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 The Notice Board

Way back in 2013, I spent 11 days of my life in a room of great bleakness. It is difficult to conjure up the mental differences between slight and great bleakness, but  for me it was a room that encompasses everything that was bad with this word. If only it were the interior design of that room that was a problem. The centrepiece, if such a room could be deemed to have a centrepiece that was not its bed on wheels, was a grey notice board with three signs to the right hand side of the board. The biggest sign told me how to wash my hands properly (but I think I moved it there) , the second poster told me if and why I would be eligible for the Patient Transport Service and finally, there was a leaflet, that if you looked really hard at, you could see the 12pt font printed list of all the additional fatty foods I could order from from the canteen due to my not eating right and the neutropenia. I still cannot get over the fact that eating badly is considered to be better for you than a piece of fruit in any situation, but there it is. The PTS sign had some late 90s clipart on in and somebody had definitely used the ‘Tools’ section on MS Word on all the documents.  I hated that notice board. I have also realised that I still hate that notice board. 

The closer I got to April’s transplant, the most frantic I become about ensuring that I would never have to look at that grey notice board again or it’s posters. One of those things could not be achieved because all hospitals all over the land, have posters telling visitors how to wash their hands, and I currently have my sight and can pee, so put two and two together. Developing a board that would be nice to look at became almost integral to my planning. I mentioned in to friends and the importance of of was mentioned in my counselling sessions.

All in all, I think I visited four art gallery shops, the BFI shop, two Boot’s Pharmacists for printing purposes and Amazon. I had mini pegs, string two different styles of pins and just under 15 postcards to accompany my ten or so photographs. I was going to be the best notice board that had ever been nailed to a wall. 

And then, realistically being £20 lighter, it turned out that I did not need it during Transplant Number 1. I am not kidding when I say that I was slightly disappointed by this. I was disappointed that I was not become sick enough to to be admitted to hospital to see my notice board come to fruition. 

Unlike the majority of you folks out there, I realised that I would very soon be given the opportunity that did not involve committing a crime or other institutionalisation, to be in a room with a notice board. I hoped and I waited and I packed my ‘art’ with wanting. Then last Wednesay happened, I was admitted. With breath that was baited, I was taken to Room 10. I knew the word ‘room’ meant I would be in my own room, but in the few short pushes in the wheelchair I closed my eyes and touched EMan’s paw. It worked, and  because when the door opened, I saw not a notice board but a white board. I’m an artist of many a media, and just as soon as I received confirmation from three different Medically Trained People that the board was not there for medicinal reasons, it was go go. I was ready for my Art.  Given the change in background, Mamma Jones had to go out and buy scissors and tape, and given the passing of time, I misplaced a few photographs and postcards. 

In the end, not all of my support network was represented, and I had to explain to far too many people that some of the photos were not of my own (presumably failed) wedding, but it worked. I had directed a little something of my own to make what was a 7 night stay in hospital, that very bit not bearable.

  

And yes, it had fairy lights too.

And double yes, it’s back to being a white board.

EJB x

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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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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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Home Sweet Home

Duvet, carpet, double bed, uninterrupted nighttime sleep, a Bischon Frise alarm clock, countryside quality Internet, an actual television, colour and comfort. I must be at home. Home, sweet home.

I like to think I have two homes. It’s not because I am loaded. It’s because I am spoilt. Yesterday, I got to visit both.

I did not want to go to my flat, because that space, that life, needs to be saved for a time when I can talk to Housemate without sweating profusely with an overwhelming need to nap. In short, my flat is a place for me to aspire. It is my target. I was not there yesterday. I’m still a shell. Circumstance dictated that I temporarily forgot it was my target, because I needed to pick up some pants and crafts.

As my taxi pulled up outside my flat, I had to swallow, for I was greeted by Mamma Jones and a vision in green. I was then greatly relieved to discover that Bruce remembered me. Two and a half weeks in the life of a puppy is a long time you know.

