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2nd Transplant and my daughter is so ill

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  • Hi Michelleleeanne,

    Please ask your consultant about rezurock as 3 years on same meds and not much improvement it may help more.

  • I’ll mention that thanks Dave ❤️

  • Hi Beaglegirl,

    I don’t h think your parents will know my mum she spent most of her time around Lostwithiel and Lanlivery areas. However she does live on the mount above Par in I believe over near the ECLP buildings above thier railway line. My sister is moving down this month from the reading area to help my mum as she has recently shown signs of possible dimensia. I used to go years ago to wilf husbands barbers in par to get my cut but I believe his daughter Lisa took over years ago. I used to go to Fowey comp years ago and then my parents moved me to Penrice but all the time I lived in Lostwithiel.

  • God it’s a very small world. Mum and dad live overlooking the beach at Polmear. Lisa use to cut my hair and Wilf use to cut Martins 🩷 better than Jocks on Par Green. I went to Fowey School too and then when I graduated I went back and did a bit of supply teaching there. Never again it’s become really awful. A lot of my school mates are from lostwithiel too I also worked at the golf course when I was studying. It’s all closed now and made into houses.

  • Hi Beaglegirl,

    I guess we probably know a lot of the same people and I guess Martin did as well. I have kept a particularly low profile now with this gvhd as I don’t really want old friends contacting me in the state I am in, I want to be recovered a bit and in a fit state to drive down and see everyone again. I feel a real mess at the moment and I know I will not really improve until I can get some more mobility back. I don’t think I will know you due to the age difference when I was living in Lostwithiel but my last wife was a year younger than you. Yes I have been married twice unfortunately but due to my cancer and gvhd the second one ended abruptly. I guess Martin had his sct’s in Treliske.

  • No his first transplant was at Bristol childrens hospital. Then the second was at Derriford as they now do unrelated donors. I’m sure your friends would love to see you no matter what. Although it’s how you feel about yourself if you’re not up to it. Did your last wife go to fowey school? Sorry to pry but im just so surprised that you went to the same school etc. tell me to mind my own business im just like that 🙈

  • Hi Beaglegirl,

    No my last wife was not from here. She was from Moscow in Russia, we met online. Unfortunately she was always depressed and never really worked as she could not really handle it. She used to shut herself away from the world and I thought I would be able to help her enjoy life, but she didn’t wish to change and spent every day in bed when I went to work and was up all night most of the time on Facebook. She was not a horse person she was more into cats. My first wife was from Plymouth but we sort of married for convenience more than anything else as my mother was going to marry or move in with a fairly violent man and I was living with her at the time and I would have to live with them so I had to find an escape. She, my first wife was married to a marine in Plymouth who kept trying to strangle her so we basically moved up country to Bristol area. We lived together for eight years but were quite different people and not really for each other. It is a shame really how my life has gone as I always wanted the sort of relationship you and Martin seemed to have had. I went out with many girls while in Cornwall and after but never found that soulmate. You were very lucky and so was Martin.

    with regard to friends, I am not ready for them now as I am such a mess and cannot do much for myself currently and am always so fatigued. When and if I improve and get to the right stage I will be down to rekindle friendships as I seemed to cut everything off while married.

  • Oh goodness that sounds awful! I met Martin when I was 17 first ever boyfriend and we spent everyday with each other since. I was extremely lucky to meet him and there is no one on this planet that I would want to be with other than him. He did everything for me. I just can’t accept he’s gone as I can’t live without him. I just don’t know what’s going to happen. I just wish I could go back in time to see if I could change anything so this wouldn’t have happened. 💔 it’s complete **** life is so cruel and I don’t understand why some people just have all the bad luck. I hate leukaemia, I hate hospitals but I would do it all over again if I could have him back with me 💔

