Hi Jenny I doubly made sure that the last message I replayed to you to say it had gone to saiynanandcookie. I do not believe it that went to theirs again I can only assume I am more bloody affected by some of the treatments or there something wrong with the reply’s to you. I personally think it’s me again. Mind you just seen the time that’s not helping anyhow can you let me know if eventually you did read my messages Marj 

Dear Marj, Just read your post, have not got a clue why I never saw it before. Technology and me do not mix well together. You did make me laugh about Covsntry,. I live in Heysham so my hospital in Lancaster. Believe you won through this bloody cancer with your positive attitude, don't know if you ever went through the depression etc, I went through it at beginning, up early hours keeping in touch with the death gremlins, as I called them. I was very like you, told I was 1 in thousands that do not have symptoms. I had problems with back, but just could not get to see a GP, sent for Xray, then saw UP should be arthritis in spine, go home and live with it, I asked could I have physio and a also a blood test to check everything. 13 week wait physio even 3 week wait for bloods to be taken. I was in so much pain took myself off to AandE, doctor pressed back, I said "Oh love don't press there" was given lecture he was a 43year old man, a doctor, and how dare I call him love, his title is doctor and that it what I must call him (pompous ***). Sent me home with bottle of oromorph, and told arthritis. 2 and half weeks later had appointment with orthopaedic consultant 're knee replacement, told him could not have no as in so much pain in back. He arranged MRI scan within 48 hours. Had scan, to this day could not tell you the man who buttoned up my blouse, crawled out of scam to collar over chair in corridor, some nice lady found me , ran for nurse, who got me to A&E. I had the sweetest Arabic lady doctor look after me, was given morphine sent for cat scan, then left in corridor. I pleaded to be let home, but she would have none of it, at this time the same pompous *** was on duty, very strange he could not lift his head and look me in eye. My orthopaedic consultant was called, he took me in a room told me I had cancer in spine but it must be coming from somewhere else. He was very kind, but left me on my own. What a bombshell. 10mins later got telephone call from GO said "I have been told to ring you 're blood results, do not know who you are or what your problem is" I am afraid I told him to F off just been diagnosed with cancer and put phone down. The biopsy, asked did I mind this young doctor assisting, not at all. Told did very few liver biopsies, and never done one with patient in sitting pisition. The young doctor did not assist but did the biopsy, only shouted out once,she did good job. I was then sent home. Worse thing ever, having to tell my 24 year old son, he collapsed you can imagine just the two of us, he wanted to know what stage and how long I had. Could not tell him I was terminal, just that I had lung,, liver and cancer in spine - he has picked himself up and has been a real good lad since. Only mistake we made, my son only child, must have thought I would die soon and asked if his Dad could come home, only if he would change. Yes he came, big, big mistake. No use whatsoever, will not take on board my cancer, does not have conversation with us, he just does not of shopping, that is what he calls looking after me. I still do washing, ironing, cleaning, cooking and shopping, winge about it all the time, but think it keeps me going. Now had 11 cycles on this immunotherapy which was only accepted by NHS in Sept 2018, I was given in October, had no side effects, still do not have any other symptoms other than back pain. McMillan came to see me beginning, told them never ever mention death, which she did not, telephoned me back in Feb. Said I was doing so well, had decreased morphine down to small dose, that they were going to sign me off their books. So another.positive. As my onc consultant says, you keep getting all these other problems but still keep smiling. Let's hope I can do as well as you and can be as positive as you. Would love to hear from you again, just to have another laugh. Love Jenx

