talking about the medications I had been given, what my diet could be, drawing a DNA helix on the paper of the examination chair and saying 45 minutes of exercise based on my age x 5 - 2 or something. That last one, "What does running up and down stairs have to do with cancer?" made him literally stroke his beard and say "We don't know. Everything I've told you is basically an educated guess at best."
Now, this guy is pretty educated, but every honest doctor would be the first to tell you that plugging tubes of poison into people's veins and blasting them with radiation is witchcraft at best.
― pplains, Thursday, 26 April 2012 14:51 (six years ago) Permalink
i have an uncle who is a highly qualified doctor in canada - and he basically told me this back last year, so while we were getting the 'we will cure you' story from various folks here, i've been quietly preparing for this outcome due to the insider information from him.
still, doesn't make dealing with the fallout any easier ..
good luck with your battle pplains - you have my heartfelt wishes and hopes for a more successful outcome.
for us, the big reveal was the discovery of an evil lump weeks after the completion of premium grade chemo that she underwent as that confirmed just how aggressive the fucker was.
(uncle confirmed that she got the best that was available .. so no complaints on that score)
― mark e, Thursday, 26 April 2012 15:08 (six years ago) Permalink
Heartfelt condolences, mark. I'm so sorry that things turned out this way.
― that mustardless plate (Bill A), Thursday, 26 April 2012 19:03 (six years ago) Permalink
i'm so very sorry, mark.
― estela, Thursday, 26 April 2012 19:13 (six years ago) Permalink
Found out yesterday that mother in-law likely has pancreatic cancer. She got sick the day after we left for vacation, but apparently her doctor's been all kind of amazing and has run 6 months worth of tests in 2 weeks. From what I understand they think it's still in early stages, and possibly slow-growing though I'm still trying to make sense of everything so I don't exactly know all the details.
the worst part is that her Mum died of cancer when she was quite young, and her brother died of pancreatic cancer a couple of years ago, so it's just like AAAAAGGGGH FUCK YOU CANCER SERIOUSLY
the gallows-humor lighter side is that because of a blocked bile duct she now has a major case of jaundice. She said over the phone that she was pretty green, but when she answered the door mr Veg and I were like, 'Whoa. you weren't kidding.' Wicked Witch of the West level neon green. It's really weird!
We visited with her yesterday - she's very scared, tired, etc, but still very much herself. I love her so much...it just fucks me up that she's dealing with all of this. Ugh!
― Peppermint Patty Hearst (VegemiteGrrl), Monday, 30 April 2012 20:17 (six years ago) Permalink
AAAAAGGGGH FUCK YOU CANCER SERIOUSLY
hope they caught the fucker in time peppermint.
― mark e, Monday, 30 April 2012 20:30 (six years ago) Permalink
I know. I'd like to have her around for a lot longer :)
― Peppermint Patty Hearst (VegemiteGrrl), Monday, 30 April 2012 20:38 (six years ago) Permalink
btw, my condolences to you, mark...a big DOUBLE FUCK YOU CANCER
― Peppermint Patty Hearst (VegemiteGrrl), Monday, 30 April 2012 20:42 (six years ago) Permalink
borderline alcoholism + v. loud music helps.
― mark e, Monday, 30 April 2012 20:48 (six years ago) Permalink
<3 <3 <3
― Peppermint Patty Hearst (VegemiteGrrl), Monday, 30 April 2012 20:58 (six years ago) Permalink
my mother in law was diagnosed with terminal cancer on Friday. Somehow the fucking doctor she has been getting x-rays and cat scans from for the last five years completely missed the huge tumor crushing her heart. My wife had to take an emergency red-eye last night and fortunately made it home before her mom died. now they're waiting for more tests.
fuck you, incompetent doctors, fuck you cancer, etc.
― sleeve, Monday, 30 April 2012 21:31 (six years ago) Permalink
Somehow the fucking doctor she has been getting x-rays and cat scans from for the last five years completely missed the huge tumor crushing her heart.
due to the time, i am assuming you are US based pepper, cos this scarily similar to our situation.
