Tag Archives: Stem Cell

Day Zero

My Day 0 happened two days ago. Personal experience tells me that when one’s days are measured by pluses and minuses, it is very easy to lose track of time. That’s the reason why I am two days late in telling you what my second stem cell transplant was like, I genuinely have no idea what day it is. Well, I know it is Day + 2, but I only know that because I have just returned from my daily observations. 

Back to Thursday, which was two days ago (it helps for me to repeat things because my brain function is so limited, making my next few blogs, I fear, nothing but factual). As the Medically Trained People require a full 24 hours between the Megatron going in and the stem cells, my transplant was not scheduled in until 16:30hrs. Given the late kick off time, Mamma Jones and I went to a morning screening of a Disney film in Leicester Square. It really was a perfect way to waste time and escape the road they call Tottenham Court. Cinema is a form of escapism after all. I could only escape for so long, and I was soon back to reality. 

My reality was lying on a bed with a PICC line in my left arm and cannula in my right, whilst I thought of nothing but the pain to come. All the magical wonder I experienced during my first transplant, the big cylinders on wheels storing frozen  stem cells, which then need to be thawed to 37 degrees Celsius, had gone. Even the big blue gloves the Medically Trained People have to wear to handle the frozen cells failed to get me excited. 

Fortunately, fate decided to play a little game on me and my pals, so that I could feel something beyond apathy towards the actual transplant. All 90 minutes of it. 

Fate, gave me 10 minutes of irrational panic.

For, after the Doctor had done his final check and the go ahead was given, and the nurse put on the big blue glove and leaned into the big cylinder on wheels, what did they find? Nothing. They found absolutely nothing. Another Medically Trained Person attended and placed the big blue glove on her hand and do you know what she found? Absolutely nothing.

The stem cells were not there… Now, apparently this had never happened before. The scenerios running through my head about what had happened to my stem cells were pretty imaginative, but not as imaginative as Mamma Jones’ who had three scenerios (not one involved them just forgetting to put the cells in the frozen container). My favourite of hers was that the hospital had accidentially given somebody an allograft using my tainted cells. In comparison, I temporarily thought they had lost my cells, making my medical plan was a  waste of time and thus ruining all hope of recovery. I hid these thoughts well.

After a few minutes of pure imagination, a man appeared at the door, apologised and explained that my cells were still in the freezer. That was it. We all breathed a sigh of relief and I thought to myself, well, that was different from last time. You will find that my thoughts of late really are not that exciting. 

Mamma Jones then, in celebration and relief, nipped out to get me a drink. 

And so, everything was finally ready, the first of three bags was hooked up, I had confirmed my name and DOB and Mamma Jones appeared at my door with something that resembled a milkshake from Starbucks. I had a sip of the drink and I did not like it. Almost immediately after that, my throat began to tickle and then it began to swell… I thought about not mentioning it, but what if the throat were to swell even more? So I mentioned it and the Medically Trained Person said it was probably because of the ‘preservative’. 

There I was, ready to sue Starbucks, until I realised that it was not the extra special ‘raspberry’ flavour that had given me the extremely tickiliy throat. The cause was whatever scientific juice they had used to preserve my stem cells. I thought to myself, well, that was different from last time. It took Mamma Jones a little longer to realise that my allergic reaction was stem cell and not Starbucks based. The Medically Trained Person overseeing my transplant, had decided by the third bag that I was in need of some antihistamine, and I can confirm with you, that I was indeed. I had never experienced an allergic reaction like it. I felt like I was in in a movie. An anticlimactic movie.

Once I had been given the antihistamine intravenously, I can confirm that I was no good for anybody, not even myself. Words became a muddle and sleep became my target. By 18:45hrs, the transplant was done and the only place I was heading was to bed. For 14 hours. 

And that was that. In just 90 minutes my transplant done… There was no pomp and no circumstances. Apart from the mentioned mishaps, it all, looking back, sounds so simple. Three bags of cells and the deed has been done… 

If only that were true. 

If only that were true.

EJB x


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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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Subject: Me, Me, Me

The following is an email I sent to some of the Support Network in preparation for today and beyond. In some of this, I will repeat things that I have written previously, but in my current, highly rational state, I think this is a good indication of where I am, and what I need to come. Why send a private email you ask? Well, firstly it saves energy, and secondly, I hope to dispel an ideas that my medical plan is the same as having a wort removed… Mind you, until you have pooped your pants and hallucinated green goblins bursting out your stomach because you are in so much pain, it’s all relative isn’t it? 