Hi Jenny, nice to hear back from you. I actually tried yesterday to reply. Along with a lot of things going off around me. I was sad to read your story especially with you being alone like myself when you get told such bad news. I honestly did not expect anything like cancer st all. Just like you too. I can certainly relate with it, also I can with your sons reaction. It doesn’t matter how old they are. The fear they feel, you just still want to protect them. I if I had have split and asked if their dad come back would have given into mine. When I was told I didn’t cry  or anything but I felt my entire body the blood ran cold. I will never forget that feeling.. I just sort of shook my head to try and make me feel normal. Anyhow I got myself back together they wanted me to see Macmillan. I only saw her for 10mins. I just said got to go I need to do some shopping. I them walked out. I am a type of person that need some time alone to take things in. I am just a deep thinker. There’s a Costa caffe in the hospital. I went in there got myself a coffee. I sat for a couple of hours ignoring my phone thinking. Now I couldn’t say what was going around my head now. I remember being resigned to the fact when I left that there was no cure for lung cancer. They had already made me a appointment for me in fact they had made two one to have a pet scan two days later, another one to have a biopsy. The following week. So I had the pet scan Friday, Monday the biopsy and then I was told on the Monday I had a appointment with carditherasics on Wednesday. I went shopping. Still ignoring my phone I just at the time didn’t want to talk to anyone. I knew the minute I got home I had to obviously tell my husband. Who by the way is similar to your ex, about as useful as a ashtray on a motorbike. Total wast of space. On the Wednesday when I saw carditherasics he said to me what are you doing on Monday I said nothing. Oh my husband did come with me, he said to me well you are now your coming in here and I am taking your left upper lobe part of the lung out, he was blunt and straight to the point. Which is the kind of person I like. He told me, I would be in about 10 days, I just said no way was I stopping in hospital that length of time, I don’t do hospitals. He laughed and said well you prove me wrong and let’s see if you get out early. He told me it could be done but very few do. I burst out laughing and told him I was out of hospital the day after I had been rushed to theatre with a ectopic pregnancy. I told him I was out the day after I had a hysterectomy. He did seem a bit shocked by that. We both had a laugh because he had seen my phone, and he said joe come you have the new iPhone before me, I told him I preordered it, then he went on about iPads etc we had a longer conversation about gadgets than my op. He actually was a brilliant guy who made you feel comfortable with his plans. So the Monday came around and I was told all the ins and out of the operation. I genuinely did not know i would be put on bypass. I really didn’t know what to expect. So yes a couple of things I was a bit taken back with. Then they mentioned morphine as a pain killer. Wow I told him no way was I going to have morphine, I had it once by injection after a op omg never again it made me so ill, I totally refused anymore. So they said they would give me a epidural. I said ok I will have that then or pethadine they said pethadine wasn’t strong enough I tried to tell them I would be fine with it. But no everyone thinks they know better, I did end up conceding to epidural. All this is the boring bit so I will cut it short, had the op on Tuesday as planned went home Saturday morning. Oh I will tell you this bit, I am a coffee addict so when they took me back to the ward, I knew the next floor down was where costas was, because I didn’t have any morphine I felt pretty ok in general. Other people where laying in the beds moaning etc someone said to me hoe come your wide awake and looking normal that is when I said I got more sense than you lot, I refuse morphine. It was w bloke he said really I said really, I was supposed to have physiotherapy you know because your breathing become different, it really didn’t feel much different to me, so I waited until no one was looking. I had two drains and other stufff so I had two of those poles you see people dragging around in hospitals. Well I had one in each hand and I set off to costas. Wow had I underestimated the length of this corridor or what you can bet your life I did, plus I hadn’t gone that far before I realised how different my breathing was, so me being me desperately needing a coffee just carried on, by the time I had got half way, I looked back looked forward didn’t know which way to go, by now I am sat in the middle of this corridor, with a pole in each hand thinking ***, I am stuck. This doctor started to walk towards me when he got to me he asked if I needed help, I