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
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.
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.
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.