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

Dilemma - to read & post or not to?

  • 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
  • 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
  • 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
  • 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

  • Thanks for comments - a lot of good sensible advice!

    Following last weeks biopsy to remove some lymph nodes from my neck - I was told today that I had "hodgkin lymphoma" & not the non-variety-type. I was also told that no other tumors were found in my chest or armpits besides those on one side of my neck. This would lead me to believe that I'm likely to be at stage 1 - although I've still got a ct abdomen/pelvis scan to do next week.

    The thing is - I was led to believe (google) that when this disease is at its worst - (when it reaches stage 4) - it's already spread to other parts of the body including the bone marrow.

    My concern is - the consultant told me I needed to have a "bone marrow biopsy" & this would be booked within the next couple of weeks before a course of chemotherapy could be started.

    Having looked at several "youtube videos" - there's no way I can have that done without being fully anesthetized beforehand. At the moment my stress levels are sky high - just the thought of it - the pain & anxiety doesn't bear thinking about - I'd rather not have it done & won't have it done full-stop.

    But if requested - can I "definitely"? be fully anesthetized (as I was for the biopsy) & not just given some sedatives/pain relievers to make me drowsy?

    If I'm not going to be fully anesthetized - I can't have it done, I won't be able to go through with it. If I refused & didn't go along to the appointment - would I then not be able to have the (much)? needed chemotherapy? because I won't be classed as fully staged?

    If I didn't go through with any chemotherapy treatment - is that the only course of action for "hodgkin lymphoma"?

  • Welcome to the world of Hodgkin's! I was stage 2a and didn't need a bone marrow biopsy. The drs tend to believe that if blood work is fine and the tumours haven't spread far that bone marrow tests aren't needed. If you do have one, you'll get offered gas and air and a local anaesthetic. Maybe a light sedation but I was told this is not available (so was very glad not to have it done). To be honest though, if you need it you need it. And it's something you may have to grin and bear. But i have heard its manageable with gas and air. But you may get a light sedative if you prove very anxious. I only got a light sedative when I had my embryos removed and I can assure you that that is far more invasive! Hurt a bit but I didn't care because I was drugged. Gas and air works in the same way. Without treatment your prognosis is 2-3 years. So perhaps speak to someone of your anxieties and, again, don't read too much about anything negative! There are a lot if horror stories. I had my port surgically implanted with nothing but a local. The local hurt but after that, it was fine. I was scared but once you're in there it's sort of like, well I suppose I best do this. Pros outweigh the cons. I apologise for my honesty but there is little point me lying as that won't benefit you. I'm very sorry you ended up here but if you are stage 1 (which is likely if no nodes are active in your chest etc) then it's very curable. I had a node in my neck and a tumour in my thymus. The thymus didn't show up on a chest X-ray but did show up on a CT. also, if you request a PET scan, this can show if you have active bone marrow without anyway invasion. So maybe discuss that option? But please arrange to see someone to help with your anxiety. Chemo is not easy sometimes and you will benefit from being more relaxed. As mentioned before, contact FORCE. They offer free counselling, massages and all sorts. Even acupuncture! And try and avoid scarring yourself! We all get upset and scared and pissed off. I had chemo yesterday so probably am not in my best mood haha but vent it the best you can and try and stay positive! If we can all get through this crappy time, you can too :)
  • Hi Gwizz41, I had my bone marrow biopsy 5 days ago. I've HL same as you waiting to find out my stage also & had my first chemo yesterday.

    Whilst it wasn't in my top ten of fun things to do I found the not knowing worse than the actual biopsy.

    Start to finish 20 mins, I had two local anesthetic injections in the base of my back which were uncomfortable but bearable I had the option of gas and air.

    The actual biopsy was just someone pressing hard on my back and side again uncomfortable but bearable, i also had a stabbing pain at the back of my knee.

    Everyone is of course different, I don't like needles but its a discomfort you soon forget !!!!!!!

