Tag Archives: bugs

Man Flu

“Post transplant, you’ll have a weakened immune system”

😷

Quick! Live in a bubble to protect the weakened immune system. The thing with a weakened immune system, even when I am told that my blood counts are misbehaving,  I cannot see or feel any evidence of supposed misbehaviour. My knee bone is connected to my thigh bone, but how is my immune system connected to the stranger who coughed as I walked past them last week? I can feel my back pain, Graft Vs Host Disease and my daily bouts of nausea. I can care about those things because I can see how it all connects in the world of My Myeloma. I take a pill and the pain reduces or if I walk too far, the pain increases. What makes one person with a sniffle the epitome of mortal danger when a person with a passing cough is a mere annoyance? 

A weakened immune system means I am more likely to catch bugs and sneezes than a healthy person. I apologise for stating the obvious, but sometimes, I need the reminder. It also means that once I catch a disease, it takes much longer than I would wish and expect for my body to fight it. An added disadvantage of getting one of these spread diseases is that my body might not even be inclined to fight it. Instead, it might just welcome a few other dirty friends into my cosy camp of a body and then I’ll be stuck spending the next few weeks being reminded that there is a reason I am prescribed two inhalers.

Regarding my immune system, I might not give it too much attention, but I do what I am told. I do not go to public swimming pools and lick the tiled surfaces and I will not eat without washing my hands. I avoid public transport during rush hour and I avoid touching people if I know they are feeling unwell. That said,  my concessions to my immunosuppression has their limits. I am sensible yes, but I refuse to walk round with a surgical mask and gloves on.   
My theory on this subject is that exposure to some germs is good for my repertoire.  Also, I want to live a reasonable life and living in constant fear of the common cold is  not normal, and seriously, how dangerous can a stranger’s cough be? 

The answer to that question is, of course is ‘quite dangerous’. I have discovered this the hard way. To my embarrassment and severe frustration, I have recently discovered that despite not being able to feel it, smell it or even notice it, my immune system can bring my life to a standstill. What started off as a cold, has brought my life to a standstill. 

Approximately 21 days ago, I developed a light sniffle and a sore throat. Two days after that, I experienced a few days of sickness and diarrhoea. The latter are not out of my ordinary, so I assumed it would pass soon enough. A fortnight ago, with my bowel seemingly back to normal, I spent my weekend suffering from lethargy, a loss of appetite and what appeared to be a throat full of knives. Every day, I would convince myself that I was improving. 

After 10 days of feeling slightly rotten and once again, spending too much time in bed,  I thought I best inform the Medically Trained People. The symptoms I had, could have been an infection or Graft vs Host Disease, so I thought it was about time I was sensible and got a second opinion. I loathed the idea of a second opinion. If I did not have myeloma and if I had not had three transplants, I could have just moaned about feeling poorly until I did not. Maybe I could have talked my friends through the varying colours of my sputum on Facebook. I would not have had to go to the hospital for tests…

The following day however, I did just that and took myself to St Bartholomew’s Hospital for tests, because I do have myeloma. Upon arrival,  I christened the building with some red tinged vomit and was informed I had a temperature of  38.5. I was poked, prodded, x-rayed and I was told that I was going to have to be admitted and given intravenous antibiotics as a precaution. I thought it was all a complete overreaction, so I bartered with them. I got the Medically Trained People to let me go home, after I had some fluids and antibiotics, and all but pinky swore that I would come back over the weekend if it got worse. I promised them that I was a very sensible person and I was most definitely capable of looking after myself…

… It turns out, I am a liar.

That Friday evening, I got home shortly after 18.00hrs, climbed into my pyjamas and then my bed and I did not get out again until Monday morning. The only times I did venture out of my pit was to run to my bathroom and produce some vomit that contained blood. I drank and ate nothing. On the Saturday, the hospital called and told me one of my tests had come back and I had Influenza B. Proper flu. As I had the ‘official’ flu, I had to come in the next day to collect some medication. Sunday morning came and I could not get out of bed. Housemate said it was pathetic. I did not need him to tell me I was being pathetic. I really could not get out of bed. Who knew the flu could completely floor me? I have had transplants, I should have been made of sterner stuff than that. 

It’s just so ordinary.

