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.
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 ****. 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
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 **** 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
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
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.
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
I am not having any luck replying to you, spent 10 mins chatting to you on another chat thing, but hey presto it all dissappeared. Firstly,, I did get your request to be my friend but did not have a clue how to accept so I just kept replying to your messages this way, know it is not private but if anyone wants to read our ramblings their welcome.
Secondly, cannot believe the amount of morphine they had you on God it's a wonder you could speak or function. All I can tell you is that they would ask how much.liquid morphine I had taken and adjust my Zomorph accordingly and I don't think that was ever done by a nurse. I cannot remember what dose I was on but decide on 8th December 2018 I was not going to take anymore liquid morphine, I told consultant that I used it to make me sleep, she told me At least I was honest. I then proceeded to lower my Zomorph 10ml at a time. What a ******, then arthritis pain came back in knees, but still kept on decreasing, until I got it down to 20ml morning 20ml evening. I sometimes take a little liquid morphine if I get pain in spine, but then don't know if spinal pain cancer or the arthritis. I also wear a brace to protect spine, eat your heart out Anne Summers it is so sexy, I put in a t shirt then the bra'ce then my clothes, I look like the Michelin Man, and in this weather, it is so bloody hot wearing it, can't wait to take it off after tea, but then Iam like some old lady having a good scratch after taking her corset off. But As I say don't care what I look like as long as I am alive and kicking.
I am going to sign.off now as this bloody thing keeps stopping typing, don't know what I am doing wrong, will write a little more later, have told you before technology and me do.not mix well together. Will try and chat later, at present cansmell dinner have to go and sort it out.
Big hug lots of love Jenx
Hi Jenny, awe bless you with having to wear a back brace. I do hope you did get one from Ann Summers, if they sold them that is, or did you end up getting a sexy corset instead. Lol no seriously as you say with the weather it really must be extremely uncomfortable. It’s true what you say why should you or any off us care what we look like, being alive is the most important thing. I used to be a person who would not step out of my door unless my hair and makeup was done. Yet after being diagnosed with cancer, what a turn around. I no longer put makeup on unless I am or was going anywhere special which truthfully last time I wore it was 3 yrs ago. Now I am often in a night dress or a dress that’s keeping me cool. I don’t worry how I look at all. It was nice to read you had got your head screwed on regarding morphine. That’s the kind of attitude I had. However being truthful I do believe because I had a prognosis that in some ways I was duped I say that purely because when chemotherapy almost killed me is when I wasn’t with it mentally and I know at that time I wasn’t in the slightest bit bothered what they gave me. I would have agreed to anything to have taken how I was feeling away or even let me die. Oh believe you me I payed for death to come and take me out of the situation I was in. No that was a very slow recovery. Eventually when I got to a point I could finally get about a bit I put my fighting hat back on, but I was sleeping so much, I had my morphine upped at home by a prescribing Macmillan nurse I didn’t click to start with how much and every time she came my doses kept going up and up I believe it’s because I was sleep a lot, plus not being with it. I had liquid as well as zormorph I used to be given bottles of oramorth concentrate so every 5 mil dose actually was 100mg of morphine. Eventually I stopped the liquid and when Macmillan tried next time to up my dose I said no. Everything was starting to click back slowly but surely. I then made a appointment to see my GP he was on holiday and I saw a new one. I told her I wanted off some of the morphine. Cutting a long story short she decided a dose to lower it by so I would not have too many side affects also she told me to bite a 100mg capsule in half, I just looked at her gone out anyhow she gave me a look of expectancy. I suddenly found my voice and said you do not know how to reduce it do you, and regarding biting a capsule in half I said have you lost your mind, it suddenly dawned on her, I then went on to tell her the dose she suggested to reduce it morning and evening was ludicrous, unless she wanted my climbing ways thinking I could fly etc I had once discussed this with Macmillan about me stopping suddenly well actually I had 2 here that day they both replied with raised voices not in a nasty way said no you can’t just stop like that, you will find yourself crawling around in a right state you will start hallucinating in agony seeing things that where not there. actually quite horrific side effects. So I ended up telling her how to start reducing it. I also suggested she spoke to my GP when he came back, theirs no shame in not knowing if you have not come across it before, I had a appointment then to see her in a month. When I went back I just said have I got a doctor who knows now what she’s doing, she was a bit huffy over what I said. She said actually I do I googled it. It really could not believe she had used google rather than ask another GP for advice. So I said to her I take it then you have got someone on standby in case my depression comes back which it’s likely too and you also have a pain management services ready also with a psychologist etc ready. Well she looked extremely uncertain