Event Planning

Events terrify me these days. They terrify me not because I am socially awkward, though I can be slightly awkward at times because My Myeloma led to my almost sobriety. Events terrify me because they come with so much baggage. The baggage usually comes from my puny brain, and mostly stems from a belief I have that people, that’s right the broad brush stroke of people, do not full understand myeloma and think that it and by connection, me, are a pain in one’s arse.

Will my energy last? Will somebody who does not know about myeloma, or is just plain ignorant, put me in some sort of headlock and yank my neck down? Will a drunk person bash into my back causing it to fracture? Will my back fracture by itself? Will I cause a scene? Will I spend the entire time wanting and needing my bed? Will I have any fun at all? Will people understand that I cannot have fun like I used to? How will I get to my bed? What will happen if I have bowel issues?

Three or four or all of these thoughts tend to pass through my head prior to any scheduled event. They did prior to my relapse, so in the time hence, said fears have only increased.

There are times when I cannot go to events. It has taken nearly two years for me to fully admit this to myself, but it is the sad truth. There are just some events where the value of pain and fatigue crush the chance of whatever fun I may have, and in turn, ever so occasionally, I will let people down by my absence. And yes, I value myself enough to believe that my absence would feature on people’s radar. It’s never an excuse.

A few weeks ago, 12 days ago to be precise, I had to attend an event. Not just any event, a wedding. Not a wedding located in taxi distance from my flat, a wedding near Halifax, Yorkshire. Due to some well documented issues with my back and the acceptance mentioned in the paragraph above, I was unable to attend the hen do.

I have been to a wedding with myeloma in my body. I have also declined two other wedding invitations because the myeloma forbid it. At the wedding I attended, I was a bridesmaid, but there was no fear attached to that event because I was surrounded by a family who know too much about myeloma, so I knew that my limitations had been thought of. My family was also invited to said wedding, so they were around in the evening to mind me. Mind me they did, but not before a drunken fool made my spine go into spasm. The wedding was also located a mere 8 miles from my second bed, which came in handy when I needed to lie down.

Anyway, I digress, back to the wedding in Halifax, away from these comforts. I was advised by a Medically Trained Person not to attend. It was some advice that I paid absolutely no attention to at all. Instead, I set my mind to attending, and put a personal delivery plan into motion, to ensure my success. Sod the bride and groom, it became about me getting through the day. Well, it became a little bit about that, it was still their special day.

I had a week of resting to preserve energy and one day of not leaving the flat at all, lying flat, on the wedding eve. I changed the days I was supposed to take my steroids to avoid any chance of a crash, and I also used those bastards to assist with my staying power (something I did as a bridesmaid too). I also took cereal bars, lots and lots of cereal bars and lollipops, should I, at any time feel like I was about to crash. And still, there continued to be some mild fretting over my usual event related insecurities.

The point of this blog is to say that all that worry, all my worry was redundant. I might even go as far as to say that it was unnecessary. I have long worried that my friends do not understand myeloma and that within that, they do not have the patience for it. The patience for me. It is a long running theme in my counselling sessions. The wedding was on a Saturday and by the Sunday night I had this strange feeling of love and gratitude in my stomach. Almost shamefully, I was beyond pleasantly surprised.

There was a group of about 15 people at the wedding, who I felt were on hand to make my life easier. Actually, my description is incorrect, because I did not feel like me having myeloma was a big deal or a chore or a nuisance (apart from when it came to getting to the car at 01:00hrs, and even then, I was assured that I was none of these things). Some how, it subtly blended into the background, bar my profuse sweating, and I was able to last the entire day just like them.

If you are wondering what the hell I am going on about, let me enlighten you.

• The day before the wedding, a friend came round to paint my toenails because I cannot.

• I did not need to think about any mode of transport, I was driven to and from Halifax riding shot gun.I was also driven to and from the wedding venues, totalling four journeys, with four different sets of people.

