I am not sure where I am going with this one

Many times this week I have attempted to write a post; started it with a few weak sentences, stared blankly at the screen, glanced around the room, back down to the keyboard, typed another feeble sentence, gnawed on my thumb nail for a bit, retrieved a beer from the fridge, thought better of it, returned the beer to the fridge, readopted my dazed and confused expression, stuck out my bottom lip, let my fingers slide across the guide bumps on the keyboard lightly tapping the keys without actually committing to a letter selection, changed music playlists, then gave up.

Even as I type now, I am distracted. It seems I reached a pivotal moment with the last post, a season finale if you will. How do I follow that up? Where do I go from here? Do you wish to continue hearing my vile self-pitying tripe? It was not only a milestone entry, it was a major turning point for me, and for Mike. I should be more excited about it than I am. I am aware of my feeling of indifference, and as a result, am disappointed in myself. The savage whips himself again. The rational, sane Liv, you know the one none of you have ever met, is aware why this is happening. Prior to the scan results I had this background knowledge that no matter how bad I felt there was the potential that everything could get much worse. This, in a way, was a comfort. I believe I had set the two month mark as a sort of pseudo summit, and once I had reached the top I realised there was another peak, previously obscured, only now visible. I don’t like ascents, although to be fair I don’t really care for descents either; so the prospect of this new climb made me exceptionally cranky. And then a little angry. And then a lot angry. Using the word ‘prospect’ implies two falsities. Firstly it suggests that I have a choice in undertaking the next part, which I do not, and secondly it infers I was unaware of the ‘hidden peak’, which again I was not. My poor reaction to the good news makes me wonder how negatively I would have received the bad news. At the time I believed I was mentally prepared, however with the benefit of hindsight, I seriously doubt I was. This is a somewhat irrelevant thought, but never-the-less it occasionally plagues my brain, usually around 3 a.m. in the morning.

Apologies for the exceptionally overused analogy. I am aware you are probably thinking ‘a mountain climbing simile? Really? Far from your best work I must say.’ Well you’re correct. Very unimaginative. I have utilised it in an attempt to explain how I felt that first week of my silence. The analogy was longer; I severely edited it so be grateful. What I am trying to convey is that emotionally I was in a bad place. Physically I was not much better. The two tend to go hand in hand. The chemo side effects that week were particularly severe. There were some positives, as this time the drugs were administered via my new fandangle appendage (i.e. a pipe sticking out of my arm), the dacarbazine only mildly hurt. The pain was so slight that I am only mentioning it here for interest’s sake not as a complaint; it hurt a little which I found interesting. It doesn’t make much sense for the pain to exist at all, certainly not in the area it was located, which was on my inner side of my elbow joint, below the drug administration point. Thankfully, it did not hurt my heart. Given that my PICC line ends just above the vena cava, I thought heart pain may have been a possibility. Happily, you no longer have to bear the burden of listening to my constant whining about my arm ache. I wish I could say the same about my spleen, but unfortunately it is still reminding me of its existence.

Whilst undertaking my PICC line research, I read a couple of posts from HL patients. The general consensus was that the third chemo cycle sucks more than a Rob Schneider film. I am inclined to agree. The fatigue was inexplicable and the nausea escalated from an initial sensation to many, many, physical actions. Along with the physical dilapidation, the mind was slowly sinking into desolation deep enough to warrant an inclusion in Dante’s Inferno. I then felt guilty about my own defeatism. These three process were combining to form a rather vicious feedback cycle which, much like my mutated B cell MDM2/P53 cycle, was struggling to arrest (yes I am a nerd). That was a week ago. It was a dangerous time for writing. At one point, in a desperate effort to feel normal, I attempted mascara. This was a mistake. The combination of my pallor, my rosy red nose and my eyelashes, which have sufficiently thinned to allow clumping of an epic scale, lead me to resemble a psychopathic clown rather than the intended 21^st century woman. Of course my eyebrows have barely been affected by the chemotherapy, so I believe I was also rocking a Bert style mono-brow. I am nothing but style and class.

