Pancreatic cancer

Hi ZimZam,

It’s Megan here from Macmillan’s Online Community team. I saw your post and wanted to offer some support whilst you are waiting for other group members to reply.

I’m sorry to hear about what has brought you to join the Community. Our forums are safe and supportive spaces to chat to others, ask questions and talk openly about how you are feeling.

Whilst I appreciate there is a lot going on with your situation, I am sure you are not alone with how you are feeling as we often hear how cancer can cause feelings of loneliness and isolation. I’d like to share the following information with you to help you find additional support with the concerns you mentioned about housing and medical care.

The organisation Shelter have some information to help with housing when you leave prison. There is a search tool to help you find the contact information for your local council’s homeless team and further guidance on this webpage.

I noticed you said that ‘I've thought about trying to stay in jail because at least I can access treatment for the cancer’. If you have questions about accessing cancer care, please do phone the Macmillan Support Line on 0808 808 00 00 from 8am to 8pm, every day. There is also the option to send an email or live webchat during the opening hours.

When you contact the Support Line there will be options to speak to the Information Nurse Specialists, the Information and Support advisers, and the Money and Work teams. They can provide emotional support, practical information, and financial guidance alongside offering a listening ear.

The Prisoner Advice Service has an Advice line you can contact for specialist guidance about ongoing referrals and support for your release. You can call 020 7253 3323 and please click here to find their opening times. If you prefer to get in touch by email, there is a contact form you can fill in here.

I hope the above information can be useful and if you need any help using the Community, please don’t hesitate to get back in touch. You can email community@macmillan.org.uk or send a private message to the Moderator account.

Thank you very much Megan as I just read the post because i placed it(against the rules as I wasn't allowed online!) when I was out on a 3 day pass to a hostel and ive had no community access until now. I was supposed to be getting released into a hostel until I refused to get released until I had a temporary accommodation flat offer and am now in a hi-rise. The most dramatic thing is the diet and then the ability to get around but I've got to fill in lots of forms and make claims ext..I had a consultant appointment for my 6-monthly MRI scan cancelled and now all the treatment has all disappeared. I've also got someone coming in a couple of days to try and get me a microwave and some furniture ext..I've not been off the toilet for 2 days and hope to be getting registered with a doctor in a couple of weeks so it should all work itself out! When I was in jail a charity came in to talk to me about the increasing number of prisoners getting cancer inside and what would help and what problems I'd encountered so hopefully things will be changing in the future as having a "Whipple "chained to the bed or in handcuffs is not an experience anyone should have to go through. But it's OK now as it's summer and trying to do this release in the winter, cold and snow doesn't bear thinking about! So this is my 3rd day free and I'm good. It was very kind of you to reply to my post as most people don't care about us people in the prison system. I'll post again as I hope to figure out this "Internet" and hopefully make life a little easier!.....

The answer to my situation is to ALWAYS BE POSITIVE! Things in life have a way of working themselves out. I was a 6 1/2stone drug addict who had no thought of more than a couple of hours ahead with zero quality of life and then with pancreatic cancer when I got imprisoned a few years ago and now I statistically have a 25%chance of living beyond 2027- but am I sad or down about it??..HELL NO!, I would much rather have this quality of life for 2-5 years than drag out living anethatised in a semi coma on opiates for the next 20 years- thats not living,it's just existing! When I got imprisoned it actually did not me a HUGE favour. If I hadn't swallowed all those drugs when i got  busted and overdosed then I would never have been hospitalised and the cancer would never have been found so I would've been long dead by now! Now I can try and live whatever life is left as well as possible and maybe make a positive contribution to this world? The only regret is not seeing the light sooner. The moral of this is that there's ALWAYS more than 1 way of seeing things and it's just a better idea to look at things from the brighter side even if it looks impossible at the time. So there's hope for us all and I just want to be happy whatever the challenges are ahead...

