Apologies, dear and loyal readers, for the delay in this
post. I would like to think the delay was due to grand penmanship, developing prolonged suspense, however, realistically, the week prior has been frantic,
further adding to my inexhaustible fatigue. How are you feeling Liv? Tired. Exceptionally
tired. This, in essence, means pure laziness on my behalf! So hence this
rambling and ill authored apology. Since Monday, the day of reckoning so to
speak, I have had my next dose of chemo further adding to my enervation, but I
will address all that in another, hopefully imminent, post.
Monday; 2pm haematology appointment with a jet lagged
husband in tow. We had made a list of questions and checked it twice, had brief
discussions on all the possible outcomes, crammed research on the various
treatment options and, independently, had come to the same conclusion. Which is
a nice feeling really, to know that you and your husband are on the same page.
There are a few things I wish to address in an attempt to allow you all the opportunity
to get inside my head a bit prior to me divulging the outcome of the meeting. I
will apologise in advance for any content repetition from previous posts.
Essentially, my brain for the last eight weeks has been repeating the same
bloody thoughts and overanalyses, so I feel you should share in some small
amount of that particular suffering. A further gift to you.
As you are probably all aware and are incredibly sick of
being told, I’ve been diagnosed with advanced stage IV nodular sclerosis
Hodgkin’s Lymphoma, and the majority of the negative prognostic features
associated with the disease. What this basically means, is the lymphoma was in
my nodes above and below my diaphragm, in my spleen, in my lungs, in my bowel
and potentially in my liver. It was also advancing into my marrow. That sums up
the stage four aspect; the classification would have been stage three had no
other organs been involved, and stage two if the nodes effected were only those
above my diaphragm. The ‘advanced’ aspect is due to the symptoms displayed, or ‘prognostic
features’, before treatment started; drenching night sweats, weight loss,
fatigue, spontaneous fever, haemoglobin below 100 g/L, lymphocytes below 10% of
total my white cells, white cell count above 15 x 10^9/L and an ESR greater than 100 mm/hr. In fact,
the only features I had working in my favour were my age, I am under 45 years,
and that I am a female. Oh and the nodular sclerosis subtype was also
fortunate. I am unsure what my albumin was, but given they initially suspected cholecystitis,
I suspect it was raised. What all this means is that the lovely little five year
remission rate of 90% I was informing everyone of, was actually reduced to
around 60%. If my two month PET scan was positive, then the remission rate
after five years drops to around 28%. Hence, Mike and I both independently
agreed that if I was indeed PET positive, we would change treatment regime from
ABVD to escalated BEACOPP. We were aware
of all this from the beginning of my diagnosis, so it has been playing on our
minds, and my clinician’s mind, quite a bit over the past three months.
There has been an abundance of recent research in the last
few years in relation to the treatment of Hodgkin’s Lymphoma, and opinion is
divided as to which treatment regime should be adopted. If I had been diagnosed
in Germany, the USA or even parts of London, I would have given eBEACOPP from
the word go. The reason I was not is that eBEACOPP is far more cytotoxic than
ABVD; increased bone marrow suppression, increased nausea, increased fatigue,
increased chance of infertility and, most alarmingly for me personally, a vastly increased chance of developing another cancer in the years to come; disturbingly
acute myeloid leukaemia was on this list although, granted, evidence suggests there
is only a 1% chance of this, but I was not overly happy to see that little
nasty there. Another concerning aspect of eBEACOPP is, given it is a pretty new
treatment regime, there is not a lot of data in regards to long term side
effects. This is ultimately an exceptionally selfish concern. Someone needs to
be part of that statistical group, why shouldn’t it be me? I do apologise, once
again, for feeling that way. I had decided I would be adopting eBEACOPP should
I need to, so I feel that although I had that selfish concern, I was willing to
put it aside. It merely occurred in my head. Now I have passed the thought on to
you. Judge me as you see fit.
