Category Archives: Scared

Oramorph

I mean no disrespect to the manufacturers of Oramorph when I say that I do not like it. Instant pain relief in the guise of orally administered morphine, whilst it does offer pain relief, is not my friend. I decided quite quickly into my journey that unless my pain is so bad that I cannot walk, I will not take the stuff. I may have mentioned it before, for I am frequently telling others looking for flattery… I forgo breakthrough pain relief to allow me to converse with others. I sacrifice the body for my brain and I want a tap on the back for that. Or at least a smile, so I know that the person is thinking “wow, she’s a brave lass.”

I am not going to shy away from this, Oramorph makes me high, but not in a good way. It makes me slow and it makes me sleepy, and if I were ever brave enough to listen to a recording of my voice, I would have evidence that it makes me slur. Apparently it also has addictive qualities, which was a concern, given my penchant for beer, cream and EMan. I had to take it when I was in hospital because my pain was that bad and I did not understand what pain management meant. When I returned home and tried to conduct my day to day affairs, it was a struggle to do this on Oramorph and while receiving chemotherapy. The latter won out and a developed a Cancer Rule.

That said, I am contemplating taking a dose of the sweet liquor this coming Friday. I am booked in for a MRI scan and the word best used to describe how I feel towards my scan is ‘apprehensive’. I am not apprehensive about what the scan will find, that will be what that will be. I am apprehensive about how I am going to lie on the flat metal slab for 45 minutes and then get back up again. I am pleased I am getting a re-scan, I have pushed to have one for so long because I need to know what is going on inside my body, I just wish the Medically Trained People could get the images without me having to experience any pain.

An MRI scan involves me being buried alive in a dark metal tube for 45 minutes as it makes sounds akin to my one year old niece hitting the dogs’ metal water bowls against Mamma Jones’ tiled flooring. Constantly. The last time I had an MRI scan was on the 20 August, the same day I was formally diagnosed and the same day I had my bone marrow biopsy. I can say that getting up off that slab at the end of the scan, transferring myself to a wheelchair, to then transfer myself to another wheelchair in the clean room and then to wait 50 minutes to be collected by a porter, was the most physically painful thing I have ever experienced, despite the 10ml dose of Oramorph I had before I left my hospital bed. I do not want to experience that pain ever, ever, ever again.

It was at that point that I stopped lying flat. Another Cancer Rule.

Things are slightly different now. I must remember this. I have had a Kyphoplasty and more often than not, my pain is managed. I can lie flat for a short period of time, let’s say for something pleasant like radiotherapy, and only experience mild discomfort. I am going to have to keep telling myself this over the next five days, so that I am able to lie in that metal tube and so that I do not wake up in the early hours panicking that my Oramorph is at Mamma Jones’ house.

It is, after all, a means to an end.

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Manageable Chunks

Since my diagnosis, I have very much been a fan of managing My Myeloma in chunks, or sections if you will. I quickly realised it was the only way to protect my brain and thus my person, and I guess others, from a mental breakdown. I’ve allowed myself to think about the future, but only briefly, for thoughts are swiftly pushed out for me to focus on the now (or then). I have lived within each three week cycle and each cycle only. This got me through PADIMAC. The future was for me to manage in the future.

I now find myself in my future.

I have known since October that I would require a stem cell transplant at some point and when that point arrived, I would need to make a decision about whether I had my own stem cell or Big Sister’s. If it was scary before, it is terrifying now. As scary as the transplant seems, it is the decision before that which is plaguing my thoughts and my dreams. The decision is not months away and something that can be put to the back of my mind anymore. The decision is imminent and I have to decide whether to bring my volatile best player out at the start of the match, or wait for extra time.* It’s length of remission versus possible death, without any certainty of either.

Decisions, decisions, decisions…

I am yet to consult properly with my doctors about this, that is on Wednesday. Fun.

Manageable chunks seemed to make so much sense before, but I do not have a screaming whatsit what I am going to do now.

It is all I can think about.

This sorry tale will most definitely be continued…

EJB x

* A Twin gave me that metaphor. I like how it only partially works.

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A Crossroads?

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

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

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

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

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

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

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

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

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

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

Think 19.