• Now been a month since I got libbed from jail and finally got a DR and some meds sorted out and I've even got some furniture in my flat now so things have been looking up but had my hospital appointment for a scan last month cancelled and they gave me an appointment to see the consultant in November but that wasn't right as I was supposed to get a scan every 6 months then a year but it's been over a year and I'm waiting for them to get back to me.in jail I was getting a "dosset box"but last week the chemist just handed me a carrier bag full of tablets so that takes a bit of getting used to. The worst thing is that I don't know a soul out here as all my friends are all in jail so in the last month apart from chemists/social workers and the beaurocracy I haven't talked to a soul and it's pretty isolating when I'm stuck in the house alone for days at a time. I've been getting some pains in my back but I don't even want to think about the cancer coming back as even if it did there's not a whole lot I could do about it and this is probably going to sound crazy to anyone reading this but I REALLY miss my friends and having other people around and if I got offered to go back to the same bit in the same prison then I'd probably be there like a shot! In jail they come and get you and take you for your meds in the morning and then any hospital appointments so your always there with zero problems! But it's not reality and I got to get a grip of this and there's a bigger more urgent problem that I was unable to get any creon.i REALLY need these things as I'm stuck on the toilet for hours at a time with lots of sore stomachs if i don't have any.i was a bit lucky as I thought ahead when reading this and other articles and saw this coming so I've been rationing myself and only took 2 instead of 3 but now I just have 11 of the 25000 ones left and have stopped snacking and only eating meals with just one at a time. I've had a bad stomach but not as bad as if there where none. I've tried looking online but I'm wary of trying any overseas online sites in case there fakes or something else.i go to the chemist every couple of days but they have no idea when they might come in so it's just a case of waiting and I don't think there's anything anyone can do about it.from what I've read there isn't any substitute meds for creon so for once in my life getting access to chemicals is not easy!.I don't think anyone will but if anyone knows where I can source some then please let me know? 

Hi..Which hospital have you got contact with? November is too long to wait? Go back to your GP.Everyone is having supply issues with Creon, we now get it from the cancer hospital pharmacy. Please contact the GP and ask them to refer you urgently for a scan to your local specialist hospital.Where are you geographically? If you are in the South East, you should be referred to the Royal Marsden  or one of their affiliated hospitals.Fingers crossed.