• I was allocated a place to lie down, should I (and I did) need it during the day.

• A friend noticed my profuse sweating, and gave me a cooling wipe.

• I was given a means to return to my hotel at any time, should I (and I did not) need it.

• A friend convinced a stranger to drive up a long steep hill at 01:30hrs in a pick up truck to collect me because my lift to the hotel could not get up the hill and the booked taxi refused to.

• The bride kindly excused me from my pre wedding commitment to make jam, because she knew I would struggle to stand and bend at my hob.

So you see, the moral of the story is this: My Support Network do get it, it is not just a select few who understand my plight, and when done correctly, I can pluck a good 12 hours worth of energy from somewhere. Oh, and my friends do sometimes make me feel warm and gooey inside. And I looked nice.

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EJB x

P.S. I slept for 14.5 hours the day after the wedding. It was grand.

Touch Wood

There are many days, and days which role into weeks, where the overriding thought in my large head, is about how much I hate myeloma. The level of hatred has two main determining factors, the first is pain and the second is fear. Pain is self explanatory, fear is not. My fear of myeloma is made up of so many parts, including fear for my future and fear of what obstacle myeloma is going to throw at me when I least expect it, thus disrupting my best laid plans. Myeloma has a habit of doing that, it pulls one down when they least expect it.

I hate myeloma this week for one reason and one reason only. I fear it will disrupt my plans. Not just any plans, the best plans. Next week, next Wednesday to be precise, I get to go on an actual holiday. There will be an airport, an aeroplane and holiday insurance. Ten days after my return, I get to go on another aeroplane, because I believe My Myeloma is letting his hair down.

For me, the act of a ‘holiday’ is far beyond the act of a holiday. I think that is all the best description I can muster for now, for musings about freedom, progress and life is not what this blog is about. This blog is about anxiety. I am so close to actually being able to go on a holiday that I do not, under any circumstances, want it to be taken away from me. As we all know, myeloma has a sneaky habit of zapping all the joy out of a situation, so my concern is legitimate. My counsellor suspects that this is the reason why I have been experiencing a number of anxiety dreams of late. The downside of which, is that for the last fortnight I have been in a permanent state of fatigue.

To mitigate the risk posed by myeloma, I have implemented an EJJ Preservation Project Plan, which for this means that between Monday and my departure date, I have allocated all my waking hours. It is a plan on top of my usual daily plan to exist in spite of myeloma. In reality, it means that I am without a social life this week and I can excuse my usual laziness. If I am not working, I am at home resting, not dusting. My energy expenditure this weekend is going to reduce so significantly, I may not get dressed. It’s not just me telling myself I have to do these things. By now, for those in the know, it is common sense. The more energy I use, the more likely I am to pick up a bug *please do not let me pick up a bug*. The more energy I use, the more likely I am to not be able to get out of bed next Wednesday morning and subsequently spend the rest of my holiday lying in a bed and missing what I assume, will be marvellous scenery. I contemplated living in a protective bubble, but that would not work well with my employment. I genuinely may avoid all forms of seafood between now and Wednesday, just in case it irritates my bowel. I definitely will not be licking a raw chicken breast. For this, I am taking no chances. That’s the myeloma payoff. Yesterday, I stopped myself from walking along a curb, just in case my body decided to fall over resulting in a fractured femur.

Everywhere and everything is dangerous to me this week. Vigilance is key.

Myeloma did this to me and I also hate that about myeloma. It has me always waiting for the other shoe to drop and kick me in the nose as it falls. That cannot happen this week. It will not happen. I have waited too long.

I will be going on holiday. I will be going on holiday. I will be going on holiday. Fingers crossed whilst touching wood.

EJB x

Yes/No

In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.

The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.

Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.

Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.

It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….

And now, I boast.

A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.

I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.

The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.

EJB x

Viva Las Velcade!