Have you had enough of this preamble? I think you all have
the general gist in regards to the state of my anxiety. Should I progress onto the
actual guts of the appointment? I do hope that those of you uninterested I the
scientific and medical aspects have simply skipped to this paragraph. I do
confess the previous paragraphs read somewhat like a reflected learning piece;
CPD points anyone? Well just to further the scientific parts, I do have to correct
something I wrote in my previous post. I reported that in the PET scan therapidly dividing cells were red and angry. This is not the case. They show up
white. The non-cancerous cells are still dull and grey, so those of you
supporting me in the wish to resemble a New Zealand First supporter in my second
PET scan can take heed that your wishes were still correctly directed.
Ok, enough of this! The appointment was scheduled for 2pm,
as I have mentioned. It was held in the renal ward (clearly the NHS is
adequately funded) so Mike and I were waiting amongst those about to receive
dialysis. We were still talking about worse case scenarios and all that jazz
when my Macmillan lymphoma nurse called me through. In my haste, I dropped my
winter coat on the floor, then my gloves, then my hat. I have always been known
for my super-cool qualities and calm head under pressure. It says so on my CV
so it must be true. Once I managed to salvage my wardrobe from the floor, we
toddled on through to see my consultant. On Monday mornings there are haematology
meetings for all the clinicians along the South Coast discussing results and
cases. This is fantastic; it means if you happen to see a different consultant
they are all clued up on your case, and it means there is extensive collaboration
in regards to treatment options. As far as I am aware, my PET scan results came
through Monday morning, so my consultant had only just discussed them at the
meeting. She could barely contain her excitement. In fact, I would say that she
didn’t contain it at all. I hadn’t even taken my seat before she told me she
had fantastic news, beaming from ear to ear, informing me that I was PET
negative. We got to have a look at the first and second PET scans side by side.
My spleen was the best example. On the first scan it mirrored a BNP supporter –
you know white, large, angry and causing a lot of pain. On the seconded scan it
was a lovely conforming grey. No more splenic involvement. Why does it still hurt then? Well it could be that I have falsely accused it as the root of all
of my discomfort (much like a BNP member does to the rest of society) or the
nerve endings are still aggravated so therefore it is kind of a referred pain.
We don’t know yet. What I do know is that it still hurts, as does my upper
right side, however my gall bladder pain has subsided, a fact I had mentioned
to Mike prior to finding out my results. So it isn’t all in my head.
What does all this mean? Well it means I still have four
months of ABVD chemo left, but that my chance of remission at the end of the
treatment is now very high. It also means the chance of me being clear for the
next five years is very high. This is all good news. How do I feel about it
all? Well, trick question, I feel exceptionally tired. Sorry, bad joke. No, I
don’t really know how I feel. I had so mentally prepared myself for bad news
that the so called good news has not really sunk in. I still have four months
of fatigue, nausea, hair loss, pain and general crappiness to go, and I am not
really looking forward to it. But the option of not having those four months
was never there, so I do not know why I am feeling sorry for myself. A number
of people have said ‘well done!’ I find this an interesting turn of phrase. I
haven’t done anything. I think it became apparent when I started to refer to my body in the third person that I had lost all control over it. Of course I never
had control. If I had, I would not have got cancer in the first place, I would
never have caught a cold in my entire life, I would have never suffered through chicken pox and I would be able to dunk a basketball despite my 5’6”
stature. I have done nothing to deserve commendation. All I have done is sit
around literally pulling my hair out and typing a whining blog about how
terrible I feel. Nothing praiseworthy in that! How do I feel? I cannot really tell you. I
still cannot plan my thirtieth birthday merriments despite the high odds that I
will be in remission. I still cannot plan Christmas. I think all the positive thoughts and
celebrations will kick in around the 30th of June, when the
finalities of the disease are apparent, and the bloody chemo is finished. So do
not fear! You still have four months of whining to look forward to. But it is
good news all round, and I did smile, and Mike and I did share an inappropriate
celebratory peck in the foyer in front of all the poor bastards waiting
on their regular life dependent dialysis.
