Burping

Many things happen to the human body after a stem cell transplant. Many things. The Medically Trained People and some Toms, Dicks and Harrys, have made a purposeful effort to make sure I know what these side effects are, several times over, and regardless of whether I asked for the information or find it useful. For me, knowing of the possible side effects, helped me prepare in the sense that I did not panic when each thing popped up, but I could never really know the severity of the side effects, until I experienced them, no matter how much people who have never had a transplant told me about them. In the end, I wasn’t surprised by any of them because I expected them; I just couldn’t imagine them.

Since the 16 July, there is only one thing that has come my way that I was not in my reading materials, it was completely unexpected and without warning. It commenced after I resumed eating and drinking. The surprise side effect, my friends, is called, the burp. I burp a lot.

It does not smell.

If one were to think inside the box, my current side effect is not a shocking one. I don’t think it is anyway. It’s just not something that oozes femininity.

My main task at the moment is drinking. Apparently, I am to drink 2.5-3 litres a day. An achievable task to be sure, if one has not spent a sustained period of time replacing consumption with mass excretion, as I have. My stomach has shrunk and now, the minute something enters it, I am forced, forced to pass wind.

You may think I am exaggerating, but I am not. If putting stuff down my gullet was a constant, so would burping be. Cuppa tea? Sure thing, parp. Cocktail sausage? Why not, Homer Simpson. Sip of water? well I have dry mouth, crackle. Snap, crackle, bloat, burp,

With building up my strength, comes wind. It’s the pay off nobody mentions. Nobody mentioned that I would not be able to stomach fizzy water either, but I had worked this much out because I passed all my GCSEs. If only belching was something that people generally associated with elegance and manners. They don’t of course. People are prudes.

Hypothetically speaking, if I were to have burped prior to my transplant, which to be clear, is just a hypothetical, it would have sounded rather masculine. EJJ like, as somebody helpfully described my vomiting sound last week. I imagine, if I were to have burped in my old immune system, it would have been long and loud, something from deep inside my gut, so powerful one could feel the vibrations through their feet. Hypothetically.

The actual burps I am producing now, do not sound like that, which is a good thing given the frequency. Mamma Jones described them as sounding ‘sweet’, which in itself was nice, seeing as that is all I did on the two hour drive home last night. There isn’t much power behind these little mouth explosions. One might be able to mistake them for a cat’s purr. Occasionally, the burps can hurt and are accompanied by a little something something, and when this occurs, I reach for the Domperidome. If it persists, I reach for something stronger. Must love the drugs.

The unexpected… It keeps me on my toes, and contributes significantly to my current fetishist status.

Fit.

EJB x

Rock Bottom

I want this to stop. I don’t want any more pain. I do not want to experience the pain I am already experiencing. I do not want to produce from my mouth and nose, anymore green vomit with egg whites. I want to be able to eat. I don’t want to have to have a green poo, if you can call it poo, on the hour every hour. I do not want to have ‘a good case of oral thrush’. I hate relying on the Angels for every little thing, which last night, included putting my bed sheets on me because I did not have the strength to do it myself. I want to be able to sleep properly. I don’t know why my skin has decided to turn a certain shade of grey, but I want it to be its normal colour. I want to be able to drink without feeling like the universe in my stomach is staging a coup. I want some energy. I really want all of this to stop and normality to return.

The thing is, it’s not going to stop, not immediately. And I have to deal with this. I am not wallowing and I am not crying. The beauty of this process, is it cannot be turned around. These feelings, and these experiences were determined last week, we just did not know how they were going to manifest themselves. We still don’t for certain. The fact that I cannot back out, means that even though I may feel weak and a scaredy cat, I am forced into a position where I have to be strong, because all this shit, literally, is going to happen anyway. This makes soldiers of everyone, regardless of whether they thought they had the strength to do it or not. Get through this and I’ll never look at somebody who complains of a cold in the same way again.

Clearly we have assistance from the troops, for me, this means going straight to the oramorph now in the constant event of pain, because nothing else will curb it. My doctor told me this morning that I have to stop trying to be brave. I would not say that trying to remain well mannered is brave. I think he was referring to the use of morphine and how long go I go without asking for further assistance (T13 déjà Vu). How bad is bad? Is this rock bottom? It looks like it. After my experience last night, which was worse than the night before, I have reconciled myself to the fact that rock bottom looks something like this, and needs several doses of oramorph, to make the future look rosy.

