Dearest Marg,

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 buggar, 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. Jesus 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 crap.

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.

big hug

love Jenx

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 Jesus 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

Jenx

Hi Marj,

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.

Love Jen