about what I had asked her about, so again I suggested that she should ask my own particular GP she reduced it to the amount I told her too so a telephone appointment was made for one months time, I just asked in the mean time I suggest you talk to DR ....... and see what I need in place. With that I left. Now I do know there are two types of addictions. One being a physical addiction one being a mental addiction. On paper although I wasn’t actually addicted to it, I had to be treat as one of the 2 because of reasons of coming of it. It works in different ways well I should have been a physical addiction because I was not a junkie and it certainly was not what I thought about first thing in a morning I need !!!!! Far from it. Those that wake up feeling I need they are the ones who had become addicted to heroin with heroin being a opiat same as morphine the two Macmillan nurses said coming off it, if I did it too quick besides the side effects I had already been told about, that it would also be like a heroin addict coming off it. Which trust me, being compared to a heroin addict definitely did not sit well with me. Come the following month when this doctor phoned I told her again how much by and also asked if she had spoken to Dr ........ she said she hadn’t had the time. Now what I hadn’t told her it was classed as a physical addiction because of them and pain where a actually addict was the other type, it’s one of the first things that should have been discussed. At the start, so I didn’t need mental health involved although I had, had this history with depression I didn’t need psychologist invoked or anything like that at all. All I needed was for regular phone contact in case I had have suffered any type of problems coming off, basically regular watching. The next month she didn’t call so I ordered what I wanted and decided to do it alone, because this silly cow of s doctor did not have s clue. I knew I could have spoken to my own GP but he’s such a busy doctor I didn’t want to put on him especially has some doctors had retired 3 almoyat the same time he was busy with trying to replace them, then another partner she went on maternity leave literally leaving such a big surgery with only 2 doctors and a locus at that time. Talk about bad timing with 3 doctors retiring within a month of each other. However that’s how it was. I will write another message in a minute to tell you about a story that happened when I was coming off of it, i dont know how many words it going to take. At the time it was far from. Funny but now, I think back parts of the story was probably the most I have ever laughed so much about. If I get held up in writing about it just check you messages later tonight or tomorrow, my granddaughter as been up every afternoon this week until about 7ish. My daughters due date is Sunday but we all know it could be anytime now. She’s having problems putting my granddaughter lifting her in and out of the bath because of her bump. Gina is not a big girl at all so this bump looks absolutely massive. Normally she a size 8 clothing and about 5’4 in night a little dinky thing really, she was born a month early. She most definitely was and is the smallest in the family. Mind you what she’s lost in night she certainly makes up in other ways, she’s doesn’t take anyone messing her about, she’s not aggressive or anything but she’s gives her opinion if she feels she needs too. I can remember taking her to the doctor one time after she had her tonsils out, she was in pain I told her to take paracetamol. No she wanted to go doctors well when the doctor said same has me about taking paracetamol. She stood up and told the GP she didn’t know what she was doing. I was so annoyed the doctor said if she carries on take her A&E just to make her sit there for hours to see if she liked all the waiting. I said well in all honesty I know what it like and I certainly didn’t want to sit in A&E for 4/5 hours. So I said I would just to call her bluff. oh my god that turned out to be a mistake I ended up taking her when she was seen this doctor told her to take paracetamol and also gave her antibiotics in case of s infection. Well all the way back home she was on about how she said I told you the doctor didn’t know what she was doing didn’t I. Talk about a headache he never told her she had a infection he said in case. Would she take that bit in no chance, she kept telling me he said she had a infection. He hadn’t anyhow she was only 15 coming on 35. What my biggest surprise was she hated taking medication. I was a adult when I had mine taken out, now personally I didn’t find the pain too bad, then again with my dad etc I had built up a high pain tolerance. I will leave you for now and I will send you another message tonight about what happened Re coming of morphine. Try to take care Jenny and I hope you have got it over to your partner yet he’s your career not the other way round. I keep on trying with my husband. Sick of saying it so many times in one day for almost 6 years now. I wish you better look. Lots of love Marj xxx
Hi To My Lovely Marj,
was just going to carry on from yesterday's message when saw you had replied. So read your mesage. I just want to say I was gob smacked when you told me the McMillan nurses said you did not know how bad the pain was going to get. ***** you don't want to know that, we know we are going to go one day don't need gory details. I am so pleased when McMillan nurse knocked on my door, told her straight away do not mention death of anything related to it. Her name was Sandy, she was a Liverpudlian and we had a really good natter, never seen her since, she rang before Xmas and I told her I was fine, so please go and see people who need you. She spoke to me again in Feb. Telling me I had made her week, she could not believe how I had reduced my morphine, said my treatment must be working, and that they were signing me off their books, but if I needed them just to ring. Finger a crossed not had to call yet.
