Tag Archives: Doctors

Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

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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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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Doctors…

A few doctor’s appointments ago, I started to over think the exercise. Over thinking, is apparently, a favourite pastime of mine.

It will not shock the hiccups out of you when I declare that I loathe my doctor’s appointments. In preparation of them, I dwell and I worry. The aftermath, usually is not that bad, and I wonder why I wasted the mental effort beforehand. The reason I do become awash with anxiety, before I hit the 4th floor, is simple, those Medically Trained People can, and have been, the barer of bad news. It’s that simple. They hold all the power of me. Well, my body may play a small part in this game, but, they are the ones who tell me about it.

In the reality of my daily life, this transplants to a period of heightened emotion every three/four weeks, which is usually followed by a pleasurable nap.

I never took my apointments for granted until the day I did, and that day was the Bad News Day. Now, as much as I try, I dread that 20 minutes in that tiny room, even more than I dread the hour prior, when I wait patiently with the other patients, keeping my fingers crossed for a certain doctor. These days, I feel like I need to prepare for the worst news. Maybe not the worst news, but never good news, that would just cause mass disappointment and I need to be pragmatic. Let’s face it, for anybody, a trip to the doctor is never equal to a trip to the cured meat counter. Normally I can predict when my appointment will be nothing, an affair where I indulge in my second favourite pastime and talk about me, but there is always that possibility that they will tell me something about me that I do not know. Bad news. They hold that power, and I cannot really predict when it will come.

It’s never going to be easy, but I realised recently why I find it so difficult. I cannot read those Super Trained Medically Trained People. I pride myself on my ability to read people. I readily admit that I get this wrong most of the time, but with them, in the very limited time I get to see them, there is no scope for me to understand them as people. Nor even imagine what they are like as people. I have more than five doctors, and I have never seen one for more than two hours in total and never for more than half an hour at a time, at a push. In my appointments, all we talk about in that time is me, apart from the one time I had a discussion with my least favourite doctor* about the benefits of a particular phone contract. These Medically Trained People give me no opportunity to know what they are about and this makes me uncomfortable. I know why this is the case, I watch American TV dramas, but it does not make my treatment any easier. They all wear a standard Haematologist uniform too, so I cannot extract anything from their outfits, apart from the fact that as a group, bar one, they avoid the general doctor uniform of brogues, chinos and a crisp white shirt without a tie. Why is this? Why do my doctors favour grey?

My Doctors are enigmas. They are strangers to me. I see them, they talk to me about me and I have no input in the discussions or thinking. Well my body does, but my body doesn’t make me Me. I cannot win them over with self deprecating humour, nor can I make them hate with with back stabbing bitchiness. I don’t let them, no, they don’t let me show either part of my personality. It is all about my blood. My contaminated blood. I have no control over that. The loss of control is disconcerting. They know about me, and to me, they are a collective group with no discernible personality.

I am sure they do things behind my back to my benefit, in fact, I am sure of it, but with the exception of two of My Myeloma doctors, three at a push, I cannot see behind their fake office on the 4th floor and poker face. I do not think my feelings are a reflection against any of the individuals, I am confident I am receiving the best care possible, but my problem, is with the role of the ‘doctor’ I guess. I want to feel pampered.

I struggle to discuss anything with anyone if I know nothing about them. My contact with these Medically Trained People is so slight, I can hardly imagine something about them, and this makes the control all theirs. They hold the power in my appointments. They can dash hopes and make them, and I have no say, no interpretation of it. Every appointment I know this, and I know it before every appointment, and that is why I struggle with it.

So, with that in mind. I have a doctor’s appointment tomorrow. I am
SO excited about it.

EJB x

* I feel somewhat guilty now for describing the secret smoking doctor as my least favourite doctor… I am convinced he senses it, for every time I see him now wandering the floors of the Macmillan Cancer Centre he is nothing but super duper nice to me. Every time, the guilt mounts. He smiles and I sweat. I take it all back. Maybe in the autumn he was just troubled. At least with him, I do not eagerly stare at my phone to avoid eye contact if our paths happen to cross on the street. Hypothetically, this may have happened with a senior of senior Medically Trained Person. Twice.

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Reminiscing

Occasionally, I love to indulge in a bit of pre-myeloma fanaticising, reminiscing really, about what I was like before this happened. Love is definitely the wrong word. I am not a sadomasochist. In recent weeks however, despite my best efforts, I have been looking back to what I was like at this time last year, and given what I know now, I find it all terribly interesting and somewhat tragic.