And so, from rock bottom, I wish you well.

EJBx

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

Megatron

So, there we have it, I have had the Megatron, formally known as Melphalan. It has actually started. I have said it three times today, and thought it a few times more; there is no going back now. After six months of planning and waiting, I am here. I am scared, but today, my main emotion is excitement. Getting the Melphalan in me, is my starting point. Thank fuck for that. Finally.

At 13:56hrs today, a big old bag of the toxin, made its way through my PICC line, after an anti-sickness, some steroids and saline. This was followed by another trickle of saline. Easy peasy, right? Well, I guess for that, and the three anti sickness drugs I have in my possession, time will tell…

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On the side effects side of things, my body is behaving the way I was told it would behave. I feel okay. Yes, ‘okay’ is the right word, well, maybe a few notches under ‘okay’. I am tired, sure, I have had a busy day after all, and I have been out this evening looking at the healthy people on Tottenham Court road whilst eating pizza and drinking as much fizzy water as I can because my stomach decides that it cannot take it anymore. I have not been able to be as attentive to my phone and social media as I wold have liked, and I have only checked my Blackberry once. I have managed to see some friends in a place that was not my hotel room, because the Medically Trained People advised me to leave my half way house, if I could. I am not pooing out my immune system yet, nor am I vomiting my guts out. Give that time.

I am aware that I had many challenges today, I do not need to spell that out, but I can confirm that my biggest challenge looked something like this:

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For 35 minutes as the Megatron entered by body, I sat on my adjustable chair and made my way through not one, not two, not even three, but four orange Calypsos. It is a well established fact that I like ice lollies, but not that much. My initial approach had to be adapted approximately twenty minutes in, when I could no longer place the entire icicle in my mouth to suck because my jaw started to lock, and had to resort to licking the tip. Boys, take note. I tried to be graceful, but alas, the other patients thought it was funny (they had been through it before), one challenged me to see how many I could get through and I realised that I cannot eat with ice in my mouth, especially to strangers.*

And that was it. Chemo in. I am going to lose my hair now. I am going to get sick. And, I knew it when I woke up this morning after a terrible nights sleep, I knew something I was not ready to say until that point… Bring. It. On.

Bring it on. I can take it.

EJB x

* The record in the Ambulatory Care for the number of ice lollies in a single session by the way, is nine. I think they had a sweet tooth.

Side Effects

I’m alive. I’m alive. I’m alive.

Hello there. I would like to say that the reason I have not written a blog for so long is because I am so well that there is simply no need for me to off load my thoughts into the ether to prevent me from having a psychological breakdown, but alas, that would be a lie. And I am all about the truth. The truth is simple. I have been too tired. Tiredness sounds like a weak excuse, but it is not. I have been experiencing a tiredness that is so overpowering, I can spend a good two hours staring into space before I have realised that this is not a good use of my time and then when I do realise, there is not a damn thing I can do about it.

To be absolutely clear, this tiredness is quite different to a steroid crash. I do not feel ill when I am tired, which is a bonus. Unfortunately, whilst I do not feel sick, the tiredness just creeps in and completely takes over every other part of my being, so that the only thing I am capable of doing is lying down by myself with nothing but blankness from my brain for company. My TV may be on, but I am not watching it. I may even be able to produce some words to Housemate, like, “night”, but essentially, I feel like my brain has shut down. Blankness is the best way to describe it. If you could see me, and I could gesture to show what it is like, I would produce a confused look on my face, with my mouth open and make a constant dull moan. Let us add a metaphorical ringing in my ears, for luck. I see it as a form of stupor. At times, I worry that I am catatonic. The tiredness by the way, to ensure that we are all on the same page, is not about sleeping or my need for more sleep. I find that sleep and tiredness do not necessarily go together like a horse and carriage. Is this enough? Is the incapability explained?