said no thank you just having a rest, I felt like one of those naughty school girls. After I got my breath I knew whichever way I went I would have to do it in small steps and keep stopping because of my breathing. So they’re I sat thinking to myself that will teach you, you dozzy cow. Talking about myself. In the end the coffee won, if I set again. Did it slowly eventually I got to the lift, by then I am feeling half dead but euphoric at the same time, I got in the lift saying here I come. I knew costas was not far from the lift itself, yippee I had made it. I reckon that was the he most exiting day of my life at that point. I ended up sitting and sitting and sitting there for a few hours just dreading that journey back. Eventually I had to try it do I thought here goes, I started me journey it was like climbing a mountain. Although I had to keep stopping it was a little easier than getting there. Whether that’s because I had got there, I was getting used to my lung and breathing was different or what, it still took me ages stop starting etc, when I got back a nurse said she had been looking for me, I asked why, all she said she noticed I was out of bed and wondered if I was ok and where I had gone. I told her I said been costas she looked at me to say as if, then I said what’s that cup on the table near my bed, she looked and shouted someone she’s telling this staff nurse, oh my dear she been to costas the staff nurse said she could not have possibly have been there and back then she pointed at my cup, which was a full one I had brought back with me, her jaw just dropped, I told her to close her gob before she caught flies, with that, I had done it once so that was me up and rolling. More coffee when I needed or wanted it. Look at me straight in there with no proper introduction or anything. Well you know the shortened version of my first name, which I hate with a vengeance being the eldest girl I got stuck with my mothers name of Marjorie, god what a name, so you can see it’s Marj I am one of 7 children the second eldest of 3 boys and 4 girls. Like yourself I am a northerner born and bred in Yorkshire, my mother’s didr of the family where Lancastrian like yourself my fathers is the Yorkshire side. I am now 61 and was 54 when I first found out I had cancer, about 6 months prior to me being diagnosed one of my brother 4 years younger than myself was rushed into the heart unit  with his organs starting to close down, he literally had got back of a 2 week holiday which he felt ill every single day, him and his wife decided to go on a cruise that year, he didn’t eat drink or anything. He had been doctors a few times with this pain, first they said it’s where he was a HGV driver it was a strained muscle. Then he went again told he had a chest infection. Now he was a typical male only went doctors once in a blue moon. Yet that year and a half he had to keep going about this pain he didn’t smoke or anything. On the Friday before he went in his holiday he went doctors and given a course of antibiotics to take with him but the doctor was fairly certain he had a pulled muscle again, he arrived back in uk he flew from Madura back that’s where they spent the last day to be flown back from their, the cruise was continuing on to other countries. I got a Facebook message from a niece asking me to phone her mum ASAP because of uncle phill she said, so I phoned my sister and was told he had been diagnosed with terminal lung cancer, I was in shock because we knew of no members on either side who had every had cancer, when they got him into the hospital his heart was surrounded by over 2 litres of water, it was that why his body started to close down no time for any anesthetiser they cut straight into his lungs in 3 places to drain fluid off ASAP if they stood any chance of saving him. Well they did save him more luck and the sped of he said a little doctor who needed some steps to teach his heart whatever water they where draining it was coming back, after further CT scan and further tests as to why the fluid kept building up, it was during them that they found his left lungs cancerous, it was spreading to his right lung, into his liver kidneys. Also in his shoulder and at the the base of his brain, they told him he didn’t really stand much of a chance. The doctor gave him a max of 12 months, he did say having said that it could be 2/3 or up to 12...... when he was strong enough he would start chemotherapy. That happens a lot apparently. He started chemo for a little while then *** me I was told I had it on the 28 of September I was diagnosed. The Dr was my brothers oncologist as well as mine, he did say it was pretty unusual treating brother and sister at the same      Jenny would you mind terribly if I finished this tomorrow I have started to fall asleep with no warning this just comes on. I then totally lose control I will explain further tomorrow if that’s ok with yourself

