Dilemma - to read & post or not to?

Hodgkin lymphoma

A group for anyone affected by Hodgkin lymphoma to get together, ask questions, share experiences and support each other.

Dilemma - to read & post or not to?

No. of entries: 17 | Posted on 24 Mar 2013 04:11
  • Very recently I was diagnosed with Lymphoma - which means either Classic Hodgkin or Non-Hodgkin.

    I was earlier discharged from Hospital (although I had to stay overnight) having had a 90 min operation to remove 2 lymph nodes from my neck for further analysis.

    The problem is - I was a nervous wreck! and it most definitely came across in the pre-op questions being asked beforehand by the Nurse, Anesthetist & Surgeon involved.

    I had to be heavily sedated before I could even be anesthetized - I was given x2 10mg tablets (of some sort) which basically knocked me out completely - hours before I was due to go into surgery.

    Everybody - Friends, Family, Doctors, Nurses have all been telling me the same thing - I've read too much! - too many horror stories! - and need to stop! before I become a Manic Depressive!

    I remember telling the Nurse beforehand - that besides reading up (using Google obviously) for details about this particular type of disease - I mentioned I had also joined the Macmillan Forum for sufferers etc to share their thoughts & stories in order to help give their support & advice.

    Although I've not read a great deal of posts from this forum - the one's I've read so far contain a great deal of negative things like - the many bad side effects of having chemotherapy or stuff like painful bone marrow tests or people who've had short remissions & then head back onto another dose of chemotherapy or posters who've been in remission for a matter of years (what 2, 3, 4, 5?) and how they're happy to still be in the land of the living! - what's a few years when you could of been saying 30+ if it hadn't been for Lymphoma!

    Anyway, the Nurse's point was just this - in a reassuring way she told me that support forums are basically for people to go to and vent their grievances or unjusts - to tell their story of how they'd been hard done by or how someone might have a bigger story to tell than that of another. And that those who aren't having a remarkable time whilst still being sufferers have little to say (because they are busy getting on with their lives) - so don't bother posting or reading such forums in the first place!

    Is that really true? - do any long time sufferers who've been in remission ever come back to post many years later? - does anyone's chemotherapy treatment ever go by pretty much uneventful? - are there any happy posters around here for genuine reasons? Is there more to this forum than doom & gloom?

  • she was so wrong on chat we have people who have been in remision for years they come back and suport those of us going through chemo and the like also we try to stay positive ok there are times it gets heavy often when some one is caring for a loved one who is terminal and are desperate also we had young lady last week who had bc and her mum had died of it she was convinced she was going to die as well we convinced her that treatments have changed so much in the last ten years that she will more than likely kick it into touch. i am sorry you feel a lot of the posts negative most i have read are positive good luck hope all well pop in chat decide for your self val

  • Hi, As a mother of a 20 yr old who was diagnosed all I wanted was to meet and read about success stories. We only seemed to meet people with complications!! and like you I picked up on bits I didn't necessArily want to hear about on forums ! My son never went near the forum-didn't want to know! And still doesn't ! I do believe that many of the straight forward success stories are getting on with their lives and don't post on the forum. My son followed the rules laid out to him during chemo, had few side effects, kept his hair, played golf most days and has been in remission for 9 months now. You seem possibly in limbo at the moment as you don't have a definitive diagnosis or staging. The biopsy will tell the type of lymphoma and a scan will reveal the extent of the lymphoma so it can be staged. With HL the treatment seems to be the same whatever the stage, I cant comment re non HL .To be honest the limbo stage is probably the worst bit. Rose
    Rose Waterworth
  • Hi Gwizz

    In my time I've known literally hundreds of people all over the world who've had Hodgkin's and I'm still in touch with many, who I class as good friends now rather than something as twee as "fellow survivors" or what have you. Incidentally, while some have passed on for other reasons, I know precisely zero people who have died from this disease. Zero.

    I'm somewhat of a weirdo in that I've now heard those fateful words three times (in '02, '07 and last year) and my "survivor friends" have all been just as horrified as my "normal friends" when they've been told my news. They might think about it every so often when something brings it to mind - for example when Andy Murray's mate got diagnosed with Hodgkin's recently - but for the most part they're just living life with no thought about the fact that once upon a time they had cancer and that's the reality of it.