It was my friend’s birthday last Friday, on the solstice, and I could not help but think back to her birthday last year, when I rocked up for dinner wearing a sling. I was wearing a sling because I had been told in the days prior that I had injured my rotator cuff. I was not provided with a sling by the nice locum doctor*, but a search on google told me that this would help the healing process. That week really, was the start of it. I had noticed the pain before, but that was when I got off my bum, and went to see my GP. It was the start of the journey I now find myself on.

If I look back now, at the pain I experienced then and how, over the following two months before I was admitted to hospital and diagnosed, my body slowly deteriorated, it surprises me how blasΓ© I was about it. It hurt sure, especially when August hit and it took 20 minutes to get out of bed, but in my mind, it was trivial. The cause I mean, was trivial and so would the remedy be, just as soon as I was taken seriously by the Primary Care Professionals. I did not think it was myeloma level of serious, so why would they?

I feel silly for wearing that sling. I feel silly for telling Tom, Dick or Harry why I was wearing that sling. We know now that I was wrong. Hideously mistaken. Try eating a meal in a restaurant, whilst wearing a sling. It’s not ladylike. Let’s face it, I looked like a twerp. At the time, I felt like a fraud, but now, with the wonder that is hindsight, I know that that sling, ‘borrowed’ from a first aid box on the 7s, did absolutely nothing and that makes me cringe with embarrassment. The sling did not make anything better. It did not make the pain go away. The reason I could not open those fire doors, was not because of something I had done to my shoulder and the pain was not going to go away with nurofen as advised by the nice locum doctor**. Two courses of treatment, involving a fair amount of poison and twice daily doses of morphine has not made the pain go away completely. A bloody sling?! What was I thinking?

I imagine that until the 14 August, I will be reminiscing just that little bit more. It cannot be helped, though, the transplant may numb it. Not only did the birthday last week make me reflect, but the British Broadcasting Cooperation’s sports department is currently offering daily coverage of an event in Wimbledon and that red button reminded me of an even bigger sporting event that took place in London, 2012. I was watching the current event on Monday and a week at the start of August last year came flooding back to me like it was yesterday. The memory was conflicted. I loved being able to watch a variety of sports all day long. That was a hoot. At the time, the sling had gone, but I was in more pain. Much more pain. I could barely move, on the one day I attempted to go into work, I was sent home because I was ill, apparently. The sending home, by the leader of leaders, made me cry. Before 17 August last year, I rarely did that, cry. Perhaps I should have realised then that there was something others would deem serious wrong, but alas, I did not. I was still waiting for the nurofen to kick in and they had confirmed I did not have lung cancer, so I thought everything was fine.

I do not know if my trip down memory lane is good for me or not. It is the mood I am in and I cannot block it out. If does make me wonder whether I have actually got anywhere since then and since my diagnosis. So much has changed, but medically, I do not feel like I have travelled very far and at least a year ago, I was ignorant to it.

Not knowing, was so much easier, albeit, much more painful.

EJB x

* She was not nice.

** She really was not nice.

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Clinic

I loathe my Doctor’s appointments. More specifically, I hate the foreplay prior to my Doctor’s appointments.

More often than not, the deed itself is not that bad, unless it is a Bad News Wednesday and somebody is telling me that my pain is chronic and I am not responding, or, if I have an apparently meaningless appointment to be told that my paraprotein is not behaving and I am in the middle of a setback of all setbacks. Sometimes, the deed then, can be horrible. It can sting.

The worst part about my Doctor’s appointments is what I do to myself beforehand. The foreplay. I work myself up. I always work myself up. I have an appointment in two hours time and I am worked up. I do not anticipate that I will receive any bad news today, the only results they have to give me are my bone marrow biopsy and I figure if the results were really bad, they would have told me already. I work myself up, because I have never anticipated or predicted bad news on the days I have received bad news. The Doctor’s appointment marks the only time in a cycle I see a doctor, so really, it is the only time I can receive bad news. Whether I expect it or not, today is the day when things can go wrong.

What are they going to say? Am I due another setback? Is this it? Blah, blah, blah, blah.

I do not want to go. I do not want to have to wait for two hours with the other sick people for my 15 minute appointment, I do not want to have to do a pregnancy test, I do not want to regurgitate how the last four weeks have been and explain how I am coping, I do not want to have my blood taken and I do not want to step foot in the Macmillan Centre. I do not want to go. I want to stay in bed.

I bloody hate my Doctor’s appointments.

Needs must, however. Damn it.

EJB x

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The Cost Of Cancer

Once you have processed your diagnosis and your treatment, it is unfortunately necessary for one to deal with the life admin. Despite being stuck in this inexplicable twilight and having to come to terms with a diagnosis and prognosis, which is beyond unfathomable, I have had to learn that life goes on. Everything that existed before, continues to tick over. Bills, pay, money, living costs; these things still continue even though you have cancer, and they have to be managed because you hope at some point, having a bad credit rating will matter again.

