Tag Archives: Tests

Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out. 

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The Urine Sample

Every month, I have the humiliation of doing a pregnancy test before I can be prescribed my Revlimid. The humiliation is on two counts. The first and hardest is because we all know that I, in all probability will not be able to have the babies the natural way, if any way at all. I am all too aware of this. The second count as also on a personal level, and that is as time goes on with my treatment with it’s stupid side effects and expanding jelly belly, the physical act required to get pregnant falls further and further away from my grasp.

Every 28 days, when I attempt to pee into a cup, I am reminded of these things. No matter how many smiles I am greeted by when the form is signed to confirm that I am not pregnant, I cannot help but feel hard done by. I was so much prettier in 2011 and I’m pretty sure I would make an awesome mother. Just ask the dog.

Given the emotions it stirs inside me? I have to mentally prepare myself for the question I get once a month, because apparently the negative urine sample is not enough. ‘Is there any chance you can be pregnant?‘ No there bloody is not. I am a essentially a barren leper who cannot tie up her shoelaces. The one time there was a remote chance of a ‘no’, Mamma Jones was with me, so I lost the satisfaction of the truth and still said ‘no’ to save us all the embarrassment.

The thing with a myeloma clinic, granted I have only experienced the one, but I am sure it is an issue that all childbearing age myeloma sufferers on Revlimid or Thalidomide experience in all the clinics across the land, is that due to the age of your average sufferer, the act of doing the pregnancy test is never seamless.

The test itself can often be overlooked until after the appointment, and even if it is not overlooked, I still have to get the jar, do my business and chase down a Medical Trained Person in front of other patients to give my sample to. To me, it just highlights my pain. And the question I ask you is this, who really wants to see my pee? Probably not the five or six people waiting impatiently for their appointment.

To cope with, or dare I say, to avoid the harder thoughts associated with doing the pregnancy test, I have decided to make something of an entertainment from it. The entertainment generally requires me being proactive, when it comes to serving up my pee. Even if I am in private with a Medically Trained Person, I will make a joke out of having to do it. Humour as a defence mechanism? No way. Not me.

Two months ago, I had to interrupt a Medically Trained Person talking to another patient to ask for the pregnancy test, and for some unknown reason, the look on the fellow patient’s face was a picture. I wanted to shout at him, that yes, young females can get myeloma and yes, we also have a less than 5% chance of getting pregnant and yes, I am painfully reminded of this every month. I did not shout at him however, I just took great pleasure in seeing the embarrassment on the Medically Trained Person’s face. She does not know yet that I do not embarrass easily. I did not get any humour from this month’s test, so I am using this to remiss about the good times.

Completing the sample is a challenge in itself. Like the Crystal Maze or darts. I am not one who can pee on command, so I have to make sure I drink a sufficient amount of fluids well before my arrival at the hospital (for your information, I discovered recently that being well hydrated helps people to enter my veins also), and then, I have to hold in the liquids until the appropriate time. I have started to blame this act for my weight, something that is also captured every 28 days (the nursing assistant felt the need 15 minutes ago to point at my weight last month after I was weighed today so I was aware of the further gain). You may not be aware of this, but the menopause can weaken one’s bladder, so there was one occasional three months ago where I had to find somebody quick snappish to release the pressure.

And now for the biggest challenge, something that has become a game, successfully and neatly, peeing into the jar. I have never been able to do this. Not myeloma never, but in life never. I got close to it last month, but all I way say about this month’s attempt is thank goodness they have bucket loads of antibacterial hand wash.

This week is special, because not only do I get to confront my fertility demons today, on a Thursday, I also had to do it on Tuesday morning prior to a MRI scan. Well, I did not have to do a sample, I was just asked the question.

I do understand that it is a legal requirement, but sometimes, I would like people to realise that it is not just a tick box exercise to me. And, let’s face up, there are so many other things to wind myself up over on clinic day. So much.

On a lighter note, here is my pee. I can confirm that I am not pregnant.

