End of hiDice

March 1, 2008 at 11:19 am (Doctors, Explanations, Treatment, recovery)

Ok – so ive had my 3 days of hi dice and im feeling pretty crap. Its today that my taste buds go haywire usually, and whilst food still tastes ok, its between eating that i have the weird feeling in my mouth… So I tend to eat and drink alot – and ice cream helps as well.

but im feeling lethargic and out of it, but just checking in…

my doctor came to see me yesterday and said that his colleagues agreed with his actions of putting me on another hi-dice cycle before beam, but there is only a small amount of cancer left in my chest area, and i wont need another pet scan since they want to reduce my exposure to the xrays etc (since Ive had 5 in total now as well).

Ive had a few thoughts on this whole cancer thing which i shall check back in later and tell you all about.

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Its been a while, Ive not forgotten you all.

February 4, 2008 at 6:35 pm (Doctors, Explanations, Treatment)

Ive not forgotten this place, and I apologise to my friends and family who stop by to check up on me… Ive just not felt like posting, since either Ive not been feeling well, or Ive been feeling well enough to not want to dwell on it all.

But its been two weeks since my last post, and a fair bit has happened since then, so I shall fill you in.

Recovery from first chemo cycle.

Well, the recovery went as expected. I was feeling crappy – tired/sore/despondent/grumpy/sad/lonely/flat/blah (best word for describing ones self – “I feel blah!”

The injections were ok – sometimes they didnt want to go in, so Nic had to push harder to get through the second layer of skin/fat? Most of the time it didnt hurt, but he was still unsure. Once it hurt, so it took three times to get it in a suitable spot – unfortunately, those needles are only really meant for one insertion, but its ok, cos the third time didnt hurt at all.

It usually takes about a minute to give me the injection. We spoke to a nurse about this, and she insisted it shouldnt take that long, it should be in, push in the drug, and out – nice and fast… but for me, I prefer it to be slower – I can feel the liquid getting pushed into me, Im more sensitive I suppose – or I pay too much attention. Anyway.

Only once did I bruise – obviously Nic went through a blood vessel on the way in, and I didnt put enough pressure on the site afterwards, cos I had a nice bruise on my tummy about the size of a 10cent piece – its still there, but its fading.

On the Wednesday week after chemo, my blood was tested – my results were quite low still – they were waiting for them to drop, naturally, and then increase sharply because of the drug – they were looking at the White Cell count (WC), and the CD38 count (Stem Cell count)…. minimum for collection was WC = 1, SC = 10. Mine were above that, but they needed to know if I was going down or up, so I went in the next day – they were even lower, so obviously I was going down… No more tests were scheduled until the Sunday, were I would have to go into the Oncology ward upstairs, and one of the regular week nurses was to come in and test me.

So a few days break from the hospital! YAY!

I already knew by Saturday that the injections were working.

I woke with a painful hip, as if I had slept on it wrong – I woke up, pottered out to the loungeroom, lay down and tried to stretch it out (I did not want Nic stumbling out of bed and tripping over me on the bedroom floor at 3am!). That didnt help, so I took some painkillers and went back to bed.

That day the pain grew steadily worse – spreading out across the back of my hips, jarring me to a painful halt when I tried to walk, the back of my neck and skull were hurting so badly – painkillers were my new best friend.

Sunday came, we went in and got the test – we hung around waiting for the results, chatting to another lady in there, whose levels seem intent on not co-operating – it was very quite depressing listening to her – she practically said that if this chemo treatment didnt work this time (she was a relapse patient as well), then she wasnt having another one! Im so used to being sure Im going to live, that its hard for me to hear people defeated and willing to stop – Im not making judgments, its just hard.

Luckily for me, my results were fantastic, and I shocked the nurses. Remembering they needed a minimum of WC – 1 & SC – 10 – Mine were WC-11 & SC-183. The nurse who came in to do the collect even admitted she wasnt expected to collect from me for another few days! I was glad it was then though – even though I just wanted to go home. It was a quiet room, and I was relaxed.