Please note, some of the names have been removed because this really is, all about me.

From: Emma Jane Bones

To: Friends

Sent: In the early hours of 29 March 2015

Dear All,

Hello. As I have had the last minute go ahead from the powers that be, I thought it was time for me to send an email outlining just what the hell is going to happen. 

Fear not dear friends, it is not an emotional email, just one layered with practical points about how my year is going to roll from now on. If some of that sounds emotional or distressing, it was not my intention. BLANK, The Counsellor suggested me levelling expectations. I think this is levelling expectations.

I know that this may seem self indulgent, but the transplant clock is a ticking. Plus, although it will not be emotional for you, it is an emotional subject for me, so it is easier for me to write it down rather than to say it. Secondly, I hope it’ll save me from telling people the same thing over and over again, forgetting who I have said it to, and thus bore you into silence.

Before I get going, I would like to thank those of you who have organised and/or participated in recent activities. To everybody else who I have not been able to see, I thank you for still continuing to care. It’s all very much appreciated. More generally, I had hoped I would have been freer from this for longer, but that was not the plan, so I thank you for still being around.

I am going to try to keep this brief, but who am I kidding, I can never be that brief. 

The Plan

1 April
I will go to UCH on Wednesday morning, when all being well, I will be given the high dose chemo. I will initially be staying in ambulatory care, also known as the hotel, with my mother. 

Thursday is known as ‘Day 0’ in the biz and this is the day I have the transplant. 

3 April onwards
I will be in Ambi Care until the poop starts or my temperature hits 38, or I show any other type of illness. There is no real way of knowing how long this will take, last time I was out for 5 days, but that means nothing.

Once I am sick, I will move into the tower on the 13th or 16th floor.  They say expect to be in for 3-4 weeks, but last time I was in for 10 days… I know which option I would prefer. 

My hair will go FYI. My feelings towards this are surprising. I did not anticipate this much dread, but the dread is there. I’ll be shaving it off after I have had the chemotherapy, maybe on Friday. If anybody fancies doing this for me, let me know? I have George’s clippers.

On Discharge
Once I am well enough to go home, I will be heading back to BLANK until I am well enough to reasonably look after myself. I say ‘look after myself’, what I actually mean is able to return to the flat and only rely on BLANK for a few things instead of everything.

During the time between transplants, I doubt I will be able to do that much. Afternoon trips to the Picturehouse might be doable. Definitely/maybe no alcohol. As with everything else, we will just have to see.

For those of you with birthdays during this time, I will endeavour to attend, but do not hold it against me if I do not. 

June/July
I will go to St Bart’s for the second transplant. Initially I will be an outpatient, there is a chance I will remain one for the whole procedure, the odds they gave me for this are 50/50. 

Don’t let this outpatient nonsense fool you. Whilst the risk of a particular negative result is no longer 40%, it is still high. Those figures are not based on the first few weeks after the cells are introduced, it is based on the months (and I mean months) after and whether my body decides to completely reject my sister’s cells. If this happens, it happens, but fingers crossed it will not. Best to say that now, so you have realistic expectations. It may not be an operation, but it’s a serious thing. 

I have been told that the best case scenario post number 2 will be rashes and gut problems, with a side of fatigue. I’m hoping to go back to being a size 16. Anecdotally, the fatigue is something I have not yet experienced. I am afraid of this the most. I am afraid of only having the energy to lie in bed for months on end and become bitter. I do not want to become bitter.

I’ll hammer this point home, the recovery is going to be long. Real long.  The guidance says no international travel for two years, but I think this must be wrong. 

Hospital Visits for Transplant 1

Whilst I am in the hotel, I will be accompanied by my mum or sister. On Wednesday, I imagine I’ll be too tired when it is all done and I’ll just want my bed, so no visitors that day unless you want to watch me suck ice cubes during the day. 

Thereafter, I will be able to receive and I will need visitors.

As I’ll need my mother a great deal throughout the year, I have said she does not need to be around too much whilst I am in hospital. This will mean that I will need visitors, because being stuck in a room for 10 days (or more) is extremely isolating. 

