Monthly Archives: April 2015

Day + 13

For 15 days and 14 nights I have ‘defied all odds’ and I have only stepped in foot of a hospital once to see the view from the 16th floor of the tower. The world I have seen has been very much restricted to half of University Street, approximately a fifth of Huntley Street, a few lifts, the Ambulatory Care, a treatment room or two and the Cotton Rooms. Most of my day, I would guess at least 90% of my day has been reserved for my bed and the room it is in.

I have saved you from the monotony of this, mainly because I have not had the energy to put words into sentences in my real life, let alone on a blog, but I have an hour to kill right now, so I thought, why not share my 200 metre in diameter bubble.

90 percent of my time on or in bed is a long old time to spend on or in a bed. We had to buy a blanket, so I could feel there was some distinction between the day and the night. I have watched, or at least listened to a lot of television. If daytime TV were not so horrific and my brain function not so limited, I could have enjoyed myself.

   

     

Anybody with a beady eye would have noticed that I swapped beds in the photos above.  There is a valid reason and that reason is because I was without a Mamma Jones or Big Sister from Monday morning and the former said I needed to be next to the emergency alarm. That was one of the most significant events over the last fortnight. Similar, but nowhere as painful as my five stools.

The Cotton Rooms, as I would have said the last time I experienced them, are more than palatable, I think they are better than anything Lenny Henry would advertise, and it has working air conditioning, which I could never not be a fan of. 

If the views from my beds were not riveting enough for you, I walked, possibly an entire cumulative mile in the same shoes, seeing and experiencing all of this, whilst feeling like there was a trout living in my skull, using all my available energy. 

             

   

           

   

   

It may cause some feelings of envy in you, for I have been told that not all Ambulatory Care ‘hotels’, are as slick as what I have had the (dis)pleasure to experience. The good old NHS, eh?

My favourite thing to look at each day is not a cold EMan ripe for sniffing, but a lone building, which reminded me half of the house in ‘batteries not included’ and half of the house in ‘Up’. It was a last building standing, for it’s immediate neighbours had been not so long demolished. My photo of it, does not do it justice.

  

Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed. Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed…. That’s been the last 14 days. 

Right now however, I have mixed things up a little and my view is this and my is it beautiful:

  

My routine will continue to be monotonous and I will continue to be weak, but I will be in my own beds, with the dog/dogs around me, in my own space with on demand television services, feeling rather smug in the knowledge that I had an autogenous stem cell transplant, without being hospitalised.  There is very little I can feel smug about, so I will embrace becoming an urban myeloma legend.

I’m home and that, on Day + 13 is bloody brilliant.

EJB x

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Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

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Day+4

Please not this blog was written yesterday. Today is Day+5, but really, who is counting? 

I have to be blunt. This sitting around and waiting to get sick, is nonsense. It is a nonsense that is really is getting on my tits. That’s right, on my tits. I am aware that that statement is somewhat crude, but I do not want to use my very limited energy coming up with a more palatable way to express my frustration. Waiting to be deemed ill enough to be admitted to hospital is beyond tiresome. Knowing what that illness feels and looks like, and waiting for it to happen, is not something I would wish on my top ten list of worst enemies. It has to get worse before I can feel better. I cannot compartmentalise this yet. I cannot cross the bridge yet.

Today is Day + 4, the day I was admitted to hospital during the last transplant. I did not envisage outdoing my previous milestone. I planned, and I prepared, and I convinced myself that the treatment would take me down much quicker than it did last time… I am quickly trying to readjust my thinking. It’s back to the drawing board. It’s difficult to do that when every minute of every hour of every day of this last five days, I have waited with pure dread for the unforgivable mucotitus. The chickens have not hatched.