I should explain what a stem cell collect, in this matter, entails.

Basically, I have the port/line that has two catheter lines running into my body – I ‘think’ they go in and stop just above my heart. The reason I have two is to facilitate the taking out and putting back in, of my blood, in a cyclic system. The injections they gave me makes my bone marrow overstimulate, producing stem cells, which normally go on to form the main building blocks of your system (red cells, white cells etc). Because it is overstimulated, the excess stem cells get pushed into your blood, and so can be collected – and because the injections and the bone marrow are working constantly, the blood they take from me wont necessarily be lacking in stem cells – so its not as if they are draining me of all my goodness.

The machine basically takes blood out, spins it, the stem cells rise to the top, and then are collected, and then the ‘old’ blood gets put back into me – a continuous process until they get enough. They needed about 250mls and a count of 10 for the stem cells within that – thats to the power of 10, so basically 10million stem cells – enough for two transplants back to me later on. Its a mathematical calculation, one checked by the nurse, and then later by the lab.

I sat on that machine for 6hrs – remember, I cant get off, so I had to utilize the commode chair (having no dignity is not good for a 24yo – but its one reason I prefered being in an empty room rather than the normal busy day ward Im usually treated in)… but 6hrs later, after the nurse ensured we had more than enough mls for the lab, and she would ring me with the results the next day – there was a slight chance I might have to come in again and sit for a bit longer if the count wasnt high enough.

BUT we could stop the injections!!! YAY!!!!!!!!!!!!

The whole process was quite painless – I have an odd sensitivity to feeling the saline and such that they put into the port – theres not much I can do about it other than drink something sweet when its going in, in an attempt to disguise the taste – its the same for the anti-nauseas – I can taste them… yucky.

Anyway, the next day I was feeling good and I got the call from the nurse saying that I needn’t come in, for the count was 23!!!!!!!!  Thats ridiculous even for me! So they managed to collect (harvest :D ), enough stem cells for 5 transfusions!! I was very impressed with myself.

And so was my doctor when I saw him a few days later. He said “Results like those get us hematologists very excited” – I remember during the last chemo, when I was on the single injections, my white cell count got to 18, and he said to me “Im in awe of your bone marrow at the moment”…. I think it helps that Im fairly young and healthy despite all this. And Ive got many people sending me love and healing vibes – it all helps Im sure :)

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So, I learnt the same day as my doctors appointment, as I was having my port dressing redone (it has to be done once a week), that instead of a 21 day cycle, its only going to be 20days – I questioned it, and the head nurse came in and told me that she couldve put me on the next day for chemo if she had wanted, because my bloods were so good, but she believed that a week’s break after stem cell collection was good for morale.

So I have chemo tomorrow – eep! and in the afternoon! Normally I go in first thing in the morning, and I dont know why its different now – maybe theyve got more people – maybe its cos Im always late in the mornings, but in the afternoon, I wont be able to be late, because they close at a certain time, and whilst Im sure they wont kick me out mid/late treatment, it will be a squeeze. Im not sure I like the idea of going in later – it means Ive got to wake up for my daily dose of tablets, then hang around for a few hours, then go in – at least in the mornings I would get my anti-nausea earlier, but with this, if I dont take anti-nauseas, waiting instead for the ones they will give me, I dont know if I will make it to the hospital – but theyve mentioned they dont like me taking anti-nauseas at home before treatment…. I suppose I shall have to ask….

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My hair started falling out properly last Thursday. Ive been having a few hairs go here and there, and my head had started to ache, but it came out, not in clumps exactly, but a large amount, with a good collection of strands from certain areas – ok – in small clumps – its not completely noticeable yet – the spot at my part at the front is getting very thin – and ive taken to wearing a bandanna, if only to confine the falling hair to my back, rather than to my front, sides and face. The pain has been given a name, by my cousin who is going through cancer treatment at teh moment as well – “follicle pain” – its true – its the follicles that hurt – even just pulling my bandanna down at the front hurts.

