Tag Archives: Macmillan Cancer Centre

The Frenzy

I am well known to be able to work myself into quite the frenzy prior to my clinic appointments. My version of a frenzy anyway, most the time such a frenzy is something to be stewed upon in silence; that way I can pretend it is not a big deal. There are many factors that can heighten or lower my worries, but regardless of whatever they may be, there is always a level of anxiety before any appointment with a Medically Trained Person. It’s guaranteed and I believe that is why I require so much sleep after such an appointment.

Yesterday, my pre clinic appointment anxiety was particularly high. It had been brewing since last Friday and it is for this reason that I opted to wear a black top yesterday morning instead of the cream one I actually wanted to wear. Nobody needs to see back sweat through a silk cream blouse. I do not believe that is what a Marks and Spencer’s intended

The reasons for my worry, were as follows:

😁 I had a MRI scan on Tuesday, that I did not request, but was arranged because the Medically Trained People wished to see my progress since my relapse. In my mind, it is part of a conspiracy.

😁 Regarding the MRI scan, I was told at my last clinic appointment 28 days ago that I needed to have the scan before my next appointment so we could discuss my progress. Progress means change, at least I think it does.

😁 At my last clinic appointment, I was also told that my paraprotein had to get to 10 or below before I could have the referral to discuss my transplant options. After that appointment, the transplant would likely take place two months later. At that time, I thought my paraprotein level was 15. As in, years away from 10 or below.

😁 Last Friday, I found out that instead of plateauing, and in spite of being on reduced chemotherapy in October, my paraprotein level had fallen to 12 as of 23 October.

😁 Finding the letter with these results on my return from a trip to the hospital, made the excursion to UCLH for a simple blood test almost worthwhile. As the blood test also included a paraprotein test, it meant that there would be an up to date paraprotein level when I visited they hospital six days later, something that does not usually happen…

😁… Thus there was a chance, or I let myself believe that there was a chance that, that very result could be below 10. There was a chance that I could get that referral and by default, I would get some tangible put it in my diary progress.

Like any old pro, I spent most of my week trying not to think about what would be said at the appointment, whether it be good or bad, which in reality meant that I thought of mostly nothing else… Good and bad.

Upon arrival at the hospital yesterday, The phlebotomist took five tubes of blood instead of three. The conspiracy continues. As I checked in on the fourth floor before my urine sample, I noticed that there was a certain Medically Trained Person doing the clinic who we shall call, The Bad News Deliverer. 😁

As I sat patiently and waited for 95 minutes for my appointment, it became apparent that there were only two doctors running the clinic and the only one I knew was The Bad News Deliverer.

In a nutshell, the presence of The Bad News Deliverer + a long waiting time x everything else = 😁😁😁😁😁

I hid it well. I genuinely did, for The Bad News Deliverer noted when I sat down for my appointment that it is easy to forget the impact of myeloma on my life when I always come in for my appointments smiling.*

So, having monopolised my thoughts for much of the week, and I dare say the thoughts of the immediate Jones Clan, I can now say that the clinic appointment was anticlimactic. It was anticlimactic because the Bad News Deliverer did not deliver bad news, nor did he deliver any glimpse to the end of this limbo. What I got instead was a very normal clinic appointment, well apart from the start of it where one could have easily thought I was referring to myself in the egotistical third person. I was actually quoting somebody else talking about me whilst I was in my presence. It may also have come across as egotistical.

Emma just needed time to realise that that the behaviour and and comments from some people in her life were not acceptable and she needed to learn how to manage them; Emma uses CBT, well, she has developed her own version of CBT; Emma puts on a brave face, it is easy to forget that she has bad days’

Anyway, so yes, regarding my treatment I had nothing new to mention to mention. That’s a lie actually, I’m experiencing slight ‘bladder issues’, but I forgot to mention them because I was nervous. My bloods were fine and my paraprotein has reduced to nine.

Nine is less than 10!

