Monthly Archives: March 2014

The Reluctant Complainer

In my mind, I like to think that I am not a complainer. I imagine that I am a picture of English manners and/or passivity. I worry that when it comes to my hospital, I am not seen through my own rose tinted glasses. Sure, on the rare occasion, I may have been vocal about the delays in Daycare, but only on one occasion was I shamefully rude about said delay and I did apologise for my reaction a few days later. Telling people how much they bruised you after they have put a cannula in, isn’t exactly complaining is it? By the same token, telling a few people that a Senior Medically Trained Person has poor people skills, is merely an observation.

I am worried that I am perceived to be a complainer, because whenever my life is interrupted by delays on the 2s now, at least three people apologise to me and more often than not, one of those people is the Medically Trained Person in the fancy Blue and Red outfit. It is of course polite for them to apologise, but there were no apologies to that extent when I was on PADIMAC and my treatment could take four or five hours. And so, I fear I have an unfounded reputation for speaking my mind.

Okay, I did write three letters of complaint to my GP when I was diagnosed, but that was to my GP. I am not one to complain to the lovely people who have taken care of me and continue to take care of me so well over on Huntley Street.

I mean, there was the time I demanded to see the head nurse regarding the quality of the nursing care at the National Hospital of Neurology and Neurosurgery, but that complaint was warranted, because the care they could be bothered to provide really was dire. I followed up my concerns in the ‘other comments’ section of the UCLH survey to boot. Twice.

I really do not complaint. I try to remember the manners passed down from Mamma Jones and, let us face it, I’m very passive.

I suppose my comments to multiple Medically Trained People when I was admitted to hospital during my transplant, could be interpreted as complaints. I was pooing a river and hallucinating green giant lemmings attempting to escape from my stomach by drilling holes with wooden spoons at the time.

The care I receive truly is tremendous. Everybody is super duper nice to me. I like to think this is because I am nice and not because people have secretly badged me as the opinionated fat one with myeloma.

So, as you can see, I really do not complain. I am ever thankful for the care I receive in that wonderful building on Huntley Street. It pains me to think that others would assume anything else when it comes to my being.

That said, a month ago there was an actually an incident that did require complaint. I actually complained. To this day, I feel most guilty about it and I have not stepped foot in the section where the incident occurred since. In short, My Second Favourite Blood Taking Person, whose demeanour is usually so calm and collected, shouted and swore at me whilst directing a needle at my arm. There is more to my tale, but all I will say is that it was unprovoked. I have a witness.

I was not going to complain, not because I am not a complainer, but because I feared it would make me feel uncomfortable when I make my fortnightly journeys downstairs to the Lower Ground floor. I am inherently selfish, so I did not consider the impact had he shouted at somebody else and not me, who as you all know, is as hard as nails. I eventually realised that I already felt extremely uncomfortable about visiting the Blood Test Room because of the incident itself, and when I realised that, I wanted to tell somebody simply because it should not have happened and I should not feel this way about having to have my blood taken. It definitely should not have happened in a cancer centre. The centre is not the place to feel awkward. Just ask their decorator.

I went to a magical window called PAPs in the hospital’ Tower, where I was told that because of what I was alleging, it had to be a formal complaint. And here in lies my guilt. I feel guilty for having to complain and now I am afraid to show my face, not because I fear everybody in the Blood Test Room are now going to be intent on bruising me as much as they can, which I do, but because I am embarrassed. I am very embarrassed about it all.

I am told that I will receive an apology when I next go in, that creates more embarrassment. The thought of it makes me want to convulse in an overdramatic and unnecessary way. I do not want an apology, I want it to have never happened. My Favourite Receptionist has offered to come down with me, which is nice. Clearly, I do not know if this would make me feel more awkward.

Tomorrow, I am going to go and have my bloods done and I will have to keep reminding myself that I did not want to complain. I am not a complainer. I am a reluctant complainer who occasionally does not think before she speaks. Maybe I’ll get that on a t-shirt.

EJB x

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My Most Emotive Subject

I am as good at meeting deadlines with my blog as I am currently in my work. With that in mind, let me tell you about my Valentines Day. For those unromantic types out there, the date in question was 14 February.