Ive gone through this before, but its still very distressing having it fall out – I just keep brushing it hoping it will hurry up and just fall out – why dont I just cut it? I dont have that strength, and Im sure it will be a messy process anyway.

And yes, its hair everywhere – its unnerving pulling your underpants down to find hair falling out down there as well. I put a sticky cover over my port the other night to have a shower, and I didnt realise it had caught some of my underarm stubble until I went to pull it off, and whilst it was not waxing exactly, a fair amount of hair came away as well – so whilst it may not ‘fall’ out, it is loosened enough to come out easily.

The worse thing about losing hair, constantly, is finding it on your pillow in the morning, and all over your night-shirt, and the sheets – and having to remove it, piece by piece, just to not feel like a woolly mammoth – and it doesnt look good in public either – shedding like a fluffy cat! yuck! I keep imagining that I will wake up one morning, sit up, and all of my hair will just stay on the pillow – I dont know exactly how I would feel if that happened – but something the nurse mentioned to me at the beginning, about one day the hair will be there, and one day it wont, keeps reminding me of this – if it happens, I will let you know how I feel.

At least hopefully this time when it grows back, it will be slightly lighter :)

 ~~~~

Ok – my office is getting hot again, so Im going to take leave, read over what Ive written and perhaps fill in some blanks.

You may not hear from me for a few days – its going to be very hot here the next few days, so I will be crashed out on the couch before and after treatment.

xox

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chemo day 1

January 16, 2008 at 9:28 pm (Doctors, Explanations, Family, Treatment, recovery)

fuddled and chemo brain – slight nausea is threatening at the moment so apologies for apost that will be written with my eyes mostly closed.

went in – meant to start straight away, but mum wanted to see doctor first – i wasnt fussed – i think that made everythning run late, but oh well. he came, talked about fertility preservation more and said that generally he has a 2-3 week wait that he is happy with from date of diagnosis, so the IVF egg collection was out of the picture now. I did remind him that its been over 6weeks since the scan.

There is still chance for drug that restricts ovary functions – cant remember name – that is an injection once every 3 months…. still experimental…. Dr Bowtie gives me a 50/50 chance anyway, which is pretty good, and since im young it should be ok.

i had the option of waiting chemo one more week and seeing fertility specialist, but i decided to just go ahead with it – id psyched myself up for  it, so it should happen now

had lots of fluid, then the steroid and the anti nausea – geez that was not nice – tasted terrible

so the nurse got me a special tablet – basically a relaxant so i went drowsy and relaxed.. i could deal with that… im getting it each time now im told.

i was there was 9am until about 3pm

got home

slept

ate

hopped on computer

my brain is fried, and the more i try to work it, pay attention to things that are moving and require my attention, such as my fingers, people etc, I feel more nauseous.

Im on a BIG bag of drugs, and that doesnt include my injections yet!  just lots of drugs to ensure the chemo doesnt irritate my bladder, and my gut, and anti fungals and antibacterials etc etc etc  lots and lots of drugs

i need some sleep

yes

this is the brain working of a chemo patient.

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The insertion of the port – aka. the pain continues

January 15, 2008 at 8:59 pm (Doctors, Explanations, Treatment, Venting)

well – I think I have found a rival for the pain felt by the bone marrow test… the insertion of the port in my chest… again, the sedative didnt work, and the local anesthetic wasnt working as deeply as they hoped obviously. but i get ahead of myself

I still cant remember exactly what the port is called – a double something or other (arterial venous something)- i will promise to note it down tomorrow – ahh tomorrow, my first day of chemo – again… hmmm

Ok – the port. I was due at the hospital at 11am, and on the way I admitted I was nervous, there was no point pretending that I wasnt. As soon as I got the the short stay unit, I was informed that they wanted me in there as quickly as possible – I think I was fast-tracked.

So I signed my admission forms, got dressed into the funky robes that tie at the back and have your butt hanging out (note: wear black underwear on all trips to the hospital not bright blue!) and was wheeled out towards the surgery room by about 11.30 or so.

We waited around (the nurses and I) in the surgery room for the doctor and Im pretty sure it all started at about 12.15… the nurses were nice and I tried to make small chat, but I was nervous. My PICC line going into my arm last time was not pleasant, but it was almost bearable because the pain was in my arm – this was going to be in my chest and whilst I hoped it wouldnt be too bad since my chest was still partly numb, I knew it was only superficially so and wouldnt make much of a difference in this case.

