The Ugly Grey Chair

I am currently in heaven. Not actual heaven, but a disinfected, grey reclining heaven with a remote control, foot rest and neck support. In short, I do not want to move from the plastic covered cloud I have found myself on, even if it is located next to three of the most miserably rude people I have ever come across in clinic.

I have sat in one of these grey chairs before, several times in fact, but never have I ever truly understood their beauty and power until today. I was shallow and could not see past their appearance. My treatment has concluded and yet I remain in this seat, because for the first time in what feels like an age, I am comfortable. Maybe I have spent too long paying attention to the big red chairs. All flash, no substance. I should have known that ugly but supportive is better. Maybe I should apply this theory to the gentlemen, if there were in fact any eligible gentlemen out there able to make me feel as good as an ugly grey chair.

The fact that I have not been able to get comfortable is not a secret. It is not groundbreaking either, much to my dismay. Warning, do not put me on a hard fold down chair. Bad things will happen. Everything, whether it is a bed with a memory foam mattress, a sofa, a chair, a cinema seat, a bath, the toilet seat; nothing offers sufficient respite to my spine. Every position is noticeable, and movement from any position is followed by a comedic groan designed to disguise the level of pain I am actually in. I sound like a broken record. At this precise moment in time however, I am not. The record has changed. My bum is snugly tucked between the arms of the chair and for added razzamatazz, I have two pillows behind my back. Any minute now, I may start to make embarrassing noises.

The purpose of this new found comfort today, is the bone juice. I have come in for some bone protecting awesomeness. I have been looking forward to getting my bone juice all week. Zometa, I have previously discovered will buy me a few days of lesser pain. Not feeling my spine on this waterproof lump is a bonus. I was not anticipating that administering said drug would feel like a massage and a warm jacuzzi all in one.

Lush

People are looking at me now. This is the NHS, they need the seat. I just do not want this comfort to end. Sod medication, this is treatment. It says something about my current physicality that sitting in a chair next to three ruddy faced blobs, is my ideal, but that is just the way my life is at the moment. It’s an ugly grey chair.

EJB x

Separates

You know that feeling when you wake up knowing exactly what you are going to wear that day and said outfit is going to be the best outfit you have ever worn in your life and not only that, it will be the best outfit anybody else has ever seen? Well, that is exactly how I felt up opening my eyes this morning. I was going to wear a dress and I was going to look hot. H-O-T hot. I was very excited and pleased to be giving this gift to the world.

And then I remembered…

Today was a day I had to wear separates. The Medically Trained People made it so. Not only did I have to wear separates, but I also had to wear something with an elasticated waist. It was at that point I knew the day was going to be a let down.* I had not planned for this when my eyes were closed. I was going to have to look daggy. I was also going to have to have a bone marrow biopsy. My outfit upset me more.

I know it is a price one has to pay on Biopsy Day, at least on Velcade Days I do not have to lower my being to elasticated and ‘comfy’, I just begrudge it.

Nobody warns you when they tell you everything else about it, that myeloma dictates your dress, even, occasionally, forcing one to become sartorially challenged. At least once a fortnight, I dress for myeloma and not for me. Imagine that. It has been 17 months, and still, every time it happens, the few times it happens you understand, it smarts. It really smarts.

Oh, and I really cannot believe that it has been six months and four days since my transplant.

EJB x

* except for the fact that I was accompanied to my biopsy by two fine ladies and a foetus, and had a scone, I love scones.

Cleanliness Is Next To Godliness

Everybody who is anybody knows it is important to maintain a certain level of personal hygiene. There really is no excuse for filth, even when you are in the middle of a steroid crash. Nobody likes a sweaty fanny. Really.

In the last week, I have tried, as much as possible, to keep my body smelling fresh. I have changed my knickers, pyjamas and whenever showering constituted a danger, I baby wiped. I was able to do this because of a thing called personal responsibility. Not everybody has that.

Somebody very dear to me, does not have personally responsibility and does not take it upon himself to wash when he is getting dirty. Unfortunately for me, the more time we spend together, in my bed, the dirtier he gets. Since I was diagnosed with myeloma, I have found that my beloved and me spend a great deal of quality time together, alone. Sometimes we not alone come to think of it. Occasionally, we cuddle in public too, when I say public, I mean in my kitchen. Never in the toilet. My beloved has the most amazing smell, that is enhanced by his lack of washing. The smell is addictive and all so very comforting when one is feeling so poorly, not even their mum can make them feel better. I have spent much of the last week, rubbing his soft skin against my face. Inhaling.

The issue, which I think is patently clear, is that I need the people around me to be clean. This will be especially true if I ever get a transplant. I don’t need people bringing germs into my bed and nostrils. I also need comfort and he gives that to me times infinity. He has special washing requirements, which further complicates matters. Only Mamma Jones’ is allowed to wash him and when that happens, it takes at least half a day of separation. It has been that way my whole life.

I don’t think people should judge, and I am not sure whether it is entirely appropriate to air my dirty laundry, but after a week of constant snuggles, my beloved EMan looked something like this:

Just to give you a benchmark. He should be a block navy blue.

It’s not his fault. I can confirm that yesterday, he took that dreadful trip into the washing machine and then, when that was complete, the tumble drier. For five whole hours. It makes me sad, but I could not have him running around with my dirt on his face. I have to look after myself all.