IMG_0916.JPG

EJB x

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Give Me A Seven

It is rare for me to get excited about anything myeloma related these days. Gone is the time when I had targets, hopes and dreams. I still have a diluted version of the last two I suppose, I just liked the sentence structure. My dry wit, however, does, if one is reaching, offer some evidence towards the statement above that I really do not get excited about anything myeloma related. I have been there, done that and got the stem cell.

So, imagine my surprise this morning when I did get excited. I did jump up and down in my bedroom and I did</em scream out loud. As a result I did procrastinate so much that I had to get a taxi into town; that is my excuse and I am sticking to it.

In this morning’s post I was pleased to receive the note of my last doctor’s appointment informing me that my paraprotein level is no longer 8. My paraprotein is now 7. Seven. It didn’t go up.

I know there is not much in a point. It doesn’t change my circumstances. I have previously talked myself into thinking that a point up or a point down in the world of paraprotein means very little.

That said, for today, I’m going to let myself have a little bit more hope than I did yesterday, because recently, not even in my dreams was I hitting a seven.

A seven.

EJB x

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The Busy Day

Today, I have had a Busy Day. A really Busy Day, for today is my pre transplant test day. For somebody keen on her bed, today has been daunting. During the period I was out today, I was very aware of a constant desire for me to place by bottom and feet on a sofa. Anybody who is anybody knows it is rare for me to be out of bed by 09:45hrs, let alone be in the Macmillan Cancer Centre, conversing, by then. I was warned that I would be spending a full day at the hospital and I can confirm that they were correct. I spent a full day at the hospital. Childishly, I saw this as practice ahead of my transplant, accept it was nothing like transplant will be, for today, I was going back and forth like a yoyo. Come transplant time, I will not be able to make my way between the clinic, Nuclear Medicine, the clinic again, Nuclear Medicine, Reproductive Medicine Unit, Nuclear Medicine, Reproductive Unit and the main pharmacy. People will have to come to me. Neither option is desirable.

Knowing that I was in for a Sherbet Dip Dab of treats, I decided to write my activities down, as I went along. It’s a diary of sorts or gibberish depending on which side your bread is buttered.

It would be fair to say that although I anticipated a long day, I did not anticipate it panning out the way it did. I am exhausted, I am not comforted by what I did or heard today but I am slowly realising that it is actually happening. Very soon.

So, I give you, My Busy Day.

07:30hrs – Bed
Alarm clock sounds. I turn it off.

07:45hrs – Bed
I shout at myself to get up; this is proceeded by somebody else shouting at me to get up. I get up and do the usual things a clean person does in the morning time. My planned departure time is 09:00hrs. Don’t get jealous, but this morning, I treated myself to a bowl of Start. Breakfast is the most important meal of the day, some would say. I am not going to lie, I tend to look forward to the meat I get in the evening.

09:00hrs – My Toilet
A visit to the toilet proves necessary. It takes longer than anticipated, which ultimately rules out my planned route to the hospital via the 30 bus and departure time of 09:00hrs. Expenditure. Brilliant. The activity takes even longer, and so, I multitask and order a taxi via the Hailo App (something, I am sure was designed specifically for individuals with myeloma). Twenty-three minutes later… I was my hands.

09:39hrs – My Street
I get in the taxi. I am sure you loving this level of detail.

09:51hrs – Macmillan Cancer Centre Ground Floor
I arrive.

09:54hrs – MCC Lower Ground Floor, Reception 1
It is time for my monthly paraprotein test. As I made my way down the stairs, I was pleasantly surprised to see a lady in a white lab coat sitting down in the waiting area., which meant one thing and one thing only. No queue!. Today might work out after all.

I informed my Number One Blood Taking Fan that I shall not be coming in as often. He did not look as sad as I anticipated.

09:58hrs – MCC Ground Floor
Mamma Jones arrives and I get myself a cup of tea.

10:02hrs – MCC Fourth Floor Reception 2
Upstairs for my 10:00hrs appointment only two minutes late, which is fine because they too are running late, and for me, I am practically early. I get weighed, have my blood pressure taken and have some chats with Medically Trained People as they pass. I can feel the love.