Since they needed to be sure that the catheter was going into the correct place, I was under a big xray machine and everyone was wearing those protective vests. There were 4 big screens/monitors that showed my blood pressure which was to be taken automatically every 15mins, and my heart rate was being constantly monitored by the little thing they stick on the end of your finger – that stayed regularly at about 96 before it all started. I met the doctor, who the entire time called me the wrong name, signed the consent form and then they started.

The gown was pulled down (no point in being modest about my breast hanging out now – but OH it was FREEZING!), and the nurse/assistant had a student with them who was to do the cleaning of the area… they firstly had to take the dressing off my newly clean and healing scar from my surgery – apparently they needed to find the vein in that area… they used alcoholic swabs obviously to sterilize the area, and FUCK! did that hurt!!!!! Yes, the pain started early, but I could handle the stinging.

Next I had to lie with my head towards the left, and they placed a blue sterile sheet over my face and chest, with a sticky, presumably clear, panel over the area they were working on. I had a small, maybe A4 size, hole created for me to look out of (and so they could look in on me) towards the left and that was it – luckily for them, I was not claustrophobic.

Now – they apparently gave me local anesthetic, and I dont know whether that was what hurt so much, or whether it was what they did soon afterwards, but it literally felt like someone was shoving a needle straight down into my nerve along my collarbone. The doctor was calmly apologizing and telling me it was going to be ok, but either they didnt wait for it to start working properly, or they didnt use enough, or my body is just stubborn, because alot of what followed hurt.

I know he kept asking for more local anesthetic, especially when they went along the collarbone area. Im not exactly sure what the process was, but I know they made an incision up the top, about 2inches out from my center and about 1inch below my collarbone, and THAT was what hurt the most. I felt the tugging and the pushing, and I know the doctor gave me some sedative, because I started to feel more relaxed and I really wish it had worked better because I honestly would have prefered to just be knocked out for this. I do remember crying, sobbing and the nurses peering in on me looking very worried, telling me it wouldnt be much longer, and at one point the tugging was so hard and it hurt and the doctor kept asking for a bigger line – obviously the gentler versions were not getting through, or threading through the vein well enough.

I cried out in my mind at one point – I just couldnt handle it. It was so painful, and so heart hurting – I was stressed, sore, now in more pain, and I was all alone, and it just didnt feel like it was going to stop. I desperately wanted one of the nurses to hold my hand, and it is almost impossible to practice deep breathing and calming techniques when your physical body is in so much pain – constant dull ache I can handle, but not sharp unexpected searing pain.

And the worst thing about this all was that I could feel the line going into the cavity in the center of my chest, and I could feel it – it was something I had last time, because pretty much thats what happens – a line gets inserted into just above your heart, to ensure the drugs are dispersed quicker. But I could feel it there, and my body didnt like it and I tried to tell the doctor that I could feel it IN my chest, but he thought I meant there wasnt enough local… no UNDER my sternum! I think I need to learn my anatomy better so I can inform the doctors better.

Anyway, FINALLY it was over, just a few more stitches, which the student did I guess since the doctor was instructing – unfortunately for the poor student, I felt the third one on my breast. I think I dumbfounded the doctor because I was so sensitive to it all.

I was slid back onto the trolley bed to be taken back to recover and as I was wheeled out one of the nurses commented on my red splotchy face and asked if it was a reaction to the drugs, or whether it was my natural reaction to crying – I hate my red splotchy face after crying so it was the last thing I wanted to hear!

I was taken back to the recovery section of the short stay center, and was given lunch and some pain killers – when asked what i wanted for lunch my response was “Panadol! and maybe a hot milo”

I asked for Nic to come in at a bit later, and mum came in as well – I was very very sore, and not liking it much at all. It was all fucked up.

I managed to get a little bit of sleep, and eventually felt up to going home.

And here I am.

Basically the port enters at about 1inch above my right nipple, and inside the vein/under the skin, curves up and then down towards my heart/center. On the outside, there is about 3inches of exposed tube, 2 lines, with what Im assuming are clamps near the anchor which is stitched onto my skin, and at the end of the lines are plugs – this is where they plug me into the drips – and where they take blood from – one is red and one is blue – obviously one is for putting things in and one is for taking things out – not sure which is which yet. And its all covered by a clear waterproof dressing – which unfortunately also covers my nipple… why is this unfortunate? Well, the dressing needs to be changed each week, and getting an arm wax each week was bad enough for my PICC line – but a breast wax? OUCH!!!