    Ten mins later i was walking around, my back was sore the next day but fine.

    20 mins of being uncomfortable, to find out its not spread to your bone marrow, that's got to be worth it. 

    Finding out information is great, but maybe for you you tube is not the best way.

    As i said looks like I'm just ahead of you in my treatment so any questions ask away, when I've been worried about something I've asked on this forum and had some great answers and advice.

    Stay strong,

    Cliff

  • Can you speak to your consultant or nurse specialist about the bone marrow biopsy?  Or maybe give Macmillan a ring?  It may be that there are alternatives to a biopsy, but they're not that bad (I've had several, and turned down the offer of sedation on the last one - it's not especially painful).

    They can be done with sedation.  I don't know of a physical reason why they can't be done under a general anaesthetic, but doctors may be reluctant to do that - people tolerate the procedure OK without needing general.

    Is there anything particular that you find scary about the procedure?  Maybe if you find videos make you anxious, that might be something to avoid (I must have had over 100 blood samples taken now - I still can't watch :) )

  • Hello, I have spoken to lots of NHL patients locally who have had a bone marrow biopsy, (daughter ( with HL ) insisted on heavy sedation, and got it, in fact at one point she was so sedated she called a wheelchair a wheelbarrow!) I think the sensation of pain really occurs if the doctor performing the biopsy rushes at it without waiting sufficiently long enough for the local anaesthetic to work fully. ..........They have all talked to this doctor, he now waits and everyone who has had this done again say how very much easier and virtually painfree it is as a result. So if you feel you need sedating too, then ask, I would guess they will try to persuade you not to, but if you insist I think they would have to do it! ........Again, I would think if you have a PET then you may not need it, however should you be having anything as a part of trial meds then that may be in the protocol. Hope all goes well for you, keep posting......hugs xxx
  • Another thing that helped daughter ( who is as big a hospital-phobic as I think you would ever see!) is a quotation from Winston Churchill 'if you're going through hell, keep going!' .......hugs xxx
  • Forgive me for bumping up my own thread - although we're all basically in the same boat - at this moment in time I have little to offer because I know so little - although I sympathize with those on this forum & their own personal dilemma.

    I'm sure in time - when I've been through whatever procedures are necessary I'll have more to add for those asking the questions.

    The quote from Winston Churchill - although it sounds good, I just don't see how I'm able to apply it or make sense of it in any meaningful way.

    I'm sure I have a very low pain threshold - I've always been acutely aware of my surroundings and will not let an accident just happen! - I've never truly experienced any worthwhile amount of pain throughout my entire life!

    I once fractured my wrist when I was 13 years old & then fractured my ankle when I was 15 (but as a kid I managed to deal with it) - but that's about it! - besides having (3) separate teeth removed at different times at the dentist's over the past 25 years (although - anxiety, stress, depression etc all played their part) - I once sat alongside the outside wall on the street to the dentists surgery for 1/2 hour after a tooth had been removed because I was in a state of shock & just couldn't move for that period of time!

    Over the years my wife has endured so much pain and under so many different circumstances - I feel blessed not to of endured what shes already had to go through. I am the weaker sex and feel more of a mouse than that of a man when it comes to the question of pain!

    It looks like the only choice I have is - to hope I'm heavily sedated and to be given some gas/air together with pain relief - if there's no way of being anesthetized? A PET scan is out of the question because there isn't one available locally - although a CT scan is still helpful?

    I really want to be able to cancel the bone marrow biopsy (but can't just make an appointment to see my consultant - it works the other way around!) I feel it's unwarranted if the previous CT scans show the lymphoma not to of spread to other regions. Why exactly must it be done? - surely a staging could still be given and the right course of action taken under the assumption that the disease would be less likely to of spread to my bone marrow & the CT scans taken previously would still yield some info?

    Is there anything else I can do? - could & would I still be given a course of chemotherapy & staging if I refused the biopsy?