At this point during the last transplant, I felt worse than I currently feel. My bowel had already started to fill a reservoir, my stomach was cramping, I had not eaten for 24 hours and I had a fever. Today, I feel quite nauseous, but the three anti sickness pills taken three times a day, seem to be doing their job and I managed to nearly finish my lunch earlier. An outsider would be forgiven for thinking it was a piece of cake, but to the feeling of almost constant near vomit, add the need for 12-16 hours of sleep every day since Friday, burping after every sip of water, stiff joints and the occasional sweaty brow; and a poorly Emma you make. Just not poorly enough. What I experience now, I would  describe as ‘horrible’, but it is nothing compared to what is to come and I feel that most keenly. Am I allow to seek sympathy now when I know I am going to need so much more in a few days, or am I just crying wolf? 

There is a lady in the hotel who had her transplant on the same day as me, and she is waiting to become unwell  just like me. However, I am jealous of her, because unlike me, she has not experienced the ‘feeling unwell’ before. It’s ridiculous, but I think I found not knowing exactly what to expect much easier than I have the last 72 hours of remembering. I would be the first to admit that I do not recall how accurately I have remembered it all. Accurate or not, my current anxiety is real

As things currently stand, my White Blood Count and Neutrophils both stand above 2, I do not have a temperature, my mouth feels woolly and my stools are non-existent. I am eating, but I am unable to drink more than a litre a day. I am more than under the weather. 

I am whinging. I know I am whinging. I cannot help it. It’s the fatigue and the overwhelming fear that I will not be strong enough to manage the pain and inflammation of my body’s mucous membrane. That my friends, is the long and short of it.

Fortunately for me, I prepared for such moments of self doubt. There is the obvious response to my questions of coping and getting through it all, stolen from a sports brand, along the lines of just doing it.

However, when I feel like my ego needs a bit of stroking, I take my mind back to February 2015. “Hello a birthday weekend away with friends in February 2015”, I say. A weekend when, in spite of being at the end of a  very long course of debilitating treatment, and thus, worrying of nothing but my ability to stay awake, I defied all my expectations and stayed awake. I saw 05:00hrs for reasons other than my back hurting and steroids . It was hard work and required some preparation, but I did it.  I was so pleased and surprised with my three day performance, that I, rather delicately declared that I had “pulled some energy out of my arse”.

A few days after that, I was asked how I thought I was going to get through my transplant, and I responded with “I will just have to pull something out of my arse, that is what I have done so far and it has worked.”

So, can I pull something out of my arse yet?

EJB x

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Day Zero

My Day 0 happened two days ago. Personal experience tells me that when one’s days are measured by pluses and minuses, it is very easy to lose track of time. That’s the reason why I am two days late in telling you what my second stem cell transplant was like, I genuinely have no idea what day it is. Well, I know it is Day + 2, but I only know that because I have just returned from my daily observations. 

Back to Thursday, which was two days ago (it helps for me to repeat things because my brain function is so limited, making my next few blogs, I fear, nothing but factual). As the Medically Trained People require a full 24 hours between the Megatron going in and the stem cells, my transplant was not scheduled in until 16:30hrs. Given the late kick off time, Mamma Jones and I went to a morning screening of a Disney film in Leicester Square. It really was a perfect way to waste time and escape the road they call Tottenham Court. Cinema is a form of escapism after all. I could only escape for so long, and I was soon back to reality. 

My reality was lying on a bed with a PICC line in my left arm and cannula in my right, whilst I thought of nothing but the pain to come. All the magical wonder I experienced during my first transplant, the big cylinders on wheels storing frozen  stem cells, which then need to be thawed to 37 degrees Celsius, had gone. Even the big blue gloves the Medically Trained People have to wear to handle the frozen cells failed to get me excited. 

Fortunately, fate decided to play a little game on me and my pals, so that I could feel something beyond apathy towards the actual transplant. All 90 minutes of it. 

Fate, gave me 10 minutes of irrational panic.

For, after the Doctor had done his final check and the go ahead was given, and the nurse put on the big blue glove and leaned into the big cylinder on wheels, what did they find? Nothing. They found absolutely nothing. Another Medically Trained Person attended and placed the big blue glove on her hand and do you know what she found? Absolutely nothing.