EJB x

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

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A Change Of Course

Yesterday as I collected my prescription for the coming four weeks, I was told that I would not be receiving some of my drugs, because a decision will be taken next week as to whether I will remain on the PADIMAC trial.

There are many variables influencing the decision, but the main one has to be my paraprotein level. The blood test has not been taken since the increase last week, and the test will not be done again until next Wednesday. I, and the Medically Trained People, will then have to wait until Friday for the results. The Medically Trained People will then make a decision about what treatment I will have on Monday 5 November on the afternoon of Friday 2 November. I in turn have to sit and wait. Sit tight and not think about failure.

Yesterday I said I had a big head; Housemate yesterday confirmed with me that he always knew this to be the case. I do have a big head and if you exclude some sporting activities and the D I received in my GCSE music course, I haven’t failed many things in my life. The GCSE result doesn’t really count anyway, because I did it after school as an add on. Actually, maybe I have failed in matters of the heart, job interviews (correction, fixed job interviews) and facial hair growth prevention. I am trying to think of other things, but right now, nothing comes to mind. As I cannot think of any more, it becomes gospel that I am a Success Story. Clearly, this is not reflected in my treatment to date for My Myeloma. Did nobody tell My Myeloma that I am egotistical enough to want and expect success? Stubborn arse.

I have the further complication of the worsening side effects to the Velcade. Apparently they are cumulative and thus will get worse if I continue. I have been reliably informed that this rather expensive injection ‘works for most people’. Well, my body does not like the Velcade. The current thinking from the Medically Trained People is that my illness at the weekend was due to the drug; this is something I too believe now because last night after my injection, I once again became a sloth. Once again my energy was wiped, my pins and needles were delightful, the nausea was hugging me and hypothetically, the dizziness resembled the after effects of the popper. Now, if I remain on the trial, I would manage the side effects if I knew It was helping and would make me better. I am well hard and I have a big head. I get the impression from the Medically Trained People that these side effects should not be happening and thus if I continue, my dosing will have to be altered. This does sound more sensible than me being immobile for four to five days out of every 21, however, I just want to put it out there, that I would deal with them if I had to.

So, this time next week, I will find out whether this treatment has run its course and I’ll be getting ready to move on to the next. If I am honest with myself, I am prepared for this inevitability. I am frustrated by the failure, the set back, but it is better to find out now then in nine weeks time that my treatment has failed. It means I get a nine week head start, which in turn means that I am nine weeks closer to beating this thing.

I have my consultant appointment next Bad News Wednesday and I imagine that given this impending decision, that the appointment is going to be a real hoot. I’ll look forward to that.

I must remember that there are many battles in a war. Wins and losses. Try as I might, I cannot remember all the battles of the English Civil War, which I was going to use to labour my point, but the success of the Roundheads over the Cavaliers is by the by. King Charles II still came to the throne. Sure, this might not apply to modern warfare, but it works nicely for My Myeloma. Today at least.

An update will most definitely follow.

EJB x

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Control

I like being in control of my life. I am finding that when one has cancer, less and less of your life is in your own personal control. Clearly.

I have experienced this week, unfortunately, that I have little control over how my body reacts to my treatment. I can will all I want, but I cannot make my body respond. Clearly, I already knew this, but managing my dashed hopes is proving to be truly, truly painful. Clearly, I know I had no control over my diagnosis either, but that’s old news…

My need for personal autonomy goes further. I want it to be an imperative, but, sadly, I feel like I am losing it.

Since I was released from hospital and started my treatment, I have prided myself on my ability to look after myself and to make sure that My Myeloma does not define me (this is one self fulfilling prophecy I like). Since my discharge on 24 August, I have seen my body slowly improve to a state where, at times, I can trick myself into thinking that I do not have myeloma. I can cook my friends dinner, go to the pub or just be awake for 14 hours of the day. The trickery is more to do with others perceptions actually. Who am I kidding? I am constantly aware of My Myeloma and that is why, at this moment in time on a Saturday night, I am so scared. It feels different.

