Tag Archives: Melphalan

Day -1

As I had long anticipated.Yesterday proved to be a busy, tiring and emotional day. Fortunately, as I had long anticipated, the majority of my emotions were overtaken by the sheer practicality of all the needles, waiting and consenting. It was a day of work, if your work is displaying super human strength and kindness whilst under duress.

Day – 1 is the day popularly know as the day one receives their Megatron chemotherapy. It could be Day – 2 if one was unwell and the transplant is postponed by a day, but my title is one of hope. I will be getting my transplant today, providing the nausea behaves itself. 

Whilst I was too busy yesterday to write another blog, I was able to make a note in my Notes of the key timings and events that made up Day – 1. It was no party.

06:30hrs: Awoke feeling refreshed and rejuvenated, if those things meant I awoke feel anxious, unable to sleep but eager to get things going… I then did the things we all do as part of the morning routine of getting ready to leave the house/flat.

08:36hrs: I had said my brave goodbyes, largely ignoring my dear Bruce and at this point, I was sitting in a taxi driving down my street. The driver took the bumpy roads.

09:00hrs: I arrived at the hospital, greeted by my mother who had arrived nearly an hour luggage. The first priority was to unload all our stupid luggage, dumb luggage. I really do have a great deal of luggage. I packed four books for light toilet reading.

09:12hrs: We walked down the stairs to Reception 2 on the Lower Ground Flood, and booked in for my PICC line appointment three minutes later. I also discovered a concealed toilet.

09:15hrs: Surprise, surprise, a Medically Trained Person called out my name and with that, I was led to a room I had visited once before. It was the first point in the day I felt Deja Vu, and Deja Vu it was. For legal reasons, I had to listen again, despite remembering, to what they were about to do to me, the risks involved with the procedure and then I signed a yellow form to say I understood it all. 

I then removed my shoes and jacket and lay on a hospital bed under blue surgical sheets whilst another Medically Trained Person pushed a tube through a hole in my left arm, whilst he looked at a screen and a lady looked at my ECG results. At some point, I was told off for contaminating a scanning device with my right hand. 

  


10:13hrs: The line was in and off we went to Ambulatory Care on the Second Floor, via Costa Coffee. On arrival, I introduced myself as ‘Emma Jones, arriving for the first day of transplant stuff’. I was told it was one hell of an introduction.

10:30hrs: Alternatively known as Observation Time, meaning I had my bloods, blood pressure and temperature taken, I got weighed and apparently I am 5ft 7″; I remember being taller.

Shortly after this, I was advised that I was going to be seen by the doctor shortly and I would hopefully have the Melphalan (Megatron for you and me), around 13:00hrs. I would have to wait until then because the drug would need to be prescribed by the Doctor and then ordered from the pharmacy.

At some point, I did see a pharmacist.

12:15hrs: The Doctor finally made an appearance, to be fair, he had made several appearances on the floor, but it was at this point he introduced himself and took me to room 2.6, for a quick chat and another yellow form. I would have mentioned this before the last one, but I was told that this procedure is not curative and there was a 2-3% chance that I would not leave the hospital after it. The rest of the risks involved infections and talk of intensive care. So, I signed the yellow form quoting something I or somebody else said last week and that was “if I did not sign it, the result would definitely be negative”. 

The Doctor, who was Medically Trained also told me that given the amount of treatment I had had, my heart and kidneys were in “great” condition. Mamma Jones said “good stock”, I thought, a pat on the back for obese people everywhere.

I then wandered back to Mamma Jones and the nurses, and I was told  not to come back until 15:45hrs, at which point, I would have the Melphalan at 16:00hrs. Great, I thought, food.
12:38hrs: Before food however, we collected our luggage and checked into the hotel. Also known as the Cotton Rooms. The Cotton Rooms looks just as it did before. We are in a twin room over looking the beautiful sight that is, the Macmillan Cancer Centre. Just like before. I also made sure I got a DVD player, which is also, just like before.
A lunch then filled the gap, along with very practical trips to Boots and Sainsbury’s for fizzy water whilst I can drink it and popcorn whilst I can eat it.
14:51hrs: We returned to the cancer centre with giddy excitment ahead of the chemotherapy. In addition to my mother, I was accompanied by eight ice lollies from Sainsbury’s. 
  