Regarding my sexy corset, went to have my treatment on Monday and there was this lady, I think it was a first treatment as had family with her, well she gets up from chair and proceeds to fasten her corset, which is exactly like mine,! over her clothes. Maybe I have been doing it wrong all these months, don't think so, couple of weeks all the Velcro looks like ****, the whale bones start coming out and it looks ****.
The taxi driver who took me to hospital the other day, was a lady, when we got there she said you have made me cry, made me laugh and made me cry laughing, cannot believe that I am dropping you at Oncology, but whatever's you have they should bottle it and give It to everyone, one of the nice things been said to me lately.
We have a great charity here called Cancer Cares, it really is wonderful. So off I trot this morning to Tai Chi, the poor instructor must despair at me, cannot co-ordinate my bloody feet with my arms, I am stupid when it comes to left and right and then on top of that I have to breath. Say no more I am a dissaster. Then we go for a cup of coffee after, think it is more about socialising than exercising. Tomorrow massage day, can't lie in table so just have to sit in chair, so maybe I can have Indian head massage or maybe my feet done will let you know.
as for husbands, just cannot be bothered anymore, came home today really good mood, and said 'wish I could live today and not have to live tomorrow, then I know I can't get any worse. ' I thought that was a very simple thing to say however, was informed don't be stupid tomorrow always follows today. See what I mean I give up, I don't even get cup.if tea made for me anymore. So Mar,
j will just keep going on and not waste my breath trying to make him care.
Hope everything going well for your daughter, and good for her she stands up for herself, in this world speak your mind, I have always been peace maker never rocking the boat, but no more, for whatever's time I have,will carry on saying what I want. It must be delight having your grand daughter coming every afternoon, like I said the other day 'I am not ready to l leave my boy yet ' and neither are you.
send me a story as you always bring sunshine to my life.
Oh Jen you are a angel really, you make me laugh with you saying about you can not coordinate your hands and feet etc. However everything you do sounds so positive. Even chatting to the lady taxi driver. I love what she said to you whatever it is you have to bottle it for others. I find it’s inspiring to meet so many cheerful people who are suffering with this dreaded disease. I must live in the most miserable county in England. I am being serious theirs so many miserable people when I attent the cancer clinic or treatment. Ok it’s no fun I agree, yet in my opinion a smile or a quick chst is far better for themselves than this why my attitude. I say the opposite why not me. I am no one special. I know this is going to sound absolutely awful I can get so angry sometimes when I hear this why me, I told you I was 54 when I was first diagnosed. On talking to my consultant one day he says you always seem cheerful. I just laughed and told him I felt lucky in many many ways where he said from what you GO has written it sounds like you have had a pretty rough life, yet you feel lucky, I said I do, ok I have had a chance st life although I am now coming up to the age of 55. I turned round and said I get upset over children and babies who get cancer, what chance of a life have they had. None. So those who sit there crying and asking why me, should actually give a thought to perhaps that 3 months old baby and younger who have got it. They are so so young to me that’s what makes life unfair not me being my age them poor poor children. If I have upset anyone should you read what I have put, I will gist of all not apologise for my own way of thinking. Plus I am explaining something to a friend and I am not ever going to be made to feel bad for how I think, I do think of the babies and children before someone who’s had a half decent crack at life. Sorry about that Jen with it being a open forum I could have upset people because of my attitude. However it’s who I am. Anyhow I will tell you about what happened one night when I stated to reduce morphine. First of all when I found it difficult to get upstairs we had our garage turned into a bedroom with its own bathroom. Walk in shower and everything. Just so it could all be ground level. So that’s where I spend a lot of time. I told you that for a reason. The reason being everything is so easily accessed for me. So here I am still angry that the stupid doctor had not had the decency to call me again for the second month. When they are actually supposed to be monitoring my progress. I am ordering the quantity of zormorph and doeses without any question. If I had have tried to take the dose up they might have been in the phone, but no question because I am coming down in dose. Being careful not to do it too quickly so I don’t suffer to bad of a side affects. After about 3/4 days is when you start to feel the affects of reducing your dose. So this day I start to get that shivery feeling in the