This post is about the wonderful Velcade, the chemotherapy that I am on. If you want to know more about it you can click on the link.  I have started my 10th cycle of Velcade and Dexamathasone on the Endeavor trial, (very aptly named as it certainly feels like an endeavor!). My disease is stable and my kappa light chains in normal range since the end of the 5th cycle (see my post And on the sixth cycle). So good news, I’m still in remission!.

Hey, this warrants the inclusion of the dancing cat from an old post! I love the dancing cat but have some reluctance about putting him on again because  the post that I used it on to celebrate the fact that a previous test result that was sky high was erroneous but later on I learnt that it was right, the test that was wrong etc. I do hope that the dancing cat isn’t a bad omen.

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What the heck, lets throw in the ballerinas as well!

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I’ve been on continuous treatment for over 6 months now. I have become so used to this extraordinary way of living that it is not extraordinary to me anymore. I have attended the haematology day unit Mondays and Thursdays for the first two weeks of every cycle to receive a subcutaneous injection of Velcade (that makes 36 times). I leave work around lunchtime then go the day unit.  I sometimes have blood tests first and observations are always done. The Velcade comes out of the fridge having been ordered from pharmacy especially for me. The curtains are drawn around my chemo chair to give some privacy and I expose my bruised and battered stomach for the nurse to find a new site in which to inject the Velcade. She pinches some fat (of which fortunately there is plenty) between her fingers and injects the velcade over a period of around 10 seconds. It stings whilst it is going in and after I have had my observations done 15 minutes later I am free to go. The whole process generally takes around an hour but sometimes longer depending on how busy the day unit is.

I have never felt any immediate side effects and quite often go food shopping on my way home and or go for a run. I may feel tired later but that is counteracted by the steroids that I take on the day of and the day after treatment. A couple of days after the injection, the site starts to redden and bruise and gets extremely itchy and sore. I’ve been experimenting with different lotions and potions, aloe vera gel provides some relief. Other than fatigue which has lessened over time, I suffer from constipation and more recently aching calves. My legs feel like I have walked 10 miles but I have done nothing at all. This could be due to nerve damage caused by the Velcade, one of the main side effects of Velcade is peripheral neuorpathy but this is usually in the hands and feet. My consultant is keeping an eye on it.  The other side effects I experience are more to do with the steroids but as the dose has been reduced these have lessened.

Since my light chains went into normal range, the dose of Velcade and Dex has gradually been reduced to minimise the side effects. The previous 9 cycles involved 4 doses of velcade over a 21 day period, the 10th cycle is less dose intensive and involves 4 doses of velcade over a 35 day period. This is the lowest dose possible on the trial and the idea is for it to be more of a maintenance dose. I will have another stem cell transplant this year but I don’t know when. It rather depends on whether and how long my remission is maintained on the maintenance dose as at some point my disease will become resistant to it.  I never know what will happen from cycle to cycle or how many more cycles I will have and neither does my consultant, we just review matters at my clinic appointment at the end of each cycle. I have got used to living with uncertainty like this but it is tiresome to explain to others in the normal world.

When I finally started chemotherapy last August I assumed that my life would be on hold, that the side effects would be too great to really do much and that I would wait until after treatment to recommence my life but although the first couple of cycles were a bit rough, things have got better.  I suppose my body has got used to Velcade and the reduced dose of steroids has really eased the low mood I talked of in dexamethasone the good the bad and the ugly. Life is too precious to ever be on hold, even on bad days, it is for living now to the best of my ability, whether on chemotherapy, in remission (or both) or even when relapsing.  It is almost impossible to make any plans but in my week off treatment at the end of each cycle, I have taken trips to Majorca, Cornwall, Barcelona, Somerset, London and Lanzarote (yes that was where the photographs were taken in my last post, Keep your chin up).  I’ve also been working (to pay for all these breaks!), playing tennis, walking, getting back into running,  and in a couple of weeks time I’ll be dog sledding in Finnish Lapland!