16:24hrs: I was hooked up to a drip and the Melphalan, started my first ice lolly, and with that, it all started. 
16:31hrs: Ice lolly 2
16:38hrs: Ice lolly 3
16:48hrs: Ice lolly 4
16:56hrs: Ice lolly 5, an ice lolly that was accompanied not by chemotherapy, but with a flush. After a bit of faffing, all was done and I was released until 09:15hrs today. 
17:25hrs: Bed and pyjamas. Bed and pyjamas in the hotel. Needless to say, I was very tired, but not tired enough to sleep, and so I watched High Society and half of Pretty Woman.
Aren’t transplants just a hoot?
As for this morning? I woke up with nausea, fatigue and swollen feet. I still had bacon mind. 
EJB x 

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Patchy

Now then, this particular round of chemotherapy, as well as making me lose my stomach lining, has also made me lose more hair than I have ever lost before. That’s not hard, I suppose, but I somehow feel like an old pro when it comes to this. Been there. Done that. Shed the tears. I might not like it, but there is something familiar about it, like a bloody nose.

The hair loss was expected and it was no where near as traumatising as it was the first time around. I do not like the end result, but as I have said many times since I entered the hospital, ‘I’ve lost it once, and I’ve seen it grow back. It will grow back’. It will grow back.

For those of you who have never personally endured hair loss, let me tell you something, it does not fall out evenly. You do not fall asleep with a full head of hair to wake up looking like an egg. It is slow and it is even. It is not a cheap haircut. My head currently looks like it is covered in a patchwork quilt. I described it yesterday as a pattern that would have been great on a jumper three years ago.

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A Medically Trained Person shaved my head for me on Monday, however, I suspect now that he should have done a grade zero, instead of a one, if that is what it is called, I’m used to scissors, for I am still shedding. My face has permanently looked like I have been sat in a hairdressers for six days now. It’s amazing that even after the head was shaved, the volume of hair that has managed to appear on my skin, down my cleavage and in my bed. It’s everywhere. I have had to get my bedding changed twice a day because of the prickles from my bristles. I may enjoy pulling out my remaining hair, which makes my bed and surrounding floor look even worse, but I think this is just hurrying the process along. I do not find it soothing. Not at all. That would be perverse.

I am not allowing myself to touch my eyebrows. My chin? Sure, all the time, but I absolutely do not want to antagonise those furry bad boys. Ideally, they need to remain and so far, their are standing firm. My eye lashes on the other hand are not quite so steadfast.

I am not completely hairless yet, and I doubt I will be. It would appear that the hair I would benefit from losing, remains. I just investigated what was happening up my nostrils for example and I can confirm that they still have their own inbuilt central heating system.

I think it is only appropriate for me to add that the head was not the first place I began to lose my hair. Veet. Veet.

EJB x

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Expecting the Expected

It is strange to be surprised by the expected, but I am. I knew that I was going to have a dodgy tummy, nausea and fatigue, I have been preparing for it for so long, I was almost bored of it, but now I am in it, I can wholeheartedly say it is nothing like I expected it to be.

I think my current situation, is one where to truly understand it, one has to live it. Saying the words, will not make you comprehend the force. And let’s face it, there is a lot of force. No amount of preparation is going to make a stomach cramp any easier.

On Sunday afternoon, when the diarrhoea started to come, I sat on the toilet and thought to myself, that if that was it, it was going to be easy. Clearly, that wasn’t it. Fast forward a few days to last night, when I was forced by my body to have my tenth poop of the day, whilst doing that, I developed a cramp that was so hideous, I vomited (500ml by the way) and sweated. It then took, three more visits to the toilet, five hours, IV anti sickness, IV fluids, oral anti sickness and stomach pills and oramorph for the pain to subside. Until that pain did subside, I spent that time awake, unable to do or say anything, lying on my bed thinking, this must be the worst I am going to feel. It must be the worst right?