    Stay strong and hopefully you’ll turn a corner soon x

  • Hi Beaglegirl ,

    I am with you. I hate cancers not just leaykemua, I hate hospitals or being in them as inpatient however they do help as much as they can to keep you health tosh. I too wish I could turn back the clock so I did it have this gvhd. However we cannot do that. I feel like I am living in a nightmare and hoping it will end. I know your reasons are different but unfortunately we have to move on however difficult things are. You are so lucky to be in a way where you are currently are with lots of lovely places to go and try to take your mind a bit off things. I really need somewhere like Cornwall for my recovery when I get and if I get my mobility back as I need to be outside in the country to clear my head due to the phycological issues gvhd has caused me. They say cancer causes many psycological issues but the gvhd and poor mobility has caused me more.when I get my mobility back etc and can drive back down to Cornwall I must buy you a coffee at the crown.

  • i can walk outside and look right over at Helman Tor but to be honest fresh air nor the country are helping at the moment. I understand though if you can’t get out it’s so frustrating as if you’re imprisoned in your own home. I can’t bear staying indoors but when my world ended I don’t see the point of even getting out of bed. 💔 my friend runs the crown now it’s completely changed! If you can remember the horrible cold conservatory it’s been totally revamped. I just can’t believe what a small worlds it really is. Take care of yourself Dave

  • Hi B,

    I can imagine how you feel wanting to stay inside and not want to go outside when you feel you have no pint. This is how I feel at the moment when I can hardly walk due to the tight skin. I feel like I am also going to fall down as I walk like peg leg. When I am ready I will again. I am fighting on.

    I used to spend many hours at the crown with family or friends and spent many times in the conservatory. Unfortunately my grandparents are buried the other side of the road in the churchyard. One of the last times I visited lanlivery was for my grandmothers funeral. Do you showjumping much there as I did not really know of any equine centres around there mind you when I was in Cornwall I was never into horses then, however my oldest of 2 sisters was always off at stables in Lostwithiel and my mother and grandmother also rid a lot. My grandmother while she lived in Lostwithiel also used to have her own tb.

  • Hi Audrey,

    How is your daughter. I hope she is at home. I think the last thing I heard she was in hospital due to an infection or a virus. I hope she is doing better now and not having many gvhd symptoms. How are you generally as I know the past couple of years have really taken a toll with your son no longer with us and your daughters issue. Luckily she pulled through from the condition she was in.

    Hoping everything for us all improves this year.

  • No there isn’t any SJ aroun. The closet is Colraine in Truro or Talltrees at Davidstow. Was your grand parents from Lanlivery then? Yes the stables at Lostwithiel would have been St. Veep at Lerryn? Do you still know anybody form Lanlivery? There are still a few around that have had horses Mr Langmaid, Mr Truscotts daughter. Did you know Jon Vincent at Colcerrow farm? He’s been there for years and years and Don Marshall at Redmoor.

  • Hi Beaglegirl,

    My grandparents spent a lot of thier life in London, but when they retired they followed my parents to Lostwithiel. Later years they split up and one moved to par and the other stayed in Lostwithiel even though they spent most of thier time together.

    I when younger had my first farm job close to you working on a yrs scheme years ago working on a dairy farm rented by a Headley wells. I used to also know the turners who were into horses but not very well. Russel Turner, Cheryl turner and Lucy turner I believe. I know the Langmaid’s very well but unfortunately Carl has not been with us for years due to his liver failure. I know Steven, Andrew, Carla , Keith out near at veep and his wife Carol, Christopher and Trevor. Andrew still lives in lanlivery with his wife Sam who unfortunatelyy years ago had a stroke. Can I ask which of the Langmaid’s do you know well or did you know well?

    My sisters used to go to 2 riding stables in Lostwithiel maybe they are no longer there. One was just down the road from down end garage near saw mills called miss owe’s and the other was at the top of Grenville road owned by a Jane brewer but they were really just there for livery and riding lessons. No real jumping.

  • I use to jump a horse for Headleys brother! His farm is just down from Jon Vincent’s. Russell has got the pheasant farm I don’t know Russell that well but I do know Jo who married Brian worth. I’m friends with Emily their daughter.I only know of the langmaids as someone I know had a horse from them years ago. Did you know the chapmans they are dairy farmers near us. I think Jane Brewer was before my time as I can’t recall that name.

