Man Flu

“Post transplant, you’ll have a weakened immune system”

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Quick! Live in a bubble to protect the weakened immune system. The thing with a weakened immune system, even when I am told that my blood counts are misbehaving,  I cannot see or feel any evidence of supposed misbehaviour. My knee bone is connected to my thigh bone, but how is my immune system connected to the stranger who coughed as I walked past them last week? I can feel my back pain, Graft Vs Host Disease and my daily bouts of nausea. I can care about those things because I can see how it all connects in the world of My Myeloma. I take a pill and the pain reduces or if I walk too far, the pain increases. What makes one person with a sniffle the epitome of mortal danger when a person with a passing cough is a mere annoyance? 

A weakened immune system means I am more likely to catch bugs and sneezes than a healthy person. I apologise for stating the obvious, but sometimes, I need the reminder. It also means that once I catch a disease, it takes much longer than I would wish and expect for my body to fight it. An added disadvantage of getting one of these spread diseases is that my body might not even be inclined to fight it. Instead, it might just welcome a few other dirty friends into my cosy camp of a body and then I’ll be stuck spending the next few weeks being reminded that there is a reason I am prescribed two inhalers.

Regarding my immune system, I might not give it too much attention, but I do what I am told. I do not go to public swimming pools and lick the tiled surfaces and I will not eat without washing my hands. I avoid public transport during rush hour and I avoid touching people if I know they are feeling unwell. That said,  my concessions to my immunosuppression has their limits. I am sensible yes, but I refuse to walk round with a surgical mask and gloves on.   
My theory on this subject is that exposure to some germs is good for my repertoire.  Also, I want to live a reasonable life and living in constant fear of the common cold is  not normal, and seriously, how dangerous can a stranger’s cough be? 

The answer to that question is, of course is ‘quite dangerous’. I have discovered this the hard way. To my embarrassment and severe frustration, I have recently discovered that despite not being able to feel it, smell it or even notice it, my immune system can bring my life to a standstill. What started off as a cold, has brought my life to a standstill. 

Approximately 21 days ago, I developed a light sniffle and a sore throat. Two days after that, I experienced a few days of sickness and diarrhoea. The latter are not out of my ordinary, so I assumed it would pass soon enough. A fortnight ago, with my bowel seemingly back to normal, I spent my weekend suffering from lethargy, a loss of appetite and what appeared to be a throat full of knives. Every day, I would convince myself that I was improving. 

After 10 days of feeling slightly rotten and once again, spending too much time in bed,  I thought I best inform the Medically Trained People. The symptoms I had, could have been an infection or Graft vs Host Disease, so I thought it was about time I was sensible and got a second opinion. I loathed the idea of a second opinion. If I did not have myeloma and if I had not had three transplants, I could have just moaned about feeling poorly until I did not. Maybe I could have talked my friends through the varying colours of my sputum on Facebook. I would not have had to go to the hospital for tests…

The following day however, I did just that and took myself to St Bartholomew’s Hospital for tests, because I do have myeloma. Upon arrival,  I christened the building with some red tinged vomit and was informed I had a temperature of  38.5. I was poked, prodded, x-rayed and I was told that I was going to have to be admitted and given intravenous antibiotics as a precaution. I thought it was all a complete overreaction, so I bartered with them. I got the Medically Trained People to let me go home, after I had some fluids and antibiotics, and all but pinky swore that I would come back over the weekend if it got worse. I promised them that I was a very sensible person and I was most definitely capable of looking after myself…

… It turns out, I am a liar.

That Friday evening, I got home shortly after 18.00hrs, climbed into my pyjamas and then my bed and I did not get out again until Monday morning. The only times I did venture out of my pit was to run to my bathroom and produce some vomit that contained blood. I drank and ate nothing. On the Saturday, the hospital called and told me one of my tests had come back and I had Influenza B. Proper flu. As I had the ‘official’ flu, I had to come in the next day to collect some medication. Sunday morning came and I could not get out of bed. Housemate said it was pathetic. I did not need him to tell me I was being pathetic. I really could not get out of bed. Who knew the flu could completely floor me? I have had transplants, I should have been made of sterner stuff than that. 

It’s just so ordinary.