The stem cells were not there… Now, apparently this had never happened before. The scenerios running through my head about what had happened to my stem cells were pretty imaginative, but not as imaginative as Mamma Jones’ who had three scenerios (not one involved them just forgetting to put the cells in the frozen container). My favourite of hers was that the hospital had accidentially given somebody an allograft using my tainted cells. In comparison, I temporarily thought they had lost my cells, making my medical plan was a  waste of time and thus ruining all hope of recovery. I hid these thoughts well.

After a few minutes of pure imagination, a man appeared at the door, apologised and explained that my cells were still in the freezer. That was it. We all breathed a sigh of relief and I thought to myself, well, that was different from last time. You will find that my thoughts of late really are not that exciting. 

Mamma Jones then, in celebration and relief, nipped out to get me a drink. 

And so, everything was finally ready, the first of three bags was hooked up, I had confirmed my name and DOB and Mamma Jones appeared at my door with something that resembled a milkshake from Starbucks. I had a sip of the drink and I did not like it. Almost immediately after that, my throat began to tickle and then it began to swell… I thought about not mentioning it, but what if the throat were to swell even more? So I mentioned it and the Medically Trained Person said it was probably because of the ‘preservative’. 

There I was, ready to sue Starbucks, until I realised that it was not the extra special ‘raspberry’ flavour that had given me the extremely tickiliy throat. The cause was whatever scientific juice they had used to preserve my stem cells. I thought to myself, well, that was different from last time. It took Mamma Jones a little longer to realise that my allergic reaction was stem cell and not Starbucks based. The Medically Trained Person overseeing my transplant, had decided by the third bag that I was in need of some antihistamine, and I can confirm with you, that I was indeed. I had never experienced an allergic reaction like it. I felt like I was in in a movie. An anticlimactic movie.

Once I had been given the antihistamine intravenously, I can confirm that I was no good for anybody, not even myself. Words became a muddle and sleep became my target. By 18:45hrs, the transplant was done and the only place I was heading was to bed. For 14 hours. 

And that was that. In just 90 minutes my transplant done… There was no pomp and no circumstances. Apart from the mentioned mishaps, it all, looking back, sounds so simple. Three bags of cells and the deed has been done… 

If only that were true. 

If only that were true.

EJB x


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Day -1

As I had long anticipated.Yesterday proved to be a busy, tiring and emotional day. Fortunately, as I had long anticipated, the majority of my emotions were overtaken by the sheer practicality of all the needles, waiting and consenting. It was a day of work, if your work is displaying super human strength and kindness whilst under duress.

Day – 1 is the day popularly know as the day one receives their Megatron chemotherapy. It could be Day – 2 if one was unwell and the transplant is postponed by a day, but my title is one of hope. I will be getting my transplant today, providing the nausea behaves itself. 

Whilst I was too busy yesterday to write another blog, I was able to make a note in my Notes of the key timings and events that made up Day – 1. It was no party.

06:30hrs: Awoke feeling refreshed and rejuvenated, if those things meant I awoke feel anxious, unable to sleep but eager to get things going… I then did the things we all do as part of the morning routine of getting ready to leave the house/flat.

08:36hrs: I had said my brave goodbyes, largely ignoring my dear Bruce and at this point, I was sitting in a taxi driving down my street. The driver took the bumpy roads.

09:00hrs: I arrived at the hospital, greeted by my mother who had arrived nearly an hour luggage. The first priority was to unload all our stupid luggage, dumb luggage. I really do have a great deal of luggage. I packed four books for light toilet reading.

09:12hrs: We walked down the stairs to Reception 2 on the Lower Ground Flood, and booked in for my PICC line appointment three minutes later. I also discovered a concealed toilet.

09:15hrs: Surprise, surprise, a Medically Trained Person called out my name and with that, I was led to a room I had visited once before. It was the first point in the day I felt Deja Vu, and Deja Vu it was. For legal reasons, I had to listen again, despite remembering, to what they were about to do to me, the risks involved with the procedure and then I signed a yellow form to say I understood it all. 