In stark contrast to previous years in which I have been a single only marginally dreading the day when couples show off their lust disguised as love in a sea of red because of my own traditions, I wholeheartedly dreaded the 14 February 2014. I did not want it to happen. There was no tradition, but that was not getting me down. The 14 February was the day I had to see the Person Medically Trained in Women’s Bits. To you, this means that the 14 February was the day I got to sit down six months after my transplant to find out just what it did to my lady bits. My most emotive subject.

I know, and have known for a long time, what My Myeloma has done to my fairytale dream of living to be a granny with a house full of bric-a-brac with photos of my children and their families scattered about for all my guests to see. That is a sentence that I cannot say out loud. And thus, as the day drew closer to the appointment, my dread grew along with a fear of the words I know to be true, but did not want to be confirmed. You. Are. Infertile.

The scariest part of the appointment anxiety, as this is my most emotive subject, is that I did not know what my reaction to the news would be. I had already poorly attempted not to cry in front of the Person Medically Trained in Women’s Bits on two previous occasions, so for this appointment, I thought that mass hysteria was an inevitability. Also, the doctor is something of a cold fish, which does not assist in her delivery of bad news. So, I lined up a Maurice to attend my appointment with me, which eliminated some of my concerns in the lead up to Valentine’s Day. I also strategically arranged a counselling session on the Monday after the Friday before in order to help me deal with the aftermath.

I should be honest, the appointment was mostly arranged by the lovely haematology people because of the side effects I was experiencing as a result of my menopause and infertility, which in turn, are a result of the chemotherapy I had on 17 July. For those who are not preoccupied with my life, the side effects included horrible hot flushes, a lack of flow and other things connected to moisture. Mostly the hot flushes. Hot flushes are vile. They are also embarrassing, particularly if you are obese and trying not to adhere to a stereotype.

It took four months for the department to process my referral, despite me having already seen them twice. That is a lot of sweat. I had a month after I received the appointment date to dwell and image various scenarios in which the result was the same. A fortnight or so prior to my appointment, given the efficient administrative process, I phoned the department to ask whether they required me to have any blood tests to look at my hormone levels or whatever else they look at when they are looking at what I wanted them to look at. A nurse, I presume she was a nurse, called me back and vaguely said that if they were required, they would have been requested. I objected to this, but hey ho, I just wanted to make the most of the appointment and rip off the rather large plaster that constantly itched.

The appointment arrived and, unsurprisingly, it was no where near as bad as I had imagined. Maurice was there to hold my hand of course, which was invaluable. I described my symptoms and the Person Trained in Women’s Bits confirmed that I was going through the menopause. Some symptoms I had been suffering from that I had attributed to myeloma, were apparently, also menopausal, including a weaker bladder and aching joints in the morning. I thought these things were connected to age more generally, but no, in women, it is menopause. I am sure there must be other reasons.

For this so called menopause, I was prescribed HRT in the form of patches, which I wear everyday on my buttocks. Said patches slowly release oestrogen, which will then do a whole host of things to my body, including reintroduce a period. This news came five days after I cleared out my tampon drawer, so I was annoyed.

Then there was the hard stuff. I have less than a 5% chance of conceiving. I believe this is said to protect a Medically Trained Person’s reputation in the event of a miracle, but really it means, you are not producing any eggs. I heard her words and I did not cry. My strength during the appointment astounded me, and I suspect that that came from having somebody with me who did not mind me talking about my vaginal dryness. I even summoned the strength to ask a question Big Sister had armed me with. Can I carry a child?

The short answer is yes. I can carry somebody else’s bun in my oven. There is currently no damage to my womb. A slight flicker of hope.

The long answer is more complex. It goes something like this. Yes, I can theoretically carry a child, although I am not sure what consideration would need to be given to my lesions and whether they would veto any plans to knock me up. I would also have to lose about a third of my body weight in order to get any form of IVF; this is probably no bad thing in general and would help me in one of the points below. My womb is fine now and has not been damaged by my treatment, but if I require an allograft before I can do the above, the radiotherapy would most likely destroy any hope I have of breeding. On a more practical level, I am single and I am not getting any younger. I would have to find a man who accepts my standing and decides that he would like to spend the rest of my life with me and I have had no luck so far before the hurdle of myeloma. How would we pay for it? And then, the question that terrifies me the most, if the medicine is available to me, would it even be fair to bring a child into this world when Wikipedia tells me that the probability of me living to it’s tenth birthday is slim?