After a quick change, Mamma Jones and I busted a move and headed back to the Fens, to her house. Here is an aside; I challenge anybody who has spent over 10 days lying down, to feel comfortable sitting upright in a car for two hours. It cannot be done. You will fidget. Once we reached the Yellow House, I again found myself having to swallow, because of my welcome home posse, this time, complete with balloons and Sellotape. It was quite something.

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And I realised then, that I was actually home. I could relax. No more hospital, not for now at least. I may spend the next 100 days hoping that I do not fall into the 5-10% of transplant patients who get readmitted to hospital. We do not want that, we want the NHS to save some green. After 18 days away from my space, my comfort, it felt rather nice to be back in it. Exhausting and emotional, but nice. Until I escaped, I had no idea how sick of the hospital I was. I was sick of the scenery. As some would say when they cannot think of anything else to say, a change is as good as a rest. For me, I think it was, but that change will now be followed by rest. Lots of rest. I have been told I need to give in to it and I am going to try to. If last night is anything to go by, I’ll be fine on that front.

I slept for ten hours straight. I believe that sort of thing can happen at home.

EJB x

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Checking Out

Yesterday, the Senior Medically Trained People told me that I would be discharged by 15:00hrs. A person who had yet to complete her training told me that all being well, I should be out by 11:00hrs. Her estimate was supported by an Angel. I knew which time I would prefer, but I decided that patience was going to have to be a virtue when it came to me departing Room 7 on thirteenth floor of University College Hospital.

And boy did I need patience.

This morning, I woke up at 07:30hrs, relieved that two hours earlier my temperature had fallen to 37.0. My excitement was palpable. I just wanted to get home. I also wanted to have a shower, but there was no point in me doing that until my PICC line had been removed.

Based on what I had been told on Wednesday and yesterday, I needed to wait to see the doctors, my CNS, have my line removed and get my drugs. The latter, I was also told, were ready for me last night.

At 09:40hrs, I saw the consultant during her rounds and I was informed that I could go home. Fine. As they left five minutes later, the ward sister informed me that she would return in five minutes to get things sorted.

At 11:00hrs she reappeared to tell me that she would contact my CNS, confirm when I next needed to be in and check my blood results to confirm I did not need anything else. I said that 30 minutes before she came in, a Junior Senior Medically Trained Person had informed me of my blood results and said I would need to take some additional injections to boost my blood at home. The nurse was pleased with the news, especially when I told her I had already been in touch with my CNS and that I thought I had arranged having a blood test done in another hospital next week. The nurse left.

At 11:30hrs, I saw my CNS. Got all the information I needed and collected some blood forms. Done.

By midday, I was crying, because I literally had nothing to do, I could do nothing, until I was seen by the nurses. I may not have been doing anything for the last two weeks, but today, I had somewhere to go. Every minute dragged and dragged some more. I just wanted to get dressed. Trying to guess what time Mamma Jones should reach London Town was also proving stressful. All seemed well however because a nurse entered to give me my afternoon’s drugs and said they’d be with me in an hour. As I had a lot of time to think, I asked if they could also shave off my remaining hair.

At 13:15hrs a different nurse came in my room and I had what can only be described as a paddy, which embarrassed me because the nurse is very nice. We had a nice chat the other night and he made me think twice about a wish of mine to holiday in Moscow. Not at the moment. Anyway, he informed me that they would be with me in an hour, to shave my head and remove my line. My additional drugs had not arrived yet, so he added that even if they had removed my line, I wouldn’t be able to go anywhere. I explained that I could at least shower. I just wanted to leave.

It was time for show tunes.

I phoned some people and complained. I do not know how they could be so relaxed about it. I guess it is not their life is it? When somebody told me to be patient or relax, I got angry. Nobody could possibly understand the torture that is waiting to leave hospital.