Here is the problem, I may well not have the brain capacity to schedule your visits. At the start, I’ll be better at it, but when the pooing and vomiting starts, I’ll probably find texting back stressful. I’m not sure how to resolve this issue, other than just ask you to come and hope I’ll be free. Or you can organise it amongst yourselves. Not practical I know, but I’m just anticipating the worst case scenario.

There are no visiting hours, although the mornings are when the doctors do their rounds and when the cleaners come. You probably do not want to see them.

It sounds obvious, but if you feel unwell, do not come. I will have no immune system. Don’t buy me anything.

In between visits, feel free to keep in contact, I’ll be tired and might not always reply right away, but text messages are always fun.

You

After my release, I will be suffering from fatigue. It’s a word you will get bored of. The fatigue, as I said earlier, will get worse after the second transplant. I am not exaggerating when I say that getting over the last transplant’s fatigue was the hardest thing I have ever done. It makes it quite difficult to trust my emotions.


As such, it would be prudent for me to say that there will be times when I become depressed. I hope not many, but it will happen and that will make me question pretty everything and everyone. In turn, this may make me appear like an irrational and mean bitch. All I can say to this is please bear with me, and try not to give up on me. I have an aromatherapy stick this time for relaxation, and you never know, it might just be what I need to keep it all together. If it is not, I will  apologise to you in advance.

Not being able to get out of bed, for long periods of time, it is easy to feel forgotten and lonely. So, I’ll need one sided friendships for a while. Colin will need a break sometimes too and I may need people to cook for me and other things. All this will require me learning to ask for help, or you could just be forceful. That will be tough on you, because I will become quite dull.

My life will probably be quite myeloma obsessed. Let me reassure you now, this will not be because I like to be the centre of attention or talk about myself. I am always more than happy and willing to talk about anything else. You just have to start that anything, for, I will not know of anything else unless you want me to tell you what is happening on my Facebook feed.

Realistically, I will not be as well as I am now, until the new year. I might be pleasantly surprised, but the odds for that, are not in my favour.

Other

Last time I had a transplant, I sent text updates for major transplant developments. If you wish to receive these again, do let me know.

So, all that is left to say is thank you. I cannot emphasise this enough, but you are all appreciated. I know I have upset people in the past for not showing or saying this enough, but, most the time I think I have. I’m quite forgetful don’t you know.

Emma 

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The Red Herring

What does feeling better feel like? Are we there yet? How much of the biscuit have we had? Half? Three quarters?

Yesterday afternoon, I told somebody I could see it. That I could feel it. feeling better. In my sleep on Thursday, I finished a bottle of water and when I woke, I requested another bottle. I was drinking. I wanted to put a bra on. I also had an improved attention span, accompanied by a reduced desire to sleep. I did two jigsaw puzzles. Such was my improvement, that I took myself out of my bed and onto the sofa. I moved rooms. I also cooked something in the oven. I had faith that I would not fall asleep in the 20 minutes it took for me to heat some chips.

I was not capable of standing for a long period of time nor was I able to explain the principles of utilitarianism, hell, I still cannot of getting dressed, but I felt better. To me, yesterday’s improvement did not feel subtle; it felt magical. To anybody else looking in, I am sure I still looked like a weak person, with cancer, in need of assistance. The changes I experienced, to them, would have been subtle.

My physiotherapist recommended that I keep a diary of this period, noting what I could not do, by day, so I could look back a few weeks later, and realise the improvement. Up lifting, page turner. I should have known then, that this was going to be slow. And the improvements were going to be subtle. I am not keeping a diary by the way. I do not need further evidence of my regression to childhood.

I hate the subtlety of this. I hate giving my body time. Hatred and frustration defines me at the moment. I want improvement to move at the speed of light. Failing that, I would take improvement at the speed of sleep. I want to fall asleep feeling like I currently feel, to wake up and find that I can get dressed, stand up for longer than five minutes and leave my house for six hours. I am not unrealistic. After those six hours, I would expect to be tired and I would go back to bed. I just want those six hours. In that six hours, if I could not leave my house, I could bake or hone my arts and crafts skills. I could do something that is not lying.

The mental anguish this subtlety puts me under is worse than the physical pain I have to endure. My physical worries are not great enough to make me not notice my incapacitation, but they have not improved enough for me to be where I want to be. All this does is give me time to think, time to dwell and time to get mad.

