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Patients Against Lymphoma


Support > Patient-to-Patient > Patient Experiences & Guidance

Ian's Story

Hi, as a veteran of this ******* (add own expletive) for 20 years (dx stage 1, grade 2 1984, now possible stage 4 grade 2/3), I think I can add some thoughts on the emotional roller coaster that this illness can involve. I was 26 when I was first diagnosed which as you know can be pretty shocking. But what I will talk about is my reactions to this over the years (feel free to flame everyone).

When I was first told in a very cold way by a doc, e.g he walked up to me after a routine biopsy and said " you have lymphoma, and the marched off, no counseling, nothing (since I had a scientific background I knew what that meant, (I almost threw myself out of the window)", for the first 6 months I think I was in total shock, 

I remember being at a party and feeling like a ghost, I think it must be like soldiers who come back from a war zone (WWII, Vietnam, Irak, Northern Ireland, Bosnia etc), one minute you are normal, next minute your are/have been in a life changing/life threatening zone, and the next you are back with normal folks doing normal things.

When I was first diagnosed after about a month I had radical radiotherapy (inverted Y), being young and still in shock I never questioned anything. (even when the groin shield did not fit and I got a full x ray blast to the nether regions which made me sterile). 

But after that I just went into denial and also I was on watch and wait for several years ( told nobody at work or outside my nearest family about it. so for many years I just tried to live life to the full (drinking, smoking traveling , I know, bad bad bad bad, however until 1997 the only treatments I had were surgery to remove prominent glands and some more local radiotherapy. 

In 1997 I had my first chemo, again I told nobody as it was tablets (chlorambucil), after that , carried on as normal until 2000/2002 when my left lung filled up with fluid (pleural effusion) did I have to tell my wife's family and my bosses about my condition and recently I have been classed as disabled and had a pluradhesis, fludarabine, rituximab, 
chlorambucil + steroids, CHOPX7, steroids awaiting zevalin/chemo/sct and have 'come out of the closet, so to speak'. 

But apart from the history the emotional side has been one of wanting to be 'Normal', hence the denial, bad things (smoking 
drinking etc), and some profound changes via via my attitude to the 'normal' expectations of career, materialistic things etc.

But I think depression can happen (perhaps due to the illness, the emotional side effect, and also the side effects of chemo etc), I have had at least 3 episodes which were treated with anti deps

It may be a cliché but we all have to 'live each day like its your last), the only problem is life is just not that simple, we all have to make a living and even holidays take a little planning (all be it a few months in advance) and even after 20 years of this I find this aspect the hardest to deal with, there is also the problem with friends, work colleagues (some don't want to know you (fear of their own mortality, don't know how to react to a very ill person (challenges their word view; success, the futures always going to be better, living forever etc, others are too friendly, (think how you react when you know someone has cancer' hence why I kept my illness secret for so long).

I know many folks when diagnosed take to 'the clean living thing, macrobiotic diets etc, no meat etc etc, PS., no criticism), however as probably one of the longest survivors of this I wonder which approach works, the only thing I have done is take lots of multi vits and carry on as normal, however I do think stress makes this condition worse, every time I was stressed at work or home I relapsed big time. 

But to summarize I think having this illness is as serious as being in a war zone, I think many folks may have post traumatic stress disorder, which is probably not recognised by the docs, so don't feel guilty about your emotion's (I have cried and howled, been down, suffered from anxiety atacks and been angry so many times over 20 years (usually after being in hospital or seeing docs)) I have lost count. Its easy to think like a victim with this, but look on the big picture, there is always someone worse off (poor folks with AIDS with no drugs/malaria , war zones, no food etc).

But I suppose we should all reflect on this, life is a terminal disease, we are all going to go at some point, even with science all be it at 70/80/90/100/200/300 years ((we wish), lymphoma may make the figures a bit more uncertain but so do planes, cars, earthquakes, wars, muggings, terrorist bombs and even 'gasp' asteroids/comets/tidal waves/global warming. 

Mind you its funny in the UK folks with HIV get lots of counseling (i.e., incurable blood disease/long term illness) but here in the UK folks with lymphoma etc get 0 (what's it like in th US/world).

I also think that the stress on your nearest family/partner is much ignored, my first wife left me partly because of my condition and I know my current wife (who knew when we got married about my lymphoma) finds it very hard (I know if my if wife had something like this I would be anxious all the time) I always try to help out as much as possible when I can and not act like a victim/patient/ill person, in many ways its harder on your loved than yourself.

But we are lucky in so far as there are lots of new drugs for this  disease on the horizon, take heart I have lasted 20 years with this and who knows another 20????

Anyway I think I will go outside and howl at the moon with my dog

Take care 

Ian (mad as a hatter) from Bonny Scotland (like Seattle without the starbucks, rain rain, rain and kilts and midges (small 
mosquitoes), do not visit Scotland July to August !!!) 

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