Love Marj xxx

Hi Jenny I must apologise for earlier, I know something is going wrong again. In January I had a chest infection. Nothing new now days, it turned to pneumonia as I was starting to get over that I then got pleurisy, that finally was coming to a end and I got pneumonia again. It was from jan until the end of May. I saw my oncologist and had s result of a scan, by now I had got over all the chest problems. About 5/6 weeks ago I woke up feeling absolutely horrendous. It felt like I was running a high fever. I don’t go doctors when I feel ill, I haven’t done since the blasted cancer. Once they told me I was terminal I go even less, I know in reality they are very limited to what the can do. Cutting a long story short I did end up going just over 2 weeks ago I told my GP how I felt like I was running a sever temperature. He knows I see my oncologist in apox 8 weeks now. It’s literally been the longest gap in almost 2 years I had to see him every nine weeks and be scand every 9 weeks. Last time I saw him he was happy that despite all the tumours I have the 7 sessions of immunotherapy had shrunk quite a lot. They didn’t carry on shrinking like they could because Chemo and things like immunotherapy can continue to work up to a year after you have stopped the drugs, in my case it more or less stopped working by killing any more off. However it was keeping it stable. I am under no illusions that everything with myself can change in a heartbeat. It can suddenly take off and go so quickly. It could be dead within a couple of weeks. Just as it can stay the way it is or was when I had my last scan stay stable for another 6/12 months. As god is my witness I am such a unknown to them. They really are in a quandary. They know it’s something in my own immun system.so all the blood I donate to cancer research with some being sent to 3 other countries as well as some stays in England America, Canada, Germany. Uk arevall doing different things with my bloods.  I didn’t tell you, about how my two youngest children. Reacted to me having to tell them my cancer was terminal. My youngest who was she was 19 at the time,she screamed and ran off shouting no no no my youngest son he went very quiet, he’s like me needs to think things through. My daughter came back into the room she would not talk to me. She just kept saying dad tell me you’re lying he said he couldn’t. For good half hour she kept calling her dad a lier, don’t know why her anger was directed at him. Will she talk about it still no, she’s become a mother since she expecting another one he’s due any day now,my granddaughter she’s two in August. I have 5 children altogether, 3 from my first husband. He was killed in a car crash 16 days after his 32nd birthday. 18 days after my 29th and the day after one of my daughters 6th.on the day I had his funeral we should have been moving back to Cambridge, so all Bon all I have had things a bit crap to say the least. When I suddenly cut of when taking about my brother we had, quite a bad childhood. Yet I keep on laughing. I don’t know if you’ve noticed I start to tell you something then I get side tracked. I was telling you I know something is not right. I have oxygen at home anyhow I can be just sat there watching Tv or reading next minute I am almost asleep I do not get any warning it just happens. Done days no one can wake me no matter how hard they try. When I went to see GP first thing he always says is why didn’t you call me out, I say although a lot of time I am confined to my bed, or can’t walk far as long as I can keep coming I will, although my gp is only 5 mins away it can take me a good 45 mins to get ready, then other times I am not quite as bad. My gp always always says well you know it’s  Likly to be the cancer. Yes I do I asked him to run a blood test I suppose hoping it’s my bloods I know deep down it’s not. I always have a scheduled appointment and I always have a open appointment my  GP said I really think you should be using yourvspen appointment. I will write in a day or so, do however remind me to tell you the story of the magic bandana. Also the time I fell asleep having a pee. Honestly. My journey as been full of funny stories that have you almost wetting yourself with laughter. I was going to say tears, I would not be lying yet the tears have never come from me. Now then that’s another story. I will tell you one of them next time a funny one thst is. Be ready and empty your bladder first because I have laughed so much I thought I was going to per me pants a few times lol