3 years of 'problems' that were ignored cos it would have cost a few quid to send bh for a CT scan ..
so, yes fuck you incomp. doctors and fuck you tory policy to make doctors even more important in the decision making process.
once bh was escalated to the next level of care then it has to be said, the care was absolutely fantastic, but the fact of the matter is that he problems were ignored by the the GPs for 3 years .. and the GPs defence : 'bh is too young to get stomach cancer'
ok, time for more wine ..
― mark e, Monday, 30 April 2012 21:39 (six years ago) Permalink
hang in there, also check out the revive on the Steve Albini thread, very inspiring.
― sleeve, Tuesday, 1 May 2012 00:36 (six years ago) Permalink
I was told just today that my aunt was in the final stages of her cancer, so I feel you. It's amazing how much money + resources gets pumped into research and how it's still such a crapshoot of who survives and who doesn't.
― musicfanatic, Tuesday, 1 May 2012 00:47 (six years ago) Permalink
Colonel, that's devastating news, I'm so so sorry. Love and strength to you and B x
― ailsa, Friday, 27 April 2018 14:57 (three months ago) Permalink
sorry CP that is awful news <3
― Squeaky Fromage (VegemiteGrrl), Saturday, 28 April 2018 16:56 (three months ago) Permalink
So sorry to hear the news, CP. Sending good thoughts your way.
― Fetchboy, Saturday, 28 April 2018 17:27 (three months ago) Permalink
We have a bit more information now. The median survival for this particular secondary cancer is 21 months. However there is a woman in the FB support group for IBC who is still alive after 6 years, and she is taking the medication my wife will be taking. I still don't understand the NHS rules for this, because they want her to start taking the hormones that would have made her ineligible for the treatment she's going to be on. She just couldn't have started taking the hormones first. Fuck knows
― Colonel Poo, Saturday, 28 April 2018 20:01 (three months ago) Permalink
I'm just posting this so I don't write it somewhere else: what the fuck does "don't give up hope" mean exactly? don't give up hope that a cure for terminal cancer will be discovered and go through all the clinical trials and be available on the NHS in the next few months? I know you mean well but fuck off.
― Colonel Poo, Thursday, 10 May 2018 21:07 (three months ago) Permalink
I know you mean well but fuck off.
internal thoughts : the true test is when you say them out loud.you have been in my head a lot recently sir, and my offer stands.xx.
― mark e, Thursday, 10 May 2018 21:20 (three months ago) Permalink
thanks Mark. I'm just venting. the person who texted me that is someone I haven't seen in a couple of years and I'm supposed to be meeting up with them and some other old friends next month, the friend who's organising it asked me if I'd told them and I said no but I didn't mind if they did. it's really nothing, just irked me.
― Colonel Poo, Thursday, 10 May 2018 21:33 (three months ago) Permalink
cloying encouragement is one of the worst things anyone can do in response to shit news, yet loads of people do it. it only rubs it in and makes it worse. saying nothing is infinitely more helpful.
― karl wallogina (Autumn Almanac), Thursday, 10 May 2018 21:46 (three months ago) Permalink
our friend who’s been going through this is too nice to snap at anyone, but we’ve been in visiting him when others are there running off empty platitudes of hope and encouragement, and the look on his face says it all. the intentions are pure but it does not help. like, he’s putting himself through incredibly traumatic surgeries and chemo, obviously he’s not giving up.
― karl wallogina (Autumn Almanac), Thursday, 10 May 2018 21:59 (three months ago) Permalink
I completely understand being in that position of wanting to help but not knowing what to say, I'm in it myself. Saying nothing often seems like the better option, but that risks appearing cold or indifferent. That's why I just posted in here, hopefully I would never actually snap back at someone but I can be hotheaded so
― Colonel Poo, Thursday, 10 May 2018 22:03 (three months ago) Permalink
totally understand. there’s no cardinal right or wrong way to respond, but some sentiments are basically “well fuck i’ve got nothing good to say but i should say something”, which in itself is good and well-meaning but sometimes a heartfelt “well fuck” or “what can i do” or “fancy a pint” would be better.