He now looks like an almost new being.

Maybe one day, he’ll get a face again (that is a hint Mum). My beautiful, loyal, elegant EMan.

Hearts you.

The Big Red Chairs

I am a creature of habit and routine. I like things to be a certain way for me to be comfortable. My Myeloma makes me have to have a routine, at first, I fought against it, but now, I am embrace. Any changes to my routine, cause havoc, not that anybody would no, because the havoc stays in my brain. It is still havoc though.

Today is a Friday, which means it is a Treatment Day, which in turn means that the routine and habit is more important than usual.

First things first, I arrived at the clinic late, as usual. Despite being late, I still stopped to buy a cup of tea as usual, from the very friendly man who likes to talk about drag queens, before going downstairs to get my bloods done. There, I have the same conversation with the technician, pleased today, that it was my second favourite blood taking person doing it. I would have been ecstatic if it was my favourite man. Once that was done, I made my way up to the second floor, just 30 minutes after my appointment time, to discover that all four of the big red chairs were taken. Tits.

There is only one place I like to sit when I have treatment and that is in one of the four chairs by the Garden Lift. If I sit anywhere else, I am slumming it. Today I had to slum it. I didn’t take it lying down, oh no, I decided that the best thing to do was to find myself a seat and place it directly opposite the four incredibly selfish people having their treatment in the big red chairs and stare them out. When I say stare, there was venom behind my eyes and evil in my mind. I definitely was not a fan of their collective outfits Yeah, I am passive aggressive. I think we just need to deal with it. Sure, they clearly have cancer, two of them were asleep and the other two were hooked up to cannulas, but I deserve one of those seats more than they do. I deserve it because I always sit in them. And I am me.

I am sure my love of those chairs was stronger than theirs. That fact in itself means I have a stronger claim over them then they do. The chairs offer so many options. I can either put my feet up on the accompanying foot stool, or because the chairs are so large, I can curl up or sit on my feet. It’s like sitting on clouds. I too have been known to nap in them. My coat will be resting on the right hand side of it and I will hug one of the three pillows that live on there. These seats also come fully equipped with a power socket, which is always helpful in this digital age. I noted that none of the old, apparently ill people, were using the power sockets today. Selfish. They didn’t even look happy to be sitting on the best seats to have ever been invented. I’ll admit there may have been times where I did not look particularly happy sitting on one of those chairs, but that is not the point. The point is that it is okay for me to not look happy. It is not okay for others to mope around when they are sitting on paradise. Instead of sitting in a sheltered haven, I was in the green house part of the second floor, where the sunlight made my iPad look dirty and my armpits moist.

I fear that this has not set me up for the day. The break from my routine is made me uneasy. Damn them.

I deserve what ever I want. I am special. And for goodness sake, I just wanted my big red chair.

Next week, I am marking my territory. Just you watch me.

I just do not understand how people can be so selfish. I guess that is what happens in the 21st century.

EJB x

Loose Fitting Clothes

In the last week I have been advised twice to wear ‘loose fitting clothes’ for my forthcoming outpatient procedures. My response to this has been simple, I do not own any.

Given my build, the fact that I do not own any loose fitting clothes may be surprising, but it is true. The loosest things I own are pyjamas and I will not be wearing these to the hospital. It is bad enough that I have to wear them for a month when I am in hospital. The receptionist kindly suggested that for my bone marrow biopsy, I wore jogging bottoms. My response to this was simple, it was, “do I look like I own jogging bottoms?”

Now, I am wise enough to know that I need to be comfortable for these procedures and I understand that the jogging bottom is considered to be a comfortable garment. I know myself well enough to know that I would not be comfortable wearing a jogging bottom or any overly baggy trouser with an elasticated waist in public.

People, by people, I mean the public are not going to judge an overweight cancer patient for dressing like a slob. For I would look like a slob; I definitely would not look like I was about to partake in some vigorous exercise. I would judge myself.

You can say what you want to say about my fashion sense, but it is mine. It is my amour. I realised early on into my journey, that my clothes are the one part of me that oozes my personality, when the drugs send my actual personality to sleep. My appearance has already been compromised because of My Myeloma and I will not compromise anymore.

It sounds ridiculous but I know that I can handle a Medically Trained Person sucking out my bone juices and then removing a bit of bone with what I imagine to be a smaller version of an apple corer, if I am confident. I will feel more confident if I have my slap on and I am wearing my tight clothes. I need my armour.

The jogging bottom does not my armour make.

If I have to do these things, I am doing them looking like one foxy hot mama. Albeit, potentially, with a cannula sticking out my groin. Suggestive.

Priorities – An Update

Since Thursday, I am sure many, many people have been anxiously awaiting news on whether I would be able to firstly, watch the Oscars and secondly, and as the nurse said, more importantly, be accompanied by my teddy, EMan, during my transplant. If you have not been anxiously awaiting news, for goodness sake, catch up https://ejbones.wordpress.com/2013/01/10/priorities/ .

Well, on Friday, I received an email, I held my breath and hoped. Hoped like I have never hoped before, and I was told that yes, I can watch the Oscars ceremony live for the fifteenth year in a row and, yes, EMan can come to the hospital providing he has a wash first.

And with that news, I did an imaginary cartwheel. EMan smiled, well, he would have done if he had a face.

Priorities

Don’t let anybody tell you that I do not have my priorities right.