I then removed my shoes and jacket and lay on a hospital bed under blue surgical sheets whilst another Medically Trained Person pushed a tube through a hole in my left arm, whilst he looked at a screen and a lady looked at my ECG results. At some point, I was told off for contaminating a scanning device with my right hand. 

  


10:13hrs: The line was in and off we went to Ambulatory Care on the Second Floor, via Costa Coffee. On arrival, I introduced myself as ‘Emma Jones, arriving for the first day of transplant stuff’. I was told it was one hell of an introduction.

10:30hrs: Alternatively known as Observation Time, meaning I had my bloods, blood pressure and temperature taken, I got weighed and apparently I am 5ft 7″; I remember being taller.

Shortly after this, I was advised that I was going to be seen by the doctor shortly and I would hopefully have the Melphalan (Megatron for you and me), around 13:00hrs. I would have to wait until then because the drug would need to be prescribed by the Doctor and then ordered from the pharmacy.

At some point, I did see a pharmacist.

12:15hrs: The Doctor finally made an appearance, to be fair, he had made several appearances on the floor, but it was at this point he introduced himself and took me to room 2.6, for a quick chat and another yellow form. I would have mentioned this before the last one, but I was told that this procedure is not curative and there was a 2-3% chance that I would not leave the hospital after it. The rest of the risks involved infections and talk of intensive care. So, I signed the yellow form quoting something I or somebody else said last week and that was “if I did not sign it, the result would definitely be negative”. 

The Doctor, who was Medically Trained also told me that given the amount of treatment I had had, my heart and kidneys were in “great” condition. Mamma Jones said “good stock”, I thought, a pat on the back for obese people everywhere.

I then wandered back to Mamma Jones and the nurses, and I was told  not to come back until 15:45hrs, at which point, I would have the Melphalan at 16:00hrs. Great, I thought, food.
12:38hrs: Before food however, we collected our luggage and checked into the hotel. Also known as the Cotton Rooms. The Cotton Rooms looks just as it did before. We are in a twin room over looking the beautiful sight that is, the Macmillan Cancer Centre. Just like before. I also made sure I got a DVD player, which is also, just like before.
A lunch then filled the gap, along with very practical trips to Boots and Sainsbury’s for fizzy water whilst I can drink it and popcorn whilst I can eat it.
14:51hrs: We returned to the cancer centre with giddy excitment ahead of the chemotherapy. In addition to my mother, I was accompanied by eight ice lollies from Sainsbury’s. 
  
16:24hrs: I was hooked up to a drip and the Melphalan, started my first ice lolly, and with that, it all started. 
16:31hrs: Ice lolly 2
16:38hrs: Ice lolly 3
16:48hrs: Ice lolly 4
16:56hrs: Ice lolly 5, an ice lolly that was accompanied not by chemotherapy, but with a flush. After a bit of faffing, all was done and I was released until 09:15hrs today. 
17:25hrs: Bed and pyjamas. Bed and pyjamas in the hotel. Needless to say, I was very tired, but not tired enough to sleep, and so I watched High Society and half of Pretty Woman.
Aren’t transplants just a hoot?
As for this morning? I woke up with nausea, fatigue and swollen feet. I still had bacon mind. 
EJB x 

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Subject: Me, Me, Me

The following is an email I sent to some of the Support Network in preparation for today and beyond. In some of this, I will repeat things that I have written previously, but in my current, highly rational state, I think this is a good indication of where I am, and what I need to come. Why send a private email you ask? Well, firstly it saves energy, and secondly, I hope to dispel an ideas that my medical plan is the same as having a wort removed… Mind you, until you have pooped your pants and hallucinated green goblins bursting out your stomach because you are in so much pain, it’s all relative isn’t it? 

Please note, some of the names have been removed because this really is, all about me.

From: Emma Jane Bones

To: Friends

Sent: In the early hours of 29 March 2015

Dear All,

Hello. As I have had the last minute go ahead from the powers that be, I thought it was time for me to send an email outlining just what the hell is going to happen. 