10:26hrs – MCC Fourth Floor, Doctor’s Office
In I went. I had a brief discussion about my current state of health. I think now would be the right time to say that my doctor thought the person who yanked on my neck is a fool. I am bad mouthing that individual all over town and I have no shame about it. The perpetrator should hold the shame. Anyway, that is by the by, for we then moved on to my transplant. In truth, my 20 minute appointment did not tell me anything I did not already know. My last paraprotein level remained at 21. My admittance date is now Tuesday 16 July (joy). 13 days.

Now, for the mystery of the day, when I last prepared for a transplant I was given a drug to protect my ovaries from my chemotherapy. It was not foolproof, but it was something that improved the almost certainty that the transplant would leave me without the ability to bare my own fruit. My doctor made it clear that I would be infertile after my transplant and that it would not be delayed. I took this as a subtle hint. I sense that this means, that it is too late for me to try and protect my ovaries and I will be infertile. Promising. I will find out more later in the day, for I have an appointment with a person trained in ladies’ bits and pieces at 15:30hrs.

I should probably add that a decision will be taken after my transplant whether I will require further immediate treatment then. I responded by saying that I did not want to think about that now, for the transplant now has to be my priority and I really need to look forward to a period where I will not be in treatment.

I smile. Mamma Jones smiles. The doctor smiles. I depart.

10:50hrs – MCC Fourth Floor Reception 1
I await my biopsy, which is scheduled for 11:00hrs. HANG ON. I have been informed they are running late and I should return at midday. I am not surprised of course. The two emails I sent earlier in the week, asking for a clear itinerary are a testament to this. I am advised to go to my other appointment, which is also at 11:00hrs (11:10hrs really). We are also given my schedule for the rest of the day.

11:10hrs – UCLH Fifth Floor, Nuclear Medicine Reception
I check in and wait. Whilst waiting, I write the above. I have a plastic cup of water. It is not satisfying.

11:22hrs – UCLH Fifth Floor, Clinical Room 1
Mamma Jones and I go through to a room and I am asked to sit on a bright green chair, which quite possibly, is the most uncomfortable chair known to humankind. It is made for giants and it is lime green. Nobody needs a rubber coated lime green seat, made for giants in their life, not even the Nuclear Medicine unit. I am informed that I am having two tests with them today. One on my heart and the other one on renal function. Both tests require me becoming radioactive. There is a joke in here somewhere, but I am being factual. The latter by the way, means several blood tests during the afternoon. It’s going to be a long day.

I explained to the nice assistant that I had to be back at the Macmilan Centre at midday and she looked back at me with some confusion and said that that was not possible, because my heart test was booked in for midday and that could not be done before my biopsy because of the radiation. ‘That is wrong’ I say with years of training and knowledge, ‘my nurse phoned the department on Monday to explain that I had several appointments today and you needed to be flexible and fit me in around them.’ I then stare at my Mum before I say ‘this is exactly what I thought would happen.’ The Medically Trained Person leaves the room and when she comes back, she says that I need to come back for my rescheduled test at 15:30hrs. ‘I cannot do that, I have another appointment’, at this point, I was frowning, I frowned even more when she asked me to move it. In short, I said I could not because a doctor was squeezing me in outside of her usual appointment times. After more talking and relative despair, we agree that I will try and get back by 16:00hrs.

In the meantime, a cannula is put in my left hand, and in goes a syringe of radiation followed by some saline. I then get a bandage to protect me from my own stupidity and clumsiness and she asks us to return at 13:54hrs.

12:02hrs – MCC, Fourth Floor Reception 1
I pee out the cup of the tea I had two hours earlier, whilst Mamma Jones checks me in. A few minutes after I am escorted to Room 26 by a nurse, where I settle on down on the hospital bed and wait… I am I formed the doctor is running late. I am flabbergasted. At 12:27hrs, he walks in and shakes my hand. He did not need to, for he remembers that we had met and that he did my last biopsy. He also got extra points for remembering that my parents live near Spalding. He was still wearing a pair of shoes from Springfields (local Fenland reference).

My biopsy hurt. It hurt more than the last one, but I managed to squeeze in text message and two games of sudoku.