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By the Monday morning, I had drunk less than a litre of water since Friday. I was groaning. Literally groaning. What had started out as something small, something I did not want to make a fuss over, had somehow become something that required actual, real life, medical attention. Seeing that simply willing myself to improve was no longer working, with Housemate in tow, I made my way back to St Bart’s. I had an appointment I failed to brush my hair for, let alone source lipstick for. I did not not look my best. The lack of hydration had caused my lips to crack and the inside of my mouth to bleed.

To cut a short story even longer, we went on to see a Medically Trained Person who looked at me and simply said “oh, Emma” and promptly told me that I was going to be admitted. I had lost over a stone in a fortnight. I was transferred to a private room on a ward. And in that room I stayed for four days. I vomited more blood, I had several bags of fluids and I rediscovered the joy of Mackie’s vanilla ice cream after the anti sickness tablets had kicked in.

  
Apparently, it was necessary for me to be kept in isolation. I did not see a member of staff who was not wearing a surgical mask for the length of my stay. The flu had not only taken me down, it had heightened all my GVHD symptoms. It meant more drugs, more waiting and more lost days. Wasted time, spent alone in a hospital bed. Bar an hour a day, my only company was my laptop and the faceless staff who interrupted my sleep.

I have been out of hospital for five days now, and I am still a pathetic little weakling. I am still embarrassed and angry that I have a body that required hospital admittance for the flu. I resent the fact that even though I am out of hospital, I have been told it is going to take a few more weeks for the infection to go. 

To put my frustration into some sort of perspective, Big Sister experienced a similar illness to me at the same time. She was coughing and sleeping and generally feeling unwell. Sound familiar? Like most otherwise healthy people, she went to her GP and was prescribed a course of antibiotics and was sent on her merry way. I’m jealous that that was her experience compared to mine. In addition to my hospital stay, I required two chest x-Rays, daily blood tests, multiple bags of fluids, nasal and oral swabs, two different types of antibiotics, an inhaler, thrice daily nebulisers, steroids and ice cubes.

😷

It’s experience right? Hospitalisation for the flu will one day be a funny anecdote I can tell my friends’ kids about. When I tell it, I’ll leave out the part/s about me feeling sorry for myself that at the age of 31, I am considered a vulnerable person who cannot tend to herself. In the future, my story will also include something about being lucky that the NHS cared for me and, with acknowledgment to my stupid weakened immune system, an awareness that it could have been much worse. There are many people, far braver than I, fighting seemingly unrelated side effects of cancer as I type and you read. 

We might be lucky enough to get a remission, but, having ‘cancer’ never reallygoes away. 

😷

EJB x

Please note that real flu and a cold/other bugs are very different beasts. The memory is raw, liken  them in my presence at your own risk… My cousin said they always say the difference between real flu and a cold is whether you would get up to pick up a £50 note! Take that with you.

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Coughs and Sneezes Spread Disgust

When I am wrong. I like to admit I am wrong. I like to shout it from the rooftops and have it be the headliner of all my interactions for a set duration after said discovery. What am I saying? I struggle, very much to admit when I am wrong, and any acknowledgement, will come somewhat begrudgingly, usually, a long time after the deed was done. Today, I admit I was wrong.

And so, here we are, it would appear that I, Emma Jane Jones was wrong. Last year, I was too quick to judge the attention seeking, social media using public. Phew. I can breathe again. Hang on, I cannot, because I feel like I have plasticine stuffed up both nostrils and goo stuck in my throat.

Last year, I freely criticised those who complained about their trifling colds and coughs like they had been diagnosed with something worse than an incurable form of cancer, and labelled them insensitive. I wish, I thought. I believe, though the recollection is somewhat hazy, that I wished to just suffer from a cold. In the deepest darkest pits of my side effects, I thought that a cold would be a piece of cake, a walk in the park, a breeze. It’s not. It’s just one long wheeze, and I am surprised by how super pathetically, I am managing it.

I currently have my third bug post transplant. I am told that this is pretty normal. The sensation I have felt for the last few days does not feel normal.x I used to function with a cold, I used to like the sound of my own voice with a cold, I used to just plough on and on when I had a cold. With this cold, I am not ploughing on and I am not really functioning. In it’s wake is self pity, paranoia and frustration. After all I have been through, after all I have managed, are you seriously telling me that I can be made bed bound by a cough and a few sniffles? Yes, evidentially, that is the case. I am utterly ashamed of myself. I should laugh in the face of this cold, but instead, I am producing the most disgusting sounding coughs, which I am sure are driving Housemate as mad as they are me, downing cough medicine and imagining that every symptom is a new cancer. That’s the legacy of My Myeloma, everything is sinister.

