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  • FIRST POST
    • Dreamnine
    • By Dreamnine 2nd Jun 16, 12:48 PM
    • 7,921Posts
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    Dreamnine
    The post I didn't want to write: I have lymphoma.
    • #1
    • 2nd Jun 16, 12:48 PM
    The post I didn't want to write: I have lymphoma. 2nd Jun 16 at 12:48 PM
    From last Monday to 8:00 am this morning when I abruptly quit, I was in the Western General Hospital's urology dept. undergoing tests. I never do well in hospitals and, just like last time, the morphine, tramadol and finally oxycodone pills gave me terrible hallucinations and delusions. I could barely eat or sleep, concentrate or enjoy any part of the experience.

    Underwent various tests - the final one of which (this Wednesday, I'm not excluded) should give me an idea of the type of lymphona and appropriate treatment.

    I knew I had been out of sorts since just after the new year. Still, despite it being a sunny afternoon I know I'll get 4 hours straight until the pain starts again. Saw my G.P. this morning and am seeing her again tomorrow first thing.

    None of this I find particularly surprising, or sad; it's simply part of life.
    Last edited by Dreamnine; 06-06-2016 at 4:27 PM.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
Page 35
    • Dreamnine
    • By Dreamnine 8th Mar 18, 8:00 AM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    Just to reiterate and for those not familiar with this thread. in June 2016 I developed Hodgkin's Lymphoma which has an 85% survival rate after 5 years. I spent 2 and a half months in hospital - that long mainly because I developed Delirium. I then underwent a 13 week chemotherapy course, was scanned and my cancer went into remission.

    This year on 26 February, after a biopsy operation on my spine, I was told that I now had non Hodgkin's Lymphoma which is incurable yet treatable with radiotherapy and chemotherapy. I was only in hospital for 10 days due to the lack of any mental health problems. I was treated with steroids, radiotherapy and have had my first session of chemotherapy which is every 3 weeks. So that is where I am now. My G.P. was talking of palliative care in the long run which scared me a bit; I guess, though that she was only being pragmatic. I could have months or years left, no-one knows.

    I try and stay upbeat, haven't always been very nice to people on the forum which I regret; but this thread has been very helpful to me.

    A couple of photos: The sun rising over Arthur's Seat from my hospital window



    The trip down to radiotherapy was always good as there were open boxes of chocolates the staff had left out: presents from grateful patients:



    I was allowed out several times a day for a 10 minute vape - the hospital staff knew I was reliable and it was a chance to catch up with and meet other patients.



    Food in the hospital was terrific - they have their own kitchens and always cooked everything from scratch. The fish and chips, apple pie and custard on a Friday was heavenly. It was the first time I felt safe and enjoyed a hospital stay even if it dealt a bad diagnosis. I was in from the 7th to the 17th of February.
    Last edited by Dreamnine; 08-03-2018 at 8:51 AM.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Alikay
    • By Alikay 8th Mar 18, 8:31 AM
    • 4,766 Posts
    • 12,871 Thanks
    Alikay
    Sorry to hear you're back on the cancer treatment treadmill, Dreamnine. Sounds like you're in a better place mentally this time though, so hope that continues. Wishing you the best of luck and hopefully there'll be plenty of good weeks, days, hours mixed in with the inevitable challenging ones. x
    • Flick216
    • By Flick216 8th Mar 18, 8:34 AM
    • 7,954 Posts
    • 32,301 Thanks
    Flick216
    I'm so glad you got your thread back!
    ENFP - Assertive
    Officially in a clique of idiots

    Smoke me a kipper; I'll be back for breakfast
    • OldMotherTucker
    • By OldMotherTucker 8th Mar 18, 9:30 AM
    • 7,555 Posts
    • 16,777 Thanks
    OldMotherTucker
    I would not beat yourself up OMT, I suspect it had nothing to do with that, probably just went by accident as part of the SPAM bashing
    Originally posted by colinw
    Getting involved in pm wars and repeating offensive language is never a good thing.

    Dreamy and I have never been at odds against each other - even though we can both be a bit outspoken!

    Glad the thread is back though - this is what the Arms is for!


    JTA I've never sent an abusive pm myself - always say my bit on here or log off!
    Should have joined Borrowmydoggy.com
    • Dreamnine
    • By Dreamnine 9th Mar 18, 7:16 PM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    I've been feeling incredibly rough after my Chemo on Tuesday; I don't think a single (although) long session has quite taken it out of me before.