As my last treatment cycle drew to a close, which by the way, was last week, it became increasingly clear to me that the tiredness was getting worse and thus my ability to do normal things was reducing. I found myself longing for my steroid crash (a ridiculous notion), because it would allow me to spend time in bed. I do not think others would judge me for spending more time in bed, but I would judge myself. I have said previously and it is my desire, that I want to live as normal a life as possible. During my cycles, after the crash, I try to do this, I try to be normal. I make plans, I go to work, I see people or at least I try to see people and at the start of VDT/VTD this was fine. I could achieve everything I wanted to achieve. Now? I cannot achieve or do everything I want to achieve with my time. By the time I get into my bed, which is key blog writing time, everything has been spent. I am done and the ringing commences. My body is in the middle of a war with my brain and the body is winning. I am essentially stuck in a stinking, dirty trench.

I believe an example would help hammer home my point. Two weeks ago, I had a day where I had three things planned. Treatment, a trip to Tunbidge Wells and then a show in the evening; I was very much looking forward to the latter. By the time I had completed the first two, my body was so exhausted and I felt so incapable of doing anything, I cried. I cried on my bed like a big old baby because I could not see how it would be humanly possible for me to get my body out of my flat, on a bus to the Southbank and back. The thought of it made me panic. Panic because I did not know whether I could last another four hours, and if I couldn’t, predicting when my body was going to breakdown. Was it going to breakdown at the theatre, were my friends going to see? Were they going to realise that there are times when I cannot make conversation because my brain shuts down or are they just going to think I am a rude self indulgent bitch incapable of holding a conversation? Which option is better? Breaking down at the theatre was my preferred option to doing in on the bus, because at least then, I could hop in a taxi home. But what if it happened on the bus? That 30 minute journey would be excruciating and then, would I even have the energy to walk home when I reached my stop? Then I panicked because I did not want to fail. I wanted to go out and defeat was not an option, well, it was, but I believe if I had allowed my brain to lose, I would have spiralled into a pit of depression. In the end, I went, I ate some food and that gave me some energy for four hours, but it was a struggle. I subsequently spent much of the next day in bed. Well, until the evening when I went on a hen do.

That was the day I realised that the tiredness was not run of the mill and I was officially drowning in it.

The wicked truth is that I have been taking thalidomide every day for the last 91 days without a break, and it is taking it’s toll of my body. The Medically Trained People told me to expect my side effects to worsen as I got deeper into my treatment, and my, were they correct. The main side effect for me, is not the neuropathy, it’s the fatigue. I have three weeks left of this treatment and I know that I am not going to be capable of having multiple plans in a day. At the moment, if I do have multiple plans, I worry about when I can squeeze in rest and if I cannot, whether I am going to be able to do it. Everything in Myelomaville is a balancing act, and unfortunately for me, I am just going to have to give more weight to my bed. Perhaps I need to conduct my life solely from my flat again, because I am finding that even a solitary plan can be exhausting. Knowing that I have to walk from a to b, or get somewhere, or speak to people, makes me tired before I have even done anything. Again, sadly, I find, this means that I see less people because I cannot make the effort to be sociable. It can be lonely. It is also frustrating.

I had planned to write this blog eight days ago, but My Myeloma had other plans. To be more specific, my side effects had other plans. I am just coming out from my monthly steroid crash, which last week proved to be the worst yet. I can say, hands down, that I have felt the worst I have felt since the autumn. Maybe since I was in hospital. The side effects will get worse as you go through your treatment. It’s been a delight. I do not want to dwell on it, but in short, I had to stay at Mamma Jones’ house because I was incapable of looking after myself. I even tried to postpone my treatment, but I had no luck there. As many people know, I am glass half full, so I just saw it as training for my transplant. I definitely did not cry a lot.

Here is an aside for you. I realised that a sign that things were improving was when I put a bra on. The support meant that I was planning to not spend the entire day horizontally. Also, wearing something that did not have an elastic acted waist. Needless to say, at its worst, I looked H.O.T. Hot.

So, there it is. The reason I have not been blogging or maintaining as much contact as I would like. Tiredness. It really is not fair. It sucks all the funny out of my mind and I am not used to that. I need to laugh.

As with everything, I am just going to plough on through and hope that I can get to the end of this cycle in one piece, without plunging into a cesspit of depression. In order to ensure that the latter does not happen, I will keep blogging. Self preservation and all that. Plus, some really exciting shit is about to happen.