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I have probably spent three months with my head stuck in the sand about much of this. Coming to terms with My Myeloma was enough to manage, without me beginning to consider how I could and can financially survive, maintaining my much needed level of comfort, whilst trying to survive within this bubble of cancer. I am now at a point where I have to deal with my finances. Cancer costs, in more ways than one.

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Thankfully, I am in a better situation than most. I am an employee, and my employer does take care of people like me and even others, who could do with a healthy dose of humble pie. Last week I had an occupational health referral and the lady on the other end of the phone was most perturbed, to begin with, about me continuing to do work when I feel able to do so. It did not take me long to get across the importance and weight my work means to me in my life. Continuing with some normality, for somebody who has had a job since they were 11 years old. In those early years, staking shelves really was a hoot. Continuing my work is not just about my sanity, it is also about me, continuing to give back and support those I respect. Despite me winning her over, or appearing to win her over, there is still a high probability that in the new year, I will move onto half pay. Six months really can fly when you are not having fun. I live in Dalston and I am a civil servant. Half pay will cover my rent and approximately two third of my bills. That’s it. It will not cover my food, my online entertainment services and my occasional acts of generosity. It would be a fair assessment to say that I have discovered Ocado and high end branded teabags at the wrong point in my life.

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Ever the pragmatist, this last week, I have started to investigate what Government funds are available to me. Once again, Macmillan Cancer Support have shown their worth in this area. For somebody who has never claimed any benefits, it looks and reads like a whole load of gobbledegook. I suspect I work in the right Government department, because the Department of Work and Pensions would be lost on me. I am surprised so many people are actually in receipt of benefits. The forms are endless. Take the Disability Living Allowance, the form, for which I could get Β£20 per week, is 42 pages long and has to be accompanied by evidence that I am sick and a list of things that I can and cannot do including the number of meals I can cook myself in a week. Crucially, microwaveable meals do not count as cooking. Phew. I am also going to apply for a Blue Parking Badge, just to save my legs and back on the occasions when I am am able to go to a shop and somebody has a car. Then the worst case scenario, is applying for Housing Benefit, if I do end up on half pay. I haven’t even begun to look at that form yet. Thank goodness for the welfare state.

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When I was first diagnosed, I thought I would end up saving money. In reality,this has not happened. I took a slight pay cut because I am not able to do some add on work, and in these dark times, sometimes, just sometimes, I just need a little pick me up. Some lipstick, some food or a taxi. Just things to make my life easier and keep me sane. I imagine these little perks will have to stop in 2013.

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Everything costs. Everything.

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Just keep paying your taxes people, because out there, there are some people like me, who actually need the help, and I am not even thinking about the NHS right now although clearly, I need that little beauty too.

EJB x

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PCH To The Rescue

Last night, there was a dilemma in the Jones household. It made me stamp my feet and squawk swearwords, really, really loudly. It was a drug dilemma. I did not have any. Try as I might, I need morphine to function. The prospect of four days without my beloved morphine, really did make me say some proper swearwords.

After a quick ring around to the emergency hospital number and then local pharmacies, I discovered that getting my morphine without a prescription was going to be next to impossible. The hospital thought it would be easy; they were wrong.

Major dilemma.

Then, with a bit of prompting, Haemo Dad came to the rescue. After another phone call, a doctor kindly offered to assist and said that by midday today, I would get my fix. This was amazing news for the school, because it meant that I would be able to move. By move, I mean walk, stand and bend. All the things most people take for granted. I am going to be honest with you, sitting up this morning from my bed was no easy task. I had to complete it on three.

So, this morning, I got to revisit the weekends of my childhood with a visit to a lab. Albeit, a lab in new clothing, for Peterborough District Hospital no longer exists. Peterborough City Hospital does. They brought along the old green high chairs. I wished I could have twirled on one like I used to, but I am fairly certain that would have resulted in a broken back.

Whilst, I was technically at the hospital because of My Myeloma, it wasn’t UCLH, and I wasn’t receiving treatment. It was nice, refreshing almost to view a hospital as something that is unconnected to the cancer. In my current state of mind, it was almost exciting. Maybe because it was the weekend and it was quiet. See for yourself.

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An empty hospital corridor. Exciting.

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Lab coats. Riveting.

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Gas. Whatever.

I do however, have myeloma, which meant that the fancy machines have a hold new dimension in my cancer obsessed mind. I got to see what happens to my blood every time it leaves my arm twice a week. It gets spun. And other stuff. As somebody who asks a lot of question, it was educational.

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There you have it. Today, PCH came to my rescue and as a result, I can rest easy. All I had to do was set my Dad’s out of office (for the first time in seven years).

EJB x

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