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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
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.
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!
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
Thanks for comments - a lot of good sensible advice!
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.
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?
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"?
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.
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 :) )
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?
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