Not since the first cycle have I been so unable to look after myself as I have been today. As I write this it is 22:30hrs, I have probably been awake for a total of four hours all day. I do not have the energy to cook (though fortunately, I do have the energy to eat, which was not the case yesterday). My waking hours have been consumed by tears and pessimistic thoughts best saved for those who are fans of the movie ‘Love Story’. My cleanliness is questionable and that is all I am going to say on the matter, because at some point, if I get better, I would like to have sex again. I am also back to the situation where my body cannot decide whether it wants to release toxins from the bowel or mouth, and whether the release is going to be a hard or soft one. All I know is that I can feel it in my gut, back, throat and bottom. Again, somethings I should keep to myself, because one day I will get better and I’ll have to forget I have mentioned this.

Enough of the toilet humour… I feel like my body is regressing and I have no control over it. That or my body has decided to give up already. Clearly, I would have no control over that either.

I have no idea whether the emotion and sadness I feel is real or whether it is a result of my drugs. This is the first time since I started my treatment that I have probable cause to question my feelings. I bloody hope it is a chemical imbalance. I would find this more reassuring over the alternative. Either way, hard as I try, I do not have enough fight in me to reason.

The pain I feel at the moment – the nausea, the stomach cramp, the fatigue and the constipation – these are all known side effects of my treatment. I have not before experienced this in its current guise. I thought I had my side effects under control. If what I feel is indeed my side effects, they are controlling me. If it is not my side effects, then what is controlling me? I do not want to feel this way, be this weak or look this ugly.

When did I stop being the boss of my body?

I would absolutely love to give you a conclusion that eloquently and sensitively expresses how I feel like I have diminished control over my emotional and physically being, and this fact scares me more than words can describe, but unfortunately, something is telling me it is time for sleep again.

EJBx

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The Set Back

Today I have had a set back. It is strange, because I suspected as much. Maybe people are right, and a positive mental attitude can encourage positive results. My outlook however, had been somewhat lowered after my last appointment with my doctor.

I wish I could bottle the feeling I had when I found out that I had a 35% reduction in my paraprotein level after my first cycle. I was genuinely happy and felt secure in the knowledge that my treatment was working. I all but put out the bunting. This was a reduction from 40 to 26. I felt so positive and truly believed that this treatment, my trial was going in the right direction. Today I have had my results from the end of cycle two. I was expecting a reduction, but a modest one. I wanted to hit a total 50% reduction from my first 6 weeks of treatment, but what actually happened was that my paraprotein level has increased. Instead of sitting on a 35% reduction, I am now on a 30% reduction. The bunting has gone soggy.

A set back.

I have had medical people trying to placate me and say that this is just a ‘blip’, but I don’t want a blip. I don’t want any delays or hiccups or anything but the most noticeable improvement when it comes to my treatment and my health. I also do not find it comforting to hear that ‘most people respond well to Velcade’. How does this help me, when it would appear that I am not? This also seems like changing goal posts as I have previously been told that the trial is 50% successful. How does this translate to most people? Half and half. Why do I appear to be in the losing team?

I am impatient, I know that and it is a weakness. I want to get better now. Or if I cannot get better right now, I want a timescale of when I am going to get better. My life is on hold and every set back delays my life.

Maybe it is only a blip and next month I will have a huge reduction in my paraprotein level. Who knows? The medical team seem to be telling me that they don’t, but I secretly get the impression that they do and it makes me feel like the rug has been pulled from under my feet. Is talk of alternative treatments comforting or not comforting? Right now, I cannot access.

I guess, if at first you don’t succeed, try, try again. And then again. Keep going until it has gone. I have said this from the very beginning.

Prior to getting my paraprotein results this morning, I was interviewed for a BBC documentary by the Secretary of State for Health about cancer treatment and my personal experience. I am not going to be modest about this, I was excited and pleased to have been asked to participate. It is not the first time I have been asked to partake in cancer awareness discussions, and there are times when I may actively seek this sort of chitter chatter. This all links to my blog, and helps me make sense of why this is happening and hopefully help others make sense of why this is happening to them. That is my hope.

Right now though, as I sit on the second floor of Macmillan building holding back the tears until I get home, waiting to receive a drug that may or may not be working, I can honestly say that I would give up the promotion, the attention and the blog, if I could get that guarantee that I was getting better. That I was going to get better.