You may be pleased to know that although I fell rather hard after my last chemo, I actually bounced back with equal vigour. This prior week has been extremely successful in terms of my physical health, which in turn helps my mental wellbeing. I may have even busted out an enthusiastic but arrhythmic white girl boogie at one point. I am unsure if this good health is because my body is beginning to familiarise itself with the chemotherapy regime, or whether the decline of my underlying disease is leading to an increasingly healthy base line. It is quite possible that a couple of quiet weekends followed up with remarkably laidback week has led to my generally healthy mood. But that option is no fun. I would appreciate it if you would all join me in striking that last reasoning from the list. I will come up with valid justifications for this action at a later date. I am rather proud of my bone marrow as it seems to have adapted to the constant bombardment and kicks in sufficiently post chemo; I haven’t been required to inject myself for the last month. This most certainly has added to my good mood. I know when my marrow is working, because I occasionally feel it in my sternum and femur. It is that proud sort of pain that one achieves after a successful gym workout. This is a far more agreeable solution than GCSF. So keep it up not-so-little bone marrow. You are doing a super job.  

It seems I need a distinctly set level of despair in order to trigger my creative ambition. This past fortnight I have either felt too well, or have been completely inconsolable. I need a little angst to keep things interesting. Nobody likes an over-animated bright eyes and bushy tails attitude. It makes us reach for a shotgun. It makes me, a firearm despising left wing vegetarian who loathes conflict, reach for a shotgun. Anyone who has watched Critter Christmas would think twice about bright eyes and bushy tails. Today, sufficient angst has been supplied; I have chemo tomorrow and I am throwing a minor Warren Gatland strop about it - scrunching up my mouth, dropping my mono-brow and accentuating my forehead creases. Sufficient optimism has been supplied by the good behaviour of my body. Only my spleen is causing me discomfort, and it is merely discomfort. Although the charcoal rings beneath my eyes are ever prominent - a reminder of my persistent inability to sleep. I shall have to avoid the temptation to watch a particular cricket match tonight; an all-nighter prior to chemotherapy is probably not the wisest move. But then again if I can’t sleep….

    

To ABVD or not to ABVD?

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 30^th 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. 

PET scan and PICC line anyone?

It has been a hectic week and I have felt like crap throughout. Currently I am enjoying a Renaissance Cherry Porter, so bliss is very near. This gives me an opportunity to recap on my week and hopefully restrain me from complaining too much.  Here we go…

I feel I may have built up far too much suspense in the ending of the previous paragraph. Sorry about that. Essentially, last week I had chemo Monday, overdid things Friday and spent Saturday and Sunday paying for it dearly. Sunday, I busied myself in differing positions of horizontal; lying in bed, lying on the couch, lying on the floor. I was so exhausted I could not even formulate replies to text messages. Sorry to those affected by this. I know hearing from me is the highlight of everybody’s lives. Fortunately, sleep came readily; I did not even need my nearly-empty-calorie-pills, which is good because I did not have any left, and my biological resistance to slumber inducing substances has reached the level where one antihistamine just doesn’t cut the mustard.

I suspect this current bout of woefulness is in part due to dread. My second cycle of chemo is now complete and this is a magic line in the sand kind of moment, as my treatment and prognosis after this point is dependent on the progress of the chemo thus far.  I am sure that all makes sense. Basically, I had a PET scan prior to my first chemo, and another one yesterday. If the tumours have reduced in size and prevalence, then yay, I stay with ABVD. If not, then treatment options need to be reassessed. This could mean a relatively new regime named escalated BEACOPP (I know very little about it) or, although highly unlikely, an autologous stem cell transplant. I will explain what that means if or when I need to. I won’t find out what my next type of treatment will be until Monday, when the results of my scan are known. Fun times.