live Marj xxx

Hi jenny told you plenty would reply, hope you're feeling well it's a lovely day even if it rains nature's way of cleaning the air. Best wishes. 

Billy 

Hi Jenny I hope you are ok, I say ok knowing full well your not. I suppose I am asking in my own way if you are the best you can be. I just wanted to write to you again because of the 2 messages yesterday having read back on them today. I see I seemed to be in my own world where I just repeating myself. I really really must apologise for that. Sometimes I become so ill that I genuinely don’t actually know I am in my own work, other I can be fine one minute and I get this tiredness come over me that I am totally out of control the  sleepiness takes completely over, its weird because I can sometimes continue to write for a few minutes but it not until after I see I had gone totally on to rambling. I find it embarrassing. Although I do not know I at the time am doing it. I am not a stalker honest m. I just wanted to explain. I  am untying your story because in many ways so far it seems a little like the beginning on mine. I have read your massage a couple of times I don’t know if I am missing it or not. I couldn’t see how long ago you went through that dreadful day. It just turns your whole world upside down, also I am interested because your partner isn’t helping to look after you. I think I may have mentioned in one of my messages although I am married I might just as well be alone for what good my husband does. Regarding depression when I was first told I had cancer no I didn’t really get depressed. I had already had a history of depression, mainly from a bad childhood and being widowed at 29. It was almost 10 years after my first husband died up until then I had been coping. Suddenly out of the blue I started getting strange feelings on my way home from work, I would get to a turning I had to come off at from a duel carriage way I didn’t want to turn off I just wanted to drive and drive and drive until I ran out of fuel. Little did I know that was the start of my depression. Eventually I had a nervous breakdown. If anyone had have said I would have had a breakdown I really would have laughed at them. Most people who knew me would have done too, however I only stayed in physc ward over night, and I signed myself out. Only to end up back in they thought I hadn’t dealt with my past and my first husband death. I knew I had not dealt with his death, I do blame doctors. Because I didn’t cry they got GP out. They shot me up so much with Valium as well as giving my sister a load of them for her to keep giving me as and when. For a while the doctor would come to my house and shoot me up more Valium every 48 hours they did it.not once was I asked and after the first shot  I wasn’t really withit I just remember feeling driozzy and almost passing out. I had never had anything like it before. Over time they just kept giving me and more Valium, tamazapam. Mogodon. Every time I asked to come of one of them I trusted my doctor who always said I was not ready, come the breakdown the second the shrink said the same. A few years went by and one day we had moved house so I had new doctors. I got up went doctors and said please help me come of this crap. They said they had never seen anyone on such high doses. I was on 140mg Valium 140mg of tamazapam, 270mg of attivan. All where benzodiazepines. Highly addictive. They said it would take 3/4 years to come off of them. I decided no way it’s going to be sooner. They warned me I might never sleep normal again and they might have to give me tamazapam back but not as much. I came off that in 6mnts, same with Valium, and about 7 mnts with attivan I was told I probably would be on antidepressants all my life. I did try to come off, only after a few months to go downhill. Eventually I accepted by trusting my GP when my husband died had started a role on affect. I know at one point I had to make a decision one way or another let his death and my past control me or I control what had happened. I eventually grieved properly for my first spouse. Living with my childhood was different. Eventually I put it all away in like box files in my head. Every now and then perhaps one box might slip, and open overtime it becomes less and less. I do know that should they all fall then I genuinely do not think I could come back from it. So with being on antidepressants I think thst helped me. When they eventually said terminal I honestly took that in my strde until my 19 yr old daughter tried to kill herself because she couldn’t cope with myself in this situation. She almost succeeded. For 6 days she couldn’t maintain her own breathing. She had got hold of some of my morphine tablets a slow reacter they admitted they didn’t know enough about them regarding a OD. Then I became more depressed because of my daughter. Eventually she did breath on her own, she still wasn’t right, she started with depression. Until she became pregnant. At first she genuinely said it was the wort thing that could have happened. She would not have a termination and she’s got a beautiful little girl who will be 2 next month. She’s also expecting a little boy any time now. Her due date is 4 days away, as any pregnant women will know any time now. It turned out her having Mya my granddaughter was not the worst thing she did it was the best. She accepts that and I can die a little more st peace knowing she will be devastated but because of her own children she’s not going to do anything daft. There are days when I want everything to end, that’s more now to do with how some of the treatments have left me. I never used to get confused. I hate it. I hate this sleep that comes over me I hate my short term memory losses, I hate repeating myself, I hate the pain I hate sleeping sometimes and no one can wake me up, I hate a lot of time stuck in a bed, can’t get out and I am hooked up to oxygen. If I had have known then what I know now, no way on gods earth would I have had any treatments at all. Yet at the same time it’s brought me so many funny stories, that when I do think of those times I honestly could pee myself laughing. If you decide to get back to this mad woman I will tell you about them. My blood test I told you about but never finished came back satisfactory no further treatment. I knew it would. I don’t need them anymore to tell me it’s spreading. In time you get to feel it. You just know like I do all I have to decide do I want confirmation now or in anot 8/10 weeks. I have told them no further treatment and I have advanced directives and DNRs in place. It time for me to stop being a guine pig for them it time for me to let nature take its course. Although I truly believe we all have a time to be born we all have a time to die. Why I have baffled the cancer world is because it just want my time. No magic tricks they do believe it’s something in my blood and if they can find it and replicate then it may give others a longer life. I hope it is. I also know when I said no more to treatment. It became a big blow to cancer research the longer I live it’s better for them. I have said I have done my bit to try and help, I am also let you take what tissue you want after my death. Now it my time irrespective of what they want me to do. I am going to do what I want. So I decided not to use my open appointment just wait until I see them. I know they are going to try to talk me into further treatments. I honestly do not think I could. Not how I have been left already the way I am. This is not living it’s existing only. Anyhow I have tried to explain properly. So if and only if you choose to get back to me that’s great if not I wish you all the best with your journey. Just somehow find away to make your partner help. Mine still

do much st all love Marj xxxx

Dearest Marg,

Happy Sunday Morning. It was lovely to hear from you so soon, please don't worry about  falling off to slerp, repeating yourself, I repeat myself constantly and I do not have excuse, whatever you want to do, orsay, I am right here for you. Just you do whatever makes you happy for the moment. You have got a lovely grandson on the way, and I am sure the love he will bring with him will lighten your heart, so you still have a lot to live for yet.

I am so sorry you are not feeling well, you have been a fighter all your life by the sounds of it, a crap childhood, a husband who died young, you have brought your kids up and battled depression, and on top of that you battled cancer. So my love, maybe you just don't want to battle anymore, and that is just fine, but please don't be hero when it comes to pain relief, take as much as it takes to keep pain free. F 'ing cancer, can't say why me, because it would only b e some other person..

You wanted to know when diagnosed, 23/9/2018 will never forget it. They brought my orthopaedic consultant to tell me, he had a man with him in green scrubs, the consultant kept saying  "I shouldn't have to do this". When he told me, of course I could not believe him, but the doctor in green scrubs kept asking me if I wanted the PASTOR. I can remember saying why do I want him am I dying now. No was the reply, however they left me and all I could think was, I am not going to make it till Xmas. Like you I never cried. I telephoned people, said I had cancer and put the phone down. A young male nurse came into the room he was from A&E, told me how sorry he was at the diagnosis and asked if I needed a hug. That was the beginning of my cancer journey.