Thank you Anjohannes and i have tried and am getting somewhere. Right this post I seem to just be updating in a not-so regular basis..and this ain't a good one so youve all been warned!!.I couldn't get any creon a couple of weeks back so took what I had of my limited benefits money left and ordered a load of creon online from 1/ Australia 2/ Canada and 3/ India (hedged my bets that ill get some soon)as I didn't fancy going through that again and it's hard to get any perspective as, apart from beaurocrats, social workers and people in shops ext..I haven't had a soul to talk to since I got out of the jail on June 19th. It's my fault and also as I just struggle to deal with stuff so if a shops busy I just do without dinner and if a bus is busy I'll walk 5 miles rather than get on it ext..I've just done a long sentence and before that I was anethatised on £150 worth or heroin EVERY day with no exception since 1998 I think,so it's like I'm back in the 90s again(which probably sounds like not a bad thing to some of you).I'm going nuts staring at 4walls and talking to silly people on the Internet who,let's face it are all just looking for money. So it's been about a month ago that I started feeling pain in my back, nothing too bad but more like a "pressure "and what I felt 1st time around in jail. So I've tried and tried and FINALLY got through to a DR because I wasn't registered and it's a nightmare getting anything done as nobody know what the hells going on. So today's been a nightmare,after weeks of worry (I miss my old dog from before I got the jail because I used to always talk to him and I'm pretty sure he got it but he got "doggy-jail"in the dogpound too when i got busted..yet another thing about going to jail..you lose EVERYTHING even the poor dog..it's an unspoken unregistered part of the punishment,they take away every part of your life and just leave it to the vultures who swarm in and what's left over goes in a skip!)I finally got an appointment.What a day it's been first I am nearly out of Internet credit and have to try and buy more then I dropped my phone and cracked the screen then bought a microwave for a tenner but it didn't work and needs to go back, then I bought a tv remote for tv which failed to work so bought a tv-recorder box with remote for £90 and it doesn't work without Internet so bought ANOTHER one which gladly DOESwork, and finally went to the DRs and they say (well-they always say) their chasing up this scan so I have no veins (due to years of pumping em full of heroin)and need to get a "pick-line" put in then get a scan so the jist of it is that THE CLOCK IS TICKING..I KNOW the cancers come back like I knew the first time as I NEVER make a fuss about anything and I'm quite perceptive and I know I'm a dead man walking..ye I can get some chemo and prolong things for a year maybe 2 but I had the Whipple and they taken part of the pancreas so I've had my shot, spun the wheel and lost. What I'm gonna say maybe sound kinda crazy to anyone reading but I REALLY wish I was back in jail..for a start they come for you and you always get your health care sorted then in HMP Castle Huntly, it's an open prison, and I had a "placement " where I went out to work in an old people's day centre and loved my job and loved the old people and I was also champion of the prison at pool so always had boys wanting to play me and finally I REALLY REALLY miss my friends. Now you out there probably have images of all these evil people stabbing each other and taking vast amounts of drugs, well it wasn't like that for me. I got a few GREAT friends in there and parole says I'm not allowed to talk to them. When I first got cancer symptoms the jail tried to just give me 2 paracetamol and threatened to lock me up I my cell if I didn't stop moaning and refused to take me to hospital but the full hall of 64 guys all staged a "sit out"and refused to go back to their cells if I didn't get taken for treatment then EVERYONE looked after me. On my birthday they got me a card and everyone in the hall signed it and two guys I was in with from my very first month inside right to the last day in 3 different prisons became more like family to me. I had nobody outside but they bought me clothes and got them sent in became my "next of kin"and virtually adopted me..but I'm not even allowed to talk to them on the phone now and don't want to screw them up for their parole by trying to contact them so I really had a positive experience inside and it's SO MUCH BETTER than this life now stuck here talking to this spider walking up the wall.if it was just a few years ago I would've been flooding the place with heroin and getting mad wi it but I REALLY don't want to do that any more..the last 25-6 years have disappeared in a haze and if I only got a short time left on this earth so I want to FEEL every second of it. I would like the chance of a girlfriend and a child but that isn't going to happen as nobody wants an old crook on a countdown and I want to maybe try and open a little market stall but seems out of reach now..what I DONT want is what I got, to be sitting with nothing, doing nothing and alone and isolated with no money because the disability benefits take longer to sort than i got time on this planet and I want my driving licence sorted but the authorities screwed that up as well when I got jail by saying I was too full of heroin(a little tip for any drivers out there with a drug problem-NEVER GO FOR TREATMENT or access help because the government,in their wisdom have got a "catch",if you access help and treatment then you get your driving licence-and possibly your job screwed) which never bothered me back then because I really didn't care and could've been threatened with execution but STILL would've driven. So I've changed my life got cancer and really sick and what do the authorities do?they refused to even let me out a bit earlier then dump all this impossible restriction stuff on me and make life even harder than it was (why I've lost count of the majority of people I've seen getting released then back within the year or sometimes days) and the irony is that in Scotland they have this LTP (long term prisoner) law where over 4 years you have to do ALLyour full sentence except the last 6 months(thank you Nicola sturgeon--MORON), well I get out and because it dosent work and jails full (with mostly return customers) they just announce their changing it back to automatic 1/2 or 2/3 release where I would've been out a couple of years ago and had all the treatment sorted for outside, but happens a month after I get liberated (as a detterant prison dosent work as only those who never would commit a crime anyway get dettered)..well I hope ,I mean REALLY hope that I might finally get some treatment sorted and there's not something else that decides to put a spanner in the works. I'm sitting here scared to go to my bed because I don't wanna think about it and got a tear rolling down my cheek because life should've been different..if only there had been some addiction treatment back in the 1980s then I mightve been sitting here with a family around now me knowing I'd done something good for the future..but no the society just decided to say "you got addicted and were just gonna punish the hell outta ya" and I gotta laugh as it's probably cost literally millions over the years to achieve that not counting the many millions and grief it caused by all that I did to support it my habit. My common law wife's dead, then my girlfriend died, my brother and sister in law, both my best friends and another girlfriend back in the 1990s --ALL dead from overdoses, when will the powers at be realise that you cannot punish your way out of this or stop it ever?? so legalise and mostly HEAVILY REGULATE it and just prescribe it,so the gangsters are all made unemployed and everyone who's doing it and going to do it anyway can do it safely with help available because if we keep just burying our heads then it's just got and keeps getting worse and all YOUR kids and grandchildren out there that will be at risk and have to do this eventually anyway. Then people who get these horrible cancers can come out of the shadows and get treated because if I didn't get imprisoned then I've died with it several years ago. God I'm sorry to go on people (if anyone actually reads this?) and it just ain't been good lately. I'm scared s***less and am sitting here in darkness with tears in my eyes reflecting on not just what happened but what should've happened and what I should've done if that illness of addiction hadn't taken me over..I regret every day since 98 and am so sorry to everyone around me and everyone it's affected but I suppose I got another day with "Jeremy vine" then tiktok so you all stay safe and I hope everyone got their families around because you really don't realise what you got until it all gone..I love you all..