― karl wallogina (Autumn Almanac), Thursday, 10 May 2018 22:18 (three months ago) Permalink
Maybe, in a more general sense, it's intended as "don't give in to despair" i.e. enjoy what you can, while you can. Nobody knows what to say and a good fraction of people will fuck it up. I know several people who have been through devastating times and have told me that dealing with other people's emotions is a massive and unwanted workload. That said, CP it sounds fucking horrible and I wish you strength and whatever good luck is possible.
― startled macropod (MatthewK), Thursday, 10 May 2018 22:19 (three months ago) Permalink
Maybe, in a more general sense, it's intended as "don't give in to despair"true, also perhaps they themselves are not coping with the news (even though they’re relatively distanced from it) and are probably comforting themselves as much as anyone else. maybe i should walk back my criticism tbh
― karl wallogina (Autumn Almanac), Thursday, 10 May 2018 22:22 (three months ago) Permalink
I can understand to a degree the reticent to prescribe strong painkillers given the opioid epidemic in the USA, but how much pain do you have to be in to get anything stronger than fucking cocodamol?? Have your leg sawn off or something? My wife asked for painkillers and the GP prescribed her cocodamol, I looked it up because it wasn't helping, it's the same fucking strength as OTC. I could go and buy her some Neurofen Plus with a higher dose in it from fucking Morrisons right now. WTF. Now she's having the go-around trying to get something stronger, the hospice nurse is on holiday, on hold to the GP.
― Colonel Poo, Thursday, 17 May 2018 09:55 (three months ago) Permalink
My wife has decided to hire a "death doula" to help her with plans for the rest of her life and her eventual death. I don't really like to ask for money because we are not poor and can afford to pay for a certain amount of this but if you would like to help out with a couple of quid her GoFundMe is here:
― Colonel Poo, Wednesday, 6 June 2018 20:13 (two months ago) Permalink
a heartbreaking story. Not heard of death doulas before but sounds like an excellent idea. xx
― kinder, Wednesday, 6 June 2018 20:18 (two months ago) Permalink
that sounds like a very positive choice. hugs to you both!
― William Thinkpiece Hackery (NickB), Thursday, 7 June 2018 09:08 (two months ago) Permalink
yeah that is a p great idea
― Squeaky Fromage (VegemiteGrrl), Friday, 8 June 2018 02:13 (two months ago) Permalink
Friend of mine who I've known a very long time passed away this morning after trying to beat non-hodgkins for the last year or so. He was often cantankerous, mischievous and getting into trouble with everyone but he was a talented artist and antiques restorer and a great goth DJ and songwriter. Cahl, your larger than life obstreperous nature will be well missed, mate. :(
― Stoop Crone (Trayce), Wednesday, 18 July 2018 02:59 (four weeks ago) Permalink
<3 sorry for yr loss trayce
― Squeaky Fromage (VegemiteGrrl), Wednesday, 18 July 2018 03:13 (four weeks ago) Permalink
Sorry for your loss
― Ross, Wednesday, 18 July 2018 03:26 (four weeks ago) Permalink
oh jeez trayce i’m so sorry
― karl wallogina (Autumn Almanac), Wednesday, 18 July 2018 05:21 (four weeks ago) Permalink
I totally thoguht he had it beat. He got better after all the chemo and initial zapping. Was back to working, hair growing back and all. Then for some reason he had to do a stem cell treatment - wether it was neccesary or experimental I'm not sure? But it went bad, fast, and he lasted barely weeks.
Now all I can think is how I never really caught up with him much, and I'd hate to think more people would turn up to my death than they do my life. I'm a shit friend.
― Stoop Crone (Trayce), Wednesday, 18 July 2018 05:26 (four weeks ago) Permalink
nah you’re not a shit friend. this sort of things just hurtles in out of nowhere.
― karl wallogina (Autumn Almanac), Wednesday, 18 July 2018 05:35 (four weeks ago) Permalink
Seconded. I’m sorry, Trayce.
― El Tomboto, Wednesday, 18 July 2018 05:37 (four weeks ago) Permalink
Adding to the condolences — it’s never easy.
― Ned Raggett, Wednesday, 18 July 2018 06:17 (four weeks ago) Permalink
Autumn Almanac otm - take care of yourself, Trayce.