    Very exhausted - going to the shops is a real pain, extremely tired (I look forward to 8 o clock which has become a reasonable bed-time, and a bit ill in general with queasiness and diarrhea. I've never been on these particular chemo drugs before. I don't have another session for nearly 3 weeks but have appointments with 2 consultants before then.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Tarry
    • By Tarry 9th Mar 18, 7:36 PM
    • 10,661 Posts
    • 23,773 Thanks
    Tarry
    Hope you feel better soon, Nothing worse than feeling sickly.
    The Very Right Honourable Lady Tarry of the Alphabetty thread

    -I just love finding bargains and saving money
    I love to travel as much as I can when I can
    Life has a way to test you, it's how you deal with this that matters
    • Dreamnine
    • By Dreamnine 10th Mar 18, 1:09 PM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    I found out that since I left hospital I've only been taking 15mg of my anti-depressant instead of 45, so switched back last night. The hospital could only have been using 15mg tablets and I just assumed 1 tablet was my regular 45.

    Well I slept better and feel a little more sprightly today, so that is part of the reason why I've been feeling rough.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • jayII
    • By jayII 10th Mar 18, 4:08 PM
    • 38,158 Posts
    • 107,075 Thanks
    jayII
    Hi Dreamnine, I've been following your thread but I haven't posted before.

    I'm glad you found out why you were feeling rough and glad you're feeling better now.
    Fighting the biggest battle of my life. Started 30th January 2018.
    • Torry Quine
    • By Torry Quine 10th Mar 18, 6:08 PM
    • 17,171 Posts
    • 26,532 Thanks
    Torry Quine
    Glad you realised the problem with the dose.
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
    • Dreamnine
    • By Dreamnine 14th Mar 18, 11:58 AM
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    Dreamnine
    I spent another 2 days in hospital with neck and back pain - Sunday - Tuesday. They couldn't decide whether to give me another MRI scan or not so released me but they then phoned up with an MRI appointment for next Monday.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Dreamnine
    • By Dreamnine 30th Mar 18, 3:20 PM
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    • 13,405 Thanks
    Dreamnine
    Just out from a 15 day spell in hospital. They basically opened up my neck at the same site to see if it was infected as it felt like it was.

    That turned out to be OK but I developed multiple infections in hospital - was put on a lot of drugs, some of them intravenously.

    Am home now, with the caveat of having to take all my tablets (and there are many).

    I next see the Consultant on Tuesday coming and he'll tell me when we can restart the interrupted chemo. I really don't feel well at all. Today I was sweating just walking the 500m to my GPs to drop off a letter.

    So I'm in the house with the heater on, a hot water bottle and simply catching up with what I missed on the internet.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Torry Quine
    • By Torry Quine 30th Mar 18, 5:55 PM
    • 17,171 Posts
    • 26,532 Thanks
    Torry Quine
    Glad you're home. Take care
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
    • Alikay
    • By Alikay 31st Mar 18, 1:26 PM
    • 4,766 Posts
    • 12,871 Thanks
    Alikay
    Poor you - sounds like you've had a miserable couple of weeks. Hope you'll be more comfortable at home, even though you're still feeling rough. Watching TV and clicking around the internet will help pass the time more pleasantly than being in hospital. x
    • Dreamnine
    • By Dreamnine 10th Apr 18, 8:45 PM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    Having overcome my infections (after taking many pills) I restart my chemo tomorrow. I'm OK but still feel quite fatigued at times.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Torry Quine
    • By Torry Quine 10th Apr 18, 9:22 PM
    • 17,171 Posts
    • 26,532 Thanks
    Torry Quine
    Thinking of you and hope all goes well tomorrow.
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
    • Tarry
    • By Tarry 11th Apr 18, 1:55 PM
    • 10,661 Posts
    • 23,773 Thanks
    Tarry
    Thinking of you
    The Very Right Honourable Lady Tarry of the Alphabetty thread

    -I just love finding bargains and saving money
    I love to travel as much as I can when I can
    Life has a way to test you, it's how you deal with this that matters
    • Dreamnine
    • By Dreamnine 12th Apr 18, 7:41 PM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    Well, I got through my chemo OK but I needed a blood transfusion of 2 units. They say that my bone marrow isn't making enough red blood cells which explains why I'm exhausted just walking to the corner.