I need to keep my dressing dry for 24 hours; this is the perfect reason for me to stay in my bed until 12:30hrs tomorrow afternoon. Perfect.

Biopsy concluded.

12:54hrs – Transit
We depart, and I comment on how we only have 40 minutes for lunch. We have lunch on a road named after a court in Tottenham. I spend the whole time worried about my chances of having babies. I am worried about my chances of having babies.

13:50hrs – UCLH Fifth Floor, Nuclear Medicine, Clinical Room 1
Another cannula is placed in my body, this time, in my right arm. Helpfully, the cannula is set up in a vein located on the inside of my elbow. Blood is taken, I get some more saline and another bandage. We are told to return at 14:50hrs for more tests.

Now then, practically, I challenge anybody to comfortably walk around with two cannulas in their arms, especially with one which restricts bending so much that if you accidentally bend, you grimace without looking like a nincompoop. You can’t. At this moment, as I kill some time in the Wellcome Collection. I look like a big old nincompoop. Also, with two cannulas in your arm and a walking stick, try to get into a visitor lift in UCLH, without somebody bashing you and making you look even more like a nincompoop. You cannot. It is a well known fact.

I am getting tired.

14:00hrs – Wellcome Collection
Tea and cake. A much needed tea and cake. I am not going to be able to have my own babies.

14:50hrs – UCLH Fifth Floor, Nuclear Medicine, Clinical Room 1
More blood is taken from my arm. My right arm. I am also weighed again and they measure my height. It turns out that ‘I think I am 5’8″, is not sufficient. I have to return by 15:55hrs for my last blood test and my heart test.

15:05hrs – Elizabeth Garrett Anderson Wing, Lower Ground, Reproductive Medicine Unit
Ahead of my 15:30hrs appointment, I decide to check in, and I am informed by a receptionist with the body language of somebody being held at gunpoint, that he has not seen the doctor I am due to see and I do not have an appointment. Apparently, there is nothing he can do to help. I advise him that I am on a tight schedule and I need to return to another department by four. He pleads for his life with his eyes as I handover my medical file as he requested. I wait.

We are now in real time. I can feel my face droop with fatigue. It is 15:19hrs and I have just been informed by another doctor that the doctor I am due to see is lecturing. Thus, I continue to wait. At 15:33hrs, I am still waiting. Mamma Jones is getting angry and is pointing to her watch. I am listening out for footsteps. Some rather feminine sounding footsteps just made their way down the corridor. Hope. Hope turned to disappointment when I discovered they belonged to a 6′ tall man in a cheap loafer. At 15:48hrs, I had to leave to get back for my last blood test, though not before I had a mini fit about how I had been waiting for an appointment with this department for three months and how 12 days ago, I said that the drug I needed, needed to be given to me in advance, and that though it was by no means a guarantee, it at least provided some hope, and last but not least, this issue is very important to me. I left Mamma Jones there to speak with the doctor on my behalf.

15:54hrs – UCLH Fifth Floor, Nuclear Medicine, Clinical Room 1
I arrive, for the final time on the 5th floor and they ask me why I am back so early. I pretend it is a rhetorical question because in my head the answer is simple, it is because they told me I had to be back.

My blood is taken from my right arm. Renal test complete.

A different person is now looking after me and she keeps calling me ‘Ams’. Every sentence is followed by the word ‘Ams’. I let her get away with it however for she whispered to me and told me that I was a ‘very nice and pleasant patient’. I felt like I was the opposite of this prior to her comment. Post the comment, I felt smug.

The right arm was then flushed twice, before I was given an injection at 16:04hrs for the heart test, which over the course of the day, I decided to call a ‘scan after I heard the Medically Trained People refer to it as such.

At 16:24hrs, I had another injection, this time in my left arm, which I could taste in the back of my throat and smell. It must be strong stuff, for it came in a fancy container the size of a miniature rolling pin. My cannulas were removed and I was asked to wait for a further ‘five-seven minutes’.

There was no sign of Mamma Jones. I wait.

Eleven minutes later; the department is four minutes behind their schedule, but they are staying late to treat me, so they will not see me complain. To their faces.

