Tag Archives: skin

Feel The Burn

On the first day of radiotherapy, way back when on 21 August, I was told that the treatment may cause some ‘skin irritation’. I was also told of this ‘skin irritation’ when I went in the week before my treatment starting for my planning and when I met with the Medically Trained Person who decided to give me the treatment in the first place. I did not heed the warnings. I mean really, what is a bit of dry skin when one faces the daily challenge of bone pain, whilst taking a hefty dose of chemotherapies?

On 21 August I was given a small tube of aqueous cream to apply to my back. At the time, I thought that the request was quite laughable because I could not touch the area of my back where the cream was intended. Reclaiming the ability to touch my lower back without wincing was one of the reasons I was there in the first place. I got the impression that this was lost on the radiographers. Given this slight practical issue, which I was not going to ask somebody else to do for me, and the fact that I did not experience any ‘skin irritation’ when I had radiotherapy in October 2012, I took an educated risk and decided not to apply the cream. As some of you will be aware, I spent much of the radiotherapy era vomiting and feeling less than sexually desirable, so I had little energy to consider whether the skin on my back was turning to leather.

You might have guessed the outcome of this already, but with the beauty of hindsight, I can say that my decision was a mistake.

I made a big mistake. It is an itchy, red, sore and flakey mistake, covering my lumbar region, which decided to reveal itself four weeks after my treatment ended.

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See?

It revealed itself at a time when I could not seek immediate medical assistance, so I wisely decided to self diagnose the affliction on the Internet . After a quick panic stricken detour via images of plasmacytoma, I concluded that I had a radiotherapy burn made worse by somebody who shall remain nameless, accidentally scratching the wound in question. Despite my sound medical knowledge, as soon as was practical, I sought medical advice. That was yesterday.

Yesterday, contrary to my informed self diagnosis, I was asked to seek immediate medical intervention because the symptoms sounded like shingles. To keep you up to speed on what one should avoid post transplant, a diagnosis of shingles or it’s sister chicken pox are right up there in the panic inducing bracket.

I consequentially spent two hours yesterday feeling like a leper. My visit to the hospital had to be prearranged so I could be taken straight to a private room to protect the ‘transplant patients’. I wanted to stamp my feet a little at this statement and tell the Medically Trained Person who arranged my visit that I too was a transplant patient and was all to aware of how risky shingles could be to others as well as myself. I went to the cinema instead.

So I did not alarm anybody, as in other patients and their family members waiting patiently for treatment, I had to whisper twice in reception before I was quarantined into a dark room watching Jeremy Kyle, desperate for a cup of water because I put too much chilli sauce on my steamed bun prior to my arrival at the hospital. For this reason and my potentially contagious state, I desperately tried to avoid kissing a patient’s wife but failed. It was most stressful. Thankfully, after a quick inspection, a Medically Trained Person concluded that I do not have the shingles. I have a radiotherapy burn made worse by somebody who shall remain nameless accidentally scratching it. The area was described as ‘angry’.

It was an experience almost as exciting as the time they thought I had herpes.

An hour later, I left the building with antihistamines (aka the best sleeping pill ever), menthol aqueous cream and emergency antibiotics should my back become infected. I still cannot fully reach the wound without feeling like my back will snap, so I suspect for the next week at least, I’ll be sporting a permanent grease stain and dirtying my bed sheets.

The lesson I take from this latest myeloma treat is that just when I thought I knew everything there was to know and had experienced everything I could experience, something else comes and bites me almost in my arse. And the panic ensued…

EJB x

P.S. I do not understand why the aqueous cream has to be menthol flavoured. It’s zingy.

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Naked!

I was once shy.

I should clarfify this point, because I imagine those of you who know me and are reading this, would disagree that I have ever been ‘shy’. I was incredibly shy about all issues relating to my body.* My body is fat, hairy, covered in old stretch marks and don’t even get me started on my breasts. I have been in constant battle with my body image my entire adult life, strongly influenced by the kind boys at school, who used to call me ‘pork chop’ or made me put a pencil under my boob to see if it passed the droopy test (I didn’t). In short, there has been a distinct lack of self confidence.

And then on 14 August, all that changed. I was diagnosed with multiple myeloma and I was in a hospital. On my first night in hospital, I had to have an ECG. By the time they came round to do my ECG, something I had only heard about before on ER, I was in my pyjamas and hooked up to fluids via a cannula. That ECG was a quick introduction to hospital life and a lesson of how your body parts are not primarily sexual objects. During the ECG I asked if I could keep my bra on, the male nursing assistant said yes, which I was incredibly relieved about. I did not want to whip my baps out to a complete stranger. It transpired however, that I could not have my ECG with my bra on, nor my top. I slowly, degradingly, had to remove my clothes, where at the end of it, my right boob was flopping out and my t-shirt was over my head, with my body covered in stickers. I remember crying during the whole thing.

