Monthly Archives: February 2013

The Harvest Festival

Today was Harvest Day. Or when I woke this morning, Day One of the Harvest.

If I were to have taken the time to have written a blog yesterday, it would have been full of apprehension and fear. I have felt unwell all week, I haven’t slept properly for two, and the prospect of having a line put in my leg, staying overnight at the hospital and general failure did not appeal to me. A whole lot of frustration over something that was completely out of my hands.

This morning I woke up nice and early, after two and a half hours sleep, got dressed and checked my overnight bag. I was prepared. I had slippers, an eye mask and herbal tea. Every part of me had prepared myself for the fact that something would go wrong today. I think being out of treatment for so long, and then the illness last week knocked my confidence. Plus, I suppose I had to be told about all the bad things that could happen in case they did happen, and up to today, all the bad stuff I was told would happen, apart from the ruptured spleen, had happened.

To the Macmillan Centre I went, arriving ten minutes late at 08:40hrs to be greeted by Mamma Jones, who had made the early journey from Peterborough to be my servant for the day. I made my way up to the fourth floor and set up base on my bed for the day. My bloods were taken, and I was told that I had to wait for the results before they went ahead with my stem cell harvest. There is a more technical term for today’s procedure, but I cannot be bothered to locate the paperwork under my bed. So, we waited, and waited a little bit more and then we were informed that it was a Go. I repeat, a go.

From this point onwards, everything was easy. Having anticipated the worst, everything that came today was a pleasant surprise and a nice warm reminder that I can take anything the Medically Trained People and My Myeloma throw at me. I have been doing it thus far, I do not know why I doubted myself. I certainly do not know why I cried in the shower this morning.

The needles went in my arms with the greatest of ease, after a little assistance from a bucket of hot water, a heated blanket and local anaesthetic. The fives hours I was hooked up to the machine flew by, partly because we had Scrabble, and partly because I was inundated with messages. I even managed to swallow my pride and use the commode at 13:15hrs, despite my utter hatred of the wretched things. Seriously, how am I expected to look somebody in the eye who has to handle my urine. My waste. On the latter point, nature was helped by the loose fitting trousers I purchased and the technical sounds coming from the machine. It prevented stage fright. Oh, and I really shouldn’t forget the nursing staff. They made my day much, much easier. No, they made my day better.

I was as comfortable as I could be, thanks to Mum and EMan. The machine works in such a way that I was unable to move my right arm for over five hours, and my left arm was not free either, for that too was connected to a cannula. Right arm out. Left arm in.

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So, my blood was departing my body from the big fat needle in my right arm, going through several tubes attached to the machine, that extracted the stem cell and then return most of what was left back to my body via the cannula in my left arm. The machine itself was fascinating. One of my nurses said that it reminded her of E.T, Mamma Jones said it reminded her of Short Circuit and I just spent the day thinking of Innerspace featuring Dennis Quaid. Hollywood was omnipresent today, it would seem.

Technology is bloody brilliant, the machine costs I am told, upwards of £50k, and it seemed to know what it was doing. At least I hope it did.

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The procedure was not without side effects, of course it wasn’t. We are talking about me after all. For the harvest, the patient, that would be me by the way, is given a drug to prevent blood clotting. Somehow, I am told, this causes one’s calcium levels to reduce, which I was warned causes buzzing in strange places. My buzzing, and buzzing really is the only word to describe it, was in my lips. Maybe a vibrating buzz would be more appropriate. I also had some buzzing in my right hand and feet, but with hindsight, that was probably just pins and needles from lying still for so long. The calcium deficiency was treated initially by pills that tasted just like the dipper from a sherbet Double Dip. They didn’t work, so the big guns had to be used and I was put on a drip. Afterwards, I decided to self medicate with a strawberry milkshake, a smoothie and a yogurt. It’s basically the same thing. If I were a vegan, I would have had to turn to Ribena.

Fast forward to 15:45hrs, and I was told that my body had decided to behave. I did not need to come back to the hospital for further harvesting, because E.T. had managed to collect 4.2 million stem cells. This pleased me.

And that was my day… I have crawled just that little bit closer to my transplant. The provisionally start date for which is the 27 March, but more on that tomorrow. Right now, I want sleep and oh boy, do I need it.

EJB x

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4.2 Million

Have you ever wondered what 4.2 million stem cells looks like? Of course you have. We all have. Well, wonder no more. Today, is a lucky day. It is your lucky day, for below is a bag of 4.2 million stem cells. To be clear, I am talking about my stem cells.