I do not know if I have yet hit the bottom. I currently figure that my diarrhoea and vomiting cannot worsen, but my fatigue can, if I continue to lose fluids at the rate I am losing fluids. That’s basic science right?

I am going to try and explain my current role in this world as Green Excrement Girl, but I am not doing it to gain your sympathy, it is just to explain what this feels like. I’m having to think of it in much the same way; if I start to feel sorry for myself, I become a martyr to it. I am no martyr. Right now, this is my job. So, as well as expecting the expected, I have to accept it too. I am just trying to ride the most unpleasant wave that has ever existed.

Since Sunday evening, I have not been able to hold down any liquids or foods that have entered my body. The Medically Trained People were trying to get me to drink 2.5 litres a day, but it was decided yesterday, that attempting to do 0.5 litters caused so much discomfort, that I did not need to do it. I really am trying, and yesterday, I even felt hungry, but after a few sips of water, spoonfuls of mashed potato, the mixer in my stomach started churning and I had to run to the toilet to deposit it. This happens whenever I drink or eat. On Monday, it was worse, because I ate much more, thus the sheer volume, was, well, impression. Mamma Jones was soon sent out to buy moist toilet paper. Practical. I do not want to irritate any piles.

Managing the diarrhoea is one thing, but it is not my only symptom or problem.

Practically, it requires me getting out of my bed on the lefthand side to unplug my pump, wheel my fluids and myself round the foot of the bed, navigating wires and other obstacles, past the sofa, to the bathroom. On competition, when I am back on my bed, the pump needs to be reset, because it’s battery is broken. I taught myself how to do this yesterday, because I could not stand all the beeping.

Physically, the diarrhoea is accompanied by nausea, which until last night, had just been nausea, and not full scale vomiting. If you were wondering, the vomit, was the same colour and consistency as my poo; slime green. So yes, nausea, it is a bugger. I feel constantly sick. There are scales to it, but in short, there is always a feeling of sickness around as is its friend, the stomach cramp. The stomach cramps, for ladies, feels like the worst sort of period pain you will ever have, at it’s worse, I imagine it is like giving birth. I actually think this. It constantly feels like they is a wooden spoon, in my stomach making potions, occasionally making sure it gets all the ingredients by scraping round the sides. Last night, I knew there were drugs in me, because my mind started to create stories for what was happening in my stomach. I kid you not

So, as somebody has had a nasty bout of food poisoning will know, because of all of the above, I feel weak. I am dehydrated, my blood pressure is low and I constantly tired. Yesterday, because of the dehydration and the byproduct, dizziness, I had to sit on the toilet for ten minutes longer than needed, to ensure I would not faint on the long walk back to my bed. Again, with that sort of activity, I am running a constant risk of piles. I am talking grade 4 level here.

Above are my main adversaries, but I also continue to fight a fever, a toothache, a sore throat and ugliness. Oh, and my neutrophils are flat.

Fortunately for me, the Medically Trained People are marvellous, and more crucially, they have seen everything I am experiencing before. The Doctor explained yesterday that they can give me so many more concoctions to get me at my most comfortable, she also said, which I guess is a good thing, nothing is happening that should not be happening. I am no medical marvel.

The difficult thing with all of this, is that nobody knows for certain if this is going to work. I have seen a lot of comments on the blog mentioning the word ‘remission’ and I have been asked about it much more than that in person, but the truth is, my transplant is unlikely to give me that. Everybody’s experience is different. It’s my best chance. The reboot is what I need. Back in January, when I was sitting on my paraprotein level of 20, I was told that it would be highly unlikely to walk out of a transplant with a level of zero. At my last Clinic Appointment, the Senior Medically Trained Person said that a decision will be taken after my transplant as to whether I have to start a new course of treatment straight after or if they are just going to let my body be for a bit. It could be that my body does surprise everybody, but I think we all need to be realistic about what my transplant is going to achieve. If the last 11 months has taught me anything, it is that My Myeloma is one stubborn arse. Time will tell. I am going through this, putting up with this, because somehow, maybe not immediately, I know it is going to give me a holiday, but more importantly a return to normality.