I know what common sense says. I know why I keep collecting bugs and I know why the linger, but that does not stop me from becoming a moody bum whose sum of daily accomplishments is switching from BBC IPlayer to Netflix and back again.

The post transplant world is tough you know. Post remission world, I am learning, is categorised by setbacks and occasional disappointment.

And having a cold, is one unexpected, major, disappointment.

EJB x

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The Sniffles

Newsflash

HOT OFF THE PRESSES

Stop what you are doing right now

I have a cold. I am talking bogies, phlegm, sneezes and a lost voice, sort of cold. Well, I do not have it now, I had it two weeks ago, but I did not think to tell you about it at the time because it as just a cold, and unless you are an attention seeking weakling, a cold is not a big deal. Everything about my cold felt familiar, which is to be expected given the fact that I am 29 years old and I thus have been around bugs and other peoples’s snot for 29 years. You know what I am talking about, the colds, they are pretty common.

With this cold, my first cold post transplant, I did not want to create a fuss, why would I? After all the side effects I have experienced, I actually find the symptoms of a cold quite pleasant, for they do not distinguish my body from everybody else’s the way everything else does. You know what I experienced with it, because you have had one too, there is nothing sinister about a blocked nose and a croaky voice is super sexy, unless you cough something up with it.

In my mind, having a cold was good, I have longed stopped washing my hands when I touch a door that is not in the compound. Opening up my body to some lesser bugs, builds up my immune system, right? I do not want to live in a protective bubble. I am far too lazy and far too restless in equal measure.

Even though I thought my cold was no big deal, from others, I sensed panic. Oh my gawd, beware of the snot, she has cancerrrrr and a compromised immune system! At first I was told to monitor it (I went and sat in rooms full of strangers and air conditioning instead), then I had to postpone my counselling because other cancer patients do not like colds, and then, I got quarantined and put on antibiotics as a precaution. Normal people don’t get that, they get Lemsip or the supermarket equivalent if they are feeling thrifty. I experienced vigilance.

So the moral of this story is that I cannot just have a cold. I cannot suffer in silence. I have to ring a bell and wear a sandwich board, and winter is coming…. Sniff, sniff.

EJB x

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Precautionary Measures

As I try and get on with the meaning of life, I am ever aware of the fact that I now have to take certain measures to ensure that I am not struck down with hysterical diarrhoea again or a bad bug of bad bugs. Post transplant, I am ever aware that I have to be cautious when it comes to all things germ related. I can confirm that this is caution is tedious. Everywhere I look, everywhere I go and everything I do represents potential danger. So imagine what it is like in London.

If I am not careful, I could develop a complex. If I am not careful, I could experience something that is less than pleasant. It’s a catch 22.

The caution is not from the unexpected (https://ejbones.wordpress.com/2013/02/12/hand-washing/), a stem cell transplant does compromise one’s immune system after all. Everything I read prior to my transplant told me that my immune system is now pants.

Wash, wash, wash, they said. Be clean, they said. Avoid disease, they said.

* Wash your your hands wherever you may go, before you do anything and after you have done it
* Do not put anything dirty in your mouth
* Do not go abroad for 12 months
* Only eat food that is dead of all things, not just the obvious
* Do not eat reheated food
* Do not let somebody sneeze into your mouth
* Do not lick the seat of a public toilet

The list goes on and on of course. And on. Fortunately for me, and I am trusting their judgement on this, my Medically Trained People are not as rigid as my Internet research implied. I am back on the raw cherry tomatoes for example and that is a marvellous thing. If I think that is marvellous, imagine what I thought when they said I could go abroad, not too far, three months after my transplant date. On this subject, I am playing it by ear.

I do not know how much of a threat coughs and sneezes actually are to me. My bloods are back to normal, but I swear at ten points in my recent history, I was told to avoid the coughs and sneezes for they spread diseases, but then just the other day, I was told that I was being needlessly cautious.

The dilemma!

There is a part if me that wants to be overly zealous, and live in a plastic bubble of cleanliness forever and ever and ever, and who disinfects after and during every encounter with Bruce. The other part of me wants to stick two fat fingers up and myeloma and my transplant and suck down a dozen oysters in rebellion.