16:38hrs – Nuclear Medicine, Gamma 5
I discovered my test was called a MUGA. Basically, the test/machine, whatever you want to call it, takes multiple photographs of my heart to see how well my left ventricle is working; the radiation is for the photographs. The machine itself looked like a CT scanner and almost as soon as I walked into Gamma 5, I was lying flat on a slab, being hooked up to an ECG machine. Once that was sorted, stickers and all, I was mechanically rolled into the machine and the images were taken. 16 per heartbeat. The test lasted 15 minutes and 58 seconds exactly; I know this because I could see it on a monitor above my head.

I was tempted to have a quick snooze during this time, but alas, Magic FM was on the radio, so I opted to listen to the smooth vibes and imagine I was in my kitchen baking a cake with all the energy of a well rested puppy.

Heart scan concluded.

17:12hrs – Elizabeth Garrett Anderson Wing, Lower Ground, Reproductive Medicine Unit
Mamma Jones informed me when I was once again vertical, that the doctor had not appeared for my appointment until 16:50hrs due to a medical emergency, and would wait for me to come for my appointment once my tests had finished. So at 17:12hrs, we walked back to the building to find it deserted and the doctor’s office empty. The person trained in ladies’ bits and piece appeared at 17:50hrs.

17:50hrs- Reproductive Medicine Unit, Consultation Room 3
Not only is this subject one that is very important to me, it is also an emotive one. I could have cried at several points during our discussion. I did not. I know what my chances of having children and then living to see them grow up are, but I do not think that that gives me nor the Medically Trained People, the right to give up entirely. Appease me. There, I have said it. We sat down and we discussed my hot flushes and the damage my treatment had already caused to my ovaries. The doctor said that she thought that given my symptoms, the cyclophosphamide had already caused The Damage. She then looked at my hormone levels, taken six weeks after my dose of that awesome chemotherapy, and what do you know? There was no damage. Phew.

Or so I thought. There is time for me to bring on the fake menopause and a very small chance that this drug will protect my fertility. The doctor did not seem keen. She gave me some other options, not fertility related, but drugs that would simply stop my Lady, to help me out during my transplant. The latter can cause some blood thickening, so I would have to take another drug to thin in because of my ‘weight’.

I opted for the drug that comes with a slightly increased chance on the teensiest of teeniest chances, of remaining fertile. Sod the hot flushes. The only downside is that I have to go into the hospital again this week for the injection.

Appointment concluded.

18:13hrs – UCLH, Ground Floor, Pharmacy
In goes my prescription for the drug which will probably not doing anything, but, despite how tired I am, I am trying to remain positive.

19:04 – My Front Door
Slab of meat. EMan. Bed. Probably not in that order.

EJB x

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Twenty Three

Today is Results Day.

Paraprotein

To say I was nervous was an understatement. When I woke up this morning, I felt like I was getting up to get my GCSE results, and between you and me, I was disappointed with those. In preparation for today, I had somebody come with me to the clinic, just in case. In preparation, WM had bought me a multipack of Skips, just in case.

The actual result was an anticlimactic. My paraprotein is 23, down from 28 at the start of my last cycle, down from 40 since I started my treatment. In my head, this is neither bad nor good. I am pleased it has gone down, but I would have liked to have it fall below 20, just so I could say I have had a 50% reduction. At least it is working. A reduction is still a reduction and although this may be my last cycle, I could also have a further two cycles. If that is the case, I am only at the halfway mark. PADIMAC may have three more cycles to get its bum in gear. On the bright side, I now know I have the strength to take on all this cycle has to offer. Bring it on. I have food in my freezer.

Bloods

I don’t just get pricked for my paraprotein level. Oh no. Every three weeks, I have at least five blood tests, including five full blood counts and many other things. I am fortunate to have a Dad to explain these things to me, but I feel it is important to show you the gobbledegook. I tend to just look at the ‘L’ and ‘H’ in the far column. What the FBC says this time round is that my immune system is low, but I am not neutropenic. I am going back on the super foods.

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Pregnancy

This morning, with breath that was baited, I waited nervously to hear the word “negative”. Phew.

So there it is. And now I start again.

EJBx

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