morning and other little symptoms. Now this can go on fir a couple of days getting worse as the time goes on, nothing I couldn’t cope with knowing that it will be gone in a day or so until my next reduction. Well this particular night about 11.30is pm I am not sure if I had taken my evening dose, which was unusual for me to not remember or not, now I am still taking a extremely high dose something in the region of 1800 mg, so as you know it’s a massive dose but still reduced quite a lot. I would not take anymore just in case I had already taken it, I want to come down not take double. Sometime in the night I woke up to go for a wee, I had been having a bit of a problem being able to pee, so sometimes I could be sat trying to have a pee for 15/20 mins or self chatherter. I didn’t want to do that when I went into the bathroom first thing I hear is the cat, I didn’t bother to turn the lights on they where on in the other room so I could see fine, I have this oval wicker basket I use as a laundry basket. So I see the cat sat in there having had her 3 kittens, I sat on the toilet, thinking damn what am I going to do. I can’t move them because she might kill her kittens, wondering how she even got into my room in the first place. I must admit they looked so cute, on closer inspection. I felt quite awe bless you type of thing like how cute looked, so there I am completely in taken now by the cat and kittens. Gone out of my mind was what I was going to do about not moving them anyhow still hadn’t had a pee, it’s getting extremely painful now, I stopped looking at the kittens and sat back down trying to have a pee, I can just see the top of the kittens heads. I looked at the cats face when suddenly. I say to myself they are not real I am hallucinating surly. Anyhow I keep telling myself I no longer have that cat she passed away in 2002 no she’s not real nor are those kittens. Until eventually I do not know what’s real or not. Suddenly I wake up I realised I had fell asleep I thought a couple of seconds. On the toilet. I am asking myself how even for a few seconds did I almost fall asleep on the toilet, I could still hear the kittens and see the cat thinking how nice it was and how pleased my daughter would be to see that molly the cat had given birth to the kittens at last, knowing she would be annoyed that molly had given birth to them in my bathroom. As I am starting to stand up my leg gave way I went flying across the floor feeling myself going down I sort of twisted myself so I would not land on the kittens and hurt them. When I eventually got back to bed my left foot was in agony, now not being able to get help by going upstairs. I tried phoning my children to wake my husband up, I gave up after about 200 calls to both I managed to get myself into the car, it’s a big 4x4 jobby and it’s manual hmmmm. I drove myself to A&E to find out I had broken my foot in 3 different places. They realised I was on my own so they asked how I got there, I told them I had driven myself, now before anyone could have a go at me for having driven a manual car with a broken foot I just turned round and said it’s fine my cars a automatic. They no longer plaster much these days, so they wrapped it up in the bandages they now use for a break, off I went and drove my manual back home. It’s not the first time I had driven with a broken left foot and drove to be honest. I am cursing the bloody cat on my way home, I got home it’s alost 6.50am it turned out I had been hallucinating and further more I had fallen asleep on the toilet for over 2 hours, I can not have taken my meds that night and the only thing real about it was the broken foot me me having driven myself there and back to the hospital. At the time I was certainly not amused. Now I do actually think it’s funny, I swear to god those kittens where real. I literally would have gone into a court of law and sworn on a bible that the cat and kittens wherevreal, had anyone said otherwise at that time I really would have gone absolutely ballistic because people would have been called a liar. I maybe be many things I would say but a liar is not one of those things. So all in all I never ever want to experience anything like that again at all. Eventually I was completely freed of morphine. When my own GP realised, I did say to him in affect I could sue that doctor for not having kept her eye on me. He asked why I had never asked for him. I was being perfectly honest when I said I didn’t want to put on him with him trying to sort the surgery with having him to sort out new doctors with 3 retiring in such close period of time. I never saw her again I did say no way was I going to sue them. I am not like that. Oh Jenny going back to that night of hallucinating. That just after was scary to think what I could have ended up seeing or doing because I had made a massive error by not remembering if I took my meds or not. Overall though I am glad I came off such a high dose of morphine. I made them think twice before they ever did that again to someone else. I will write again in a day or two, having my granddaughter as been amazing this week, problems was I over did things again and now paying the price.