  • Hi Beagle girl,

    The names all ring bells but I never reall a lot of them that well. My sister has friends Jessica Nicolls who married a Nathan Perkins who her parents owned the farm at the top of Bodmin hill, also an Alison Lee who lived on the Bodmin road a little bit further up. I know the reeds who were at Trevithick farm on Lerryn road, a colin Vincent out at st veep who used to make good cider as well as Keith Langmaid at st beep Carl’s brother. I also knew Linda Vincent Colin Vincent’s daughter.

    Now you will be able to find out who I am. The horse I drove up from Cornwall to Clevedon the unbroken tb was from Carl Langmaid on Ruzza farm. My mother married Carl as her last husband before he died. Unfortunately he liked his whiskey and when he drunk which he did often his mood would change and become quite violent. As a child he often pinned me against the wall as a child as he often thought people were laughing at him. He often put a gun to my mother’s head and beat her knees with a hammer which is why she also has massive mobility issues now. He was the person I wanted to escape to moving to his farm when my mother moved in which rushed me into my first marriage. Hey ho that is life. The reason I moved out of Cornwall even though I loved the life.

  • no I don’t know who you are and I wouldn’t ask anybody anyway! But that’s very scary how close they are to me and what’s the chances of me speaking to you on here?? I can literally walk to the back of my garden and look at their place. I have heard was a bit of a character shall we say. Sounds like your mum is better on her own. I’m sure the lady who I knew Debbie Phillp had a horse off Carl call Philly? I might be wrong. Their place wasn’t far from John Truscotts

  • Carl had many farmer friends around that area I know there was a Morley Richard’s as well. I met a lot of them. He was as gold when he did not drink spirits he was the friendliest person ever he would often walk into a bar and buy everyone a drink and laugh and joke. Yes a real character. His first wife Jane left him due to his violence and she became a real mess due to this and his sons and daughter also suffered badly due to his drinking. My mum loved the farm / small holding way of life. I often went to his farm to help with potatoe picking. He did know the confirmation of horses well as when my ex wife saw this tv she was in love with him so I bought him from Carl. It is a shame the effect whiskey had on Carl as he would have been a great person without it. Before Carl got his farm he used to live in Lostwithiel down by the river and spent most of the time in his butcher shop he used to have in the town at the bottom of Fore street. As a teenager I spent a lot of my evenings clubbing at Bentleys and quasars which as you know are no longer there. That reminds me I also knew Doug honey another farmer our near st beep who always like going to quasars for the company.

  • Hi B,

    it is quite funny as you said we know the same places and a lot of the same people. It is sort of reminissing with someone you never met. However not much really seems to change in Cornwall. One think I used to hate you could never find a garage or supermarket after 10pm and when I moved to Clevedon years ago it opened a new world to me with garages and supermarkets open all night. However nothing compares I think to the beauty of Cornwall and the sense of community.

  • Yes Morley Richards they still have the feed shop up at sweetshouse. Mark his son’s daughter Amy has horses. Omg quasars think I went there once or twice trying to sneak in underage. I took Martin there once but he wasn’t impressed. Did he run the butcher shop? I never knew Martin was a slaughterman and knew most of the farmers and butchers around.

  • hi B,

    carl used to own / run the butcher shop at the bottom of Fore street, then we he had the farm he passed this on to his son Stephen. When Carl died Stephen shut the shop and bought into the boat trips in Fowey. Harris butchers was always there at top of fore street. However Carl was often unethical and killed a lot of his own products however I think a lot still came from Abbatoir. When I went to Bentleys before it was quasars I think I always snook in as was underage. I used to live to stop on par moor for a burger at zippeys burger wagon before driving home on nights out.

  • Hi B,

    I guess Martin’s worked at the abbatoir on cooksland industrial estate in Bodmin. I worked for a while at TJBrent who were also based there as well. My sister also worked at TJBrent until she married the managing director. Now this sister lives in Exeter.