And so I have my extraordinary routine which I have incorporated into my fairly ordinary life.

Viva Las Velcade!

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Taken in El Golfo, Lanzarote

Velcade Fatigue

I spent most of my Sunday wondering why I was so tired and then getting mad that I was so tired, before I went straight back and wondered why I was tired. In itself, that process is an episode in exhaustion. The exhaustion of which I speak is relative. It compares not to the Steroid Crash, but remains the worst of what I experience during this volume. It

In my mind, there was no reason for the exhaustion, after all, I am being very sensible and adhering to my rule of having a limited social life with so many early nights that I am becoming predictable. Predictable and reliable that is me. I am all about establishing a regime. Even the Costa Coffee Man asks me about my regime. The Regime permits me to live a reasonable life and secondly, judge when something is going wrong. I think I am getting good at it. At least, I was last week anyway.

Last week, I wanted to punch the air when I realised that I had done a 31 hour week, with three evenings of sensible socialising and a day at the hospital. That is real progress. I am with me everyday, so it is difficult to see when I am getting stronger, but even I could see that by close of play Friday, I had achieved something special. I was even told I had more colour on my face, so, get me and my makeup skillz.

In order to achieve such jubilation, I do have to very carefully balance what I can and cannot do. Laziness has to planned. Not seeing my friends has to be planned. I have to plan it all. Last weekend, I had planned to say relax, because my week had been so jammed packed with goodness. Some would say I had written my weekend off, but that would only be the mean people.

Whilst I had planned for rest with my family, I did not plan for Velcade fatigue. When I realised why I was so tired on Sunday afternoon, I was relieved and annoyed in equal measure. I get to see the pattern now, being sensible allows me that luxury. Being sensible does not allow me the luxury of not having a day of tiredness once a fortnight. The reminder.

Being sensible, however, does mean that I can now plan for it. And plan for it I shall. After all, if this is the best I am likely to expect, then I probably should not dwell on it.

EJB x

P.S. In terms of the actions put in place to mitigate the risks associated with another pattern I identified last month, I am happy to confirm that they are working.

Rite of Passage

Few people, unless they have been in the position where they have had to take strong drugs, will truly understand how said drugs can disrupt your body. Even when you think you have been there and got the t-shirt factory, it can still take you by surprise. Despite the fact they are designed to make you feel better, in the short term, they make you feel quite the opposite. They make you tired, they make hungry, they make you lose your appetite, they make you sick, they weaken your heart and so on and so forth, until we get to their secondary role as a butt plug.

Currently, I am trying to learn and understand what the fortnightly payoff is for having a poison injected into my stomach. There is always a payoff and a debt for goodness, and I’m adjusting to that once more. I know what the velcade side effects look like when they are accompanied by other hard drugs, but I do not know what it looks like all on its lonesome and this has me ready to pounce on any change in or on my body.

My post transplant world, fraught with its own issues and darkness, is the longest I have gone without hard drugs, since all this started. The beauty of this little factoid, is that it enabled my body and my system, should we say, a chance to regulate, a chance to acclimatise. Just as I have had to get used to living with this, so too has my body. The problem however, as I am discovering as I type, is that everything and anything that is not the norm, wreaks sheer havoc on my insides. I am mainly talking about drugs here, but it also applies to bacteria. I think an episode last week involving some past its sell by date bean curd made Housemate never want to sleep with his door slightly ajar again… On the other end of the scale, when I was forced to take Oramorph, I made the deal with the devil, which allowed me to sleep, but stopped be from doing something rather special, for a whole week.

At the moment, I know that my limbs are more prone to numbness than they should be. I have had my phone resting in my right hand for a good 15 minutes now and the sensation in my right hand particularly, is not a pleasant one. With my two injections to date, I have been kept up once with the desire to chop my left arm off, as I was aware of its presence and only it’s presence. The neuropathy is the easiest thing to measure. It’s the same as it has always been, and velcade has always been its cause.