― Andrew Farrell, Wednesday, 18 July 2018 06:49 (four weeks ago) Permalink
Fuck things that aren't quite cancer but which basically are, and which infect your 5 and a half month old son.
We need a LOT of positive thoughts right now, so please send them. If everyone can say "spontaneously resolve" out loud while thinking of my baby Casper (because this cancer-like disease sometimes does) I'd greatly appreciate it.
― Hey Bob (Scik Mouthy), Wednesday, 25 July 2018 18:39 (three weeks ago) Permalink
Specifically this: https://www.macmillan.org.uk/information-and-support/childrens-cancer/cancer-types/langerhans-cell-histiocytosis.html
― Hey Bob (Scik Mouthy), Wednesday, 25 July 2018 18:40 (three weeks ago) Permalink
What a blow. Here’s to the spontaneous resolution Casper deserves. Fuck cancer and especially rare childhood cancers
― devops mom (silby), Wednesday, 25 July 2018 18:57 (three weeks ago) Permalink
Said out loud indeed.
― Ned Raggett, Wednesday, 25 July 2018 19:03 (three weeks ago) Permalink
casper is in a great hospital (spotted a post of yours on FB earlier today when I realised I knew where you all were).I have friends who have had a lot of dealings with that place over many years.never heard a word of complaint from them.I will chant "spontaneously resolve" a lot from hereon sir.oh, and please don't forget to look after yourself.
― mark e, Wednesday, 25 July 2018 19:04 (three weeks ago) Permalink
Ugh, how awful. Solidarity to all the Mouthys.
― suzy, Wednesday, 25 July 2018 19:05 (three weeks ago) Permalink
― dele alli my bookmarks (darraghmac), Wednesday, 25 July 2018 21:35 (three weeks ago) Permalink
scik <3. spontaneously resolve!
― princess of hell (BradNelson), Wednesday, 25 July 2018 21:36 (three weeks ago) Permalink
said it. :)
― illegal economic migration (Tracer Hand), Wednesday, 25 July 2018 22:58 (three weeks ago) Permalink
Sorry to hear. Hoping for a spontaneous, happy resolution for all.
― xyzzzz__, Thursday, 26 July 2018 08:10 (three weeks ago) Permalink
positive thoughts for all of the mouthys big and small
― I'd Rather Kecak (NickB), Thursday, 26 July 2018 09:39 (three weeks ago) Permalink
― Andrew Farrell, Thursday, 26 July 2018 09:42 (three weeks ago) Permalink
wishing the best, Scik
― a Mets fan who gave up on everything in the mid '80s (Dr Morbius), Thursday, 26 July 2018 11:49 (three weeks ago) Permalink
Best luck SM and family. Keeping you in my thoughts. My partner beat a similar childhood cancer — it happens!
― rb (soda), Thursday, 26 July 2018 12:02 (three weeks ago) Permalink
It’s good to know. Thank you.
― Hey Bob (Scik Mouthy), Thursday, 26 July 2018 12:17 (three weeks ago) Permalink
thinking of you & family, Scik. spontaneously resolve!
― a passing spacecadet, Thursday, 26 July 2018 13:35 (three weeks ago) Permalink
sorry to hear this Nick.
― Colonel Poo, Friday, 27 July 2018 11:32 (three weeks ago) Permalink
An update (that I wrote for Facebook).
Because Casper took his meds well over the weekend, his MRI and first bone marrow came back clear, his obs were very stable, and he isn’t presenting as being in any pain – in fact, he’s presenting as being a very happy, smiley baby, most of the time – we’ve been home since Monday teatime. Casper is now an outpatient at the RD&E rather than an inpatient at Bristol Royal Children’s Hospital.
“It must be a relief to be home,” says everyone.
Hospital is a safety blanket. Medical professionals everywhere. Every meal taken care of. A very small physical environment to exist within. Constant support. Home is… terrible freedom. What if we get something wrong? We know we can call literally any time and get support. We know we’re 10 minutes drive from Exeter hospital. But those are facts for the reasoning part of the brain, not the emotional part.
More thoughts in a bulleted list, because it is my job to know how people consume content, and because this is how my brain is thinking right now.