This is impossible.

This too shall pass.

EJB x

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Bittersweet

I have just come out of my first bath since 28 or 29 July. Baths are relaxing things. Mamma Jones took precautions and installed some temporary disabled handles and a non-slip thingy, so I could get out the bath. I did not lock the door, and oh, how this pained me. Trust me, nobody wants to see me naked.

The bath itself was a pleasure. I read a magazine and soaked my chemotherapy dry skin. Hmmm, relaxation station. Crucially, I was able to get out the bath without much effort and without the need for the temporary disabled person’s handles. I had longed for this. Longed to be able to bathe. Simple pleasures.

The experience was however bittersweet. I have now established that my hair loss is cyclical and works with my treatment cycles. It would appear that this week, is a bad hair loss week, just like the one I had three/four weeks ago. In my bath, a lot of hair fell out. A lot. In my fingers and in the brush. According to Mamma Jones I have now lost three eighths of my hair. Not quite a half and more than a third. I now have the hair thickness of a normal person. In a few weeks time, I imagine, I will have no hair. I have said that I am prepared for this, and I am, but boy do I find this scary.

It’ll all be worthwhile when I get better, if only that getting better was sooner rather than later. On the bright side, at least I know I can have a bath now. Perhaps next time, I just won’t wash my hair.

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Hip (H)op?

It is now a recognised fact that I will not be doing any break dancing any time soon, which of course, is unfortunate for those of you fortunate enough to have seen me thrust my hips pre-myeloma.

Today though, I may be getting closer… Actually, that is a lie. I don’t know whether the phone call from my clinical nurse is good or bad news yet. All I know, is that I have just been given another thing to contend with.

Last week, you may recall that I had increased pain in my right hip and this was x-rayed. I was told that there were no new lesions and there aren’t, but what I failed to register when I celebrated last week, is that there is a lesion in my right hip. A weakness. A further pain in my arse (nearly).

As I understand it, some medical people discussed my case yesterday and whilst the jury, by jury, I mean, Medically Trained People, is still out, in the next few weeks I will either undergo radiotherapy or have an operation on my hip. Why? I assume to stop the pain and prevent further damage. I am 28 after all and I like my hip. I use it. A lot. And when My Myeloma is gone, I intend on using it a lot more. Nudge, nudge, wink, wink.

Right now though, my head is awash with questions…. Lots of questions. What does radiotherapy involve? Will it reduce my chances of having my own child further? What sort of operation would I need? What are the risks? Will it hurt? Will I have a scar? Will I be able to walk normally afterwards? Would I be able to wave bye bye to my walking stick? Why is my medical team so good?

I am just going to have to wait for my questions to be answered and be patient; this is a bugger. I am no good at being patient and I am going to have to wait a week. A week!? This is indeed a bugger.

Hippy Hippy Shake

Earlier this week, I went to bed one evening with a new pain in my right hip. The following morning, when I awoke, my mobility in said hip and thus leg had significantly reduced and the pain had increased dramatically. Understandably, I am conscious and ever aware of changes like this to my body, and this one frightened me. In my mind, the possibilities were endless, in the worst case, it meant that there had been a further deterioration in my bones and that my treatment is failing. Another weakness and another lesion. Best case, I had pulled a muscle because I am still learning my limits.

So, Tuesday morning, I hobbled, struggled, into the Clinic and waited to see the Doctor. I did not see the Doctor, but was happy to experiment with my favourite muscle relaxant with all my medical training, with the belief that if the pain reduced with the drugs, all would be well. It improved slightly overnight and by Wednesday, I was convinced I had just pulled a muscle because realistically, after 6 plus weeks in this state, I have probably forgotten how to walk properly. On Wednesday, I met with my Favourite Doctor and was told that I needed to have a precautionary x-ray on my hip, to rule out my worst case scenario or any potential damage caused by my steroids. Why would my medication damage my hip? Another bloody x-ray. Another bloody worry. On Thursday, I had my x-ray. I confirmed once again that I was not pregnant, lay horizontally on a metal slab and jiggled my hips. Twice. I then spent the rest of the day staring at my phone waiting for the results. There was no call. Today, which is Friday, I bit the bullet and called my Favourite Doctor.