Lots of love Marj
Happy Sunday Morning Marj,
Any movement yet re. your daughter, know today is the day, you could become a gran again. Hope everything going ok for her, tell her I am sending her all my love.
loads of points I shall be commenting on.
1. I have to be careful what I say, I now know cannot mention hospital names, cannot take lords name in vain , and cannot swear, I am sorry I do not mean to offend people it is just me, talking to my friend.
2. What miserable county are you from, mine is probably just as bad as yours. I do have to agree when you go for treatment or hospital waiting rooms, people do not chat, but it does make the time fly, and at some point it makes you feel better. I talk to anyone, and it is usually me who starts conversation. As I have not.lived here.long, do not have any friends, so it was lovely you calling me your friend, actually feel as if we have known one another for ages and we are old buddies.
3. Come off it Marj, don't tell me it was coming off morphi one made you sleep on lavvy for 2 hours just take more water with whiskey next time. Only you my love could hallucinate kittens and sleep 2 hours on loo, then get up fall, break foot and then drive herself to hospitall. Where there's a will there is a way. Should not have laughed as you hurt yourself, but did have good laugh. Made me think of time I was on strong pills the doctor told me to take one, if pain really bad then take two. They were tiny red tablets so I took two. Next thing, I am on my own howling with laughter at anything that came on TV, that was ok, but I had to go to the pub Thank goodness only had to cross road, got inside and prayed no one would speak to me as I knew I would just start laughing, cut 'long story short, got what I wanted came outside but could not get home, literally less than minute walk, had to sit on stone wall, till I saw my son, he was 11, he had to get me home. Never took those again. However, they put me on OxyContin ended up taking 200mg daily for sciatica. Had to get myself off them not easy, doctors did not help, just like you, but I did it, that was 14years ago, and I actually say I have never been happy since I stopped taking them. So my love you are exceptional what you accomplished, and everyone should be proud of you. And if anyone does read what we chat about I hope they realize what a brave courageous woman you are, I sure as hell am proud to have you as me friend.
3. Aren't you posh, having the garage converted into your own suite of rooms 'Oh Ia.lah ' not like me, hospital bed in front room, downstairs lavvy in garage, have to go upstairs, to shower, were I have to climb on kids chair just to get in bath to have shower, now that is what I call posh. So they lock me in front room, but they still have a lounge with log burner.in kitchen diner, and we eat in conservatory. Marj always, Where there is a will there is a way.
4. I totally agree with you 'Why Me' I remember thinking that one day for only a minute, then thought if it is not you it would only me someone else, so it is me live with it, and do not be selfish. What you say in 100 percent correct.
5. The Massage. Had me legs and feet done very very nice, felt I was walking on air. Shame I had to come home go to supermarket, then back to town shopping, make bloody dinner, By 6pm legs and feet killing me, looking forward to going to bed. Next week going to try head massage, I will keep you posted.
6. Got to tell you this, hope it does not get censured because this happened on Friday. There I am on Friday, waiting for the bus, to bring me home with my shopping trolley (cannot believe I have one of those things but needs must) when this nice lady starts talking to me, asks how I came to live here, asked in I had cancef,told her terminal. She said it is written the day we are born and the day we die, I replied, yes I think it also says the same in other religions. She replied Christianity is the only true religion, as Buddah and Allah are dead and ours is alive. Well if you could have seen my face I was completely dumbfounded at what I had just heard, she then said to me ***** is still alive as he was ressurected. Oh! OK. She then squeezed my hand, told me God had another plan for me, as I am not dead yet, and if I would like to come to church it is in the school hall at 11am Sunday. It had been a pleasure meeting me and she knew she had met me for a reason, she proceeded to get off bus. I carried.on to my stop still in state of disbelief. (Marj I am not religious in any way, and whatever floats your boat is fine by me, but please get facts right) Mind you it did make me laugh all the way home.
