Tag Archives: A&E

Some Festive Cheer

It is Christmas Eve. Christmas Eve happens to be one of the best days of the year, if like me, you happen to love Christmas. I am Kevin McCallister, such is my love of Christmas, it’s traditions and the pure wonder that can be a nicely decorated Christmas tree. This Christmas, more than the last two I have with the disease they call myeloma, I have planned and longed for a ‘normal’ Christmas. By ‘normal’ I mean ‘special’. I had meticulously planned something so much better than the 12 Days of Christmas, so that I could enjoy every single moment of Christmas commercialism. I wanted to gorge on Bing Crosby and Jimmy Stewart until the leftover meat fertilises next year’s tomatoes.

By today, according to my plan, all I should be doing is some elective baking, some constant film watching and some smiling. That is not what I will be doing today. Instead, I have all my presents to wrap, one present to buy and copious amounts of rest to fit in where and wherever I can find it. The need for rest is making me act like Scrooge at the beginning of the Muppet’s Christmas Carol. I do not have the time for it, and all it does is remind me what I was supposed to do.

The reason for my childish want of a normal Christmas will become more apparent as 2015 progresses.

I should have known that my plans would have gone wrong. I should have known that instead of coming back to my parents’ house early to enjoy my nieces’ festive excitement, I would be coming home to my parents’ house to get into bed, via A&E with some antibiotics. I have been a good girl this year; I did not need coal. I have been unwell every Christmas since my diagnosis, so I suppose I am just carrying on with the new tradition.

Now, I would be the first person to put my hands up in the air and wave them around to confirm that I have been displaying the sort of behaviour that shows that I care very much about Christmas and the more I care, the more option I give the myeloma to deviate from it.

Over the last few weeks I have been slowly tying myself in emotional knots in festive anticipation. I have a wonderful example of this. Much to his dismay, and my own surprise, Housemate recently incurred my mighty festive wrath after showed some initiative by taking the Christmas tree out of it’s box and put some fairy lights on it whilst I was out galavanting at 16:00hrs one afternoon. My initial reaction and then the one 24 hours after the deed was done, were ones that some, if they were being polite, could describe as ‘an overreaction’. As I concluded the following day, there is a lot of emotion connected to that Christmas tree. I do not want to be morbid, so I shall not type why it upset me, but if you add a failed bone marrow transplant to future Christmases, you’ll get somewhere near my reasons for wanting a saccharine Christmas.

I do tell myself that I have to be stronger and that I should not complain about my situation. Indeed, I do not want to complain about my situation. Myeloma and Christmas just do not go together and I know that despite what will follow in this blog, there are other families who will feel more pain than I this Christmas. To them, I apologise for my self indulgence…

That said, as it is Christmas Eve, I want to find the festive cheer that left my loins five days ago. In the lead up to Christmas I dragged myself North, South, East and West in order to fully embrace, as fully as my body would allow, the festive good times. There was a voice in the back of my head as I typed the last sentence telling me that I just lied to you. I should have added that as much as I wanted to do everything I did in the lead up, I knew that doing it all would be bad for my body especially when my hospital added five appointments last week. The bespectacled voice also says I probably should have shown more strength and stayed in when I needed to and I should have worried a little bit less about letting people down and had the confidence to think my friends would understand that me needing to stay in and lie on my sofa is not a reflection of my love for them, but is in actual fact, much needed medicine that would have got me to Christmas Day without a temperature of 38.6.

Alas, whilst I will still make it to Christmas Day, I will not make it in the way in which I had planned. I will not have the time to watch the films I wanted to watch nor will I bake the things there are a not enough people in the family to eat. I might not be able to rubber stamp my own wrapping paper for Ebenezer’s sake.

This illness crept up on me at my cousin’s fabulous wedding at the weekend. Not particularly unwell with anything drastic, but I had a fever, a cough and the things that usual accompany fevers and coughs. An annoyance if one is healthy, something a bit more if you are receiving treatment for myeloma. I do not have the resilience to battle it. True to form, to A&E I went on Monday for four whole hours for IV antibiotics. The general public out there with their bugs do not have to do that. They might complain like I am right now though.

Anyway, Mamma Jones says I have to try and get out of bed now. I just watched Die Hard 2: Die Harder. I only added that so you know that I am trying to find some good in a bad situation. I just wish, given the importance of this Christmas, I could do it without factoring myeloma into every single task.

If George Bailey has taught me anything it is that one should be thankful for what they have, so that is what I am going to try to do today and with that in mind, I wish you all a very Merry Christmas.