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Good one, Body. We get to go home now.

In case you are wondering what the hell I am on about, I needed 4.0 million.

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Bone Pain

“You may experience bone pain. It’ll be different to the sort of pain you have had before.”

Yeah right, I thought. I laugh in the face of pain. Hahahahaha. I do after all, have a high pain threshold.

As it turns out, the Medically Trained People were correct. I am experiencing bone pain and the feeling is new. It’s kindly restricted itself to the pelvis and lower spine, unkindly, it did not assist with a good night’s sleep. It feels like little lemmings are playing the drums inside my bones and it is constant. The household favourite, Mr Paracetamol helps slightly, but not sufficiently for me to get comfortable.

Big Sister says it is nearly over. She is correct of course, the harvest is tomorrow, but that does not help me right now. It didn’t help me last night, when the drum was playing through my floo and down to my legs. It was like I was being punished for all the few times I have had pre-marital sex. At least that is what I thought at 04:30hrs.

If the world was a kind place, I would be able to stay at home today and watch films featuring mass destruction, which I find most soothing at the moment, but alas, it is not. I have to get up and go to the hospital for blood tests. I also need to shave my legs, as a contingency for tomorrow.

Why oh why is this my current circumstance? Well, it is of course, so I just need to suck it up and stop complaining. I bloody love complaining though.

I am trying to turn it around. If I am in pain, maybe that means that my stem cells are being mobilised and are escaping the sound of the drum to the relative quiet of my blood stream. I know what you are thinking, with my sort of medical mind, I could be a haematologist.

Onwards and upwards. Mind over matter. A means to an end.

It’ll be fine. I’ll be fine.

EJB x

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Oscar Night

Every year since I was thirteen, I have stayed up all night to watch the Oscars. It is a stupid tradition that I have, but it is mine.

When I was diagnosed, many things that I would miss flashed before my eyes. The Oscars ceremony was one of them, and film more generally. By late Autumn, I had reconciled myself to the fact that I would not be able to watch this year’s ceremony whilst eating pizza in my pyjamas at Mamma Jones’ house.

Truthfully, my tastes have grown in recent years and I do not find the nominated films, especially this year, that exciting. The ceremony though, all 3-5 hours of it depending on the year, I love. Say what you want about the Oscars, it is a sycophantic night after all, but it is a night about a love of cinema and that is why I love it, because I love cinema. Everybody who knows me knows this, which you could see if your saw my text messages today.

I thought My Myeloma would take that away. Even yesterday, still under the influence of cyclophosphamide, I feared it could not be. I thought it would stop me enjoying something and doing something I have always done. Unfortunately, My Myeloma has reduced the amount of money I spend at the cinema and my ability to focus for 120 minutes. My short term memory issues may have made me (temporarily) enjoy films less, but it has done nothing to my long term memory. My long term memory loves films and it reminds me how much of my being is steeped in that passion.

So, tonight, I showed My Myeloma what for. I am still in control of something, and although it tries, it cannot take my loves away from me nor my traditions. Sure, it prevented me from completing the Annual Challenge, but I can work on that.

I stayed up all night, and I have every intention of doing it again next year for that is what I have always done. And the year after that.

My name is Emma Jane Jones and I heart film.

Oh, and special thanks to Matthew of Northampton for staying up all night with me, and assisting me with my screenings for the last few weeks. Much appreciated. Our night was sponsored by Becks, for we are classy. Becks Blue for me. I have a transplant to worry about.

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And another oh, not everybody was so enthused. See?

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EJB x

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The Storm In A Teacup

Most days, I live with My Myeloma with only mild contempt. There are however days when I hate it. Really hate it.

I hated it yesterday and I am embarrassed by it today.

The Medically Trained People at PCH were unsure whether my symptoms were a result of the chemotherapy or if it is an infection, so, they have given me drugs for both. It took nearly four hours to get to this point. In a normal world, pre cancer, there would have been no need for me to have gone to A&E last night. It’s basically cystitis. I cannot escape the thought that me going was a complete overreaction, BUT I have to remind myself that I was acting on Medically Trained People’s orders. I have said it before, but I’ll say it again so people can fathom the extent of my frustration, My Myeloma makes everything sinister.