Going to close now, as I do seem to meet my fair share of weird people, but it is what makes the world go round.
Lots of love, big hug
Hi Jenny first of all my apologies for not having wrote sooner. I have and still am extremely unwell. It was nice to read your message by the way. You said you have not been where you live long. So are you actually a Lancashire lsss, or from another part of the uk. I live near Leicester now. However born and bred Yorkshire. Although you wouldn’t believe if you heard me speak. People think I am a southerner. I know when we moved back to Leicestershire from Cambridge people used to say how posh we spoke especially my children. With them being so young they soon started to speak like Cambridge people. With the elongated Aaaad as in baaath not bath. I found it funny really how posh my children spoke, still do really. Now me I never went out of my way to get rid of the Yorkshire accent. It happened because coming from Feathrstonr near Pontefract and Wakefield and Barnsley was close by I had a pretty broad accent. Also like a lot of northerners spoke very fast. It was only because people generally could not understand. I was told many time to speak slowly and say my words in full.wich I did but only to people I liked. In time it was a brother said you’ve lost your Yorkshire accent I said I hadn’t but in reality I had. More so when we moved back to Leicestershire. It’s so strange because I feel the same as yourself as if I have known you years. Something just clicked, between us. However I am glad it did, I enjoy chatting to you. I will say now I have been meaning to tell you that I have bad periods of times of when I feel unwell my body sort of closes down for awhile. I will fall asleep for up to 22 hours a day. When I do wake up. I can be back to sleep within less than half hour or so. When this happens sleep is in control of me. Not me in control of the sleep. Also sometimes no one can wake me, oh they do and I will say ok I am coming next minute I know I wake up a say or so later. I absolutely hate it. This started with the immunotherapy. It’s one reason i stopped. It wasn’t living it was just a existence. No, and no signs of my grandson yet. Yet my daughter looks ready to pop, with her being a dainty thing. Typical male to lazy to want to come out yet. Lol. You say you shouldn’t have laughed over my kittens experience and falling to sleep on the toilet why not. Even through i I broke my foot later on I found it hilarious to be honest. I am glad I only saw the kittens, there was so much more I perhaps could of seen to say I was grateful would be a understatement. The cat I did see was a cat we had years ago, who got run over back in 2002. When I think about it. With whatever I saw was obviously from my subconscious. I was just glad it wasn’t my late husband. Now that really would have freaked me out. Just seeing how real the cat and the kittens where. Anyhow I told you about that story because it was funny. Oh god have I had some laughs on my journey. I am glad though. I would hate to be like some of these miserable buggers in this county. Hopefully they do not strike the county out. Although I do not see why we have more than 2 major hospitals in the county. Also where I actually live I am eligible to go to Nottingham or Derby. Each of those have more than one hospital each also. This is a reason I sent a friend request because you can send private messages that no one else can see. Oh I did mean to say when I fell asleep on the toilet it really was morphine not whisky unfortunately. I say unfortunately because I do not drink any alcohol at all. Oh Jenny believe you me I have certainly tried just about every alcoholic drink you could mention. When it came to what I liked, it actually turned out to be none of them really. Once in a blue moon I may and I do mean may half half a glass of larger. I can not have anymore than half a pint. The taste became vile if I try to drink more. It’s annoying because I always end up being the driver home and dropping of a couple of friends. I did used to like wine until one night we had friends round. I used to be a member of the Sunday times wine club, whoooo now that sounds posh not my little bedroom in my old garage. Anyhow we had friends round one night. We where teaching them to play poker. Neither of them knew how. I ended up drinking 7 bottles of wine when my friend said are you ok, as I said yes. We’ll talk about projectile vomit lets just say no one out of the four of us missed out ha! Ha! Ha! Now your story about the lady you met. Although I am far from religious, I have always thought our fates where mapped out for us depending on which road we Choi’s when we come across the cross roads of life. Each toad leasds to different lives different destiny’s. We a time to be born and a