It is a wonder that I am able to speak to people without shouting or crying the minute I open my mouth. I feel like doing both, but the latter for sure, would be a real waste of the water i do drink. I presume that the opportunities for me to converse are currently so few, that my survival mentality kicks in, and I have to be nice and calm, to ensure that they come back. I have to not show I am upset. I become grateful.

I am constantly being asked whether I am feeling better, and I appreciate that of course, but my improvement is too slow to provide am answer. If I answer with a negative, is that just me, being negative? If I answer positively, people misconstrue the significance of the improvement. Better is not better.

Yesterday morning I did feel better. My ability to drink more than a sip, was the key indicator. For a period, I was also able to converse. I was walking around. I did a fruitless search for dead rodents in the garden. For an hour, it felt like a school holiday. And then, it did not. I couldn’t do those things. Better is not better. My deterioration was not subtle. Every gulp of water I had had, every morsel I had eaten, during my period of good health, rudely and uncomfortable made a reappearance. Once my stomach had emptied itself, without the need for digestion, I became a weak little thing who needed her mummy. Vomiting is never fun.

And that brings you up to the present. I am in bed. I am weak. I am not wearing a bra. I am frustrated. I also keep forgetting that I cannot lean or roll to my left, without causing a lesion headache.

All of it, really is very annoying.

EJB x

P.S. Thursday’s Full Blood Count did not contain any shockers by the way. My boaster from the previous Thursday had worn off, but everything seems to be ticking along.

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The Little Princess

Yesterday, I was absolutely positively excited and relieved when Mamma Jones entered my hospital room to tell me I was being moved up to haematology. It was even better, I was moving up to T13, back with T13s Angel.

What followed after that, seemed like an incredibly long wait until the porter arrived to wheel me up, it may have been a long wait, I currently have no concept of time, so it could have been 10 minutes.

It was a long wait in my time, because by yesterday morning, I was truly dissatisfied with the treatment I had received after coming through A&E. I had been put in a private room on a ward I was well acquainted with after last year. The room was not clean. There was blood on the floor and somebody else’s urine in a jug in the bathroom. Mamma Jones found a bogie on a wall. It was just, not nice, and it set off an uneasy night, which was made worse by the nurse’s response to my concerns about the cleanliness. She was coarse, dismissive and appeared to have no understanding of myeloma nor what being neutropenic meant. Upon arrival I had asked for some more morphine, and she said she would bring it in 30 minutes because it had not been two hours since my last dose; it did not come. She advised me, neutropenic and all, not to touch a lot in the room if I was concerned about the cleanliness, that comment made me itch. I also asked for some water, which I finally received at 07:00hrs. Prior to that, however I was given 11 pills to swallow, fortunately I had taken my own water. When my water was delivered in a jug, I asked for a cup, and I was told that there were no cups available. I did not drink the water.

During the night, I requested some drugs which the on call doctor had prescribed me. The ward I was on did not have these in stock, and another nurse said that the pharmacy would dispense it in the morning. She had tried to source the mouthwash for me, but failed, but was able to give me something similar, so I was thankful that she had tried to help me. In the morning, I then queried this again with the nurse with the jug, and I was told that she would not be able to give me any additional drugs until I had been seen by the doctors and as I should not have been there, she had no idea how long I would have to wait. I responded with a smile and condescension and explained that I had been promised the drug the previous night, and that she did not need to wait for a doctor because a doctor had prescribed it on my file. After a few minutes of her arguing with me, she then grabbed my file handed it to me, and said that I should point it out then. I did just as she asked, and she left. I did not get the drug.

As I waited for Mamma Jones, it was clear that people had no clue about me. Nurses, porters, cleaners and other staff wondered into my room without washing their hands, or they left my door wide open. The cleaners for example had a conversation with each other in my room with the open door about my complaints about the cleanliness. At one point, I heard somebody outside my room say ‘no,no, no, you cannot go in if you have a cough… She’s got something which means she can get more ill’.

When the porter finally arrived, I was tired and ill, but I was ready to be moved. We were accompanied up by a new nurse, who was, odd. Odd is the best and most appropriate word. After I was out of the room, and Mamma Jones was gathering my belongings, she said ‘have you got your tiara?’ I was confused by life in general at this point, and responded as such, to which she responded with ‘you know, little princess’s have tiaras’.

I am 29. I have cancer. I am in the middle of a transplant. I am no princess. Try a day in my shoes you haggard, spent too much time in the sun, horse faced wench.