The drama would not have been as bad, had I been able to go to UCLH, but I couldn’t because I am staying at my parents. I believed that the Doctor thought I was wasting his time. At least I wasn’t a drunk. I was giving him a bit of variety on a Friday night. I am sure when he made his way back to his little station, he thought I was a time waster who should have just gone to the hospital where I am being treated. The fuss embarrassed me. There isn’t really a way round this, when I feel poorly, I need my Mum to look after me. That is not practical from London. No offence to the Trust that treated me yesterday, but I want to be treated at UCLH, a place where Mamma Jones has no cause to shout at rude receptionists who do not know what neutropenic means. I was however, very thankful to the on call folks who pushed my bloods through as quickly as possible. That was very kind of them and meant that I was home at 01:00hrs.

I guess this is all swings and roundabouts and the worry over something seemingly minor is normal. I just wish that sometimes, I could just have a bug, without the impact of it being a trip to A&E and/or acute paranoia.

The reality of having cancer, can indeed, suck.

EJB x

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The Bladder Infection

Until I spent my days writing about my illness, I was never really one to complain about illness. I do not like fusses and I am a firm believer in one consuming their own smoke if you will. What I am saying, is that for all minor ailments, I believe that people should just shut up and get on with it. And look how that philosophy worked out for me?

So, despite my minor ailment becoming a major illness, I still find it difficult to complain about the little things. But, complain I did today and do you know where that got me? Accident and Emergency. It’s beyond fun in here, accept it really isn’t.

I have a bladder infection, well, it’s not really an infection I don’t think. It’s a side effect of the cyclophosphamide. Normally, for the symptoms I am having, I would have some cranberry juice and avoid vigorous rubbing. I did have some cranberry juice, but no joy. In an ideal world, I would have rocked up at Peterborough City Hospital’s A&E as UCLH suggested when I called them earlier, and my drugs would have been here. I did call to say I was coming.

Instead, what has happened, is a long, long wait and I am still waiting. The hospital does not have an oral form of the drug I need. Apparently, UCLH are advising I go there. My bloods have been taken and it’ll take 90-120 minutes to get the results (unless my connections pay off) and then they’ll decide whether to admit me. If they had taken the sample when they made me do a urine sample, they’d be back by now.

I do not want to be here. I want to be at home. Failing that, I want to be at UCLH, where everybody knows my name or at least, I like to think they do and where I am familiar with the types of cannula they use. The cannula in my arm looks like something from The Sweeney.

One thing is for sure, the next time I experience a stinging sensation when I pee, I’ll think twice about telling anybody.*

EJB x

* Accept I will tell people. I want to get better don’t I?

Oh and this is Mamma Jones looking bored. I look worse than her.

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Stem Cell Mobilisation

I am learning so much this week I simply cannot keep track of it all. Well, I can, because this shit is my job isn’t it?

Today I am going to tell you about the riveting world of stem cell mobilisation. The lovely chemotherapy on Tuesday was the start of this process and then on Wednesday, I started a ten day course of injections to prepare my body for next week’s harvest. I am going to keep saying next week’s harvest because there is no way it is going to be delayed. Hear that germs? No way.

As I sit typing this, I like to imagine that my stem cells are making the massive journey from my bones into my blood stream. They’ve always been desperate for a swim, they just didn’t know it. Well, some have clearly flown the safety of the nest previously, but I need loads. Millions to be not at all precise.

They tricked me with the injections. It’s actually two per night and not one. At least these are already made up and living in my fridge, and the syringes have tiny needles. The injections are to be taken in the evening, every 24 hours. I have selected a poking time of 20:00hrs. There is nothing like predictability, to keep one on their toes.

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Lots of drugs.

I have finally been able to get my hands on a sharps bin, but I had to ask. The yellow boxes are dead exciting, and prevents my bin men from wondering why the hell there are 27 needles in my rubbish bin. Oh and apparently it is some sort of health hazard. I’m being thoughtful. The hospital did forget to give me antiseptic wipes, I have seen enough people give me injections to know I need those, but I am resourceful and some have been sourced.

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In a few days time, I may apparently experience a whole new type of bone pain because of the injections. As this is a ‘possible’ side effect, I definitely think it will happen, so Mamma Jones’ is getting me some co-codamol so I can still party.

There have been a few, and by a few, I understand it is just a few cases of people rupturing their spleen following these injections. I am not imagining that this will happen. I do not want to be a medical marvel.

My fingers then are crossed. These bad boys have to work don’t they? If memory serves, there is either a one in ten or three in a hundred chance of them not working, but again, positivity will see me through.