Fear not dear friends, it is not an emotional email, just one layered with practical points about how my year is going to roll from now on. If some of that sounds emotional or distressing, it was not my intention. BLANK, The Counsellor suggested me levelling expectations. I think this is levelling expectations.

I know that this may seem self indulgent, but the transplant clock is a ticking. Plus, although it will not be emotional for you, it is an emotional subject for me, so it is easier for me to write it down rather than to say it. Secondly, I hope it’ll save me from telling people the same thing over and over again, forgetting who I have said it to, and thus bore you into silence.

Before I get going, I would like to thank those of you who have organised and/or participated in recent activities. To everybody else who I have not been able to see, I thank you for still continuing to care. It’s all very much appreciated. More generally, I had hoped I would have been freer from this for longer, but that was not the plan, so I thank you for still being around.

I am going to try to keep this brief, but who am I kidding, I can never be that brief. 

The Plan

1 April
I will go to UCH on Wednesday morning, when all being well, I will be given the high dose chemo. I will initially be staying in ambulatory care, also known as the hotel, with my mother. 

Thursday is known as ‘Day 0’ in the biz and this is the day I have the transplant. 

3 April onwards
I will be in Ambi Care until the poop starts or my temperature hits 38, or I show any other type of illness. There is no real way of knowing how long this will take, last time I was out for 5 days, but that means nothing.

Once I am sick, I will move into the tower on the 13th or 16th floor.  They say expect to be in for 3-4 weeks, but last time I was in for 10 days… I know which option I would prefer. 

My hair will go FYI. My feelings towards this are surprising. I did not anticipate this much dread, but the dread is there. I’ll be shaving it off after I have had the chemotherapy, maybe on Friday. If anybody fancies doing this for me, let me know? I have George’s clippers.

On Discharge
Once I am well enough to go home, I will be heading back to BLANK until I am well enough to reasonably look after myself. I say ‘look after myself’, what I actually mean is able to return to the flat and only rely on BLANK for a few things instead of everything.

During the time between transplants, I doubt I will be able to do that much. Afternoon trips to the Picturehouse might be doable. Definitely/maybe no alcohol. As with everything else, we will just have to see.

For those of you with birthdays during this time, I will endeavour to attend, but do not hold it against me if I do not. 

June/July
I will go to St Bart’s for the second transplant. Initially I will be an outpatient, there is a chance I will remain one for the whole procedure, the odds they gave me for this are 50/50. 

Don’t let this outpatient nonsense fool you. Whilst the risk of a particular negative result is no longer 40%, it is still high. Those figures are not based on the first few weeks after the cells are introduced, it is based on the months (and I mean months) after and whether my body decides to completely reject my sister’s cells. If this happens, it happens, but fingers crossed it will not. Best to say that now, so you have realistic expectations. It may not be an operation, but it’s a serious thing. 

I have been told that the best case scenario post number 2 will be rashes and gut problems, with a side of fatigue. I’m hoping to go back to being a size 16. Anecdotally, the fatigue is something I have not yet experienced. I am afraid of this the most. I am afraid of only having the energy to lie in bed for months on end and become bitter. I do not want to become bitter.

I’ll hammer this point home, the recovery is going to be long. Real long.  The guidance says no international travel for two years, but I think this must be wrong. 

Hospital Visits for Transplant 1

Whilst I am in the hotel, I will be accompanied by my mum or sister. On Wednesday, I imagine I’ll be too tired when it is all done and I’ll just want my bed, so no visitors that day unless you want to watch me suck ice cubes during the day. 

Thereafter, I will be able to receive and I will need visitors.

As I’ll need my mother a great deal throughout the year, I have said she does not need to be around too much whilst I am in hospital. This will mean that I will need visitors, because being stuck in a room for 10 days (or more) is extremely isolating. 

Here is the problem, I may well not have the brain capacity to schedule your visits. At the start, I’ll be better at it, but when the pooing and vomiting starts, I’ll probably find texting back stressful. I’m not sure how to resolve this issue, other than just ask you to come and hope I’ll be free. Or you can organise it amongst yourselves. Not practical I know, but I’m just anticipating the worst case scenario.