The two lines curl up under my arm – which poses the question – who the HELL decided on the location!? I cant very comfortably wear a bra now, and whilst it may be discrete and not very noticeable under clothes, once I lose my hair, its going to be slightly obvious that Im going through chemo, so I really would not have minded the plugs coming out near my neck… this way Ive got the discomfort of trying to put clothes on over the top, and also having to wear a top that has some sort of opening near my armpit on treatment days so its easier to access the ports! A man must have designed this!!!!

In addition, because I cant get it wet, showers are made more difficult, and I can only sit in a bath that comes up to my waist because I dont want to get the plugs wet by sitting in water of any higher level….

grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

this is fucked.

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So today Im sore, but not as bad as expected – most of which is thanks to all the healing vibes and love Ive been sent by all my friends and family.

And tomorrow I have my first chemo session… 9am… not even a reasonable hour! I must admit, I usually sleep in until about then – especially after chemo, so I dont know how Im going to make it to chemo on Thurs and Fri – with lots of anti-nausea and sick bags Im sure.

Im going to sign off now, since my right arm is quite sore and typing at the computer is making it ache more.

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Diagnosis – Officially

January 8, 2008 at 11:00 pm (Doctors, Explanations, Family, Friends, Treatment)
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I saw the doctor today – not my doctor, but the guy looking after my doctors patients. Im sure he is a really nice guy, but Im slightly attached to my own Dr Bowtie, and his mannerisms, and he knows me, knows what he’s told me before and knows my mannerisms.

I think this poor doctor wasn’t ready for the fact that I was so seemingly untouched and at ease with everything he was telling us. Ive had cancer before, I knew it was going to be it again, so *shrug*. Dr Bowtie had described a few scenarios with me when the PET scan came back positive, so I knew basically what to expect – even the dreaded bone marrow test (this is going to have a post all of its own, so stayed tuned, if you know nothing of them).

The doctor was running early, so my mum was a few minutes late, which made her feel harassed on top of being stressed already. It was a pretty standard meeting – going through whats most likely going to happen. I must say though, the one thing about my doctor, and I know its because he is my doctor, I am his patient and he knows whats going on, what he does etc, but he really does have the answers to most questions you ask of him. AND he writes things down, explains them fully so you can make the correct option for yourself, if you have an option.

The one major decision we made, and Nic and I discussed this earlier, was regarding fertility.

There were a few options:

1. I could have IVF drugs for a full cycle, then they harvest some eggs

Pros: More reliable form of “securing” fertility
Cons: I would have to do a full cycle, and since Im in the middle of one right now, that would entail waiting two weeks, starting the drugs, and then after that 6 week period, THEN starting chemo

2. I could have surgery, which this doctor didnt know anything about, whereby a section of ovary is taken out and frozen.

Pros: Quicker method
Cons: Didnt sound too reassuring, and like it may take a lot of time to organise. There has been apparently only one known case of this becoming a baby, and the fill in doctor didnt know of anyone in my state who does it – well obviously there must be someone for my normal doctor to recommend it.

3. Apparently there are some extra drugs that they can add to the mix/recipe, that diverts blood supply to the ovaries, in the hope that the chemo drugs wont affect them as badly.

Pros: I suppose I wouldnt have to do anything extra, just one extra drug
Cons: My thoughts were that this lack of blood must surely affect the health of them anyway – any blood is better than reduced blood. And it only takes one chemo tainted blood cell to get in there really

4. No fertility treatment or precautions at all and just get on with treatment

Pros: My husband gets a wife with only Stage 3 cancer, rather than anything worse caused by waiting longer for any other treatments.
Cons: I may become infertile after treatment.

We chose option Number 4.

I dont know if Im being very selfish here, although I think I have a right to, that there is no point looking after possible future children, if there is a chance I may not live to even have the prospect of having them. Nic has told me he would prefer to have an alive and healthy wife, and no children, than no wife and no children. I think I would prefer to be alive and still have the option of trying, rather than be dead and not.

