Tag Archives: worry

The Fear – Part I

I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to have  swallowed a goldfish, but even that causes less goosebumps in me than they once did. I’m not an ox, I still would not enjoy it and any trip to an aquarium equites avoidance at the tanks at all costs. Even the recent odd sighting of a mouse in the flat (mice in Spring, seriously?) has caused more of a whelper than the once or thrice shriek of years gone past. I say all of this, because I have quite a strong inkling that I now know what real fear is. It’s not an inkling in fact, I most definitely know what fear is now and it is all linked to My Myeloma. Myeloma, with it’s series of unknowns and what ifs is terrifying. My Myeloma, which seemed to have inherited the most dogmatic of personalities, so far, can do whatever it wants to me. What I want, what I will and what I need, is barely a factor. In my world, it is, what it is.

Where am I then? For the last few months, since the beginning of the year, I have been experiencing increasing pain in my left arm and in the left pelvis. The pelvis issue is a long standing issue, worsened by my holiday in November and maybe some excess (unnecessary) walking in Amsterdam. When one like me has such keep-you-up-at-night and cannot-climb-into-the-shower sort of pains, there is only really one way to find out what is causing these particular pains and that is the MRI Scan. 

Long time readers with long time memories will know that I loathe the MRI scan. My first one on 20 August 2012 was, without a hint of hyberole, the most pain I have ever experienced in my life. I loathe the procedure, but most of all, I cannot abide waiting for the results of an MRI. I’m terrified of the big reveal. And that, my dear friends is where I currently find myself. Waiting for a Big Reveal.

I can imagine what you are thinking. You are probably thinking there will be no such big reveal, and the pains are just minor things and if there is anything lurking on her bones, then they can be simply zapped away. I say that to myself. Sometimes. Inside my head, I am thinking about massive tumours, secondary cancers and death. Housemate is currently particularly fond of telling me that the pain I have is a trapped nerve. The problem my politeness fails to reveal, is that I know my body. I have known every time I have relapsed by the new pains and I know that this is what is happening to me this time. 

The problem with this time is, what do we do three transplants in and various treatments later, if I gave relapsed? Don’t think about it. Don’t think about it. DON’T think about it.

Clearly I am thinking about it? So, planning  ahead, and realising that I occasionally do need somebody to hold my hand, I asked for Mamma Jones or Big Sister to attend the clinic appointment that followed by MRI scan on Saturday 25 March. It’s mostly so they can listen and ask questions, in the event of me becoming a shelf shocked mute. We had five days to wait for this reveal and believe me when I say, it was a substantial wait. As I am a behind in the story, and to create some more suspense, I’m going to make you wait a little longer too…

In the four weeks prior to my scan, the nerve pain in my left arm had become unbearably worse. I couldn’t sleep properly nor hold a proper stance. I had taken to wearing a sling outside, not because I wanted to be on the cutting edge of fashion, but because I thought it would give my back a break from carrying around my 2 stone + of arm. Gone was the medically trained idea that it was caused by neuropathy caused by previous medications and in were words like, ‘previous disease’ and ‘tumour’. My personal favourite was ‘not to alarm you, but if anything changes, go to A&E right away’. 

And with that, I was left in a long, hot pressure cooker.

As you might have surmised, initially, if there was an alarm, the Medically Trained People did not show it. A feat in medical training. I had lost feeling in half of my hand and had constant shooting pains in my arm. But, as the pains showed no signs of abating, I was prescribed medications. Lots and lots of medication. 

I have always considered my pain relief systems rather light, but in the matter of a few weeks, I had gone from having 80mg of MST (slow release morphine) twice a day, six paracetamols and two Lorazepams which doubled up as my anti nausea tablets. To, 100mg of MST twice a day, plus breakthrough pain relief, eight paracetamols, 300g three times a day of Gabapentin, four lorazapam and then in increasing doses finalising at 50mg of Amitriptyline, to allow for something resembling sleep. Even my ever increasing nerves were unable to shit that increased intake of medication out.

So not only was I in constant pain, I was constantly exhausted, making me feel constantly irrational. A sleep however, even if it is drug induced, proved better than no sleep at all. Even if I did feel like I was on the edge of my seat the whole time.

Despite all of this, I still tried to be strong. I mean, I didn’t really sleep much in the week leading up to my appointment and I relied quite heavily on my friends to keep me distracted, but I socialised and I laughed. Thankfully, the weekend of the 25 March was not just the weekend I had an MRI scan, it was the weekend of my most dear friends’ wedding. The distraction was just the tonic, even though I had to leave early on one day because I felt like somebody was playing the banjo on my funny bone. 

This is a picture of me to prove that despite looking dead, I was still doing my damnedest to live, as Miss Havisham. It also shows I exist.

Wondering what was going on was never far away. I’m going to let you into a little secret, in November, as part of my attempts to medically retire, I received a letter saying that I had an outlook of 12-15 months. 12-15 months! Ever the pragmatist, I took this as the worst possible case for my 32 year old lifeline and hid it in a drawer somewhere in my brain. There are no finite treatments remember. 

As much as I like to pretend I’m a fighter too, I’m more inclined to think the worst when expecting test results. Katy Perry wasn’t going to hear me roar. As the days grew closer and the pain increased, I couldn’t help but be reminded of this timeline and these facts. Add to that every possible consent I have ever signed for treatment, noting severe side effects (SECONDARY CANCER) and I had become a shaking, irrational, moody pants. Afraid of upsetting myself with my almost self fulfilling prophecy, but terrified of it being the truth and constantly, on loop watching  my life slowly erase from the lives of the people I love. 