Won't write too much, then I won't tire you out, cos believe me Marj I can prattle on. So speak to you soon. Sending you big hug and kiss

love Jenx

Hi Jenny like you I can prattle too. I actually felt I did have to explain myself as you know until your in this situation and also the drugs you never really are prepared for what’s to come. I think we try and we try are hardest. Everyone with cancer does. Over the years I have done one hell of a lot of research on my own. One thing I have learned if cancer wasn’t a killer I would have to admire its cunning. It’s actually amazing what it can do from a scientific point of view. It’s like it’s got its own brain. What ever our immune system does and drugs to try and stop it, it will disguise itself to look and act like a normal fighting cell it often fools our immune system. On one scan I had, my oncologist said it’s hit a like a wall barrier. However it’s gone in 3 separate directions to find away around the barrier.  It can be so so clever. Yet it’s scary because of how clever it has become. I think your brave, and I hope you stay that way. You haven’t said if they offered any type of treatment to extend your life or not. My advice to anyone is if anything go with the immunotherapy. More so than chemotherapy. There’s a saying in this strange world of cancer, it’s if the cancer doesn’t kill you then chemotherapy will. I actually do believe that to be the case in many people. I know when I started the Doxitaxal that almost killed me, some days I prayed for death to come as quickly as possible. Which reminds me of a funny story, it was shorty after my first session and my friends leslee and I had planned to go somewhere on this particular Sunday. I was in agony but I thought no sod this we are still going. I was told I would lose my hair with that particular drug more than likly after the second session but occasionally it can happen after the first. Anyhow leslee slept in my bad with me that night. I said I am going to have one more coffee then we had better try to go sleep, she jumped up to make it, I said no I will do it because I have to go for a pee so got to get up anyway. As I started to walk to the bedroom door not that steady on my feet, leslee just shouted Marj I thought what the hell is she shouting for I turned round to see her tears steaming down her face, I started to go back towards the bed to see why she was sobbing. She pointed to my pillow, there where massive clumps of hair on my pillow, I had really long natural blond hair. I had already bought a couple of bandanas ready. Now surprisingly I did start to get a little chocked up, I didn’t think I would. I told you I can not cry but do get a bit chocked then my walls inside go up to stop me crying. Anyhow couldn’t do much about the clumps she ended up making the coffee and kept saying sorry, she asked if I wanted to cancel tomorrow. Which was the Sunday I said no I will not let cancer dictate I will use a bandana, while lesllee was making coffee I got a pair of clippers and took the lot of, it was coming out when I touched it anyhow. So next morning got up got ready put my bandana on asked leslee did I look ok she said fine and how nice the bandana was. We got to our destination, although I had to let leslee drive my car because I was feeling light head and didn’t feel safe to drive. Well we got to this place and it was heaving mainly women it was a fashion show. I booked in and said to leslee here goes all the looks, sure enough people where looking. It’s something that really annoys me, I have noticed in the past if the saw people or a child with bandana on people stop and stare. I think it rude as if the person or child don’t feel bad enough. I went to the toilet. I looked in the mirror I thought that doesn’t look right some how, the bandana. It was hardly covering my head, a good few minutes went by I couldn’t work out what was wrong for the life of me. Eventually I just burst out laughing. I had only gone and put it on upside down, I didn’t know never had to use one before, when I told leslee because she couldn’t work out why it didn’t look right either. We where both on the floor in fluids of tears from laughing. I stood up shook myself down took it off and put it on the correct way, I still was trying hard not to laugh st my dippy self. I walked out of the toilets with my head held high, people started to look again. I literally just stopped in my tracks and said bloody magic bandanas that can turn themselves round on your travels, you can all have a photo for a quid each to go to cancer research. Then I just burst out laughing again. I ended up collecting quite a bit of money as it turned out, to took it to the cancer until when I went the following week. I honestly looked a right **** with it upside down, and I swear to god when I just stopped in my tracked I had no idea what was going to come out of my gob, I am just one of those people that speaks before I think. Oh dear, I wish I had got leslee to take a photo of how ridiculous I looked, I always say to her, she was worse than me at least I had a excuse where she didn’t. I still have a titter to myself over that. I can be quite a good laugh, half the time though I don’t realise I am being comical it’s just me. I changing the subject am probably tired of fighting Jenny, I have had to fight so hard in my life, yet I can not bare people to feel sorry for me in anyway. If I am being truthful I wish I could cry, I really do, I would cry for my children my grandchildren. Also what I will miss. But I can’t. I honestly think I have lost the ability. When my farther was giving me a beating, he just came out and said you will cry, I was 14/15 I bit my bottom lip and I said to myself no I will not. No one will ever make me cry again. My brother was begging me to cry so the beating would stop, but no the more he beat me the more determined I was not going to cry and never have since. 