I asked about the referral as discussed previously and the Bad News Deliverer said that he was not sure about it, so he would speak to the necessary colleagues and get back to me. I understand that this response is not his fault, but it was not one that provided me with the clarity I wanted, nor the one I thought I would get when I was once again in single figures, and thus my frustration will continue for at least another month.

Using my own version of CBT however, I have spent my time since the appointment seeing the bright side in what was discussed. Obviously, the main positive is that my pp continues to go down and for my body, I do not consider reductions of three to be a plateau. History says five cycles in, it’s actually good for me. Secondly, the MRI scan showed that there had been improvements since my previous scan and there was evidence that the radiotherapy had worked. I still have evidence of the disease, but I could have told you that every time I bend down, rollover, stand up or move. Lastly, I am telling myself something that I have learnt the hard way, it could have been worse and I should therefore be happy with that.

Yesterday then, I entered Cycle 6. Cycle 6 includes the full drug regime of which I have become accustomed. It’s not Groundhog Day; it’s progress. Yes, it is most definitely progress. At least, that is what it has to be.

EJB x

P.S. I am very aware that this whole Bad News Deliverer thing is irrational, and evidently not true. The person in question is a very nice human. I am working on this.

* Not blowing my own trumpet or nothing, but this came up because news got back to The Bad News Deliverer that the talk a fortnight ago with the Macmillan staff was well received. I’m playing down what he said because, like I said, I’m not one to blow my own trumpet. 🎺

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Twenty Seven Minutes

Stop what you are doing and open your mouths…. Daycare has managed to get my blood tested, obs done and velcade injected in a record time of 27 minutes. What have you achieved in 27 minutes today? Probably not what the Macmillan Cancer Centre has. That is correct, they did the deed in 27 whole minutes. Twenty seven minutes. It’s a record, it has to be. I was in and out of the building in 32 minutes. That is a world record.

Congratulations to the second floor, you clever Medically Trained People, you. After 41 injections, I never thought I would see the day, when I saw an Elephant fly. I barely had time to enjoy my big red chair.

It really is a new dawn… Well, until next fortnight at least.

Twenty seven minutes. I’m still shaking my head in disbelief, a massive, eleven minutes later.

EJB x

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Something Old, Something New

I am not one who always embraces change. I like to feel safe and familiar, though I also like progression, and that is why I am never pleased. Today, I am faced with something that is both familiar and new, and I cannot distinguish whether the distribution is correct.

Some people may think this is strange, but whenever I am confronted with a room that is decorated in red and off whites, full of people in uniforms who know who I am, sitting on a big red chair, waiting for thirty minutes and counting, I feel safe. I feel safe even though only unpleasant things happen here. The sight of my electronics resting on a red footstool is rather comforting, even if I am annoyed with myself for forgetting to bring my phone charger with me. In fact, one would be forgiven, as I sit here sipping on my Costa tea, which has a hint of cardboard about it, that absolutely nothing has changed since I was last in the big red chair, that everybody knows is my favourite. Have I mentioned this before?

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Life has of course changed, since I was last in the hot seat. This has changed. I will not allow myself to think that this is exactly the same as the 40 times I have been here before. It is different. I am making it different. I cannot feel like I have not moved on since I first came here for Velcade on 1 September 2012.

This is a new chapter.

I am not having Velcade to reach a certain point or a target, there is no transplant at the end of this round of treatment, particularly because this is not part of a cycle, and it is not a set of treatment, this is something that I am going to have indefinitely, every fortnight, to hold something off for as long as possible and keep me in the myeloma definition of a word of which we do not speak. That is what makes the here and now different.

I may still be sitting in the red chair, chatting utter gibberish to the Medically Trained People because I am suffering from the fatigue today, occasionally looking at the borderline attractive doctors, whilst writing a blog on my iPad, but this is different. They’ve changed the wifi user name for goodness sake!

I know what you are thinking, there is a part of this story that is missing. Why have I been sitting on the second floor of the Macmillan Cancer Centre for 80 minutes now, waiting for an injection of Cilit Bang? Why have I just had to fill out two questionnaires about numbness and my poo?