    I've still got many scans, appointments and more chemo ahead. Should be finished in July.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Dreamnine
    • By Dreamnine 13th Apr 18, 12:40 PM
    • 7,921 Posts
    • 13,405 Thanks
    Dreamnine
    I visited the nurse at my G.P. surgery.

    She took off the final dressing on the back of my neck where I had the two operations and it's healed fine.

    She then injected me with a drug I've had in my fridge since receiving it from my chemo on Wednesday. Into the top of the arm it went.

    Then I had to make appointments to get bloods taken 2 days before each upcoming chemo session - they can't use blood that is too old; it's just to tailor exactly the drugs they need to give me.

    Then I visited the chemist to pick up a prescription and hand in a new one.

    After that, I visited the deli where I bought a roast gammon and salad sandwich and a BLT. The gammon sandwich was too dry and not worth the money. I have higher hopes for the BLT which I will eat for my tea. I'm putting off grocery shopping until tomorrow as the supermarket is in the opposite direction.

    I also visited the vape shop for my favourite juice.

    It's still cold and damp here with that East wind so I've got a hot water bottle and the heating on. I decided that as I'm ill I'm not going to be counting the pennies concerning my utility bills - my comfort comes first.

    I slept well last night even though I slept through part of the day too. Today I'm aiming not to go to bed until 9pm, but I'm still knackered, especially when I'm walking outside.

    I've been spending a fortune on taxis and deli sandwiches and overpriced Co-op groceries. I cant realistically get the bus to the hospital, though, as it's some distance to the nearest bus-stop, uphill, and I have to stop. And I can't get down to Tesco and do a big shop - I'd much rather make my own sandwiches. But, again, my comfort and convenience comes first when I'm ill. Spending a lot of money annoys me as I'm normally pretty frugal and save up regularly. I really pity those people who have to travel 40 miles to the hospital for their appointments.

    I've no appointments 'til the 30th but after that my diary is loaded, MRI scan, CT scan, nurse, the Consultant and more chemo. I'm hoping to use the second half of April to relax and hopefully get a little better.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Dreamnine
    • By Dreamnine 15th May 18, 10:35 PM
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    • 13,405 Thanks
    Dreamnine
    I had a 5 day spell in hospital last week using the drug methotrexate to see if they can stop the cancer spreading to other places. I have to go back on June 21st for the same procedure and stay.

    It was a miserable time with me hooked up to machines all the time. Then yesterday I had another MRI; on Thursday I have a CT scan; on the 22nd I see the Consultant where I will find out if the results are positive or not.

    I've been pretty poorly, not managing to walk far without having to stop frequently to catch my breath. On the way to the chemist there is a bench outside the mosque and I always stop there on the way and on the way back. On my previous 2 chemo sessions they gave me a blood transfusion of 1 unit as I can't make enough red blood platelets.

    I've taken to having all my groceries delivered by Tesco and this has proved a lifesaver as I can no longer make it down to their store. In 3 deliveries they haven't made 1 mistake; everything I've ordered has been spot on and the price is fair.

    Still trying to beat this thing although it's incurable. What really tires me out (although it's necessary) is the sheer number of appointments I have with the hospital, I've grown to hate the place and the necessity of getting a taxi there and back each time. When I was healthy I would often walk to the Morissons near the hospital and back with 2 heavy bags, a distance of 5 miles and with me hardly breaking a sweat. I've applied for PIP as someone suggested I should be entitled to the mobility component and this will help me with the taxi bills. I've not been working much as what I do requires a lot of concentration and I tire after half an hour.

    I survived my first cancer in 2016, but this one is heavy going.
    Last edited by Dreamnine; 15-05-2018 at 10:40 PM.
    I shot a vein in my neck and coughed up a Quaalude.
    Lou Reed The Last Shot
    • Sleazy
    • By Sleazy 16th May 18, 2:19 AM
    • 8,616 Posts
    • 14,161 Thanks
    Sleazy
    Best wishes Dreamy and thanks for the update.
    Strangely enough, I was thinking earlier that I'd not seen you on the forum recently.
    Hope that you get positive results on the 22nd!
    Sleazy
    In Vino Veritas, In Aqua Sanitas
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