🎄🎄🎄

EJB x

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The Gippy Tummy

In the last few weeks, I have learnt many a lesson (okay, four lessons). All the lessons revolve around the medical wonder that is radiotherapy; my view of which has changed quite dramatically from when I previously had the NHS brand my who-ha in October 2012. In short:

• Radiotherapy is not easy
• Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
• Never ever ever wish for a gippy tummy
• If you are a female, always prepare for a radiotherapy session as if you are about to wear a string bikini in public

Since my trip to Casualty in June, I have wanted one thing and one thing only, and that one thing is radiotherapy. My pain at that time was such that I believed that fixing that pain was the only way I would be able to make it through my current treatment. On my worse days, my survival hinged on fixing my pain. Do not get me wrong, I loathe chemotherapy just as much as I know it is a necessary evil, but try being on a course of treatment when you cannot bend down and pick up your bath mat, sit on the toilet or pull yourself out of bed. Maybe reducing my paraprotein should be my priority, but it is not. My priority has and continues to be fixing my back, so I can then focus on that pesky paraprotein. Battling the two at the same time takes energy, more energy then I reasonably have. I’ll use my energy on both if I have to, but my effort in doing so is a disservice to both. My pain has taken away too much of my freedom and I just want to reclaim some of it.

The journey from discovering the first twinge of back pain on 27 May, to completing my course of radiotherapy treatment on 29 August has been mercifully quick. Three months may sound like a long time, but all things considered, it has not been that long at all and that is just another prime example of the brilliance of the NHS.

It may have taken a month or so to convince the Medically Trained People, with Operation Radiotherapy, that I could not wait to see if my treatment alone would heal my back, but once that was agreed by the end of July, everything else happened very quickly. Operation Radiotherapy was far from subtle and essentially involved me only talking about my pain during my appointments, much to the dismay of Big Sister who wished for me to discuss my treatment plan. I may not have been subtle, but neither was my pain, which had decided to occupy almost every waking thought, especially the thoughts that came when I attempted to move in my sleep.

On the 6 August I was informed that I would be having radiotherapy and it was most probably going to be in the form of five sessions over five days, targeting the tumour around my L5. I was ecstatic at this news. I know I was ecstatic because I wrote a blog about it. It was during this appointment that I was told that I may experience a gippy tummy as a result of the radiotherapy. Thirteen days later my treatment began.

I did indeed have five sessions, on five different days, but due to the Bank Holiday and my need to see Kate Bush in concert, it actually happened on a Thursday, Friday, Tuesday, Thursday and a Friday. A week prior to the first session, I had my planning appointment, which featured two new tattoos and a CT scan. By the Tuesday session, I was incredibly relieved that I had some respite between zaps and I was not due in everyday. I do not think my body would have been able to handle it. It was a four-five hours a day for two minutes of radiation, and I am a weakling.

The Radiotherapy Department at UCLH is a strange place. It is in the basement of the tower and thus as I waited, I had no phone signal to keep me company. The waiting areas are very much designed for patients receiving the treatment for usual cancerous reasons. They were not designed for people getting radiotherapy to ease their pain. It may sound like a small thing, but waiting for upwards of an hour on a hard departure lounge style chair is not something my spine particularly enjoys. Add that with having to lie down on a slab for ten minutes, bookended by hour plus journeys in a suspension free ambulance chair and what I got was immense jarring pain.

In the secondary waiting area, the opaque windows are adorned with pictures of butterflies and stars accompanied by quotes about the brilliance of nature. This of course, made me guffaw at the thought that somebody, somewhere, believed that this would relax somebody with cancer. It was in stark contract to the stark room with the big whirling machine hidden behind a maze of iron lined corridors. In these rooms, there are six identical rooms, there was a screen for me to protect my modesty as I removed the bottom half of my clothing. I am not entirely sure why I needed to protect my modesty with a screen, when my knickers would be pulled below by bum during each session, when I was lying on the metal slab, with a piece of blue paper over my nunny.

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I found the whole thing incredibly exhausting.

After the first, second and fourth session, I vomited. Vomiting is not a side effect I am particularly used to. I thought I was used to everything. I may have had a stem cell transplant, but vomiting, thankfully, bar a few other occasions on my HRT, had been my only experience of being physically sick. Nausea sure, I live with that daily, but vomiting to me symbolises being unwell and until I experienced cancer, is one that I heavily associated with people having cancer. On the fourth day, I lost a very nice sandwich from Benugo’s. I did not like it. It made me feel like I had cancer.