The answer is simple, because I have to. It’s the pay off the likes of me have to make when the disease they have is not currently active. I think.

So, it may walk like a duck and quack like a duck, but in this particularly case, it is definitely not a duck. I’m a mother effing swan.

EJB x

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Unnecessary Panic

I have made and continue to make no secret of the fact that when it comes to my monthly doctor’s appointments, there is a heightened sense of panic about my aura. I used to call it Bad News Wednesday, until try moved my appointments to Thursday.

Today, is a Thursday and I was not panicking about my appointment. It was a non appointment, just a check up before my biopsy and The Decision. The only thing extraordinary about my appointment was the fact that it was earlier than I would have liked at 10:00hrs (to accommodate the festival obviously). I even showered before Housemate left for work this morning. Extraordinary.

Everything about my arrival to the Clinic was normal. I was late. I did not get my favourite blood taking people, even though I crossed my fingers and I had to sit next to people much older than me, with at least two of who where incredibly hard of hearing with weak bladders. A Senior Medical Person even asked A Not As Senior Medical Person for assistance is a less than subtle way, which I suppose was acceptable because the patient in question was deaf. Oh and the clinic was running later than me. I was calm.

My tranquility was interrupted however when a medical person greeted me with these fear inducing, palpitation producing words:

“I thought your mum was coming today?”

And why oh why did she need to come? That appointment is a month away? What they hell were they going to tell me? What’s going on? This is it. Bugger. Bugger. Codswallop.

And then I got to wait another half an hour before I got my answers…. Thirty long minutes, during which I pondered over sending several frantic text messages, to prepare people for the worst. I inhaled the stale cigarettes and alcohol smell stuck in the denim on denim outfit worn by the man on the more comfortable seat to my left. I started to sweat. I listened to commercial hip hop and pretended, internally, that I was Miley Cyrus. I waited. I was anxious. I braced myself…

And, after all that, I need to prepare myself for the likelihood that I will be having more treatment come November. It will probably be Velcade alone. I anticipated this. Phew. It’s not the miracle, it’s not the long awaited end to this volume, I’m beginning to think that will not happen, but it is doable. I do not think a full course of treatment would be.

That was it. A whole lotta something over nothing. Funny thing though, my relief was and is bittersweet…. Always bittersweet.

In other news, my hot flushes cannot be treated by haematology, which means that I will be having more hot flushes. Great. Zometa continues to be forbidden. Great.

EJB x

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Admittance Part II

It turns out that sleep is not coming easily to me today and my oramorph is wearing off, so I thought I would use this morning’s annoying twilight efficiently, and fill in some gaps. Actually, they are not really gaps, it is just an excuse to show a photograph of myself that is so hideous it looks warranted mugshot, after a drug fuelled crime spree and orgy.

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Such was my fever when I arrived at the hospital, that my clothes were drenched. I was actually thankful for the hospital gown. It was embarrassing when I first met people, I was convinced the the people waiting patiently in reception, looked at me and thought, why does that stereotypical obese person get to push in? It’s probably why I opted to walk it instead of an ambulance.

I felt somewhat stupid on our arrival, that although I was in a lot of pain, my temperature had gone down to 37. When I heard that, I thought that the Medically Trained People there and the haematologists were going to think I was a complaining weakling, who could not handle a teeny bit of diarrhoea. It was a thought that has been following me, how bad, was bad enough? Is it really that bad if I can take photographs?

Fortunately, or actually unfortunately, the extent of my stomach cramps was clear on my face, my bloods showed that in the time it had taken for me to leave the clinic earlier in the day and then, I had actually become neutropenic sepsis. So, I was not making it up. Phew. A second temperature reading had it near to what I made it at 38.2.

I managed to get some witty banter in during my examination, my so called graphic measurement of the number of wipes required to describe stool consistency is an example of why I am an exemplary patient. Despite, trying to win the staff over, I still feel like I could have gone through the night, not required special treatment in A&E and been able to walk into the Haematology department this morning. Less fuss, less dramatic.

