Category Archives: Haemotology

Expecting the Expected

It is strange to be surprised by the expected, but I am. I knew that I was going to have a dodgy tummy, nausea and fatigue, I have been preparing for it for so long, I was almost bored of it, but now I am in it, I can wholeheartedly say it is nothing like I expected it to be.

I think my current situation, is one where to truly understand it, one has to live it. Saying the words, will not make you comprehend the force. And let’s face it, there is a lot of force. No amount of preparation is going to make a stomach cramp any easier.

On Sunday afternoon, when the diarrhoea started to come, I sat on the toilet and thought to myself, that if that was it, it was going to be easy. Clearly, that wasn’t it. Fast forward a few days to last night, when I was forced by my body to have my tenth poop of the day, whilst doing that, I developed a cramp that was so hideous, I vomited (500ml by the way) and sweated. It then took, three more visits to the toilet, five hours, IV anti sickness, IV fluids, oral anti sickness and stomach pills and oramorph for the pain to subside. Until that pain did subside, I spent that time awake, unable to do or say anything, lying on my bed thinking, this must be the worst I am going to feel. It must be the worst right?

I do not know if I have yet hit the bottom. I currently figure that my diarrhoea and vomiting cannot worsen, but my fatigue can, if I continue to lose fluids at the rate I am losing fluids. That’s basic science right?

I am going to try and explain my current role in this world as Green Excrement Girl, but I am not doing it to gain your sympathy, it is just to explain what this feels like. I’m having to think of it in much the same way; if I start to feel sorry for myself, I become a martyr to it. I am no martyr. Right now, this is my job. So, as well as expecting the expected, I have to accept it too. I am just trying to ride the most unpleasant wave that has ever existed.

Since Sunday evening, I have not been able to hold down any liquids or foods that have entered my body. The Medically Trained People were trying to get me to drink 2.5 litres a day, but it was decided yesterday, that attempting to do 0.5 litters caused so much discomfort, that I did not need to do it. I really am trying, and yesterday, I even felt hungry, but after a few sips of water, spoonfuls of mashed potato, the mixer in my stomach started churning and I had to run to the toilet to deposit it. This happens whenever I drink or eat. On Monday, it was worse, because I ate much more, thus the sheer volume, was, well, impression. Mamma Jones was soon sent out to buy moist toilet paper. Practical. I do not want to irritate any piles.

Managing the diarrhoea is one thing, but it is not my only symptom or problem.

Practically, it requires me getting out of my bed on the lefthand side to unplug my pump, wheel my fluids and myself round the foot of the bed, navigating wires and other obstacles, past the sofa, to the bathroom. On competition, when I am back on my bed, the pump needs to be reset, because it’s battery is broken. I taught myself how to do this yesterday, because I could not stand all the beeping.

Physically, the diarrhoea is accompanied by nausea, which until last night, had just been nausea, and not full scale vomiting. If you were wondering, the vomit, was the same colour and consistency as my poo; slime green. So yes, nausea, it is a bugger. I feel constantly sick. There are scales to it, but in short, there is always a feeling of sickness around as is its friend, the stomach cramp. The stomach cramps, for ladies, feels like the worst sort of period pain you will ever have, at it’s worse, I imagine it is like giving birth. I actually think this. It constantly feels like they is a wooden spoon, in my stomach making potions, occasionally making sure it gets all the ingredients by scraping round the sides. Last night, I knew there were drugs in me, because my mind started to create stories for what was happening in my stomach. I kid you not

So, as somebody has had a nasty bout of food poisoning will know, because of all of the above, I feel weak. I am dehydrated, my blood pressure is low and I constantly tired. Yesterday, because of the dehydration and the byproduct, dizziness, I had to sit on the toilet for ten minutes longer than needed, to ensure I would not faint on the long walk back to my bed. Again, with that sort of activity, I am running a constant risk of piles. I am talking grade 4 level here.

Above are my main adversaries, but I also continue to fight a fever, a toothache, a sore throat and ugliness. Oh, and my neutrophils are flat.

Fortunately for me, the Medically Trained People are marvellous, and more crucially, they have seen everything I am experiencing before. The Doctor explained yesterday that they can give me so many more concoctions to get me at my most comfortable, she also said, which I guess is a good thing, nothing is happening that should not be happening. I am no medical marvel.

The difficult thing with all of this, is that nobody knows for certain if this is going to work. I have seen a lot of comments on the blog mentioning the word ‘remission’ and I have been asked about it much more than that in person, but the truth is, my transplant is unlikely to give me that. Everybody’s experience is different. It’s my best chance. The reboot is what I need. Back in January, when I was sitting on my paraprotein level of 20, I was told that it would be highly unlikely to walk out of a transplant with a level of zero. At my last Clinic Appointment, the Senior Medically Trained Person said that a decision will be taken after my transplant as to whether I have to start a new course of treatment straight after or if they are just going to let my body be for a bit. It could be that my body does surprise everybody, but I think we all need to be realistic about what my transplant is going to achieve. If the last 11 months has taught me anything, it is that My Myeloma is one stubborn arse. Time will tell. I am going through this, putting up with this, because somehow, maybe not immediately, I know it is going to give me a holiday, but more importantly a return to normality.

As for today, I am hoping for a better one. Late last night, my stool sample came back and I do not have an infection, which means that I can take Imodium. Yes. Imodium. The day might not be better, as I was threatened with having to measure all my outgoings yesterday, which sounds fun. Time will tell I guess.

Today is Day 7.