This made me angry for the rest of the day, to be sure. The anger grew however, when thankfully, I returned to a place that 11 months ago, made what was happening so much easier, and I encountered some exemplary care. There is no other way of describing it, though I am pretty sure I will try during my staff.

It may not be that haematology nurses are any better than other nurses, but for me, they have something that makes it easier to manage my illness, so imagine what wonders come out when they are treating somebody who is having a transplant. Yesterday, one of the Angels had to go through some of my excrement for medical purposes. Unbelievable.

It seems to come so easily to them, and that made me angry, I could not see why the handful of nurses (they do not deserve my usual moniker), would spoil it for a majority. Fortunately for the dear, sweet wonderful NHS, I am with Medically Trained People all time and I see the good they do. If, however, my experience had existed solely of the hours I was in yesterday, then well, the less said the better.

Maybe I am a princess because my main Angel (for you get a lead), told me that she was happy that she had me and said when she saw my name on the list of patients she hoped I would come to T13 because she remembered me from last August. Yep, that gives me a big head. It upset me at the same time, because I do know what I did differently with the nurses down on the first floor.

As the day progressed, the main Angel was angered by the earlier comments by the woman, and raised it via the Angel Sister, who by the way, is also very nice. Not at all scary, which is always a bonus. To cut a long story, slightly short, the nurse thought she was being funny. As for the cleanliness, I will be complaining about that in due course, but I am just thankful that I got out of there.

I am told that whilst I may change rooms at some point, I will not be leaving T13, and to that, you can get an Amen. The illness is definitely here, in all of its glory, and I need to be in a place where everybody knows my name, or at least, be somewhere where the care as at the absolute highest of nursing care.

I believe I am where I should be, and my, is that, and the IV, making this much, much easier.

EJB x

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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A Crossroads?

Have I come to the end of the road called PADIMAC? I do not know. My doctors do not know. Perhaps PADIMAC has been my A road leading to a motorway. Maybe I am just at a roundabout. Going round and round and straight on a bit and the round again. The last three weeks have felt a little bit like driving through Milton Keynes. Yes, I know I have exhausted this particular metaphor. I will stop now. I promise.

Today, as expected, one of my doctors talked me through the other treatment options should my paraprotein not reduce below 20 on Friday. The blood that will tell my doctors the answer was removed from my arm at 10:30hrs this morning. Who knew that a few millilitres of red and white blood cells and a bit of plasma could influence so much? Not me, that is for sure.

I was relatively relaxed prior to my appointment. I expected to be told that I would be put on a different course of treatment similar to the one I am on now. On reflection, I may have been told this.

Earlier today, I had a slight whine about how much of my time is spent waiting. Perhaps my whinge was slightly unfair, but, that said, I now have to wait two days to see whether I will start my fifth PADIMAC cycle on Monday. I knew this much already. I need to drop four points or whatever the measurement they use is called. This is Treatment Option 1. If this is not the case, I will have to wait a little bit longer…

If my paraprotein level is above 20 on Friday, which would mean that I have dropped less than three points in my fourth cycle, I will need to have another bone marrow biopsy. Two weeks after that, once the results are in, the Medically Trained People will decide how I am going to proceed. This is called limbo.

If my bone marrow juice and bone tells the Medically Trained People that I have had a good response, I will go into hospital for an intense dose of chemotherapy followed by stem cell support. This is Treatment Option 2. Treatment Option 2 will steal my Christmas.

If I have not had a good response, there are two further treatment options. Treatment Option 3 also steals Christmas and is another high dose of chemotherapy in hospital. Treatment Option 4, is what I thought I was going to be told today, and involves a drug taken orally in my flat on a four week cycle.

This is all I know. I do not know how long Treatment Options 2-4 will take, nor do I know what they involve and their vital statistics. I have many questions; the list grows every time I talk to somebody. I must try not to over think this, all I will get is dead ends (whoops, the metaphor came back). I cannot influence this.

My doctor rather helpfully drew a diagram, the sort one would find in ‘More’ magazine, for clarity. I can confirm that it is clear.

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I am frightened. The devil you know is better than the devil you don’t. Fact.

Think 19.

EJB x

πŸŽ„πŸ‘»πŸ˜­It will only be one Christmas, it’ll only be one Chistmas, it’ll only be one Christmas.πŸŽ„πŸ‘»πŸ˜­

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