Anyhow let me know if you have been offered any type of treatment. I am getting tired again I look forward to you writing back love Marj xx

Hi Marj, 

You are definitely more chipper today, as usual you made me laugh with your bandana, you must be only silly b... that doesn't know how to wear bandana, reminds me of a lady I met at hospital, she was shopping, when her scarf blew off her head, the only person who stood open mouthed staring was a bald headed man, so she said "mine's cancer what a your excuse" he soon shut his mouth and walked awsy. Before I was diagnosed you would think about cancer, but I never ever expected it to be so many, I could not get me head round treatment rooms people in and out, and so many people in waiting rooms to see oncologists. They once sent me to xxx for radiotherapy, it was horrible there, so impersonal and big, saw consultant who asked me about pain in spine, told her did not have any, so she agreed my immunotherapy was working, and if I ever needed them she would see me. Never went back, they had this thing where they rang bell, it was like a death bell, I asked this guy what is it, was told they rang the bell when someone had finished treatment, they would have been better ringing it when someone was cured

So where I am seen now  it is small but they are wonderful, if you go Wed or Fri you can book in for massage and it is really nice. I am going tomorrow for my 13th cycle of Pembrolizumab (immunotherapy) so far so good, had no side effects and take 40mg zomorph a day, which is the slow release morphine. Apparently, the drug I am on was only started by NHS in September and I was given in early October.Finger crossed tumours keep shrinking, or at least don't grow. My son asked consultant can my Mam be cured, they told him no, we can only prolong her life. So I have to keep battling Marg. 

Well while I have been nattering to you, decided to undo my back brace and trousers. Oh What Heaven, but as I talk too muchm, forgot I had done it, just walked into lounge trousers round my ankles. On that note will say cheerio my love, talk to you soon.