So parentals – please dont be too disappointed at the decision we made to not to secure future grandchildren. And if you are disappointed, do not talk to me about it, because I am NOT in the mood to answer any more questions about fertility (another chapter on that subject to be written – stay tuned).

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There is a girl, same age as I, same Hodgkins, that Ive befriended and chatted to during my time volunteering at the hospital. She was there yesterday, as I had a feeling she would be.

Her mother, father and she looked horrified to see me, with my neck padded up with a dressing, and wanted to know if everything would be ok. I think I was their little guiding light to life beyond chemo, with healthy appearance, good attitude etc, so she was not happy to hear about me relapsing. Of course, there is nothing I can do about that, and there is no reason why me relapsing should indicate that she will to.

Just a mini rant – I used to take responsibility for others people’s reactions to me – even before I got cancer the first time. During me telling people about cancer the 1st time around, I did feel bad because I was blunt, brutal and a bit cut throat about it all. However, Im over it – I cannot handle how someone else reacts to my actions. So long as I know that I do not purposefully, or retrospectively ignorantly, insult, or try to emotionally harm someone with my words and actions, then I am happy within myself. I cannot control you, I can only control myself, and I have enough self respect and self belief to get me through whatever I need to get through, and to be the best person I can be at all times (disclaimer: minus the obvious days when I feel like shit, and I apologize in advance for those).

So, if you are reading this my friend, that little rant was not directed at you specifically – but you did make me question and check my actions – I dont think anything to do with me will affect your chances of making a full and lasting remission. :)

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Back to Diagnosis

Ive just realised that I have not officially given you the diagnosis.

Classical Hodgkins Lymphoma – Nodular Sclerosing
- Stage 3 (as per PET)

Treatment:
- Bone Marrow Test
- Port put in ASAP
- If bone marrow test is clear: 2 cycles (21 days) of dICE chemotherapy recipe – stimulated bone marrow/stem cells harvested during 1st cycle.
- PET scan after 2 cycles
- If clear: one cycle of BEAM chemotherapy (by all accounts, hard core shit) and then I get the stem cells given back to me – like my own bone marrow transplant.

If things dont come back clear, then it gets a little bit more complicated, and a little bit longer.

My last chemotherapy cycle was 14 days – chemotherapy was once a fortnight.
This time, the chemotherapy cycle is 21days, but the actual drugs are given over a 3 consecutive day period. The BEAM however, is everyday for 6 days.

The way they stimulated bone marrow last time, in order to boost my white cell count, therefore my immune system, was giving me a drug to inject the day after chemo. It was shit – because your bone marrow is made from your bone, this stuff makes your bones ache sooooo badly, you just want to die to make it stop – you curl up into a hot, sweating ball of agony. Your skull down to your toes ache like you’ve just jumped off a cliff and landed on flat stone 20 meters down, and you have to live through it. You cant move without it aching, yet lying still doesn’t help either because your under-worked, wasting-away muscles are screaming out to be worked. And for a fairly active person, that inability, uncompromising pain is the worst thing – wanting to go out but having migraines and light sensitivity, and just being able to make it from the bed to the lounge is a struggle, getting out of bed by yourself is a miracle! Making it to the letterbox was often the highlight of my few days after that injection.

And Nic had to give it to me. Pinch some fat, put the point of the needle at the bottom so it doesnt scrape as it goes in, at a 45 degree angle upwards – put it in a little bit, pull the syringe back, if there is blood, try another spot – it cant go into blood vessels. Once your in, slowly, ever so slowly, push the syringe so it doesn’t hurt so bad as it goes in, and just in case I faint and fall over. Or Nic – Nic has a fear of needles – he’s fine when they are in, but watching them go in or out is his weakness. And the poor love almost blacked out after the first effort. He still doesn’t like it, even after 6months of giving me needles, rather, he probably hates it even more.

So – thats the drugs – thats the basic technical information. We are yet to see the emotional and physical effects it will have on me. I often wonder how quickly my hair will come out this time – whether I will have to document it – and whether I will be able to handle waking up in the morning to find not a few or handful of hairs on my pillow, but my entire head of hair… Im not going to think about that right now, because as superficial as it sounds, Im not ready to cry about that just yet. Give me a few days.