    Being on a mailing list/forum like this is a huge benefit for people who're in either the situation of being all rabbit-in-the-headlights like you are, in treatment and able to compare notes with others in the same situation, looking after somebody who's going through it or getting back to normality after it's all over. Once it is all over, you *need* to move on and it's so hard to do that while still reading every day about it so people who are in long term remission (I prefer "cured") hardly ever stick around.

    Clearly, your reading has focussed you on threads with titles like "OMG! Nasty side effects!" and the nurse you spoke with hasn't read it at all so between the two of you, you've made a skewed image of what goes on but there are positives, honest. It is *far* from all doom and gloom.

    Yes, cancer is a really scary word and without treatment, given enough time it'll kill you. Typically the treatments they use to get rid of it are a bit more badass than Lemsip so come with some occasionally unpleasant side-effects. Most people get on with it all just fine though. I'm not exceptional in any way; I worked all through my first line treatments - chemo and radio - and was never unable to do anything I wanted to do.

    I know you're in that horrible limbo place. There's nothing more scary than a fear of the unknown and there's a whole lot that you don't know and can't know until you've got something definitive to work with. All I can say is that if you end up with Hodgkin's, you will be welcome here, will find great support and will before long be looking to the future rather than seeing the risk to it.

    Ian

  • Nurses always say forums are just horror stories - but in general medical people hate patients finding info out on their own (or self diagnosing) and sometimes for good reasons. I myself knew nothing about anything to do with Hodgkin's and reading posts and chatting enlightened me to many things and I was able to ask for tests and ports that I otherwise wouldn't of got. So that's a positive :) I'm not going to lie, if you have cancer and you need chemo it's not going to be all flowers and rainbows but it doesn't have to be awful either :) I've had all sorts of side effects but I'm still pretty happy at the moment. I have days that suck but we have those even when we don't have cancer. Ok, maybe not as many, but it's all manageable. But you are going to have to try and relax a little, maybe ask to see someone at the hospital that can help you with your anxiety? Because if you scare yourself too much and get too anxious, you may cause yourself more harm than good. I know it's hard but to get through this the best you can, being positive and optimistic really does help. Law of attraction and all that. And you have the massive benefit of being a man ;) how I wish I could of been a man at times! But seriously, it's not all doom and gloom! And FORCE offer all sorts of support for you. Maybe check into FORCE and get a relaxing massage? just please try and concentrate on the positive! You have to just take what life gives you and do the best you can with it. Good luck

    EXPLORE. DREAM. DISCOVER

  • You know - I think what's happened is, I've read so much stuff from all over the internet including this forum that I've not managed to cipher through all the positive & negative in equal measure. It's like I've not read between the lines - I've only remembered all the negative stuff first & foremost and anything positive has been pushed back - I guess this needs to stop & that's what people mean when they say "try to think positively"

    I've since read some reassuring messages and comments - thank you!

  • You see what you want to see. That's the case in most things. And by positive thinking, I would also refer to the belief you will get through this, no matter what. And that you will be a survivor and that however bad it gets you will get back up again. As Confucius said, the greased feat of man is not in never falling, but in getting back up again when we do. It's true that people die but there's more chance of dying in a car accident. But you still get in a car right? Because you believe you're going to be fine. Put the same faith in this :) you cannot control what's happened. You cannot change it. The only option you have is how you handle it. And that will make a big difference to your life. Trust me. And the funny thing is, all this bad stuff, it can make you a better person :) nurses and doctors aren't always right and I doubt many of them really know if these places help, because they've never had to come here. So do what feels right for you. If it helps, it helps

    EXPLORE. DREAM. DISCOVER

  • I am of much the same opinion as Rowbow, read or ignore as much or as little as you wish, there are those of us still here as our loved one is still battling through after 8 years o battling  this cruel disease called cancer (our daughter) . I suspect that the nurses have seldom, if ever, seen the support that happens, especially for that 5% who do not get into remission after the first 6 months or so of treatment. 

    There are also those like Ian who are here to help others, while hopefully having support himself.....there are also those who have returned to give everyone with classic HL a mental kick-ass message, after a year since she began treatment, like Lizzie. 

    I wish you all the best, keep posting or not as you wish

    hugs xxx

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