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By the Monday morning, I had drunk less than a litre of water since Friday. I was groaning. Literally groaning. What had started out as something small, something I did not want to make a fuss over, had somehow become something that required actual, real life, medical attention. Seeing that simply willing myself to improve was no longer working, with Housemate in tow, I made my way back to St Bart’s. I had an appointment I failed to brush my hair for, let alone source lipstick for. I did not not look my best. The lack of hydration had caused my lips to crack and the inside of my mouth to bleed.

To cut a short story even longer, we went on to see a Medically Trained Person who looked at me and simply said “oh, Emma” and promptly told me that I was going to be admitted. I had lost over a stone in a fortnight. I was transferred to a private room on a ward. And in that room I stayed for four days. I vomited more blood, I had several bags of fluids and I rediscovered the joy of Mackie’s vanilla ice cream after the anti sickness tablets had kicked in.

  
Apparently, it was necessary for me to be kept in isolation. I did not see a member of staff who was not wearing a surgical mask for the length of my stay. The flu had not only taken me down, it had heightened all my GVHD symptoms. It meant more drugs, more waiting and more lost days. Wasted time, spent alone in a hospital bed. Bar an hour a day, my only company was my laptop and the faceless staff who interrupted my sleep.

I have been out of hospital for five days now, and I am still a pathetic little weakling. I am still embarrassed and angry that I have a body that required hospital admittance for the flu. I resent the fact that even though I am out of hospital, I have been told it is going to take a few more weeks for the infection to go. 

To put my frustration into some sort of perspective, Big Sister experienced a similar illness to me at the same time. She was coughing and sleeping and generally feeling unwell. Sound familiar? Like most otherwise healthy people, she went to her GP and was prescribed a course of antibiotics and was sent on her merry way. I’m jealous that that was her experience compared to mine. In addition to my hospital stay, I required two chest x-Rays, daily blood tests, multiple bags of fluids, nasal and oral swabs, two different types of antibiotics, an inhaler, thrice daily nebulisers, steroids and ice cubes.

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It’s experience right? Hospitalisation for the flu will one day be a funny anecdote I can tell my friends’ kids about. When I tell it, I’ll leave out the part/s about me feeling sorry for myself that at the age of 31, I am considered a vulnerable person who cannot tend to herself. In the future, my story will also include something about being lucky that the NHS cared for me and, with acknowledgment to my stupid weakened immune system, an awareness that it could have been much worse. There are many people, far braver than I, fighting seemingly unrelated side effects of cancer as I type and you read. 

We might be lucky enough to get a remission, but, having ‘cancer’ never reallygoes away. 

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EJB x

Please note that real flu and a cold/other bugs are very different beasts. The memory is raw, liken  them in my presence at your own risk… My cousin said they always say the difference between real flu and a cold is whether you would get up to pick up a £50 note! Take that with you.

Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

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Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

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In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

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Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

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For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

I’ve gone viral!

Since my cord blood transplant I have been beset by one viral infection after another and sometimes two at the same time.  Apparently it is more common with cord blood transplants because the stem cells are immunologically naive, more so than their adult counterparts they have no antibodies or immunity imprint.

The main culprits have been parainfluenza type 3, adenovirus and rhinovirus (click on the links if you want to know more). Whilst my symptoms have not been much worse than a cough and a cold, these viruses, particularly adenovirus can be life threatening in immune suppressed patients after an allo transplant. This virus has been with me more or less since my transplant, sometimes when I am tested it has gone but then it comes back again. It means that when I attend clinic appointments or the day unit, I have to wear a mask as an infection control measure and sit in a separate waiting area on my own or with other patients with masks on too which is annoying as I can’t catch up with my transplant mates and my glasses get steamed up. It feels a bit lonely and isolating.

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Initially I regarded having these viruses as a nuisance which they still are but I have come to realise that they could have serious consequences for me. I almost scared myself to death reading the following about adenovirus:-

“Viral infections may be associated with high morbidity and mortality in patients undergoing allogeneic hematopoietic stem cell transplantation (allo-HCT)1–3. Common viral infections after allo-HCT include those due to cytomegalovirus (CMV), Epstein-Barr virus, herpes simplex virus and varicella zoster virus. Other viruses, such as adenovirus, parainfluenza, respiratory syncytial virus, influenza, coxsackievirus, and rotavirus, are less common among allo-HCT recipients. However, adenoviral infection (AI) has been reported to be associated with significant morbidity and mortality in these severely immunocompromised patients.