More difficult to measure is the fatigue. Fatigue is our plague. I am tired pretty much all of the time, so it is difficult to separate the causes. After each injection I ask myself and others whether I am tired because I am just tired, or am I tired because I have just had bleach injected into my stomach? It’s too soon to be able to answer that question. Not that it stops me from hypothesising.

Of one thing I am certain. I had my last injection 9 days ago and since then, I have managed to empty my bowels two and a half times. The same thing happened a fortnight before. Another deal with the devil, eh?

On the above, I can whinge and I can moan, and I do whinge and moan, but I also need to just get on with it. It is a payoff; maintain a remission for little discomfort here and there.

The truth is, I know it could be so much worse, so it just has to be dealt with. It’s part of growing up.

EJB x

18 month post-transplant review

IMG_2306Today is 18 months to the day after my allogeneic transplant. It’s my 18-month-iversary!

I’m alive, pretty well for the most part, looking and feeling good. So today is worthy of a celebration, although it is more of a quiet nod of acknowledgment than a champagne party.

Here’s a review of my current health status:

  • The myeloma is in remission. Hurray!
  • I still have 100% chimerism. Hurray!
  • All blood counts are within normal range (apart from slightly raised eosinophils, which can be indicative of Graft versus Host Disease, so no-one is concerned about them)
  • Graft versus Host Disease [GvHD] continues to make my mouth dry, tight and sensitive. No treatment has worked, I still cannot cope with spicy or hot foods/drinks. Either it has slightly improved or I have adapted to it. It doesn’t bother me as much as it did previously.
  • GvHD, in combination with being post-menopausal, also continues to make my vagina dry, tight and sensitive. I get some benefit from using Vagifem oestrogen pessaries, but mostly I just live with it.
  • I had two smear tests. The first attempt was very painful, I bled and they didn’t manage to collect sufficient cells, so it had to be redone three months later. That was slightly less painful, with no bleeding and a successful collection. The result was clear. Hurray!
  • I have had a successful mammogram. All clear. Hurray!
  • For over six months, I have been experiencing tightness and loss of flexibility in my muscles, most noticeable in my legs and arms, but also affecting fingers and other muscles. It has been investigated, with no clear outcome. My consultant is now willing to consider that GvHD may be the cause (which is what I had said all along). I will write about this in more detail in another post.
  • I am seeing a Physiotherapist to help with the muscle problem but I’m not impressed so far. He has never come across these particular symptoms before, so he has given me a sheet of generic exercises to do daily, but I’ve only done them once. I don’t believe they will make any difference.
  • A recent MRI scan showed some deterioration of my T12, L1, L2 and L3 spinal vertebrae, most of which was evident in the skeletal survey carried out on diagnosis in 2011. A bone density scan was recommended however to check for osteoporosis. I’ve had the scan, but not seen the results yet.
  • I have completed the full course of Zometa (bone strengthener). Over two years, I’ve had eight four-weekly infusions, then eight eight-weekly infusions. After that, the risk of osteonecrosis of the jaw [ONJ] is deemed too high to continue taking the bisphosphonate medication.
  • Slightly more worryingly, my lung function has decreased over the past months, since the transplant. A CT scan has been requested to see if there is any lung damage caused by GvHD. The loss of lung function could just be residual effects from a recent cold virus. If it is GvHD, there is no treatment. It usually remains at the decreased level, but is unlikely to get worse.
  • As well as muscle tightness, I have recently been experiencing aching knee and elbow joints, particularly at night and on waking. This is very new and I haven’t mentioned it to a consultant yet.
  • I experience fatigue on a daily basis, usually feeling sleepy around 4-6pm, finding it difficult to do much in the evening, often sleeping for up to ten hours a night and finding it hard to get out of bed in the morning. It doesn’t really stop me from doing things I want to do, but perhaps it should…?
  • your brain after chemoOn top of the fatigue is chemo brain: short-term memory loss, inability to retrieve words, almost impossible to multi-task, short attention span, difficulty concentrating and reading, etc. I’m reading (or trying to read) a book to help me manage it. More on this subject in another post.
  • I am still taking anti-depressants. I weaned off them in the summer, but began experiencing anxiety again, so after discussion with my GP, I recommenced taking them. I now feel emotionally stable and will continue taking them for a while yet.
  • After all the excitement over sleep apnoea/UARS mentioned in previous posts, I don’t use the CPAP machine absolutely every night, as it still annoys/upsets me. However I do use it if I’m sharing a room, out of courtesy.
  • At an optician’s appointment, I found out that my eyes watering, which I thought was due to tiredness and fatigue, is actually a condition called dry eye. It is caused by Meibomian Gland Dysfunction. It is a common problem with age, although it can also be a side effect of taking Fluoxetine. Treatment is with an Eyebag and lubricant eye drops. I will write about the dry eye story in more detail in another post.
  • Weird side effect of who-knows-which-bit-of-treatment is that my nose always runs whenever I eat, hot and cold food alike. I don’t have a cold or an allergy… just a runny nose!
  • IMG_2623Daily, the prescribed drugs I take are Penicillin, Aciclovir and Fluoxetine. I add Menopace, a menopause vitamin supplement and have just started taking Omega-7 to help with the dry eye. According to the blurb, it may also help the mucous membranes of my mouth and vagina. I’ll let you know how I get on. In the meantime, I love how the added orangey-red capsules make my tablet boxes a lot more colourful.