And thus my dreams hover over a flushing toilet.

For this, for all of this, I hate myeloma. I may have held myself together in that appointment, but I grieve for what I have lost, I cry for knowing at some point, I may have to make a moral judgement and for the possibility that I may never be afforded the opportunity to make that judgement.

The appointment itself was anticlimactic. Like I said at the start, I knew what was going to be said, whether I wanted to hear it or not, and I think I had managed to shed my tears in private.

It has been five weeks since my appointment and in that time, I have gone through a pack of my patches. I also got frustrated when I asked for a re-prescription from my General Practitioner and they insisted that I visit them to be thoroughly assessed because the person who specialises in all things womb, had been remiss, according to them, to have not fondled my breasts. Needless to say, I found this a ridiculous waste of time and a drain on valuable NHS resources. Of course, I failed to say this to the GP. In the six weeks, my hot flushes have lessened, my nausea has increased, 50% of the time I can sleep through the night without nature calling and yesterday, I was reacquainted with my flow. It was rather novel.

As for the other stuff, I try not to think about it at all, but living in the world, one sees babies, if they do not see them, they hear about them and on these occasions, all I can do is swallow.

EJB x

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My Bonus Meds

There are times when I think I am used to the weaknesses that come with my post-transplant body. There are times when I know I am not used to my post transplant body. My post transplant body requires endless amounts of TLC and as I am discovering, drugs. Lots of drugs. Not the sort of drugs that have me reaching for the Domperidone and send to me my bed at 10.36 in the morning. I am talking drugs that seemingly have absolutely no connection to myeloma. I am talking drugs that require me to visit a pharmacy that is not located by the lift of the ground floor of the Macmillan Cancer Centre. A pharmacy where I actually have to queue with the normal people.

I am over my little trip to Accident and Emergency. If I am brutally honest with myself, I got over said incident slightly later than I pretended I did. At least I am over that interruption into my uber important life. The benefits of my transplant do outweigh the negatives, but that does not mean that the negatives do not have been wanted to unleash mass violence, if I was physically capable of such a thing, at the world. A cold for me is not a cold for normal people. I cannot plough on through, I am sent to my bed by my body and there I have to stay until my new medications have worked their magic. My post transplant body means a cold becomes an infection and that results in a visit by Mr Asthma intent on taking my breath away and knocking me right off my feet.

I know I have to get used to it, get used to the likelihood that every few months, I will be reminded quite strongly, that I have myeloma. Penicillin reminds me of myeloma. The frustration, oh my gosh, the frustration.

And so, to restrict the frequency of these outbursts and the need of antibiotic tablets large you feel like you are swallowing a hole Werther’s Orginal, my drugs drawer now contains a whole host of asthma related paraphernalia, including one of those things I have to blow into everybody morning and night. I am plotting a graph.

In addition to my breathing difficulties, there is also a sticker permanently placed on one of my butt cheeks. This medication, known as HRT, is normally reserved for women of a certain age who hopefully have used their extensive years wisely and to the full. The plan of HRT is that it will eventually stop me sweating profusely in the middle of meetings or when other people are trying to eat in my presence. It will also, I am told, prevent some of my morning aches and strengthen my useless post transplant bladder. So far, it makes me feel more nauseous than I am normally.

I am now well known at with my GP.

All this medication is designed to keep me healthier for longer, but it also imposing a responsibility that I did not ask for. It is on top of the 9 pills I have to take daily for myeloma. It is on top of the side effects I have from myeloma. It just want to be left alone. I also really want somebody to tell me where I am supposed to house all this stuff.

At least it is all free. My bonus meds.

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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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Yes/No

In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.

The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.

Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.

Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.

It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….

And now, I boast.

A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.

I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.

The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.

EJB x

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