[Inhale]

No serious concerns. No more lesions. No bone deterioration.

[Exhale]

I need days like today. I need to hear news like this because despite the fact I am losing my hair, the fact that there is no further deterioration means my drugs are working. It may even mean that I am starting to get better and this is indeed something to be thankful for. Do you know what the best thing about my x-ray was? The thing that made me smile yesterday? I had to lie down on that metal slab. I had to do it twice and I had to jiggle my hips, twice. I then got back up again. Unaided. Twice. This could just mean that my medication is working. Prior to yesterday, I had not been able to lie flat since the 20 August, and the 20 August was My Worst Pain Day. So let me repeat, yesterday, I got up off that metal slab, not once, but twice. Twice.

Must not get too excited. Next week, I have my follow up appointment for the operation on my vertebrae; this is the next big hurdle for my mobility and I am preoccupied with what I am going to hear. My fingers are crossed and I’d cross the toes if I could too. For today though, I am going to sit on the sofa for a few more minutes and smugly remember how yesterday, I was able to sit up from a metal slab, unaided, with a minimal amount of pain, not once, but twice.

Oh, and I tried to get a proper gown shot for you again, but I am afraid you are going to have to make do with this. I promise to try harder next time.

EJB x

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Hairloom

Bloody, bloody, vanity.

In the last few days I have started to panic about losing my hair. The panic has come from nowhere. I really do not want it to leave me. I am a young, single woman and going bald is just not fair. I want to stomp my feet and scream about this injustice from the rooftops.

Maybe it is because I have a good cut at the moment. Maybe it is because it looks so good and people keep complementing me. Maybe it is because I can hide behind it when I am feeling anxious. Maybe it’s because I love a top knot. Maybe it is because I have always had it…. I just don’t want it to leave me. I don’t want to be uglier.

Regular readers will know I have a plan for my potential hair loss and that plan is to not let this side effect defeat me. If I have total hair loss, I plan to rock a variety of wigs, or no wig with some awesome Pat Butcher-esque earrings. I live in East London and I plan to play up to this fact.

I know if the time comes, I will not let it defeat me. I cannot and I will not. Plus I know that there is a posse of people out there ready to give me some top notch advice. I also know through my sheer modesty, that I have some style and my new mantra is that I will not let MM define me. I would get this put on a T-shirt, but the branding might actually defeat the purpose of the message.

I actually find the initial stages the least scary part. It’s the year or years it is going to take to grow back, and then if it grows back, what if the MM comes back and I have to lose it all over again and then have wait to grow it back again? And then what if the MM comes back again and I have to lose it all over again and then wait for it to grow back again? Has anybody seen the size of my head? I cannot pull off a pixie cut. I am not going to live in East London forever. Eccentric wigs are not a long term solution. Mind you, I have seen ‘What’s Love Got To Do With It?’ and I don’t remember people primarily identifying Tina Turner by her baldness or her wigs.

Just let me keep the eyebrows. I used to hate those oriental sparsely populate things, but now I think they are the best friends a girl could have. After actual friends obviously.

I do not want to do this. I don’t want it to happen.

Maybe Big Sister is right. Maybe us Jones’ have so much unwanted hair, that the hair on my head will be so stubborn that it will only thin. It is only fair that there remains some hair on my head to keep the hair on my face and legs company. Let us hope that it thins evenly under the massive mop of hair I have. Maybe. Just maybe. I swear, I am leaving hair all over the place and I am not even supposed to see any signs for at least 12 weeks. There is a chance I am imaging this. I do have a lot of hair and my best friend once told me that my permanent hair moulting was the thing she missed least about living with me… the doctors cannot give me a definitive answer. One says it will stay, another says it will go and another does not know. The next few months are going to be a hair lottery.

It is however, a means to an end. A means to an end. If having a crew cut for a bit means that I get to live my life, then it is a small price to pay. I am finally going to sort out my Burberry Mac and work the fat Audrey Hepburn look. If only I was shorter.

In the meantime, I will be blogging pictures of my hair and my face with my hair, just so we can remember, if the time comes, how I had it good for a while.

And cue, self pity attack, over.

Positivity.

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