Adenovirus is a double-stranded DNA virus that was first isolated in 1953 in a human adenoid tissue-derived cell culture. It has approximately 100 serotypes, at least 51 of which are known to infect humans 16. Infection occurs throughout the year but is most common from fall to spring. This virus can be transmitted by inhalation, inoculation into the conjunctival sacs, and probably the fecal-oral route. AI manifests as a number of clinical syndromes, including rhinitis, bronchitis, pneumonia, conjunctivitis, enteritis, hemorrhagic cystitis, and meningoencephalitis.”

(Extract from an article in the Bone Marrow Transplant Journal 2013 entitled “Adenoviral infections in adult allogeneic hematopoietic SCT recipients: a single centre experience” )

 

I’ve noticed now that persistent URTI’s (Upper Respiratory Tract Infections) as well as hypertension (high blood pressure) are listed as my co-morbidities in the letters from my consultant to my GP.

To try and boost my immune system to fight against these viral infections I have been having monthly infusions of immunoglobulins which having had 4 now don’t seem to be doing much good. I have also been on antibiotics most of the time which are really only of prophylactic effect since they don’t work on viral infections.

A few weeks ago on a Friday I was in the Haematology day unit for some reason I can’t now recall since I am there so often, when my lovely transplant nurse, Nijole, sprung on me the news that the boss wanted me to start a treatment called Cidofovir, to try and tackle the adenovirus. This was to start on Monday and would be administered 3 times a week taking around 4 hours to administer by infusion with fluids. I could feel tears start to well up and Nijole asked what was upsetting me. Between sobs I told her that on Monday I was starting the first lesson of the Spanish class that I had enrolled on so it meant I would have to miss it. What a baby! But what it represented to me was a step into the normal world, doing something other than being ill, recovering from my transplant and going to hospital. Nijole said we would work round it and I could have the treatment after the class had finished so I did go but the level was a bit too advanced for me so I have been bumped down to a another class on a Thursday afternoon after all that fuss!

And so I started this gruelling regime of antiviral treatment the following Monday which has been hard going. Early starts to get to the hospital in the morning following nights disturbed by coughing fits, my body wanted to lie in. On the days in between the treatment, I felt wiped out and nauseous. I had wrongly assumed it would just be for a week but then found out it would continue for 3/4 weeks.  It felt like going to work which incidentally it is just over a year since I gave up. No regrets about that, but on the other hand there’s not been much opportunity to actually miss it as pretty much since then I have had VDR pace, my second autologous transplant and my cord blood transplant. In all probability I would have been on the sick for the last year and there has barely been a day when I would have been capable of going to work. I don’t miss it but do miss my colleagues.

During the three weeks of Cidofovir stuck to a drip in the day unit, I inevitably encountered other patients with blood cancer also having treatment and chatted to some of them.  Sometimes it was a good way of passing the time but sometimes it was just depressing and I wished I’d kept my head down reading a book. There were post allo patients being treated for severe and various forms of GVHD  a couple of years or more on from their transplants which was scary. Some were very poorly.  I had to remind myself that the well ones wouldn’t be in the day unit requiring treatment. I felt quite wretched during this period especially when I found out afterwards that I still had adenovirus so the treatment had no effect and also had rhinovirus again. To add to the grimness, I also attended the funeral of a fellow myeloma patient at the MRI whom I had come to know quite well during the last couple of years. Of similar age and diagnosed at around the same time as me Jane had a donor transplant in 2012, enjoyed some remission and made the most of it but upon relapse her myeloma eventually stopped responding to treatment and took over. Her funeral was inevitably sad but a moving celebration of her life and what came across to me was that she didn’t let her illness stand in the way of doing the things she felt strongly about.  It drove home to me that I must do the same. I have a tendency to say to myself I’ll do this or that when I am better but I may never be better than I am now so I want to do what I can do now as far as possible and not put anything off until I’m recovered or in remission or not so tired. This GIF is quite apt, I need a new wall clock, maybe I should try and find one like this!

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Clearly I need to strike a balance between looking after myself, not overdoing it, avoiding risk of infection and doing the things I want to do. Travel abroad is probably still out whilst I am tapering off the immune suppressants and have infections but there are other things I can do and have done. During this sweet gentle autumn we have been enjoying I have played tennis, been on cycle rides and even an anti austerity demo! Oh and of course, learning Spanish!

Vivir el momento que puede!