Who knew that lying down on a machine for what was nearly 2.5 hours could cause that sort of fear in me, but it did. I think I hid my hysteria well, but that’s just my personal opinion. These discussions, less than five years into My Myeloma journey seem real now.  I am afraid of dying, but I am so scared of leaving my friends and family. 

I have long discovered that this is not a subject anybody who loves me wants to entertain. It’s definitely not something, in the middle of tests one can really talk about because one is trying to be hopeful. It was all I could think about. I felt so duplicitous and defeatest. Some mornings, when Housemate left for work, I would snuggle up to the Bruce Dog and think ‘are you going to remember me?’. I would then apologise to him that I couldn’t lie on my left hand side because my pelvis just couldn’t take it and worry he was going to hate me because one day, I won’t just leave on a weekend trip to my parents’ house. On the issue of my pelvis, this is indeed a mental fight I have with the dog on a daily basis. He doesn’t understand why I have to lie on my right hand side. He’s a bloody dog.

So, then the day came. My clinic appointment at UCH on Thursday 30th March. I was so nervous, I ploughed down a  packet of Refreshers in my first 15 minutes of waiting. My need for sugar was greatly met by my Big Sister with a nice, unhealthy slam of Tablet. The best food with a medical name on the market. I don’t recall much of the waiting period. I know it was a few hours and I did my customary monthly pregnancy test. I remember Big Sister saying my favourite Medically Trained Person had a good poker face, but that was it. 

What fate was going to greet me when I was eventually got called through? Then it happened, I was called through not by a registrar, but the Head of the Clinic. Bad news. I walked in with my best smile on and my head held high, for that is all I have always done.

The MRI scan did show disease in my neck, which is causing all the pain in my arm and my arm. Blah, blah, blah. My pelvis is also in such a state that it’s impacting on my muscles and it is for that reason, I have required a step stool to get into bed these last few months. Fortunately, these little nuisances can be treated by radiotherapy. Frustrating, sure, but fixable. I exhaled. Briefly.

For what came next, could well have been the worst thing I have heard since the day I found out I had myeloma.

You have stopped responding fast enough to all traditional Myeloma treatments…’

And with that, maybe a minute or so later, I cried.

To be continued….

EJB

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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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Mountains and Molehills

I thought that my time off would be easy. My body is not undergoing any treatment, my energy levels are high and I am no going to the Centre every day. It sounds heavenly and I am sure that there are many people who think I am fine. The truth is, that this time has been far from easy.

I cannot really say how difficult I found my diagnosis and PADIMAC, I know I did, this blog tells me so…. I can say that I have found this limbo equally as difficult, though fortunately, over the last week, I have been able to come to terms with the challenges I have faced, both actual and manifested.

A bit of time off is a gift. It’s true in general life, but when one is undergoing cancer treatment, a bit of time whilst you are feeling well is more than welcome. A bit of time. Six weeks off is too long. I constantly feel trapped, I feel trapped in my flat, trapped by my body, trapped by the schedule and trapped by my situation. I have gone from having a full time job and an active social life pre cancer, followed by a hefty treatment schedule, to nothing. I wake up everyday and find motivation difficult. While somedays I do have plans, this limbo has seen me spend a lot of time by myself. More time than I care for. I am no mathematician, but I wager that on average, I spend 80% of my days alone. As boring as PADIMAC was, I saw more people than I do now. I had drivers, nurses and Macmillan Support Workers to bug when I had conversation aplenty. I’d store it up and unleash the beast. In the last six weeks, I have found myself in frequent conversation with myself. We get on well, but it is easy for us to create dilemmas. Us Geminis really are drama queens.

I find myself now, yearning for the end to this volume of My Myeloma. It’s more of a fantasy. I spend this limbo fantasying about all the things I am going to do when the myeloma is sleeping. I look forward to things. I have one target right now and that is not making sure I get out of bed before midday or ensuring that I have some structure to my days, the target is just to be normal. Try as I might, this time, although it offers glimpses of normality, it doesn’t offer me everything. I am restricted by my mobility, by my funds, by the schedule and my My Myeloma. I want everything. I am excited about the day when things get back to my new normal. EJ plus myeloma. I’ll make it work, I just cannot make it work right now.

I make plans in my head and these I look forward to. I look forward to a life where the main protagonist is not medicine. Medically, at this moment in time, I have nothing to worry about because nothing is happening. Now, if there is something or I perceive there to be something afoot that can effect my plans and my return to normality, I am devastated. I mean, snot everywhere devastated. Things that previously would have been a minor hindrance or detail, represent the end of something gigantic and dashed hopes. Predictably, this makes me susceptible to making a mountain out of a molehill.

I do not think I am creating mountains at his current moment, but two weeks ago I was. Whether it was a change to my job or my insecurities at what My Myeloma has done to my relationships, the effect is exaggerated in my mind because I have nothing else to focus on. More often than not, things are quickly resolved and become mere folly. I need to learn that the sooner I vocalise them the better. I need to not let things stew, but I do like a stew, just ask my slow cooker. It’s just difficult when there is nothing else…

Fortunately, the end of his limbo is nigh. The time when my transplant is my priority is looming and frankly, we cannot wait.

EJBs x

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