  • No he started at Lobbs at Ruthernbridge and then spent 20yrs at RJ Trevarthen at Roskrow nr penryn. He travelled everyday rain or shine on his motorbike. He never missed a day he was such a hardworker.

  • Hi B,

    Penryn quite a long way to go. However I can’t say much as my last job in Cornwall I used to Truro. I worked for ICL part of Fujitsu and was based at Cornwall county council offices in Truro as worked in IT. I was with them when I transferred to our Bristol offices as they were short of staff. I have got to admit I have always worked but since I have had gvhd I cannot and I feel really bad I cannot work. I wait for the day I can work again. Not working makes me so anxious and relying on universal credit is always so worrying. At least you can to a degree control your own destiny. I have hardly ever been ill and I did lots of overtime in the past and at the moment it is difficult when you have no purpose. Waiting to restart life. One place I also miss is going to the rashleigh at polkerris and looking over the sea. Whenever as a kid I went to the beach there I loved to help the guy on the beach with his skiffs and boats.

  • That’s my brothers mate Richard harris who had the shop in the beach. He use to sell wetsuits and stuff. Can you not get PIP in stead of UC? It’s sounds like you can due to your mobility. What do you do in IT? That’s what my degree is and I taught Business ICt and French

  • Hi,

    I get UC and PIP. The pip is because of my immobility and UC for the rest. Many people are entitled to both.

    In it I started off as a hardware engineer when computers really started coming out and used to repair printers, computers, mainframes etc as ICL being a British company got most of the government contracts so I worked repairing computers for Cornawall county council, the Cornwall district councils, dhss, tax offices, eclp when it was a lot larger, st Austell brewery, snw homes in st. Austell to name a few. When I moved to Bristol area I moved into our retail arm and looked after tills and servers etc at rolls Royce, Mac Donald’s, Sainsbury, somerfield, b And q. Many brewery chains including whitbread and st Austell ales, many hotels and restaurants. I later moved to Mallorca by myself and built up my own it business there looking after a load of expats and foreign expats and local Spanish. When I moved back to UK I then started contracting to Siemens bank in London and Siemens financial services in a user support/ server support / network support roles. I used to carry out a lot of admin / support on the servers and network, upgrades, project planning, managing the phone system etc so I changed from hard ware engineer to a more maintenance upgrade role including fixing many vulnerabilities that are always occurring to reduce the risk of being hacked. It is while I was working for Siemens I ended up with my blood cancer bpcdn which is a bit like leukaemia.

  • Hi B,

    after the many jobs I had in Cornwall I needed a change I direction which is when I went back to college in Torquay to take up an IT course which is when I got into IT and while I was rhere I applied for this IT job in Truro.

  • Night night all, xx

    Just had a good read of all the updates and info... what a wonderful bunch we are. Will chat sometime soon, off in the morning to the clinic.

    Love

    Helen

    Liam_at_AnthonyNolan
  • Hi Michelle, Helen and Dave

    i just want you to know that I think about you every day and very much hope that you can get some relief from the horrible symptoms that you are all having to put up with.

    Michelle, I think of you all as my friends and I know that the others feel the same so you have lots of people who care here . And cups of coffee would be lonely without our wee group .

    Hi Beagle girl

    The what ifs still gnaw away at me but I try really hard not to let them take over . I heard yesterday that the whole of Paul’s football team went to a bench which his work mates erected for him and many tears were shed .

    My daughter’s friend sadly passed away a few days ago. She had blood cancer and seemed to get infection after infection. It has really hit hard as it’s so close to home . I think whether you are a patient or a loved one , this illness has such a huge impact on our lives .

    You will get through every day and that’s all you can do at the moment.

    if you want to private message me , my name is Audrey McGlade so just search .

    Sending huge hugs to everyone . ****

    Liam_at_AnthonyNolan
  • Hi auds

    I’ve sent a private message enjoy your coffee going to have a biscuit this morning ❤️

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