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Bone Marrow Tests

I WAS going to do this later, but now is as good as any.

It has come to my attention that many people do not know what a bone marrow test actually entails, despite EVERYONE knowing how painful they are apparently (and feeling ok with telling ME that).

What they are for are to collect a core sample of your bone marrow – which is located in the middle of your bone – the soft squishy bit that looks like coral held in between thick hard bone bits that you may see on the t-bone steak you eat at dinner.

How to get to that is as follows:

My first bone marrow test I did not have sedative – the reason? I was to have it on the same day, just a bit prior to my first chemotherapy dosage – so I wanted my wits about me and as little other drugs as possible. Apparently, according to the doctor today, the sedative will dull your thoughts, but you just wont remember it afterwards. hmmm not sure if I think that’ll work, but I will let you know!

Ok – so firstly – you are alone, with the person performing it. You are not allowed any family member, support person etc, because of the nature of the act. I am not sure whether its because they need sterile environment, or they just have had bad experiences where the support person has not liked seeing their loved one in so much pain that they interfere. I will ask tomorrow and remember to report back if I remember the answer.

So, you lie on the bed, on your side, back to the specialist, best position is curled into the fetal position, hugging your knees. My advice to anyone having to have this, is to ensure you get a good grip of the bed frame.

They give you a local anesthetic, make a small incision through the skin, around your hip, and then they stick a syringe into your bone and basically suck up some bone marrow. It feels as if they go through your hip, straight down into your leg bone. There are two types, and for the second one it involves basically digging into your bone marrow to get a decent core sample of the bone marrow – just imagine the feeling of someone taking a corkscrew to your skull. It FUCKING HURTS! All websites, such as this one, indicate that you may feel a sharp stinging pain as they go into the bone.

Let me tell you, if it was a sharp stinging pain, I would not have been lying there, tensed so much I was getting cramps, gripping the bed frame so tightly Im sure I left finger indents, silently, slowing drawing out the word “fffuuuuuuuuuuuucccccckkkkkk”, whilst tears streamed uncontrollably down my face. A deep deep ache and agony sets in, and you just want it to be over. I was told I needed to relax a little bit, and pull my knees up more, since she needed that to finish it. In that situation, when all you want to do is have it over and done with, and co-operating means more pain, the last thing you want to do is bring your legs up higher so they can get in deeper. Loneliness, thats what you feel – loneliness and pain. It is not nice, it fucking hurts, and I still stand by my decision that anyone who gives bone marrow tests should be made to undergo one, just so they know. I understand pragmatically that its perhaps best if they dont know, since they have a job to do, and anyone who has had one has sympathy for anyone undergoing one – and truthfully, Id prefer someone just to get it over and done with as quickly as possible without sympathetically giving me even a few moments relief.

And everybody in that clinic knew what was going on – and everytime I saw that curtain close over and that specialist walk in, my heart went out to that person.

And its not something you can share with your family. I could NOT let my loved ones see me in quite that much pain – not after the last few months and diagnosis. So I did it, quietly and bore the pain because truthfully, I’m glad its me, and not them, that has to go through this. I can handle it – I dont know if I could though, if I had to watch them go through it.

 

So thats a bone marrow test. I will let you know how tomorrow goes.

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ouch ouch ouchy ouch ouch

January 7, 2008 at 10:30 pm (Doctors, Treatment, recovery)
Tags: , , , , , ,

I have no idea where I was last at, but my stitches/neck are starting to really really hurt.

It might be cos I missed my last set of drugs (basic pain relief), or if its starting to fuse and heal and with my frustration at not being able to move around properly, cos its hindering my movement…

but it HURTS. Imagine this:

Youve got a phone permantly wedged between your ear and your shoulder to hold it in place – after about a week, you move it away, and then try and straighten up…

OR

youve been cut and stitched back together, with your ear permantly attached to your shoulder – no being able to stretch your neck, or turn your head properly.

THATS what it feels like, but with the added advantage of when you do move inappropriately, you are in severe headache, feeling-as-if-the-stitches-are-about-to-rip-out pain, and you have to go back to the position of head to shoulder, keeping the phone in place.. and Ive tried using that to my advantage when Im on the phone, but it doesnt work – it still hurts!