There are no visiting hours, although the mornings are when the doctors do their rounds and when the cleaners come. You probably do not want to see them.

It sounds obvious, but if you feel unwell, do not come. I will have no immune system. Don’t buy me anything.

In between visits, feel free to keep in contact, I’ll be tired and might not always reply right away, but text messages are always fun.

You

After my release, I will be suffering from fatigue. It’s a word you will get bored of. The fatigue, as I said earlier, will get worse after the second transplant. I am not exaggerating when I say that getting over the last transplant’s fatigue was the hardest thing I have ever done. It makes it quite difficult to trust my emotions.


As such, it would be prudent for me to say that there will be times when I become depressed. I hope not many, but it will happen and that will make me question pretty everything and everyone. In turn, this may make me appear like an irrational and mean bitch. All I can say to this is please bear with me, and try not to give up on me. I have an aromatherapy stick this time for relaxation, and you never know, it might just be what I need to keep it all together. If it is not, I will  apologise to you in advance.

Not being able to get out of bed, for long periods of time, it is easy to feel forgotten and lonely. So, I’ll need one sided friendships for a while. Colin will need a break sometimes too and I may need people to cook for me and other things. All this will require me learning to ask for help, or you could just be forceful. That will be tough on you, because I will become quite dull.

My life will probably be quite myeloma obsessed. Let me reassure you now, this will not be because I like to be the centre of attention or talk about myself. I am always more than happy and willing to talk about anything else. You just have to start that anything, for, I will not know of anything else unless you want me to tell you what is happening on my Facebook feed.

Realistically, I will not be as well as I am now, until the new year. I might be pleasantly surprised, but the odds for that, are not in my favour.

Other

Last time I had a transplant, I sent text updates for major transplant developments. If you wish to receive these again, do let me know.

So, all that is left to say is thank you. I cannot emphasise this enough, but you are all appreciated. I know I have upset people in the past for not showing or saying this enough, but, most the time I think I have. I’m quite forgetful don’t you know.

Emma 

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It’s Time

How does one spend their last 30 minutes of comfort in their flat before walking out and starting what is going to be one hell of a double stem cell transplant of an ordeal? Writing a self indulgent blog of course and eating a bowl of multi grain porridge. I can multi task. 

And so, after months and months and quadruple that of treatment and mental preparation, I am finally here, at the point of no return. Well, unless I get there and they decide I have a bug, but I am not really thinking about that. Unless typing it is thinking about it, but I only have 28 minutes, so it is best to not delve any deeper into my paranoid fear.

I do not feel ready to leave my warm and cosy flat, but I never really anticipated to. I am ready for things to progress, as horrible as that progression is going to be. The last week, in particular had been quite difficult. Yesterday, I could no stand the warm and heartfelt reminders that it was my last day of freedom, that were coming through my phone, so I turned it off. I didn’t actually turn it off, I just switched it to aeroplane mode so I could still play games.

Filling up my good cylinder in readiness for today has been a task. A fun task, but also one fraught with emotion as I fought fatigue and melancholy. A lot of melancholy. Until last Monday, my social activity had destracted me so much, that I had almost forgotten that April Fool’s was looming.

I will not least everything I have done this past month, for it may sound churlish. It’s included the theatre, the seaside, food, film and Harry Potter. All rather grand and highly medicinal. Last night, at my request, I stayed in, made roast chicken with rice and sweetcorn and watched ‘batteries not included’. That’s not a grammatical error, that’s how they write it. I know I will not be able to do all that for a long wee while and that is where my melancholy takes hold, but I must be strong. I have to be strong when I know that it’ll be a while before I see this in the morning time again;

  

But that is my life and I have to be a grown up about that don’t I?

I now have 11 minutes, so I should probably wrap this up because I expect I am going to need all my energy and focus to stop me from crying in front of Housemate.

I’ll see you in a bit. In the meantime, why don’t you look at some fun?

   

         

BRING IT ON.

EJB x

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