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Aint nothing but bad news

I started this post over a month ago but have never been well enough to finish it before something else happens that I want to write about so I am continually playing catch up or editing the post. Rather than completely revamp this one I just want to get it out there and hopefully do a further post quite quickly this time.

It seems as if the holy grail that is remission is slipping beyond my reach unfortunately. I ended my last post, Baby steps to Day 100 on a bit of a cliff hanger as I was awaiting my bone marrow biopsy results. The results were that I had 5 to 10% abnormal plasma cells in my bone marrow. The doctor that gave me the results seemed to think this was good until I pointed out that it was the same result as before the transplant. He then described my disease as stable and said the transplant was probably working and it was early days and I was still on immune suppressant drugs blah blah blah.

I was very gloomy but slightly cheered by the light chain results which showed a reduction from 44 to 29 the second downward result. Not normal range which is up to 19 but not far away. At least that was some good news……until I got the next result a couple of weeks later which was they had shot up to 99 and then the next results two weeks later that they had increased again to 147.  It looks to me like my transplant has failed but my medical team are not using the R word yet.  The boss’s plan is to get me off the immunosuppressant drugs that I have been on before and since the transplant as soon as possible. I am just on cyclosporine now.

Immunosuppressants (anti-rejection drugs), are intended to suppress the function of the donor’s immune system for a long time after the transplant to help reduce graft versus host disease and the risk of graft rejection. I probably would have been tapering down earlier had I not had acute skin GVHD and been on steroids for 4 months. The hope is that as I gradually come off the immunosuppressants I will get some GVHD and also some graft versus disease effect. If that doesn’t work over the next two or three months and my light chains continue to rise quite then I will have to start chemotherapy treatment. Not even 6 months from my transplant and the possibility of being back on treatment looms.

Even though I no longer count the number of relapses any more as I’ve not actually been in remission for sometime now, this news comes with huge disappointment after all I have been through with the transplant and continue to go through.  I’ve not told many people about my latest light chain results as I can’t bear the weight of their disappointment resounding my own. I would like to be able to convey some good news but there seems to have been little of that since my last post especially in the last couple of months.

On a better note, prior to finding out my light chain results, I had enjoyable weekends away visiting friends in Otley and Nottingham and family in Whitley Bay. I felt I was getting stronger and whilst in Nottingham managed a longish walk in Lambley through fields of ripe golden wheat just ready for harvesting on a lovely sunny day with huge puffy cumulus clouds floating around the big blue sky. And the next day,  a gentle cycle ride around Attenborough Nature Reserve alongside the languid river Trent. The first time back in the saddle for quite some time, it has given me the confidence to want to do more. I was feeling good. Now I really need to hold on to that feeling.

IMG_0438                                                    wheat field   IMG_0471

Then a week or so later I got sick and all those good feelings combined with the news of the rise in light chains set off all my anxieties and fears. I started getting temperature spikes every evening and some sort of urinary tract problem which was immensely painful. I was given broad spectrum antibiotics and numerous tests were carried out but the actual type of infection or infections could not be identified which is quite common other than that I had adenovirus ( a common respiratory infection with cough and cold like symptoms but which can be life threatening in post allo patients) yet again. I was told to call the out of hours helpline if my temperature went to 38″ or above. I knew if it did I would end up having to go to A&E and so every evening became a tense game of waiting and watching. The recent loss of yet another friend with Myeloma to sudden pneumonia after his second stem cell transplant played on my mind as did the fact that the last time I had temperature spikes like this was after I relapsed the first time and myeloma was becoming active again. Fortunately I have not had the temperature spikes for the last few weeks and the urinary problem has gone.

I am so bored and tired of it all, there seems to be no end point in sight other than the most feared one. I’m bored of telling everyone my bad results, bored of having infections and being tired all the time and no doubt everyone is bored of hearing about it. People move on with their lives and their daily business  and I feel like I am stuck in a no man’s land with no way out.

When someone asks how are you, how I answer depends on who is asking, the doctors and transplant nurses want to know the gory details of my bodily functions, fine, they like detail and need to know, but when I say I am really tired or my legs ache all the time, they don’t have an answer.  When family and friends ask, I feel it sometimes crosses too many of boundaries to go into detail and there are many responses I could give and sometimes I just don’t know how I am. I am told by my medical team that I am doing really well but it certainly doesn’t feel like that. I think my best and most honest answer at the moment is I’m surviving.