On days 1-5 and for several days post, I experienced extreme fatigue. After the first session, I got into bed at 19:00hrs and emerged the following morning. Three days after my last session, I was so tired, I forgot that I was crashing on my steroids. Fatigue was not a side effect I was told to particularly expect, but I think that radiotherapy and chemotherapy is something of a toxic mix, and my body was just displaying that for all and sundry.

On the fourth day, I also had my regular clinic appointment, during which I lambasted the false claim that I would experience a gippy tummy. I did this because I am a fool and did not associate vomiting with what one could consider a ‘gippy tummy’. I was just fed up with being constipated that I thought I would welcome a good, thorough cleaning. The treatment finished on a Friday and by Sunday, I was cursing myself and the pain in my stomach. By the Monday evening, after I had spent four hours on the toilet clearing my bowels, I was cursing the radiotherapy. I am a self styled ‘Strong Ox’, but slipping off a loo sit because my naked body was drenched in diarrhoea induced sweat, was enough to make me doubt my stoicism. The next day, Haemo Dad put me in his car on the advice of the Medically Trained People and took me to A&E.

I like to think that my four hour adventure to Peterborough City Hospital was not an overreaction and was a well considered precaution. It was a precaution for many reasons, not least because four days before my neutrophil count was 0.85 and there was a fear that I had an infection. To me it was a necessity because I needed reassurance that everything would be okay. I know many side effects and I know how I should feel on almost every occasion. I had no idea what was happening to me and that scared me.

Haemo Dad had to go off and do some Haemo stuff in PCH, so he was replaced by Mama Jones who waited patiently with me until I got the okay to go home after I was given some fluids and IV paracetamol. As an aside, I can confirm that IV paracetamol can give one a nice, deep sleep.

In my private room, having waited for five minutes to check in with my fellow citizens in the reception, I was rather impressed with the treatment I received. It was thorough, and it was delivered by a Person Medically Trained Funded By The RAF, which led me to seek confirmation that I was not hallucinating. Obviously, for anybody who has ever inserted a cannula into my veins or has been present when somebody else has inserted a cannula into my veins, I was rather less impressed by the size of the cannula (I think I am spoilt at UCLH), or the blood that bled when the tube was removed. It is 15 days later, I still have a bruise.

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Evidence that I made a third visit in two years to Peterborough’s A&E.

After six more days of sleep, liberal doses of Buscopan, and a £34 round trip to have my bloods done, I felt back to normal. As I said to my CNS, normal to me means heavily constipated. As well as feeling constipated, I also felt embarrassed that I went into my radiotherapy thinking that it was nothing. Not only nothing, but I went in thinking that it would be easy and welcomed the predicted side effects. I was wrong. I would not want to go through it again any time soon.

Time will tell whether the treatment worked. This week, my back hurts more than it has for a month and I hope this is a sign of the radiotherapy is working. I just don’t know. If this whole affair has taught me anything at all, it is that when it comes to My Myeloma, nothing is ever certain.

🙏

EJB x

P.S. Blame the fatigue for the length of this blog; I certainly do.

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Accident and Emergency

I lie where I am lying and I am ruing the day I boasted about having more energy than I have had in a long time. Since I did my little boast (if you cannot recall it, you can find said boast directly below this rant), I have felt unwell. Not only have I felt unwell, but yesterday I wasted an entire day’s annual leave in bed at Mamma Jones’ house wanting to punch déjà Vu in the face. Today, I missed my long awaited, first physiotherapy appointment as well as missing my meals. All these factors get me to where I am at this current moment of time, in a bed in A&E waiting to see a doctor…

To be clear, I am absolutely furious. I am furious because I do not want to feel incapacitated by my health anymore than I was at this point last week. I am furious because I have too much to do to have to spend the next few days in bed. I was maddened by these two points prior to 17:00hrs this evening, but since then, my fury has turned to red rage.

The red rage appeared because instead of giving me some antibiotics and inhalers, as I told him to do, the GP at my parent’s medical practice decided to nebulise me, make me take eight steroids and then send me to hospital. Not only was I was told to go to A&E, but I was forced to go to A&E via ambulance and via blue light’. Red Rage.

I do feel unwell. My cough sounds revolting and, in general, I look goddamn rough, but I did not, and do not feel like these factors warrant me lying in a bed in A&E. I am wheezy and last night, I had difficulty breathing, but again, that does not warrant me lying in a bed in A&E. According to the GP, I am having an acute asthma attack. According to a nurse and the paramedics, it sounds like I have a chest infection and need some antibiotics. Red Rage.