In reality, I am doing neither.

I cannot help but see a threat to my health in almost everything now. As a thumb sucker, this new approach to cleanliness, is cumbersome to say the least. I stroke the dogs, I was my hands. I come in from the outside, I was my hands. I just lurve washing my hands. I carry antibacterial hand wash in my handbag. I really do. I draw the line at the face mask, despite having some hidden in the mess that is my bedroom,

If it was just my hands, that would be one thing, but it is not. Germs do not restrict themselves to hands. In my life to date, I have very much thought that exposure to germs is a good thing. I have not licked any toilet seats, but when it comes to food, for example, I have always thought that a little bit of germ exposure builds the immune system. Unless I was catering for somebody, I would never was my fruit or veg, well, apart from the leek, for those things are muddy. Now, if I want a strawberry or currently, the overly priced fancy cherry tomato, I have to wash them and dry them to eat them. My current preferred method is the sieve. A sieve? I just want to eat them. I have never understood people who wash an apple and then dry it in a hand towel. I understand now, they had all undergone immune compromised treatment as well.

I may have accidentally tasted a few prawns a weeks so ago, and reheated a soup, and ate some cold meat, but prior to doing this I did wash my hands. A day later, I experienced some unpleasantness from the bowel. Was it just a coincidence or did my lack of willpower let me down? We will never know, but the paranoia ruined the experience of eating these things in the first place. The propaganda worked. I was suitable scared and now for the foreseeable future, I will have to be sensible. Yawn in my face why don’t you.

More excitement is to come. I have to have a flu jab. The question now is, when does this have to stop? Can I have a follow up question? Okay. When is enough, enough?

And if you have managed to reach the bottom of this blog, I think the word count alone is a testament to my anxiety, either that or I need an editor… I clearly am a sucker for the propaganda.

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As for now, be clean little ones. Be clean.

EJB x

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Preparation II

Based on previous advice from the Medically Trained People https://ejbones.wordpress.com/2013/01/13/priorities-an-update/, somebody has had a super special wash to rid him of evil germs. He also got a new face, for a treat, just like my manicure…All courtesy of Mamma Jones of course for I do not have a tumble dryer and my hairdryer is temporarily on loan.

Unlike me, EMan is not looking forward to our vacation. He doesn’t appreciate the drop from the hospital bed to the floor. The arm cannot reach there… Any fall may also necessitate another shower and prolonged separation.

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Hand Washing

A myeloma sufferer nearing their transplant date has many things to worry about. I can say this with the greatest authority, for I am a myeloma sufferer nearing her transplant date.

My greatest worry at the moment is not the 2% mortality rate, the high probability of mouth ulcers and lava like shit or the weight loss. Oh no, my greatest worry is how the hell I am going to remember to wash my hands in my new immune system-less body.

I have been told that I need to wash my hands after I have been out in public or handled money, before I prepare food, before I eat food and apparently after I have gone to the potty. Okay, I knew the last one already, and almost always did it.

In my adult life, I have strongly believed that one should expose themselves to some germs. I thought it made me strong. Sure, I washed my hands after I disposed of my waste or handled raw chicken, but that was my limit. Anticipating a world where I have to wash my hands after I shake somebody else’s does not sound like a fun one.

I am a thumb sucker. I love the comfort I get from it, but it’s not going to taste very nice covered in antibacterial hand wash is it?

Am I going to have to start opening doors with my elbows? Should I wear a mask in public? How much does hand wash cost? Is there a cancer benefit for people who are medically required to wash their hands more? How dry will they get from all this washing? Will I need a bigger handbag to accommodate the hand wash and moisturiser I’ll have to cart about with me? And what if I wanted to taste somebody else’s lollipop? Will I have to buy my own?

I have never licked a door handle, but knowing that I can now never lick a door handle seems unfair. I feel like I have missed out.

It’s a can of dirty worms.

Fortunately, I am pragmatic. If I need to wash my hands like an obsessive, then I will. I have enrolled myself on an intensive hand washing course. Apparently, every time you wash your hands you have to wash between the fingers and the wrist with soap for at least 10 seconds. I will find out whether I passed in June.

Wish me luck. I’m reaching for a First.

EJB x

*PUBLIC SERVICE ANNOUNCEMENT*
Antibacterial hand wash is not a sufficient substitute for soap and water. Medically Trained People are advised to use it twice before washing. True story.

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