As much as I would like my treatment in the NHS to only be undertaken by haematology or oncology nurses, I must admit that the nurse who treated me in A&E went above what I would expect. Perhaps she was just thankful that I got her out of cleaning up somebody else’s poo, but either way, she made sure I was as isolated as I could be, and when there were no porters, she escorted me myself, even after she had handed me over. That’s nice.

And then I went down memory lane to the Acute Medicine Unit, where the room alone is making me itchy, and they cannot locate a second pillow. I don’t ask for much really, I am neutropenic and I have lytic lesions. These things have to be considered by the staff in this faceless ward I am in.

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Now, if I could only just be sick, I would be very much obliged.

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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Community

Today, I find myself in Ambulatory Care for longer than I anticipated because the nurse has decided to give me some fluids whilst I wait to see the on call doctor. I thought I would be in here for 30 minutes maximum today. I was wrong.

The other people sitting with me, did not think like me when they walked from the Cottam Rooms this morning. They came prepared for the long haul. Everybody makes polite conversation in here, even if it is just a smile. I look at all the other patients and think, we’re in this together, but I am more important. It creates a nice sense of community to be sure.

I have said this to the Medically Trained People, so I have no problem with saying it here, the communal space of Ambulatory Care could be larger. In fact, I would go as far as saying it is cramped. I could touch the man to my left and I do think he would appreciate it because he is sleeping.

As I sit here, on a chair opposite the nurses station and to the right of the little reception desk, I am in the company of four other patients, all men, all older than me. We are close enough for me to hear their date of births, and I can confirm that the person nearest to me in age is 14 years older.

I recognise all the people from the hotel. The one I know the best, because he is the chattiest, is to me right on his mobile phone. I do not know why, but he reminds me of Roald Dahl, is it because his standard uniform is of somebody about to go on a modern safari? He might me South African. He is not having a transplant, I am not sure what he is in for, but he seems to be holding up much better than me. He ate at Wahaca yesterday, it’s not proper Mexican food you understand but it is an acceptable European fusion. He’s playing on his MacBook. He likes to Skype his wife, apparently. As well as reminding me of Roald Dahl, looking at him makes me want to watch the first three Indiana Jones movies.

So Roald Dahl/looks incredibly like a photograph I once saw of my great grandpa, is sitting closest to the entrance. He is getting a bag of something the size of a cows udder.

To the left of me, essentially next to me, is a trendy man in his forties. I saw he is trendy because of the people I have seen him with. One of them wore tights and Dr Marten’s on Wednesday and is a fan of bleached denim. Crazy. Today, he is wearing black jeans and a navy jumper. He’s very tired. I know that because I heard him telling the nurse he was and he is asleep as I type. He does not want to go into the hospital yet… I get the impression he has been here before. He knows all about my stools because the open plan setting does not offer enough privacy for me to have had that conversation privately. Not that I care. They offered me a private room; I declined.

He might not be asleep actually, he could just be pretending because I just saw his left leg move. To be honest, if I had to have had the conversation with the camo shorts with a red flannel shirt wearing man to the left of him about IT sales, I would have pretended to sleep. After 5 minutes of listening to their convention, I had to reach for my earphones. Poor man.

The boring man, sitting in the corner, is about to leave. His wife has been sitting with him the whole time and has not said a word the entire time I have been here. Maybe she doesn’t like IT sales. Hang on, she just said thank you to the nurse. They are off. His feet are swollen I note, so it is good he just walked over to the bin and disposed of his Lucozade bottle. As they walked out, a guest belonging to the sleeping man arrived. It turns out, he was actually asleep. She has lovely hair. She looks sad. I guess she is sad, because I saw the man on Tuesday for the first time and I can tell he looks worse than he did then. For ‘Lolita’ reading girl with the nice hair, the visible deterioration must be difficult.