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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Negative Connotations

There are some afflictions that have negative connotations. Multiple Myeloma is not one of them.

Last week however, I was informed that I may, may have had an affliction that some members of our society may judge. I had a rash and for some reason, the medical team decided to give this rash a name. It was not a nice name. It really wasn’t. I was not happy when I heard this word, and I was only being tested for it. There are also several ways for people to get said ‘rash’. We need to be educated about this. My reason, for example, was Myeloma. Clearly.

Unfortunately, it is a nasty sounding rash and despite it being 2012, there is still some prejudice against things people can get through bonking, even if it is not a direct result of spirited bonking. Ah, bonking….

So, what am I talking about? Herpes. Bloody Herpes. They thought I had Herpes.

Alas, I am a hypocrite. Despite my desire to educate the public and say “It is okay to have Herpes”, I am not ready to take on that battle just yet. So, it gives me great pleasure to inform you that at midday I was told that I do not have Herpes. I have a rash. Go figure.

Oh, and whilst we are on the subject of the possible implications of sexual intercourse, it has been confirmed this morning, once again, that I am not pregnant. Shocker.

The Fun Never Stops

Well then… It would be fair to say that I am furious. My head is hot and my eyes are evil. Having prepared myself for a discharge home today, I was informed early in the morning that I may be transferred to another hospital for a consultation on my back. This was confirmed at 13:30hrs. At 18:30hrs I was transferred from UCH to the National Hospital for Neurology and Neurosurgery in a very bumpy ambulance. The perfect transportation for any modern gal with a fractured vertebra. Upon arrival, I asked for some pain relief. I am not allowed any meds until I have seen the doctor. I have not seen the doctor yet. It is 21:00hrs.

I do not like this hospital.

I do not know why I am here. Is it for pain relief? Do I need an operation? What colour socks is my doctor wearing? Why can’t I go home and get my head around my diagnosis before I start my treatment? Why has a doctor not told me? What is a doctor? Why am I drinking lukewarm tap water? When am I going to get my drugs? Why did a man with a nappy rash just walk by my bed in his boxers? Why? Why? Why?

All I know is that they are not concerned about an imminent collapse of the bone. I guess that is a good thing.

In other news, Mamma and Middlesborough were good eggs in the ambulance.

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The Penthouse

Get Myeloma? Get a view.

So, I was moved to the Haematology Unit on the 13th Floor. Everything about this unit is amazing. The staff are amazing. Actually amazing. I have every confidence that this team of staff are going to save my life. Many people are smitten with one of my consultants. He’s seen my tears. The nurses, amazing. The tea, after a week of craving a good cuppa, amazing. The best bit though? The view of this amazing city. The city I have decided to stay in throughout my treatment. London Town.

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Formal Diagnosis – 20 August

After a ward transfer, a bone marrow biopsy, a brief history of myeloma and its treatment and several tears, I produced this, with errors sure… I am typing this on a phone whilst sitting on a waterproof mattress for goodness sake….<

All,

Thank you so much for the messages today and over the last week. It has really lifted me at a time when, essentially, my life has been turned upside down and what I thought last Wednesday about my life does not exist right now. It’s good to know that I have so many people looking out for me, and honestly, this has been a cause of so many tears over the last 100 hours or so.

Today, specifically has been so exhausted and emotionally and I know that a lot of you are keen to know what happened. Forgive the mass message, it is just easier at the moment. Obviously continue to contact me by any means, and I will endeavour to reply when I can. As so much stuff is changing, I’m going to blog everything. I literally mean everything. So if you are faint hearted and do not want to hear about my bowel movements, depression and, well, randiness, get somebody you trust to tell you the highlights. I’ll set it up in the next day or so and I intend to use that to update on all my treatment needs. Obviously still contact me and ask, but I’ll be using this.

So today… I moved to the haematology ward yesterday and today I have had a bone marrow biopsy, an MRI, decided my treatment and learnt all about the disease.

At the moment they are 95% certain I have myeloma. The full biopsy results will be back in ten days, so they are going to start my treatment anyway based on all the other results to date. So I do not know how advanced it is, but I am told that with myeloma, the stages are less important.

So a little bit about myeloma… It is a treatable disease but not curable (there is an outside chance but the risk is too high in terms of death so I ruled that out). I will always have it, but hopefully it will be in remission for most of that time. I am putting thoughts about a reduced lifespan out of my mind because it is so important for me that I stay strong. I hope over time they’ll be further advancements in the treatment, but time will tell.

At the moment, I am still in a considerable amount of back pain, I am anaemic but at least my calcium is within the normal range. I should be released in the next day or so.

My treatment – I have decided to join a trial (two in fact). Because of my age, I think that this is going to benefit me to be on a more progressive treatment. I will start by the end of the week. The treatment is made up of six monthly cycles involving three drugs (steroids, chemo and something else I cannot spell). The chemo treatment is relatively light and I’ll get it on the first four days of each cycle. The steroids will give me a thick neck. Before that they’ll be taking some stem cells for when the condition relapses, which will require some more chemo. Me being me, I have asked to be referred to a councillor and my nurse cognitive therapy, which is basically massages.

I’ll be taking visitors when I am home and when I am being treated as an outpatient but I will find out about visits and stuff. I may call on some of you for scrabble time and film marathons.

The next six months are going to be full of ups and downs and if I ever come across as more of a bitch then I usually am, I apologise. I almost certainly do not mean it.

In the words of the Golden Girls, thank you for being my friend.

Much love,
EJ x

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