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.