“Does anything in nature despair except man? An animal with a foot caught in a trap does not seem to despair. It is too busy trying to survive. It is all closed in, to a kind of still, intense waiting. Is this a key? Keep busy with survival. Imitate the trees. Learn to lose in order to recover, and remember that nothing stays the same for long, not even pain, psychic pain. Sit it out. Let it all pass. Let it go.”

― May Sarton, Journal of a Solitude

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Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

Something New

WARNING – This blog contains some straight forward, no nonsense complaining and absolutely no humour whatsoever

Yesterday was my first day of treatment for Transplant Number 2, officially known as Day-6. Yesterday, will unofficially be known as my worst experience of NHS care. Yesterday was also the day I did something I said I would never do, and it was the day I shouted at a Medically Trained Person. Twice. I am part completely ashamed of myself and part sitting in my flat, wishing I did not have to return back to that hospital today. 

I feel ungrateful and belligerent. The bottom line is that St Bartholomew’s Hospital is doing a very expensive procedure on me, that my hospital would not do. That is the bottom line. It’s a procedure I need and without it, you could all but guarantee that I would not see 2025. My brain told me this many, many times yesterday. Why should I expect any extras like a smile or good communication. The NHS is overworked and thus should they  only be expected to plan and deliver the treatment because that is all they have time for. Perhaps there is no time for necessities.  Doctors and nurses work long hours and inspect faeces, that is something worthy of everybody’s respect. I should just be thankful that they are giving me the treatment I am getting, shut up, express my gratitude and get on with it. 

That would make for a short blog though. 

I did not feel comfortable or comforted once yesterday. I felt like a nuisance. The more upset I felt, the more tired I got and the more agitated I became. I walked into that hospital feeling hopeful and left feeling deflated and weak. I exaggerate not. I got home and slept for 12 hours plus extra snoozing, how much of that was due to the chemotherapy or to my experience I do not know. I can assume that the anxiety I felt for most of the day, was not a good starting point for my treatment. 

I have spent just under three years experiencing a rather marvellous service provided by the NHS. I do not know the budget differences between the two NHS trusts, but I think I can safely assume that UCLH is also operating within tight financial constraints. UCLH often runs with delays, I know this because I have in my time experienced them many times over. Delays that would allow for a screening of  Gone With The Wind with an interval and lunch. Yesterday, I remembered with longing the five hours I once had to wait for an injection of Velcade. As annoying as that was, it was explained to me and the bad news was delivered with a smile. 

It is not fair for me to compare the two hospitals, but it is incredibly difficult not to. I do not know any better. 

When it comes to the NHS, I like to consider myself a seasoned veteran. I am no stranger to a busy ward, red tape and a strange system for dispensing medication. I know full well that I have been spoilt at UCH’s Macmillan Cancer Centre with it’s comfy red seats and foot rests. I knew that going in and I levelled my expectations appropriately.  At least, that is what I thought. 

Perhaps yesterday just wasn’t my day. Perhaps it wasn’t the hospital’s day. 

Prior to my treatment starting, I had agreed that I will have my treatment as an outpatient for as long as is possible. St Bart’s does offer an ambulatory care, which is referred to as the ‘Hostel’, something, I am told,   should not be compared to the Cotton Rooms at UCLH.  I was given the option of staying there or at home and stay at home, in my own bed, I chose. The plan is for me to come in for five days in a row for treatment. Before yesterday, my expectations on how the conditioning was going to pan out was based on my word processed intinarary. Plus an added hour or two on each day, based on my very own My Myeloma  experience.

  

Yesterday, I arrived at the hospital at 10.26hrs and left at 17.25hrs.  

Big whoop I hear you full timers say. People will have worked for longer yesterday, the people treating me will have had a longer day, but for me, that is a long day. It was a very long and frustrating day. It started promisingly, on arrival I was taken straight through reception and I was told that the order of events was as follows;

• have my bloods done

•PICC line inserted

•See doctor for final go ahead 

• Receive the chemotherapy. 

On the face of it, that is exactly what happened, minus the massive gaps of lost time in between. Massive gaps.

Am I asking for special treatment? Am I being the ‘princess’ a nurse once called me during Transplant Number 1 the First? I worry that that is how I am perceived. The complaining heifer.