At 14:40hrs, the nice male nurse returned. He removed my PICC, which was effortless and thankfully, painless. He then shaved my head again, to try and get off as much of the hair as one can without a Bic razor. It was at this time, I found out that my blood results had shot right up and I no longer required the additional injections. Brilliant. So I would be leaving soon, yes?

By 15:25hrs, I had showered, dressed and made myself look semi normal. It was just about waiting for the drugs. I sat. I waited. I carrie on listening to show tunes.

At 16:30hrs, with my wig on and my drugs in my bag, I walked out the main entrance and into a black cab.

I’m going home.

I’m actually going home.

I believe the customary thing to say right now is that I have done it. Bugger.

EJB x

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Turning The Corner

The Medically Trained People, last Friday, told me that I was about to turn the corner. I did not believe them, not really, and even when I did allow there to be a flicker of hope that I would cease to produce green lava from my bum and mouth, I could not envisage what my world looked like around that corner.

On Saturday, my bloods went up, but I still felt poorly. As I struggled to comprehend what my ‘worst’ was going to look like, I began to struggle with what my ‘better’ would mean. On Sunday, my bloods went up and then some, and I was told that based on an increase of my neutrophils from 0.02 to 0.2, the Medically Trained People thought I would be able to go home later in the week. Later in the week? But I am supposed to be in here for three to four weeks, not two.

And then strangely, I started to feel better.

On Sunday, I ate. I did not eat a lot, but I ate. I also had a blood transfusion, just thought I would slip that in because I had never had a blood transfusion before. Somebody else’s blood is in my body. Wowser. That’s Dad Science. On Monday, I was able to leave my room. Until I left my room, I had failed to realised that I had not left it for a week. That thought was quite overwhelming. Unfortunately for me on Monday, I also had to shave off my hair. I am bald once again, and this time, the patches of scalp are far more noticeable than they were before.

On Tuesday, I received my last bag of fluids, because the Medically Trained People had decided that I was now able to take my own fluids, without immediately disposing of them, for the diarrhoea and vomit stopped on Monday.

On Wednesday, I was told that I would be going home on Thursday, but probably Friday on Day+16. Not too shabby. Today, I had the magically sound of a plop instead of a shower when I visited the water closet.

All done and dusted right? Think again. We’re talking about My Myeloma here. Things are never that straightforward.

I know I am lucky to have gotten over the worst of this so quickly, and I am fortunate to be able to look forward to going home, but it all feels so strange. Beyond strange. If I have described my last 11 and a half months as twilight, I do not know what this is…. This week, I have no idea where Emma has gone, because in her place is somebody who does not know how they feel, what they want, and dare I say it, who they are. And don’t dare to try and answer those questions for me, because I am likely to shower you with expletives. I get the impression from people, that they think because the shitting is over, I should be fine, back to normal and so should my responsibilities be. A least, that is how some people have made me feel, and it almost feels like a set back. I can categorically say, with all certainty, that this is not the case. I am not back to normal. I am not healthy. I am not full of energy, the opposite is true in fact. I have not spent the last four days on my room plotting and planning my life on the outside, because I do not have the brain capacity to do that. I am fuzzy.

I have spent 16 days away from home, dressed in pyjamas, without any privacy, and all I want right now is an opportunity to be myself, in my own time. I want to wear my own clothes, I want to put my lipstick on and have a timetable of my own making, as much as I can, and not live in one created by a certain NHS trust. I want to get to midday, without having sen at least nine people, whilst I am in a state of undress. They prepare you for all the physical side effects, but they don’t really prepare you for this, not really. Well, I suppose I am fortunate, that as well as being in a place where they give me multiple bags of fluids, blood transfusions and so many drugs I hallucinated, I am also in a place that offers counselling, but that is after the fact. I am not ashamed to admit that I need counselling right now. I have been, correct, I am in the middle of a journey and I do not know what it means yet. We will not know about its success for at least three months. I am desperately trying to figure this all out, but I don’t have the energy for it. If a problem presents itself right now, I do not feel equipped to deal with it, and it would probably result in me crying on my bed or literally pulling my hair out.