As a friend kindly advised today, I’m just hanging in there.

EJB x

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Peeing

Last night, my insomnia was boosted by a fun side effect from the cyclophosphamide. I think this email pretty much sums it up.

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Now, I am going to let you into a little secret. A doctor told me that I must go to the toilet whenever I had the urge after having this delightful chemotherapy. Seeing as this side effect hit me in the middle of the night, I took his advice literally and sat on the toilet for nearly an hour…. I do not think that is what he meant.

The email basically sums up that I have no shame, but, I think I knew that already.

Anyway, it was good that I asked the question, because it led to me having to take another dose of a drug called Mesna, which by the way, tastes like artificial beef flavouring. Much like I imagine, a supermarket branded packet of beef flavoured crisps would. It was not a pleasant taste in my mouth. My mouth should be saved for good things.

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Deja Vu

Via Email

No, no, no, no, no.

I cannot believe we are here again. I can’t believe I have let you back in to my life with such ease that for the last six nights, you have consumed it. Insomnia, I thought we had been over and over this. You are not good for me.

During our most recent encounter, I felt a change. I am totally at your mercy. You’d been creeping into my thoughts over recent weeks, but since last Friday, you have really got your claws into my psyche. I blame the drugs. The drugs got us here. Bloody fake menopause and it’s stupid syringes. Bloody cyclophosphamide and it’s bladder irritability. Bloody toothache. You adulterous cretin. That’s why this time feels so different, so out of my control. In addition to the anxiety and over thought emotions that usually accompany our dalliances, and the daydreams of things that will never come true, this time, you make me want to move. By move, I mean it’s involuntary and it is when I want to sleep. You make my feet move, my hands move and my toes. You make my pulse race. My brain is going at 100 miles per minute and so too are my extremities. You really got me this time. Goddamn you. I hate you.

It’s so unfair. You may be caused by a chemical imbalance, but I have also let this happen. I perpetuate your behaviour. Take this evening for instance, I didn’t need to eat those pork scratchings before sleep did I? But I did, and then you woke me up after all the effort it took for me to fall asleep to tell me I was thirsty, despite me taking a litre of water to bed. Once up, that was it. I was in my head again and in The Daily Mail’s gossip column.

You are making me grumpy in my days. Ordinarily, I would not have thought that somebody was a stupid twit for suggesting to me the day after I had it, that the only side effect from my chemotherapy was ‘just’ fatigue. Today I did. It was a rash judgement, but one that I could not help. I wanted to scream ‘you try having chemotherapy man who has stolen Scooby Doo’s vocabulary and see how hot you feel’, but thankfully, I held it in and just passed my feelings onto neutrals. Tits.

I think about you all the time. I think about you in the day, I think about you when I try to go to sleep and I dream about you when I am sleeping. I hate you Insomnia. You made me yawn in Middlesborough’s face. Several times.

We are at an impasse.

So, Insomnia. I would really like it if you went away again. You know I can’t say no.

Release me.

Emma x

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Cyclophosphamide

I am home now and I am currently experiencing the power of the cyclophosphamide. It’s powerful stuff. Prior to this, I have had one type of chemotherapy. This feeling is new. I always expected new side effects, but I realised in the clinic that I was receiving something relatively strong (not megatron strong mind) when I was given my drugs. In addition to the normal anti-sickness, I have another anti-sickness pill. I also have pills to protect my bladder. Yay. They have given me some spares of the latter in case I do not digest them because of mouth poo. Thoughtful.

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I do not feel well. That is a fact and one that I expected. I know there is a purpose to this and it is only temporary, and I shall keep telling myself this if in fact the vomit does come. I am also waiting for blood in my urine, which I am told may also happen.

I am taking all the precautions. I am drinking and peeing when required. I ask you this though, try drinking 2-3 litres of water when you feel nauseous and see how far you get. It’s a struggle, but one I have experience before and one I got told off for not doing. I am putting a lot of faith in the powers of squash right now.

So, this is it. I’ve fallen off the wagon at speed. If it turns out that I do have to vomit, I will do it safe in the knowledge that some good will come out of it. It’s like riding a bike with stabilisers before you can cycle on two wheels. My two wheels is the transplant.

Roll on the transplant. I can take it. I think.

Oh, in case you were wondering just how ill I feel, take a peek at this. Loved ones, prepare yourselves, I’ll look so much worse when I am in for the Megatron.

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EJB x

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