Shall we talk about the PET scan then? I had intended this as separate entry, another retrospective one, however I never got around to it so I will do it now. The science behind this is quite cool. They inject a radioactive variant of glucose into you whilst you are in a fasted state. Tumour cells metabolise glucose at a much higher rate than regular cells, so in the PETCT scan they show up all red and angry, while the normal cells are grey and boring. We like boring. Everyone hope for boring. Right, so, I have to be in a fasting state, on the first scan this was fine, it was a 10am scan so it was no big deal. Yesterday it was a 1pm scan; I went from fasting to famished. I had retired to bed at a spritely 9pm the night prior, so by the time my appointment rocked around I’d passed hangger and moved on to total lethargy. I gave vague responses to the multitude of poorly put questions. They were particularly unimpressed with my response to the “Any chance you could be pregnant?” question; “I am pretty sure the chemo would put stop to anything like that”. Not the correct answer, just an FYI. It is crazy that pre-treatment they prep you on the odds of infertility and the like, and then any chance they get they like to ask you if you’re pregnant. I am not, I do not plan to be, and I am pretty sure my body wouldn’t be able to handle it if I was. It would tag out. Game over. Ok so no jokes allowed, granted it was a rather dark one, but I guess we are technically dealing with physicists here.

Once that rather dicey question has been inadequately answered we get down to the fun stuff. The lady (whom I fear I have portrayed negatively when actually she was quite lovely) fetches her radioactive glucose, it is kept in a metal case, in a metal syringe, and looks like something out of a Bond movie; she is donning a full lab coat, gloves and a radiation counter. The cannula is inserted into my right arm (last week’s chemo arm, so already in an utterly pitiful state), and promptly the substance is flushed through my veins. Boom! I am radioactive. I feel like I should have gone all Peter Parker on everyone. Unfortunately I was instructed to lie as still as possible for an hour. Absolutely no leaping with spider like projections from buildings. Damn.  I am not even able to read, as that demands an unfair proportion of glucose for my brain and they would like the distribution to be equal throughout my body, please. As I have mentioned, I was feeling crap, very very very crap. I think I may have slept; the drool present on my face when I was collected would definitely lead to such a conclusion. I was instructed to ‘pee’ (he actually used the word pee, which at least drew a smile out of me) using a separate toilet, as I am radioactive you know.

Then comes the scan. The scan sucks. You have to lay totally still for like 30 minutes, whilst going in and out of a prolonged CT scanner. Oh and you have to keep your hands above your head, still. This was hard enough pre dacarbazine - have I mentioned how much dacarbazine makes my arm ache? – but post chemo it was horrendous. Deep breathing and, I believe, some quick scanning by a fellow antipodean, meant I got through it with only the bare minimum of tears. I think at one point I may have shouted “I can’t go on!” a total “Do it to Julia” moment. Big brother was totally watching, cameras, microphones, the works. Who would have thought room 101 for me was purely keeping my hands above my head for half an hour? And I was a basketballer. I need to toughen up.

That brings me to today. I cannot recall if I have yet mentioned that my arm hurts a mighty lot after chemo. Well it does. It does so much that I have neglected to write this entry into my little black book, as my right arm was my chemo arm this time, and it is unable to hold a pen. So I am going full tilt on the typing, which to be honest, does little to relieve the pain. But do not fear dear readers! I have come across a solution. This solution is a PICC line, which I had inserted today. A PICC line is inserted just above the elbow joint. Using ultra sound and local anaesthetic, a wire is thread through the vein, running just under the fourth rib and into the heart. A tube then surrounds the wire, and a cannula is attached to the tube. No more needles, and a lovely little protective sheath for the dacarbazine (if indeed that is the drug of choice) to pass through rather than the vein. And, above all, hopefully no more bloody arm pain. Except now I don’t know which pain is caused by the darcabazine, and which pain is caused by the PICC line. What I can tell you is that occasionally I feel the line tickling my heart, which is a little disconcerting. It does cause sporadic heart palpitations, but it doesn’t hurt anywhere near as much as my spleen. I don’t think a splenectomy is on the cards, so don’t get your hopes up on avoiding that complaint. And the rest of my arm is still in agony from last week’s darcabazine, so I will be inclined to moan about that for a wee while longer.

Does this thing work for caffeine or alcohol as well?