• Cancer does not care who you are. On the paediatric oncology ward are all races, social and economic backgrounds, cultures, sexes, ages (within a range, obviously). Cancer does not give a fuck who you are or where you’re from. Sure, some cancers are related to lifestyle choices and social / environmental / cultural factors. But when you’re 11 years old, or 6 months old… cancer doesn’t give a fuck about that stuff. Cancer is arbitrary.• CRUK estimate that half – that’s 50%, or 1 in 2 – the population will get cancer at some point in their lives. Half. https://www.cancerresearchuk.org/…/cance…/risk/lifetime-risk • We’ve found a few people on the internet who’ve written about their children going through Langerhan’s Cell Histiocytosis. Many of them have relapsed. I’m assuming the ones who don’t, don’t write about it, because if there’s no relapse, there’s no trigger to update? You just get on with your lives, right? Remind me, in a year, and 5 years, and 10 years, if we’re lucky, to update people that we’re lucky. To let anyone else who goes through this know that you can be lucky.• I am scared that sympathy fatigue may kick in. I hope it doesn’t. This is me trying to prevent that happening. If anything, now we’re home, we need more support. And all that support needs to be is popping round for a cup of tea, sending a message, having a conversation with us. It doesn’t need to be about sick children. It can be about anything.• Sometimes you talk to somebody, fill them in on what’s happening, and you can see them getting emotional, choking up a bit, their eyes dampening. And your initial thought is “what are you getting emotional for, it’s OK”, and then your second thought is “yeah, this is fucking awful”.• We can’t lose him. I’m pretty sure we won’t. But it’s going to be very tough going.• Second chemo is tomorrow. The first at Exeter, the first as an outpatient.• Today has been a tough day; our first at home with nothing to do. Tomorrow’s chemo was meant to be today but got postponed, so we were left with this weird stay-of-execution feeling. A friend came round for lunch. We went to Em’s parents for tea. I took Nora and Casper to Sainsburys, and to the park. I’ve probably felt at my lowest today; it’s been easy while I’ve been running around doing things. Pausing is tough. Especially when you can’t really pause, because there are three people and two cats in this house who I need to look after.• We are going to own the fact that our baby boy has this disease that’s basically cancer. We have to own it. We don’t want to be the cancer family who people pity. We don’t want to be the cancer family who people admire for being brave or strong. Your family will almost certainly be that cancer family too at some point, I’m afraid. 1 in 2. 50%. Half of people. We just want to deal with it and get rid of it and carry on with our lives. If / when you go through it too, I will try and help you.• Quite often it feels like we’re in a shit made-for-TV (or Netflix, in this day and age) film. A really slow and long and boring film. You want to stop it and put on something entertaining instead but you can’t change channel.• Thank you, again, to everyone who has helped. For all the shit jokes, for the food, for the company, for the flowers, for the gardening, the haircut, the toys, the cat-sitting, the plant-watering, for everything. Keep it up. Please.• But maybe no more toys. The house is full. Shivering Dave the crocodile has taken up the last available room.• And maybe no more cake. At least not for me. I’ve not been bike riding properly in a long time. It’s having an effect.• We love you.• x
― Hey Bob (Scik Mouthy), Thursday, 9 August 2018 21:44 (one week ago) Permalink
thinking of you and yours. cancer did a drive-by on my family this summer. it just really sucks.
― call all destroyer, Thursday, 9 August 2018 21:50 (one week ago) Permalink
• And maybe no more cake. At least not for me
haha.this is spot on.during our chaos we had so many cakes brought to ours that our freezer became full of cake.took months before I could put a lasagna in there.in fact scik, there are so many points in your post that hit home (especially the comfort zone that is the hospital) … but hey.hang on in there sir, there is a lot of love flowing in your direction.xx
― mark e, Thursday, 9 August 2018 22:00 (one week ago) Permalink
That’s really well written about a really shit time. Take care, man.
― Andrew Farrell, Friday, 10 August 2018 06:10 (one week ago) Permalink
Resurrected my blog: https://sickmouthy.wordpress.com/category/langerhans/
― Hey Bob (Scik Mouthy), Saturday, 11 August 2018 20:58 (six days ago) Permalink