Hi ZIMZAM… It must be mega stressful not having a support network, which is what your prison family is/was.I am sure that you have tried everything, but is there a cancer charity centre or Maggie’s centre near you.We have a local centre where both my husband and I attend counselling on a weekly basis.It really helps to have someone independent to talk to, just someone, who is not emotionally involved, but can propose alternative ways of dealing with things. You mention that you are with a GP practice, when is the scan scheduled for? If the pain gets too much, I would just go to A&E…I know it’s not optimal… Twice over the past 2 weeks I have almost called 999 to get hubby bluelighted as he’s had very high spiking fevers and rigours and the Cancer hotline… well let’s say I was on line in a queue for 40 mins +.But managed to bring the fever down with tepid sponging, paracetamol and ice packs.

so you need more support, please look for a cancer centre near you and keep us posted.Hope the croon arrives soon. Best wishes.

Ye..thank you.im trying to keep on top of it and really don't want any opiates as I had a big problem before so they probably wouldn't work for me.i was just a wee bit in shock with realising that in all probability I'm gonna have a crappy time in the near future but daylight puts a better light on things and I need to hold it together. I was sitting thinking about stuff too much which helps nobody and the futility of the system that's really restrictive and I just need to get a grip of this now.i just like putting things down (on a computer not on paper now).the crown from my prescription actually came through with a tub of 100 of the 25000s so that helps but I feel feel your pain with the ambulance and hospital situation.nothing worse than waiting around for treatment in a horrible place in limbo for hours. The problem with these cancer  charity things is that their wonderful and run by dedicated people but are "online "and I'm quite new and hate everything being online as uli really need to engage with human beings. Thank you very much for your replies and help and I'll keep trying to update my post sometimes good sometimes bad and hope that this works out..