Part of me feels like I need to give into it (which I do), the other part wants to go out and run down Tottenham Court Road with her tits flapping every which way, telling the world that I just had a transplant. In the last few weeks, but more so this week, my emotions have been all over the place. Happy, sad, lonely, suffocated, misunderstood, mad, angry, apathetic, hungry, unique. It goes on, and on, but one thing remains, there is one constant, no matter what my mood, I am always right. Always.

I have just had a transplant for goodness sake. I am allowed to be right.

The toilet issues, stomach cramps, oral thrush, sore throat and sleep were difficult, but this new world, is still difficult. Everybody in my Network needs to understand that and let this play out. I am going to scream and shout and let it all out, and I am told by the Medically Trained Professionals that this is perfectly normal. I guess, that while I have turned one corner, I probably have a few more to go before I feel like I can down a pint whilst baking a cake.

My immediate recovery may have been speedy, but there is still a way to go yet. Don’t go forgetting that. Disappointed? Try living my life.

EJB x

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Preparation V

I did not complete my to do list, but as a wise man once said, that does not matter today. My bag is packed, EMan is in a protective case, my work laptop has been put away, my bed is made. I guess this means I am prepared. I will be ready when I shut my front door.

I am going in for my transplant today. I am leaving my flat, leaving my bed, leaving Yoda and Bruce and my television. Today is a day.

I imagine, I may feel blue a few times over the next few weeks… It’s a given. For when that does happen, my preparation also included all of this; my cylinder is full. For everybody who did a little something towards that, I thank you. Hell, I love you.

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The next few weeks are all about me.

Game on.

Now, Emma Jane, stop crying.

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Nineteen

At 11:25hrs this morning, I received a call from the hospital informing me that my paraprotein had reduced by four, below the halfway mark to 19. Nineteen.

Thank all the swear words for that.

I now get to have a Christmas at home with my family and I get to keep what is left of my hair for a little bit longer. Knowing that at some point in the new year, I will undergo a high dose of chemotherapy (aka The Diet), I have decided to indulge this Christmas. Cream can now be yogurt to me.

I could write reams and reams about how relieved and happy I am about the news I received this morning, but I have decided to get up and enjoy my day instead. I have chutney and scones to make.

Many thanks for all the messages this morning. I think my body heard what it had to do.

EJB x

In case you thought this was all over, I should probably warn you that I get to go through all of this again in three weeks time, just without the possibility of spending my Christmas in a hospital bed with T13’s Angels. That will be 2013’s challenge.

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Lockdown🔒

I am used to a weekend’s lockdown. Back when I was a healthy person, I regularly had to endure a weekend’s lockdown for work and I embraced these times. It was an excuse to rest and bake. These days, now I am not a healthy person, I have a lot of time to rest and not enough time to bake. Annoyingly, I have the energy today to not rest, but my immune system is low, very low and is likely to remain so until Monday. Thus, for health reasons, and because it was this time in the last cycle I caught my cold, I am staying in the flat all weekend and sick people are strictly prohibited from entering.

What to do then? Hmmm. I just cooked a friend lunch and another friend is visiting shortly. Earlier, I did the dishes I had not done for two days because I did not have the energy to do them. I have put the recycling out. I have planned all my meals. I have produced a stool. Maybe it is time to finally conquer the knitting. I could bake whilst listening to Magic FM. I will probably wax my beard. I am most definitely going to watch a film or five, intermixed with some racy Scandinavian crime drama. I may sleep. How many hours is that? ⏳⌛⏳⌛

I bet you are jealous of my life.

All I know, is that I am going to be seeing a lot of the following over the next 48 hours…

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Who am I kidding? Of course you are jealous.

EJB x

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