~~~~

Ive got my appointment with my doctor tomorrow. Well actually not my Doctor Bowtie – his associate who is looking after his patients whilst he is on holidays. My initial reaction was that I wanted to wait until my doctor returned. I dont want anyone else deciding my treatment. Even though Ive had a few moments of doubt, where I wonder “why wasnt this cured last time?”, “why didnt he check my results earlier?”, Ive still got a lot of respect and love for him, and I trust him implicitly. My thoughts of doubt were more directed at universal questioning, as to why I have to go through this again, because I know he was just as shocked as I was when the results came back positive.

He is a fantastic man, and I really dont want to see anyone else.

[And as a side note, Im sure he has had more profanities and doubts directed at him in his career than what I have just stated]

BUT – I spoke to my mum today, and she mentioned she had called the head nurse at my treatment centre to ask about the procedure of diagnosis, treatment plans etc whilst my doctor is away. She was reassured/informed that before he left, there was a group meeting of every patient on the books, treatment plans, possible variants on that, and in my case, a plan for every possible diagnosis outcome – so that everyone is aware what may happen. And whatever he tells me, will be exactly what my Doctor would say to me anyway.

There is always something about a persons persona and aura of course, that gives you faith in them or not… so it wont be exactly the same, and Im starting to realise I sound as if Im setting this other doctor up to fail, by judging him before I even meet him. So I will stop now, and check back in tomorrow with the report on how it all went, what the treatment is, etc.

~~~

It has come to my attention that a few people may be uncomfortable reading this and leaving comments for the world to view, or asking questions, so let me say this:

I appreciate your coming here to read this blog. I believe it is important to read and get even a small educating on what its like to go through this, even from an outsiders perspective. And I hope that you will come to be similar to my closest friends or extended family – that you will understand it from even their perspective – I want this to be not only my story and journey, but yours as well, just as it is part of my family’s.

I was going to write so that if this ever happens to you or to yours, but thats silly. Reading this will indeed give you some heads up on what may happen if a loved one, or even yourself, gets diagnosed with cancer, but I believe you dont need that to happen to get benefit from reading this, from interacting. There are so many taboo subjects in this world, and unfortunately cancer is one of them. However, the most compassionate and loving people I have ever met are those who simply try – try to understand, or just try to be there for those who need it. Those who are willing to listen, listen to all the shit bits, the inspiring bits, the tear jerking and down right frustrating bits – and at the end of the day be willing to admit that they dont understand what its like, but they are willing to be there, just to listen, to be, and to be witness.

So THAT is my hope.

And in facilitation of that hope, Ive set up an email address, keeping in mind my pseudonym, so that you may email me and ask whatever you like, tell me whatever you like – and please know, that I welcome all comments, and questions, and I dont mind in the slightest if you forward this blog to others, because maybe then there will be more understanding in this world of ours.

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