The man who was in the far corner, also with a wife, has also left. He did not smile. I suppose one could say, if you are stuck in a artificially lit, white room on a Sunday, you probably do not have that much to smile about. I do not think like that of course. I am peaches and light. He looked like he was wearing a dressing gown, but it was actually an open blue shirt.

There are 3 nurses in here today, treating us and a further person in one of the private rooms. The room seems cluttered. I do tend to see more clutter when I am tired. There are silver trollies and stools as far as the eye can see, a blood pressure machine in the middle of the floor, and as the three of us left in here are on IV meds, we’re attached to those things on wheels, which are taking up more room as they sit to the left of our chairs.

Why am I the only one who enjoys the reclining facilities on the chairs? Fools.

Roald Dahl has opted to eat lunch. I was going to try it, but realised that I did not want my one meal of the day to smell like baby’s sick. I consequentially feel sick. It is just the two of us now…

I have to go and give them a certain type of sample now, I hope it does not put him off his lunch.

I’ll try and be subtle.

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My Reboot

For anybody who thought that a stem cell transplant was an operation in the traditional sense, my experience yesterday, would disappoint. There was no blue gown, no anaesthetic, hell, there were no doctors. After all the preparation, mental and physical, the ninety minutes it took for my stem cells to re-enter my body, was anticlimactic. It was a little exciting I suppose, but although I knew how I would get them back, I did not expect it to be so easy. Clearly, I know it is going to get worse now. The hard part comes after the Melphalan and after the transplant. When I left Ambulatory Care yesterday, it became perfectly clear to me, that all I have to do over the next few days, is to wait for my side effects. Wait for the hard part.

Although I found the process anticlimactic, I suppose that feeling comes from me not seeing an instance response or result, some tangible benefit, the process was still something to watch. Mamma Jones and Big Sister stood at the foot of my bed watching the whole thing, whilst saying, ‘I cannot believe this is it?’.

I arrived at the hospital yesterday shortly after 13:30hrs, as I had to wait a full 24 hours between the transplant and the chemotherapy. I was quite sleepy upon my arrival to the second floor, which went very well with the intravenous antihistamine they gave me to prevent an allergic reaction from the ‘freezing’. I am pretty sure that I looked stoned throughout the process and in fact, that particular look remained into I fell asleep shortly after 21:00hrs last night.

You get a private room when you your stem cells are infused, not because it is a private procedure, but really, because it takes up so much room. Tables, machines, a pot, more tables and drips. You really cannot have that in a communal area. Anyway, yesterday, some might have said I needed privacy, for it was hot and my dress was riding up to reveal my hot, big, white arse.

My stem cells came back to me in three bags. The bags were frozen to begin with, removed from some sort of contraption that looked like a prop from Jurassic Park’s lab, a smoking canister, then taken out of some popping bubble wrap and then placed in a medical version of a bain-Marie to thaw, before they were implanted in me via the cannula in my right hand. That happened three times. The cells were accompanied by a little bit of saline for luck. All in, I think we were done in just over two hours, from me walking through the door, to getting back out on the street, feeling woozy.

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I would describe my transplant as ‘nice’, like a cup of brew with a scone. Pleasant. I am thankful that the nurses treating me, knew me already, and I am thankful that they seemed genuinely pleased that I had finally managed to get to this point, and I grateful that one of them said she was honoured to be the person to do it and I was even more touched that she finished it be wishing me a Happy New Birthday.

Control. Alt. Delete. Let the reboot begin.

I said this yesterday, there is no going back now. I have to sit tight and wait for illness, and as the Macmillan Lady just said, that lack of control, must be something that I will particularly struggle with. She is correct. I really do not cope well with waiting.

Troubleshoot.

EJB x

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Different Departments

I am very much set in my ways. Unless I am in a work setting, wanting to impress my superiors, I am not usually a fan of change.

Since I was released from NHNN, all my treatment, bar three scans, three clinic appointments, including the ones I have had this week, and a dose of radiotherapy, have been in the Macmillan Cancer Centre. This week then, has essentially doubled my contact with the UCLH world. Geographically, the centre is not in the main hospital. For patients, it is a self contained little unit, where they test your blood, scan you and treat you, all in one place. Well, over five floors.