It was not until after I had had my PICC line, an x-Ray and waited 75 minutes to see a doctor at 13:35hrs, that I was told that I should expect to be in the hospital for a while. When I met with the doctor at 13:35hrs, I was told that they could not prescribe my chemotherapy until they had received my full blood count results. Results that they had  yet to receive despite the blood leaving my arm at 10.30hrs. To give you a little perspective on this, it takes 15 minutes at UCH. A point I reiterated later in the afternoon along with the fact that my bloods would have been tested quicker had I gone into an A&E. An A&E is not a specialist oncology and Haemotology unit. 

Fast forward to 14.15hrs, I was informed that the chemotherapy would be ready at 15.45hrs. Exasperated, I decided to use this time to have a nap. At 16.40hrs, a nurse hooked me up to an unexplained something. Experience told me it was just a flush, but I did not know if the chemotherapy had been added to the bag. Fifteen minutes later, I discovered that it was not my chemotherapy because two nurses came along with the chemotherapy. 

I cannot begin to describe how frustrating it was not knowing how long I was going to be there for, and  the estimated times I was given not being followed. I became more and more agitated as the day went on, and I did point out during one of my rants that if somebody had told me sooner that it was going to take six hours to get the chemotherapy in me, I could have left and come back. There were several opportunities for the Medically Trained People to do so, but they did not.

The delays were bad enough, but apart from the kind ladies who put in the PICC line, every encounter with a Medically Trained Person was cold, clinical and distinctly lacking in communication. At one point, two people treating me spoke to each other in a different language. One of the nurses told me that if I was concerned about the wait, I should just be thankful that they put the PICC line in without waiting for my blood results. 

After the PICC was inserted, I was required to get an X-ray to ensure everything was tickety boo. I am familiar with an X-ray, but I was not familiar with the process of being taken into the X-ray room and being instructed to change without a curtain whilst the machine was set up. Similarly, I did not expect two woman and a man to be walking around the room whilst I attempted to put my bra on after they had completed the X-ray. 

Again, do I expect too much? 

I am by no means squeamish, and as I  fully understand the need for people to be medically trained, I did not mind when I was told that the person inserting the PICC line was doing it for the first time. I did struggle with the educational narrative and corrections that came from the supervisor throughout the procedure. With every correction, I could feel the tugging and the cutting and I become increasingly aware that I had a hole in my arm with half a metre of tubing entering my body . Fortunately, I had some tools in my arsenal and towards the end, I found Julie Andrews singing ‘My Favourite Things’ in my head on repeat. And then I didn’t feel so sad. 

At some point in the middle of the day, I started to cry. I then cried a few more times. I was alone in a new hospital, where nobody knows my name and nobody seemed to have a desire to learn it. 

It was too much for me. 

Expecting a prescription that I was told would be there and was not, was too much. Explaining to the doctor that I needed one anti sickness pill and not the lesser anti sickness pill, to then be given the lesser anti sickness pill three hours later was too much. Being prescribed less laxatives than I require and asked for, was too much. Not having my questions answered about the immediate side effects of the chemotherapy (I’m talking poop) by the doctor and nurse I asked, was too much. Trying to arrange my treatment times for Saturday and Sunday and being told that they cannot be booked in more than 24 hours ahead, was too much. Asking how it will work with my daily checks after Day 0 and being told to ‘just concentrate on my chemo’, was too much. Listening to an elderly gentleman scream out in pain as a staff attempting to give him a new cannula was too much. Being told that I should have known that ‘Day One was always like this’, was too much. 

I have often said that I would never shout at a Medically Trained Person. In April, during Transplant Number 1, I saw a lady get angry with the staff in Ambulatory Care. Initially I felt angry  that she was talking to the staff that way, but when she explained that nobody had explained what was going to happen to her and that she was scared, I understood. I am at a new hospital and I do not know how things work. Yesterday I was told to sit in a seat and wait and at no point was I told in clear terms what was going to happen and how it was going to happen. There was no introduction and no explanation. I imagine that this is what boarding school feels like.

I just have to like it and lump it. God knows how many days of this I have left. 

EJB x

Allo Allo!

Hello there, before I get things going I think we should all stop and appreciate the pun that forms the title of this blog. I am saying ‘hello’ because I have been absent from my blog of late and I am saying ‘Allo’ because I am writing to tell you all about the allogenic transplant I am about to have. Get it? If you were not a fan of a 1980s sitcom, maybe you will not have understood it immediately, but as I have now explained it to you, a pause for you to guffaw is warranted. 

👏👏🏻👏🏽👏🏿

Right then, here it goes. 