EJB x

P.S. I thank you for your concern. It warmed my womb.

The Meaning of Drat

“Drat!” I snarled with unhappy emphasis.

“Did you just say ‘drat?’ asked my wife. “Nobody says drat anymore. Not since Snidely Whiplash died.”

“He’s dead?” I was shocked. I’d grown up watching old Snidely putting Nell on the railroad tracks in early episodes of Rocky and His Friends. Ofr course, Dudley Doright always saved the day, just in the nick of time. He was inept, of course, but Nell always survived. I guess that’s the power of a performance contract.

“No, he’s not dead. His future is just unwritten.” said my wife intelligently. “Why are you dratting?”

“My fever is coming back. I’m hot and feel like my head is filled with Jell-o.” She came over and felt my forehead.

“Yeah, you feel hot. Have you taken any aspirin?”  I had, and said so. Four days ago I had her take me to the VA hospital. I was concerned that I’d caught pneumonia again –or at least bronchitis. I was still sore from the visit. Claiming I was dehydrated, the ER nurse had taken seven tries to get an IV into my vein so they could dump a couple of bags of saline into me. I looked like a bruised pin cushion still, with little dots surrounded by angry purplish bruises tinged now with a bit of yellow. The nurse had tried again and again, choosing a new spot with each try. He finally gave up after six attempts and stuck me on the back of my hand where my veins are raised and entirely visible, and where I had suggested he drill in the first place. He was at least abashed at his failure and apologized profusely. I forgave him; he was a nice sort with a great sense of humor. He just sucked at starting IVs.

The doctor had sent me to get my chest xrayed and then gave me a nebulizer breathing treatment before sending me home with a packet of Zithromycin against the possibility that whatever was wrong with me was bacterial. Having ingested the last pill in the morning and was still feeling lousy, I assumed that my issue was viral. I’ve spent the week breaking out in heavy sweats as hot flashes threatened to set me on fire and left nasty headaches in their wake. I had other problems, but to mention them would be TMI (too much information) and since it’s the holiday season still, I’ll spare you. But I’ll pass it along that I have body aches making my muscles feel like they’ve been insulted by actual strenuous effort, which is hardly the case. My disability prevents anything too taxing.

“I can’t believe you said drat.” My wife can be relentless at time. This was one of them. “Why would you say drat when there are lots of other things you could say.” She stared at me daring me to reply. I did.

“I felt like it.” I said, showing my erudite make up. “Drat seemed to contain all of the elements I was trying to conjure with my expression.”

“Yeah? Like what?”

“Like an impending sense of doom.”

“Nell felt the impending sense of doom. Whiplash said drat because he was foiled …again.”

“Okay, well, that actually fits. I should have said an impending sense of failure.” I was becoming petulant. I get cranky when I don’t feel well and someone is catching me saying something ridiculous. Like drat.

“Alright. I guess I can accept that. Your health has foiled you yet again.”

“Yes.” I said. “Aren’t you supposed to be all empathic and consoling about my infirmity? How come you’re picking on me?”

“Because you said drat. Nobody says drat, what’s the matter with you?”

“I’m sick!” I said imploring pity. It was not forthcoming. Instead, I was told to go take a nap or watch some television or read my Kindle. I sat still and stared into space.

“What’s wrong now?” my wife asked without a shred of concern.

“I can’t decide which of those things to do. I think the fever is giving me brain damage.”

“Hrmmm..” she hrmmed. “You may be right. After all, you said drat.”

“I think I’ll just stay here and keep you company.” I said.

“Drat.” she replied.

Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.

Merci, Gracias, Todah, Thank You

…for your kind words and good wishes. I know they are heartfelt, and I return them to you a hundred-fold. Some readers who are not comfortable adding a comment (or haven’t figured it out) have sent notes that also mean so much to me. You lift me up on a cloud of kindness and my aches and pains seem to disappear.

You’re all making me out to be much more noble than I am (which is: not at all) but I’m going to simply enjoy the view from the cloud. I will continue blogging, at least for a while, and when I do sign off, I will leave the blog up in hopes that there is something helpful for other cancer patients. Thanks again,
The Coot