hi people (if anyone actually reads this)im back again, another month or so down the road and i thought id stick a little update in.i was at the hospital this afternoon getting a picc line put in then a scan and then the line removed.to be honest over last while my backs REALLY been killing me like never before.im stuck because i cannot take opiates due to addiction issues so i just need to live with it and probably die with it.it takes an age for the cumbersom machinery of the health service to get into gear but its finally got there after more than a month .ive been wanting this but dreading it for ages now and id love my instincts to be wrong but its all too non-coincidental and looking at the stats ext.. things aint looking or feeling good.it dosent help that im stuck in here staring at four walls every day and these stupid rules of not allowed to talk to my friends are just crazy. anyway i got this parole officer whos actually a really good hearted nice wee social worker woman who means well and trys very hard and i got this agency "turning point" who criminal-justice team assigned to me on liberation.t heres a guy who checks up every week or 2 and a wee girl who tries her best but i must look like a real sad case getting social-workers to ask me to go for coffees ext and i dont want any agency/government paid for people being all buddy-buddy with me. one of my friends got libbed 3weeks ago and came up to see me 2weeks ago and my really good mate was out on a home leave and called me as well. man i miss my friends. ive had to do a lot of thinking about things and i know im running out of road and i got so much to do and so little time to do it. ive turned into the mega ultimate bargain hunter now, i saw a pair of binoculars in a charity shop so grabbed em for a fiver and theres ones not as good on ebay for £30.i got a microwave/grill combi for £10 that im really pleased with, i got a 43inch 2014 samsung tv for £35 and i got a dell laptop for £25,but it had all this software protection stuff on it so yesterday i took it apart and reset the CMOS bios battery inside it then reset windows 10 from the youtube video i watched and now im using it and its working great. the tv had no remote so i just got a recorder box for £30and that doubles as a remote and i got LOADS of plants so my wee house now looking good, its like being in the rain forest when im watching tv as im surrounded by plants! i been forcing myself to eat well so ive been living on salads and eating lots which is quite new for me because as a heroin addict i was always around 7stone and looked like a skeleton so never again. this poses some difficulties as eating too much at the one go is not a good idea after a whipple and i suffer from really bad stomach pains that only go away once i been to the toilet. ive done ok with the creon here and theres been a good enough supply of the 250000s as i dont want to go through that again and i sent away to australia and for about £30 including the shipping i got 100 creon 10000s for emergencies so if anyones needing the website (was more than one site because i ordered em during the shortage but took 2,1/2 weeks to come)address then just let me know and ill send any details. every day now i try and walk 4 or 5 miles and have never been this healthy and fit for over 30years even though i got cancer! ive sent and received my birth certificate and just re-applied for my driving licence but ive got a funny feeling there going to mess me around with medical forms and doctors ext..i have wrote down all the things i really want to do before i die and first is get a permanent house and car then i need to find a woman and try and have a kid before its too late and then i need to set up a business and ive been looking at market stalls up in the city and when i die i want this to give a future for my (hopeful) family and set them up if possible. i know its a lot to cram into a year or maybe two but this is what im doing and apart from the family, i know i will achieve this. EVERY SINGLE DAY i wake up in the morning here full of regret for wasting especially the last 25 years for living in a semi-coma and wasting all those years addicted to heroin and valium, what a waste, if only id had some treatment or seen the light then things mightve been so very different, also on a lighter note i REALLY want to go to another rave before i die and take an ecstacey tablet and have a brilliant night, this is harmless and not an "addiction" kind of drug but a harmless fun night and i want to experience it again before i die. its crazy position im in because im actually happier now than i ever was as an addict even the cancer is a much better lifestyle than having a habit, i kick myself on an hourly basis for being such an idiot. the disability benefit people where on the phone (finally) and its about time i got something sorted out as my heart really goes out to all these people stuck on this universal credit out there as its just not physically enough money to survive on, stupid tory government with there idiotic right-wing finger wagging judgemental attitudes have turned everyone on welfare benefits into a community of "wheeler-dealers", where you got to do "side-hussles" of shoplifting/prostitution/drug-supplying/fraud/buy-sell whatever stolen to just have enough money to live on, or just getting blasted out their heads on drugs to escape their situations and poverty. these right-wing tory people have got a LOT to answer for, have they not got enough brains to look across the atlantic and see what not looking after your poorest in society does to a country? they might have low taxes but got 25% of world population of prisoners there and everyone has to be armed because people are either doing ok but scared to walk the streets because of the violence or so poor that nobody gives a sht and dosent care about whatever jail sentence their threatened with as they just got nothing to lose and with the right-wing chasing "low taxes"as their mantra are starting to create the same here except not with guns but with knives coz nobody cares or is too stoned to care so i REALLY want to give this new lot in government a chance but im not holding out much hope. i also can remember telling the deputy governer of the prison that this crazy sentencing in scotland that got me 5years and if you get over 4years then we got to do full sentence except for last 6months (can apply for parole sooner but they set bar so high everyones doing years longer) well i said it would just clogg up the system, fill the jails to bursting and not matter if you get 10months or 10years as makes no sense if theres no help or rehabilitation. one of my friends who was doing 10years got out after 7on parole then was recalled in 2019 because the cops came to his neighbours and saw him with his girlfriend round and hes now been in over 4years for a covid violation, they need to stop punishing the hell out of everyone because its just an expensive way of achieving nothing! im sorry if anyones still awake, thats my rant for the night, putting the world in order! .well ill sign off for now and if anyone reads this i really do love you and want you to live till your 100..i hope im still around to write a few more of these and this debilitating agony of back-pain could turn out to be something totally unconnected but i wouldnt bet on it..too much of a coincidence..so i wait to hoprfully hear about this scan sooner than later..good luck everyone out there..

Only just seen your posts as  I am very new here.

I have known and lost friends to H. Demonisation helps no one.

Your story reminds me (in a strange way that I am sure won't be clear to anyone else) of a friend who got AIDS (when it used to be a death sentence).

He had everything and nothing at the same time before he got AIDS. He was left a fortune when his parents died when he was 17. He became an eternal student. Hanging around univercity, never finishing anything, never acheiving anything, just parties and dangerous  life choices. He was never happy unless on something. Never really happy.

When he got AIDS he said he now had something REAL in his life. A finite time span. A wakeup to actually DO something. 

What he did amazed us all....he became an undertaker. He actually loved the job. He said every time I saw him 'AIDS was the best thing that happened to me '.

Life is strange. It can be lived in so many ways.  Some live a 'content' 9-5 18-65 slog making money for someone else.  Others REALLY live more in just a few short years. Quality not quantity. 

I hope you have quality to come. Its your turn.