Tomorrow, two years minus one day after my first stem cell transplant and 1063 days after I was diagnosed with the glory that is Multiple Myeloma, I will start treatment for my donor transplant. One could argue that I started treatment last July for this transplant, or, that all the other treatments I have had until this point have led to this transplant, but in the interest of not over exaggerating the sitution, tomorrow the SCT treatment really starts a proper.

It has taken an age to get here, and yet, once again, it all feels like it is coming at me too thick and too fast. I have spent the last few weeks wishing I had more time to enjoy myself post April’s auto, wishing I did not have to waste my limited time and energy sorting negative things out like money and my gas bill. I also feel under prepared in almost every sense possible. The impatient part of me however, which I should add, is My Ruler, just wants to get it out of the way. I have heard all the things that could happen and could go wrong, that I  just want to see what is going to happen and what is going to go wrong.  I want to be able to tell somebody if I’ll be free in a month’s time. I would really like to know how much energy I will have in October for the London Film Festival. I want to see if I really have wasted my last few weeks of freedom fretting over my future instead of seeing my friends and visiting my nearest multiplex. I want to see if I am strong and if I will be lucky enough to to experience weight loss. Most of all, I want to see if the transplant is going to work.

I really want it to work.

I will not know the answer to any of these questions until the treatment starts. It’s not only me who does not know, the Medically Trained People don’t know either. 

Last week, I was informed on two occasions that I am currently in remission. I didn’t believe it. On the second occasion, I was told that I was in complete remission and I was the healthiest I have been since all this started. It made the dire biopsy I had the previous week and discovering that I did not secure the lid on my 24 hour urine sample all worth it. It was news that once upon a time, would face me screaming from the roof tops. For now, it is news that bodes well going forward, only because I am exactly where the seven cycles of treatment and autograft intended me to be. It is exactly where I wanted to be. 

At the very least, it proves that my body is ready to fight the next fight, even if my mind is lagging behind. 

Some people may question the point of Transplant Number 2 when I have already achieved remission. If the last 1062 days have taught me anything, My Myeloma is a stubborn little bugger and any remission I have without the transplant will not last long. I remember June 2014 well. It’s a fact of my life. No transplant, no chance of freedom.

I’m backed into a corner with my treatment. My only true option is the transplant and I know this. Despite this, a question that has been plaguing me over the last few weeks, is that even if I do manage to get a long remission with Transplant Number 2, has the damage already been done? Myeloma came along and dropped a massive bomb into my life and there are times when I feel like I am frantically grabbing at the remaining pieces and failing to retrieve them. What sort of life will I awake to in 5-6 months time? An uncertain one. I have not been able to fully celebrate my current medical position because I have bogged myself down, with sleepless nights with these questions about my future. People tell me to focus on my health and worry about the later, well, later. That is easier said than done, especially when it is me who is staring into an abyss. Sure, my health is the most important thing, but what is health without the means to have a life? 

I know that I’ll think about the above more than once as I go forward, I may even take it out on others.  I also know that tomorrow when I wake up, my job is going to be getting through the transplant. My job is going to be getting myself out of bed everyday to get to the hospital for treatment. My job is going to be looking after my body, monitoring it and doing everything I can to ensure Big Sister’s cells do what we all want them to do.

I first heard of this procedure on 20 August 2012. At the time, I was told that there was a high chance of dying from it, there was a small chance that it would cure me and it was a rare procedure to undertake. I disregarded it. It scared me, it still does. I have had many a conversation about it since and all I know now is that I am ready to take the risk. I would be ready even if the risks were as high as first told. The prospect of being able to have a few years (conservative estimate) without treatment makes my mouth water. I’m blowing bubbles with my metaphorical saliva, I’m that ready for it. 

I have to face it, my life is not what it once was, but that is a fact that will not change by not having the transplant. In all probability, my life would be worse. Like I said, that damage has been done. Taking a risk with Transplant Number 2, the cost of doing, knowing how physically and mentally difficult it is going to be for me and those around me, has to be worth it. It has to be worth it. 

I’m in this for the long haul. 

So, tomorrow morning, I will go to St Bart’s where they will put a tube in my arm that will stay for much longer than I would like. I will have the first of five doses of chemotherapy and one week from today, I will have a bone marrow transplant. 

It’s the end of this blog, but, what it is the beginning of, time will only tell.

EJB x