I realised after Wednesday, that those of us unfortunate enough to have to frequent the Macmillan Cancer Centre are fortunate to be treated there. Sure, there are often epic delays, the pharmacy inevitably manage to annoy me, and I will always find something to complain about, but we are spoilt. It is so familiar. People are friendly and sympathetic and the majority of staff seem to acknowledge me, whether it is the Costa Coffee Man calling me ‘Late Girl’ or My Favourite Receptionist teasing me about my collection of subtle necklaces. Overall, things run relatively smoothly there and crucially, I know what I should be doing.

The main hospital does not afford that level of comfort. It is a vast pit, full of strangers and strange places. The different departments either do not make any concessions for the big C, or they go too far and talk to me with their head tilted to one side. My Myeloma is not their priority.

Yesterday for instance, I received a voicemail saying that I had to come to the hospital that day for an appointment. The person calling me, failed to tell me the name of the department she was calling from, which most definitely got me in quite the pickle when I got round to listening to the message. It turned out that the call was from the Reproductive Medicine Unit, and I was not required for an appointment that day, it was simply regarding an injection which I had arranged with a doctor on Wednesday. It sounds like a minor thing, but I know that that sort of message would not be left by somebody in the cancer world, unless there was actually something wrong. Even if something was wrong, I probably would not receive a voicemail message. Normally, my messages from the clinic tend to start with ‘don’t panic’. Given the tests I had on Wednesday, I think a certain level of anxiety on my part is justified. I felt like there was a lack of understanding, a justifiable lack given the size of the hospital, but still a lack of understanding about my circumstance. This was evidenced by the response I received from another person in the RMU, who was extremely apologetic that somebody would be so vague in a message to me. I did not even complain.

I have experienced a lack of understanding from other medical departments before, from my brief stay at NHNN, to a scan I had, back when I was unable to lie flat and the technician got angry with me for not being able to stand up.

Today, I ventured into the Tower, to the main pharmacy, to collect a prescription, which then needed to be taken to the RMU to be injected. We have our own pharmacy in the Cancer Centre too and I confirm, it is nicer than the main hospital pharmacy. There is only one window and one queue for a start. There I was, waiting to collect a ‘script I put in on Wednesday night and as I waited, they served two people who arrived after me. I did not say anything for I am English, I just looked on in disgust and sweated. Upon reaching the window and handing over my ticket, ticket number 343 if you are interested, they could not find it. After a few minutes of flapping around and not communicating on their part, the girl informed me that my medicine had not be dispensed and there was a note on it saying it should not be dispensed. She asked me to sit and she would find out what the problem was and get back to me in a few minutes. I smiled and said she needed to, because I needed to have the injection administered by a nurse today. She then, helpfully disappeared.

45 minutes later, and after three calls to the generic RMU number, I went back to the window to be served by somebody else, to discover that there was no problem with my prescription and it was awaiting my collection.

I have discovered in my time that the pharmacies do make mistakes, but when I have experienced these previously, back in the place where everybody knows my name, I have known exactly what to do. Instead, I was left waiting in an area warmer than the outside world with 20 other people who were also waiting. No wonder they have a sign saying abuse to staff will not be tolerated.

I did not enjoy it.

I know that, for obvious reasons, I am noticing these things more and perhaps they are bothering me more than they would usually. After all, I do not like change… I sincerely hope that when I am in the Tower for my travels, it is not like my experiences over the last week and the people looking after me, make me feel looked after. If memory serves, they are very nice on T13, and there should be some consistency with my care, because on T13 or T16, they still concern themselves with blood and the Senior Medically Trained People are the same. Please let it be a home away from my Huntley Street home.

As for cross departmental appointments? I’d much rather, not.

EJB x

In defence of these different departments, there water coolers do come fully stocked with plastic cups unlike those on Huntley Street. Peaks and troughs.

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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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