As my thirteen night stay progressed, I had to be washed by mother, have my legs shaved by my sister, had an Echo, got stuck on a commode and whilst under general anaesthetic, somebody, I assume a Medically Trained Person, inserted a catheter up my whatssit.

All false shame I had about my body, disappeared. It had to.

I did not realise just how much it had disappeared until I had the ECG last week. When I was asked to remove all clothes on my top half, there were no feelings of modesty or apprehension, I just took off my jumper, shirt and bra and let my two little friends hang right out. I suspected a change when I was at Mamma Jones’ house for Christmas. I would allow the females in my family to see me in a state of undress and think nothing of it, something I know I would not have done before. I do not come from a naked household. On more than one occasion, I failed to shut the bathroom door.

I have been liberated.

I am not quite so liberated in the flat, because I am a considerate person. I acknowledge that it would not be fair for Housemate; I don’t think he needs the image of my naked form in his head all day long. Although I am liberated, I am aware that my form is not for everyone, and you know, there is something called decorum. That said, I do occasionally get changed with my door open. I just forget. Sometimes, I let my boobies hang loose under my pjs whilst making a cup of tea. Other times, I use my arm as a shelf, depending on who is in the house. Thoughtful.

I guess, when you have to routinely talk about your bits and pieces, and show them, all embarrassment disappears. If I continued to be embarrassed, I could only imagine how worked up I would get, and I have more important things to fret over. When everyday is a battle to survive, what your body looks like, shouldn’t and doesn’t matter anymore.**

To be clear, I am not yet a nudist, and I do not think I will ever be the person who walks around the swimming pool changing room with their lady garden on show, but I do hope, that My Myeloma has enabled me to be more comfortable in my own skin. As bumpy and lumpy, with a texture of orange peel as it is, my body is battling something horrific and if it succeeds, I do not think that is something to be ashamed of anymore.

It does not hurt to try and see the positive side of My Myeloma, and this new found acceptance of my physical appearance is evidence of that.

Embrace it.

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EJB x

* Toilet talk with certain friends and Big Sister is an exception to this rule. Poo has always been fun.

** I am full of contradictions. I will probably have to remind myself of this when it comes to the big head shaving.

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So Long, Velcade

Today, I am truly, truly thankful that on Thursday, I received my last ever dose of Velcade aka Cillit Bang.

I grateful that I have come away after 24 injections of the stuff with only minor side effects. I can still do up my buttons, yes. Buttons. I am relieved that my neuropathy is now mild, with my ability to get a dead hand or arm now only slightly easy. I can now sit still, and for eighty percent of the time, I will not get cramp or pins and needles on the lefthand side of my body. I trust that in time, this will disappear completely. I still get dizzy on occasion (2-3 times a week as the questionnaire goes), and I hope too that this will disappear.

The above is the serious stuff, though it is not the main reason I am thankful today.

Today, the reason I am pleased that I am no longer going to be injected with this bleach-like-medicine, is because I know that the inflammations and marks currently irritating my waistband will go away and they are not going to be joined by more inflammations and marks in two weeks time. This week, the Velcade must have known our time was up and felt the need to leaving a parting gift. It has decided to replicate mosquito bites on my stomach. I mean, the big mean sort of mosquito thirsty for your blood. The stretch marks don’t help. I should not have indulged quite so much at Christmas. Imagine walking in a pair of jeans with an inflamed, red, itchy and dry stretch mark on your stomach, if you can’t imagine it, find a mosquito and eat some cream… It is far from pleasant, it is irritating and it hurts. It does not hurt like a fracture, but there is quite a sting to it. See?

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In the grand scheme of things, the above is minor. I know that, but it is the one thing today that has really made me think about My Myeloma. It’s the myeloma’s fault that is on my stomach along with 21 other blobs*. Fortunately, I have just whacked a healthy lashing of Lucas’ Papaw Ointment on my stomach all the way from Down Under, which I hope will work where the nappy rash ointment has not.

Let us all hope I do not scratch it in my sleep. That would not do at all.

EJB x

* In case you are worried about continuity, 22 of my 24 injections were on my stomach. The other two were on my arm.

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