And a quick review of my current activities:

  • Tai Chi classes continue twice a week and I now assist the teacher with a new beginners’ class
  • Volunteering for Citizens’ Eye Derby continues
  • Following a Mindfulness course at the Nottingham Maggie’s Centre, a few of us continue meeting weekly or fortnightly to support our mindfulness practice
  • I have started swimming once a week with a friend, usually doing a minimum of 30 lengths (half a mile)
  • I recently participated in a Playback Theatre UK annual gathering and am looking forward to further training and workshops
  • IMG_2614Having relearned to knit, I have begun a new project to make handwarmers – photos will follow when completed
  • I proudly write a four-weekly column for the Nottingham Post newspaper and am looking for other writing opportunities to earn an income.
  • I have my fingers in a few exciting, creative project pies, which are in various stages of coming into being. Life is exciting!
  • I am not blogging much, which I miss, but somehow don’t find time, energy or head space to write, even though I have lots to share.

So, there we are then. Not the most riveting of posts, but I wanted to mark the day with an update, as much a record for myself as anything. I need to publish it now as it’s way past midnight and my anniversary is over. Roll on two years! Then I might have a more lively celebration.

In the meantime, I hope I can blog a bit more frequently. Any hints or tips on how to keep up with blogging regularly will be warmly welcomed.

Mission Complete

At approximately 17:40hrs on Saturday 19 October, I completed the challenges of challenges. I claimed my Everest. I proved myself wrong. In 11 days, I watched 16 feature films and 22 shorts over 19 screenings and I did it all by myself and all without falling asleep in the cinema. To say that I am proud of my achievement an understatement.

I am very proud of myself.

It was not a walk in the cinema, let me assure you. I had had to rely on something known as a taxi more than I would have liked, I fell asleep on the bus in the middle of the day, I became the fidgeter of all fidgeters, suffered severe back pain and there were even a few times when part of me would have preferred to stay on my bed watching films made before 2011, but I carried on. I got my bum to central and East London’s finest cinemas on time, and I relished every moment of it.