time to die. I can not explain why I feel so strongly about that because I really really not religious in any shape or form. I had such a simpler thing happen to me. Best not mention the name of the supermarket. I was around the pet food area looking at some new dog food that had not long been on the market. I had a boxer at the time. Now this little elderly chap asked me if I could pass him some Tim’s off the top shelf. Now being tall at 5’8 he was about 5’2 so I passed him the tins he asked for then suddenly our hands touched slightly he suddenly took my hand and said stop tormenting yourself, your husband is at peace. Wow that made me feel as thot someone had just walked over my grave and the hair on my neck stood up. I told you about doctors shooting me up with so much of the benzodiazepines. It suppress how you feel. I had wondered if he was at piece often to tell the truth. This guy had never clapped eyes on me or me him. I didn’t even live in the same village where I did when my husband died. He also asked me to attend the spiritualist church on Tuesday evening. He said I had the gift. I only had the heebie jeebies not a gift let me assure you. That really was freaky. Accept my friends request or you send me one that way we can say certain things because it’s private between you and I. I will write as soon as I can Jenny with feeling unwell at present.
Lots of love and big hugs to you
Sorry I have not replied sooner. Just typed 3 paragraphs and they have just dissapoeared. Not very happy as not fastest typist in world, and I am sick of this machine putting in words it thinks I have typed, technology and me.
Yes I am a northerner, 100%. Born Lancashire lass, Maggie Thatcher changed county boundaries and I became a Cumbrian. Spent 20years there then became a Nomad. Lived Khartoum Sudan, off and on 10 years (happiest years of my life - the last time I woke up opened balcony doors, looked at River Nile and thought it is good to be alive) wish I could get that feeling back again. Lived in London, then moved north, to a lovely village, back South to Surrey, then back North to Heysham, wanted to move again as not happy here, but got cancer and here I am, getting to like it a little better, the people are lovely and friendly, and of course cannot move because of treatment.
Never ever lost accent, and the only people took p... is Londoners and I would say may have accent but at least I know I belong somewhere as the only real l Londoner is cockney. In fact once a partner where I worked wanted me to work for him, but I would have to change accent. So one day while relieving receptionist he rang in, I put on my telephone voice, he wanted to know to whom he was speaking, I would only reply co. name, 20mins later he walks through door, and I just smile, think he called me a *****. Never did accept his job offer, the moment he said about me accent wanted to tell him to shove his job, so stayed in Advertising Dept, where I had loads of fun.
Cannot believe another week has passed the time flying. Have to tell you went to dentist Wed. (One of my biggest fears) but have to go because the bone injection I take can do something to my jaw. There I am sitting in waiting room, with one man one lady and myself all waiting to see same dentist. I am a nervous wreck have to speak to someone take mind off things, start talking to both, the lady about her dog the man was a different case. Told us it was his birthday and he was 55, Hapoy Birthday we reply. Next it's my birthday I am 55, he kept on about being 55 and how old he was and was so miserable. I am sorry what I said next and I have never said anything like it before.but 'Try being 65 and dying with cancer ' Bombshell, the lady looked at me and asked if it was true as I looked so well, yes I told her and I am on immunotherapy, conversation changed. Man was going for dinner and friends from church were making him a cake. Lady came out of dentist, gave me a huge hug and told me I was inspirational, when I came from dentist man, shook my hand, and asked if he could say a prayer for me in his own time, of course I replied Yes, told him to look after himself. Back again in November, promise won't drop anymore bombshells.
Went to Tai Chi again yesterday, I swear I did really good with my arms, not so good with feet, but I think I will get there in the end. Came home and melted, I cannot do with the heat, and this rain every evening at 6pm just makes humidity, and me melting more.
Cannot wait to hear when your grandson arrives, think of your daughter often let's hope he is here already or very soon. Having to close now as have to get ready going for massage and the driver picks me up, so have to be ready. I know you are very poorly at present Marj. and my arms are around you giving you a big hug, my wonderful brave friend.