There are levels to illness and as much as this one makes me feel bad, and in need of my bed, it does not require hospital treatment. I know a different sort of illness that requires that and I am sick of that one. Speaking of which, if it were not for that illness I know all to well, I would not be here, lying in a bed in A&E. I want to be in my bed, resting.

I may have got to experience my first ambulance ride, but I feel like that journey was a complete waste of public funds when Haemo Dad could have transported me to A&E much quicker. I have other comments about the GP’s actions as an example of our overrun A&E’s but I will voice these when I am home safe and free of a fatal asthma attack, which is what the GP told me I was at risk of. The GP coincidently did not know what an autograft stem cell transplant was, so.

In the meantime, enjoy my photographic journal below.

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I’m back and the bed that I lie in is not in A&E, it is in Mamma Jones’ house and it is the morning after the night before. I thought it only appropriate for me to conclude my tale in one part, but alas, I was too tired last night to do it.

I returned home around midnight having had some oxygen (I was in no way a fan of the nose tubes, and it wasn’t just because it prevented me from sniffing EMan), an X-ray, another nebuliser and some steroids. I returned home with antibiotics, steroids and an inhaler. The surprise astounded me.

I must say, my experience yesterday, reaffirmed by views on primary care in the NHS. Unlike those views, I was most impressed by the treatment I received as soon as I got in the ambulance and thereafter. They strap you down you know.

Back to my though, I am embarrassed that the response to me having a chest infection and asthma, the latter being something that returned to me post transplant, was an ambulance and A&E. I spent most of Monday and Tuesday being absolutely frustrated that once again, my body had been brought down by a bug, something that once upon a day a lemsip or three could cure, so add an overreaction in blue light and I am at a loss.

Fortunately, and I think this one is more for others, as frustrating as I find it, as I have now experienced this chest infection/asthma cocktail once before, I knew what it was and I held my head together. I may feel blue about being unwell and letting people down because of it, but I was in no doubt of what was wrong with me yesterday. Okay, so there may have been a little fear when the GP said ‘fatal’ and I had tubes stuck to my face, but I didn’t let my mind run away with me, which is indeed progress. I held my head.

And so, today I am to rest and then tomorrow we will see. On a plus note, I did feel better when I left the hospital yesterday, so it could not have been all bad.

EJB x

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Admittance Part II

It turns out that sleep is not coming easily to me today and my oramorph is wearing off, so I thought I would use this morning’s annoying twilight efficiently, and fill in some gaps. Actually, they are not really gaps, it is just an excuse to show a photograph of myself that is so hideous it looks warranted mugshot, after a drug fuelled crime spree and orgy.

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Such was my fever when I arrived at the hospital, that my clothes were drenched. I was actually thankful for the hospital gown. It was embarrassing when I first met people, I was convinced the the people waiting patiently in reception, looked at me and thought, why does that stereotypical obese person get to push in? It’s probably why I opted to walk it instead of an ambulance.

I felt somewhat stupid on our arrival, that although I was in a lot of pain, my temperature had gone down to 37. When I heard that, I thought that the Medically Trained People there and the haematologists were going to think I was a complaining weakling, who could not handle a teeny bit of diarrhoea. It was a thought that has been following me, how bad, was bad enough? Is it really that bad if I can take photographs?

Fortunately, or actually unfortunately, the extent of my stomach cramps was clear on my face, my bloods showed that in the time it had taken for me to leave the clinic earlier in the day and then, I had actually become neutropenic sepsis. So, I was not making it up. Phew. A second temperature reading had it near to what I made it at 38.2.

I managed to get some witty banter in during my examination, my so called graphic measurement of the number of wipes required to describe stool consistency is an example of why I am an exemplary patient. Despite, trying to win the staff over, I still feel like I could have gone through the night, not required special treatment in A&E and been able to walk into the Haematology department this morning. Less fuss, less dramatic.

As much as I would like my treatment in the NHS to only be undertaken by haematology or oncology nurses, I must admit that the nurse who treated me in A&E went above what I would expect. Perhaps she was just thankful that I got her out of cleaning up somebody else’s poo, but either way, she made sure I was as isolated as I could be, and when there were no porters, she escorted me myself, even after she had handed me over. That’s nice.

And then I went down memory lane to the Acute Medicine Unit, where the room alone is making me itchy, and they cannot locate a second pillow. I don’t ask for much really, I am neutropenic and I have lytic lesions. These things have to be considered by the staff in this faceless ward I am in.

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Now, if I could only just be sick, I would be very much obliged.

EJB x

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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