At the start of my quest, it was about me defeating my fatigue and thus My Myeloma by doing something I wanted to do, with the cancer tagging along for the ride because these days, I have to accept it’s presence. Just before the halfway mark, and this is the reason I stopped blogging about my daily screening, I found something that was so much better than what I was trying to prove to myself by sitting in the dark. I found pockets of time where I did not have to rely on other people to make me feel good or valued, something I think I lost sight of in recent months. It was all on me. Sure some people had to make the films I was watching (I am not on that many drugs), but I did not need them to hold my hand throughout the screening. I did not need them to carry my bags. I did not need them to support me. I did it all by myself. I stood on my own two feet for 11 whole days.

For those 11 days, with each screening, my brain was able to think about something more than myeloma, in fact, with the exception of the fidget and the need for morphine, LFF offered me at least 40 hours that were completely myeloma free. 40 hours! That’s 40 quality hours of concentration and thought. I did not think about my paraprotein level, I was following somebody else’s story and when I was not doing that I was reaching into my mental library, searching for influences, taking notes, analysing the themes and pondering the thought process behind an aspect ratio. It was bliss, even with the depressing ones.

It is said that cinema is a powerful medium. More things are said about cinema to be sure, but I thought I would point out the obvious. Film is much more than that to me, and when I attach so much meaning to everything now, my experience at LFF is so much more than that. My very expensive annual challenge reawakened something that I thought was dead. It’s indescribable, despite my poor attempt at doing so. Imagine a montage, with several images of me looking brain dead and confused leading towards images of me alone in the dark, wearing various wigs, looking engaged, thoughtful and happy and with each shot my eyes brighten to the point of sparkle. It would need a good actress to pull it off, but I think I am game. The accompanying score would be saccharine such is the power and subtlety of the movement.

Of course things have been adapted for My Myeloma, the taxis and lack of socialising outside of LFF proves that, but at the same time, I probably learnt something that you all knew already and that was not everything has to make a concession to myeloma. Not everything about me has to make a concession to My Myeloma. I do not know why I did not know this.

One week later and I still suffer from fatigue, but I feel stronger than I have for a long time, even with a cold. Crucially, I have stopped crying everyday.

The power of cinema…

EJB x

In case anybody is interested, I saw the following: Captain Phillips, The Spectacular Now, Vic + Flo Saw a Bear, Computer Chess, Nebraska, The Double, Ida, 11.6, Like Father Like Son, Me Myself and Mum, Sarah Prefers to Run, May in Summer, Heli, Don Jon, The Grandmaster, Drinking Buddies and three sets of shorts.

The day after it was all over, I took myself to the cinema. FYI.

List for Living review

After a few rather downbeat posts, it’s time to reinvigorate my blog, my attitude, my faithful followers and not least of all, myself!

As previous readers will know, I have created a List for Living. I keep it updated, but to celebrate 17 months post-transplant today – yes, it really has been that long – I wanted to review it, share my progress and hopefully re-inspire myself.

When I made the list, I was staring the possibility of dying in the face and wanting to blow it a big fat raspberry. So writing this list, which was inspired by a woman with a terminal diagnosis, seemed urgent and exciting, not to mention actually doing the things on the list.

Now that urgency is lessened, but the possibility of a relapse is always hovering nearby, so it feels just as important to do the things on my list. Somehow though it feels harder to justify now that I’m in good health, as though I need a terminal diagnosis to validate following through on this wish list. But I remind myself of something a friend told me from a woman who was going through her third line of treatment, after relapsing a second time… that she wished she’d made more of her second remission.

So often I hear people saying “ooh Jet, you’re so busy… ooh Jet, you’re such a jet-setter!” I need to find a way not to take those words as criticism or envy, to which I respond defensively or self- justifyingly, but just as observations that I can acknowledge with a big smile and a big “Yes!” I don’t need to feel guilty… I’ve earned that right at least by having myeloma!

This is just a quick peek, a teaser if you like. Those that are Done! Ongoing! or In Progress! I will write about in more detail in separate posts… I promise.