That is my week thus far, I keep thinking paracetamol doesn’t touch the darcabazine arm pain, but then the drug wears off and anguish again sets in. I have a proper purple vein this time, still a little bruising, and a slight uncomfortable feeling in my chest when I slouch or breathe too deeply. They have x-rayed my chest to see where the line is sitting and everything is as it should be, so I guess it will be a feeling that, in time, I will become accustomed to.

GCSF – no longer on my ‘favourite drugs’ list

Well scientifically maybe, but not as a user. I am retrospectively writing this, at a time where I am not exactly feeling my usual chipper self, but I will try to resist the temptation to moan about my now sufferings, and purely focus on those in the past. 

We made a trip up to Edinburgh from Brighton the Friday before my last chemo. This, I will reiterate, was a trip sanctioned by my consultant; I was not breaking any rules. I was, however, very neutropenic and subsequently on GCSF injections. Again. I am starting to think this may become a regular occurrence. Anyway, I am sitting at Gatwick with Mike, when he receives a call from my Macmillan nurse giving him a few appointment updates; ‘Oh and I have noticed Olivia has quite a low neutrophil count so make sure to keep her away from crowded places….’ Time for a wry smile.

My first gut jab was Thursday, so by the time we were in Edinburgh, Friday afternoon, my sternum was already aching. Good news really; obviously my bone marrow was releasing all its goodness into my blood stream, so I may not have been dangerously neutropenic on the flight. Although this may be good news, the feeling is pretty uncomfortable. My spleen is working overtime despite suffering from lymphoma infiltration - a fact it likes to remind me of constantly, a gift of pain I then pass on to you. Sitting becomes an awkward pastime as I try to appease my sternum, spleen, gall bladder and arm all at once. I spent Friday evening in a quest to find the ultimate sitting position, a quest that proved fruitless.  

Saturday we had a lovely, and for me lively, walk up in the Pentlands (Munroing maybe?) where, aside from a decent and bloody blister, I had no adverse side effects. Yes ok, my sternum hurt, but that was to be expected. To be honest I was buzzing like a pre bedtime six year old; ‘Turn around now? But we are nowhere near the top!’ That night, post a third and final gut jab (admirably witnessed by my moderately needle phobic sister – ‘moderately’ being a euphemism) at a very nice dinner with a very nice French red wine, my pelvic bone starts to throb, and ache, and ache throb. Or throbache.  Self-medication with further red wine and a tawny makes sitting at least bearable, but come bedtime there is no chance for sleep as the pain is now relentless; radiating from my femur down my legs, from my pelvis into my spine, from my sternum into my ribcage, not to mention an ever present ache in my darcabazine damaged arm, a bizarre sore throat and an overwhelming nauseous feeling. Oh and my [insert expletive here] spleen.

The blur in the top left was initially a guy flipping the bird.....

Don’t throw up, don’t throw up, oh shit I am going to throw up. I attempt an explosive leap from the bed in an effort to reach the bathroom, but my legs give way under the vast bone pain and I slam into the wall, waking my husband in the process. He responds heroically at lightning speed, saving me from an imminent Hendrix style fate, rushing me down a foreign hallway, in the dark, avoiding shoes and bikes, in his boxers, without his glasses whilst pretty much still asleep. Telepathic high fives all round at a job well done, as I enjoy my dinner a second time, now with the beautiful ambiance of a toilet bowl and an overhead fan. I don’t think I need to tell you which I preferred.

My sister, who had magnanimously sacrificed her bed for the family cause, was pleasantly awoken from the couch to the sound of me hurling my guts up. She tottered out to have a look (who wouldn’t?) and sent a blarey eyed Mike back to bed. It turns out she has been suffering bouts of insomnia due to an exercise preventing injury, so we spent the night between the kitchen table and the toilet catching up. It was nice to have the company.

There is not really much more to this story. Sunday we went for a drive to Anstruther, had the best fish and chips in Scotland (pineapple rings for me). I had pretty bad bone and splenic pain most of the day, not to mention a demoralising feeling of fatigue. By St Andrews my body had decided to shiver uncontrollably. The rest of the weekend was a bit of a blur, somewhere between semi-consciousness and unconsciousness. Except I do remember the Bombay Bicycle Club curry. Man that is good curry.