As for today, I am hoping for a better one. Late last night, my stool sample came back and I do not have an infection, which means that I can take Imodium. Yes. Imodium. The day might not be better, as I was threatened with having to measure all my outgoings yesterday, which sounds fun. Time will tell I guess.

Today is Day 7.

EJB x

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Potty Mouth

For two days, anything entering my mouth has had to encounter what feels like a layer of sandy cling film covering my tongue and cheeks. That, apparently is a common side effect of the the Melphalan and it is a reason why I had to eat all of those ice lollies and pour green poison into my mouth four times a day. Despite the precautions, I was surprised this morning to discover, whilst I was looking at myself in the lift mirror, that my tongue, looks like this;

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Hot Box

Some time ago, whilst I was preparing myself for March’s transplant, I was informed, and it was informed, I am talking volunteered information here, that the Melphalan induced bowel problems, whilst horrible, were not considered to be ‘offensive’.

At the time, if memory serves, it was during my harvest, I asked for some clarification. By ‘offensive’, what was meant was that the Melphalan side effects do not come with an unpleasant smell. Great, I thought, I can defecate in front of my friends and they would be none the wiser.

Unfortunately, whilst my faeces has yet to turn to liquid, I am experiencing increased, erm, action, in this area, and I can confirm, in my windowless hotel room, all evidence, thus far, has been to the contrary.

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Megatron

So, there we have it, I have had the Megatron, formally known as Melphalan. It has actually started. I have said it three times today, and thought it a few times more; there is no going back now. After six months of planning and waiting, I am here. I am scared, but today, my main emotion is excitement. Getting the Melphalan in me, is my starting point. Thank fuck for that. Finally.

At 13:56hrs today, a big old bag of the toxin, made its way through my PICC line, after an anti-sickness, some steroids and saline. This was followed by another trickle of saline. Easy peasy, right? Well, I guess for that, and the three anti sickness drugs I have in my possession, time will tell…

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On the side effects side of things, my body is behaving the way I was told it would behave. I feel okay. Yes, ‘okay’ is the right word, well, maybe a few notches under ‘okay’. I am tired, sure, I have had a busy day after all, and I have been out this evening looking at the healthy people on Tottenham Court road whilst eating pizza and drinking as much fizzy water as I can because my stomach decides that it cannot take it anymore. I have not been able to be as attentive to my phone and social media as I wold have liked, and I have only checked my Blackberry once. I have managed to see some friends in a place that was not my hotel room, because the Medically Trained People advised me to leave my half way house, if I could. I am not pooing out my immune system yet, nor am I vomiting my guts out. Give that time.

I am aware that I had many challenges today, I do not need to spell that out, but I can confirm that my biggest challenge looked something like this:

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For 35 minutes as the Megatron entered by body, I sat on my adjustable chair and made my way through not one, not two, not even three, but four orange Calypsos. It is a well established fact that I like ice lollies, but not that much. My initial approach had to be adapted approximately twenty minutes in, when I could no longer place the entire icicle in my mouth to suck because my jaw started to lock, and had to resort to licking the tip. Boys, take note. I tried to be graceful, but alas, the other patients thought it was funny (they had been through it before), one challenged me to see how many I could get through and I realised that I cannot eat with ice in my mouth, especially to strangers.*

And that was it. Chemo in. I am going to lose my hair now. I am going to get sick. And, I knew it when I woke up this morning after a terrible nights sleep, I knew something I was not ready to say until that point… Bring. It. On.

Bring it on. I can take it.

EJB x

* The record in the Ambulatory Care for the number of ice lollies in a single session by the way, is nine. I think they had a sweet tooth.

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