1. Go to Paris for lunch
Done! If you missed it, I wrote about it here.

Zeke behind bars6. Spend time with my young nephew in New York
Done! And to be done again if I can… and often!

8. Drive through Italy on my very own ‘Room with a View’ tour of stunning Italian cities (Venice, Rome, Siena, Florence, Naples)
Done! (apart from Naples). Long overdue post to be written soon.

10. Train as a Playback Theatre practitioner and
11. Set up a Playback Theatre group to perform for/to groups of people affected by cancer
Both in progress!

R&Be12. Volunteer with R&BE to raise awareness of blood, stem cell and organ donation
Ongoing!

13. Drive along the Côte d’Azur in an open-top sports car
I had un petit avant-goût (a little taster) as part of my Italian trip.

15. Ride a horse in Central Park, New York
Sadly, this is no longer possible as horses are no longer permitted in Central Park. Read more in my New York post.

22. Foster a dog
In progress!

23. Meet online cancer friend: Deborah, from Hertfordshire, UK
Done! For those who missed it, I wrote about it here.

23b. Meet online cancer friend: Rebecca, from USA
Read more in my New York post.

26. Go barefoot walking
Ongoing!

31. Bake a cake for an elderly neighbour
Done! I actually baked two lemon drizzle cakes, for two elderly neighbours. It may be time to do it again, but maybe a different cake?

Blue Man group32. See a Blue Man group show
Done! Read more in my New York post.

39a. Write a regular newspaper column
Ongoing!

40. Watch an opera in Verona
Read more in my Grand Italian Tour post.

43. Learn to play tennis
Cancelled! I realised that I don’t have the energy or sufficient desire to do this.

46. Re-learn to knit and complete a knitting project
Ongoing! I’ve recently re-learnt to cast on and cast off and reminded myself how to knit and purl. What more do I need? Only to actually complete a project!

48. Do a long distance cycle ride
I had the chance to join some friends in September, cycling the Devon Coast-to-Coast route. I wasn’t quite ready, physically, logistically or with my confidence, so this remains on the list.

leopard moth52. Take a flight in a two-seater airplane
In planning! I wrote about how this came to appear on my list here.

52a. Take a flight in a glider
In planning!

Whew! No wonder I suffer with fatigue. Maybe I’m aiming to do too much at once? I feel driven and sometimes overwhelmed. Perhaps I need to add doing nothing and staying calm to my list? But first, I need to get on and write these blog posts I’ve promised…!

Screening One

Film: Captain Phillips

Running Time: Back Seizing (to consider morphine for any screenings where I do not have an aisle seat and I’ll be sitting for longer than two hours)

Protagonist’s Myeloma Survival: Dead. Or at least paralysed. If the lead character had myeloma, particularly with a weak C5, they’d be saying bye bye to wiggling their legs and arms to be sure. Must avoid being attacked by pirates with guns and a quick temper. It’s based on a true story, so I’m pretty sure that a shipping company would not allow a myeloma suffer undergoing treatment, to captain a ship off the coast of Sudan. We probably couldn’t be a Navy SEAL either.

Fellow Audience: The girl to my right was texting somebody called ‘Ice’. Apparently she was having a bad day…. The girl to my left tutted when she stood on my stick, and then when I explained that it would take a whole for me to stand up. She smelt like fish, apt I suppose for a film set at sea.

Trivia: It turned out the opening night gala of LFF was a black tie event. 95% of the audience seemed to have got that message but me. I’m not going to lie, it was quite embarrassing. Why oh why did I wear blue jeans? That’s going to play on me when i’m with EMan later. I was so embarrassed, I was not able to execute my attack on Tom Hanks (translation of attack equals saying hello), which I had purposeful not worn a wig to execute. Goddamn.

Tired Rating: I really wish my mummy could pick me up from the bus stop and then tuck me in… Yes, at times, Mamma Jones still tucks me in. I have cancer.

A blurry image of people

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