Love Jenx

Hi Jenny nice to hear from you, I did see your message yesterday, however I didn’t sleep on Sunday night for some reason, so when I saw your message I was actually falling asleep. So I thought I had better wait until today before I replied because god only knows what I would have wrote, it probably would have been a rambling of all sorts that has nothing to do with cancer. I was once writing to my neice in a state of falling to sleep, I sent it. It was not until the next day I read it. I was shocked I had mentioned something that had happened when I went to Tesco’s shopping then I was going on about Tuscany and it’s wine. Why I do not know. Things that actually meant nothing to me at the time. Anyhow that was my reason for not having replied. I only remembered you saying about you being on immunotherapy early on until I read you last message. It’s things like that, I find it’s extremely annoying. I have also been meaning to say when you told me about that doctor who you called love too, when he said you have to address him as such. You know I can be extremely quick with a quip back, I probably would have said something like well actually. The name on my medical files are a name that was chosen to protect my real identity. I am actually Thr Right Honourable lady Marjorie Barrington-Black QC as such you will address me as such from now on, or you may refer to me as your ladyship DOCTOR. Honest it is something I would just popped into my head to say, not necessarily what I wrote but something titled. I hate these pompous arses more than anything. I also understand what your saying about not letting myself suffer pain. Just out of curiosity you say your morphine as been reduced. I do hope not too much that you also are not making yourself suffer. When I was first told I was terminal I had not long before been talked into taking morphine caplets it was zormorph I was taking 20mg twice a day slow release ones. Anyhow at first I didn’t actually realise because I had not got fully in control of my pain. Plus distractions is why I missed it to start, within a six weeks to a couple of months. Macmillan had me up to 1,200 mg each morning and each evening now that’s one hell of a heavy dose. I should have seen it coming because I had seen it with my brother. I was sleeping a lot which was not surprising they do it to help you on your way. Anyhow this particular day she cane in didn’t even ask me how my pain was she just started chatting, I am taking notice big time now. It was a bit difficult with the amount of morphine in my system everything took or seemed to take longer to process. Eventually she was taking about a manore if things about cancer, suddenly she said she would have to be going soon when she said I have upped your dose of morphine, I can’t remember how much by I just remember thinking that’s a big jump, she told me it would be ready for collection from my local chemist next door to my GP she will pop it in to the chemist for me, because later that day was her monthly meetings she had with our drs surgery. At first I didn’t say anything I was still trying to absorb the information, and wouldn’t be rushed like I had been before now this leslee was their. I am sure I have mentioned leslee. Well she knew what I was doing. Dian my palliative Macmillan nurse, said is everything ok, because I hadn’t answered I suddenly said no actually it’s not ok far from it. I have just cottoned on how you have been increasing my morphine to such a high dose, while you been taking to me you have been upping the morphine without any consultation with myself. I do know what you are doing you know, I saw what you did to my brother you are not going to do the same with me, so no I will not accept the increase and had I not been ill , you know full well you wouldn’t have got away with it under normal circumstances so I want to know who told you to keep me distracted. Eventually she said she had worked it out not long after she met me, she said for all your humour. When you where serious I realised you are very intelligent. With that I did just say and ?????? She went on to tell me they do not just up morphine to help you on your way she actually denied it. She tried to say we up the morphine so quickly because we are really really trying to keep you as pain free as possible, you have no idea how painful things are going to get in the next months or so. I literally said *** and if iit does then I myself will ask for a increas not you or anyone else just doing it without asking me. I have been here once before with benzodiazepines before. I put my trust in doctors etc last time kook what happened. I have no intention of letting that happen again although it seems like I am half way there. In the end I never let them put my doses up anymore at all. In fact had time went on. About 3 years. I said to leslee well as of yet I have not died why has no one addressed this morphine situation especially with the damage it’s doing to the rest of my organs. So I said I am going to drop big hints about it to see how long it takes for someone to actually click. I did do has I said not one single person said a thing about the dose. So I mentioned it to a Macmillan nurse, because mine was on holiday this stand in just happened to be my brothers Macmillan nurse. I said I know what you did to my brother you know, she said she only did things based on what his wife was saying. She knew prior to coming to see me who I was. When she told me about she was acting in accordance to what my sister in law had been telling her, she really was telling me the truth. I have a psychology degree and can read people so easy if I look. I knew without a doubt she wasn’t lying to me. In fact she was really nice. Because my brother was  sleeping a lot himself they relie on what next of kin tell them. Anyhow I told her I was going to stopnmy morphine she said no for god sake you can not just stop it like that you will be in a really really extremely bad way if you did. Me I am far from stupid although I can sound it, but half the time I speak with humour, and genuinely I didn’t know how to put that bandana on, it wasn’t because I had never ever used them. I went through a stage if using them regular. Now I wouldn’t have had a problem if it had have been made the old fashioned way, they had made this particular one really rather strangely. It wasn’t until I looked at it the day in the toilets when I called it my magic bandana, I saw how awkward to be honest how it had been made, it was far from necessary to make it like that, yet after I had seen it on a dummy head I looked beautiful. Even the colours where not my normal colours, I went on how it looked on the dummy head, it was a gorgeous cream silk material with red flowers on it large flowers not tiny in truth I would not have given it a second look if I had not seen it on the head. It had no back tail like our old bandanas it was all curls up similar to a chignon  hair style and that’s why it was so always to put on. Anyhow she did say I would either have to go doctor or wait until Dian cane back because she was not my regular nurse it was up to one or the other drs or Dian to make changes. I made a appointment to see my GP but he was of for a few days so I saw another GP who I had never met before she had not been there long. Long story short I discussed about coming of or reducing the morphine. She said it would be better for me. So she decided to cut 150 mg twice a day. I told her to hold on and no way could she cut me that much in one go, fortunately for me, when I mentioned it to Maxine brothers nurse she explained why I couldn’t just come if it and told me how it should be done safely. So I told the doctor this. She went with what I said. When I stood up I said you have no idea have you, she made me a appointment to see her in a month with two cut downs if morphine in between. Once I realised she didn’t have a clue. I suggest she had a word with the GP I saw most of the time because I knew he knew how it was to be done. And left. That was the beginning of me coming off morphine. Anyhow Jenny it was lovely to hear from you and hope to hear again soon I sent you a friend request about a week ago, I am not asking you to accept it, I just don’t know if you had seen it. I enjoy writing to you. Oh Jenny I will tell you a really funny story when I was coming off it. At the time I didn’t think it was funny but now well I can’t help but laugh and whoever I tell it too and trust me not many people have u told they curl up laughing therir heads off not at me but just some antics I get myself in so they actually laugh with me. Trust me I really can get up to some dozy things as you have probably guessed by now. I hope you are still keeping as well as you can be under this dreaded cancer as well as can be expected.then again none of us really know what to expect now, perhaps I can get some idea with myself only because I have managed to avoid thinking of the gremlins for as long as I have. Hope to hear soon lots of love, my love xxxxx