Tag Archives: depression

Constructive Criticism

A few weeks ago, I found myself leaving my flat around 12:30hrs for a hospital appointment. Such is my norm, my chosen mode of transport to achieve this was a taxi. Unlike other people, I rather enjoy the occasional natter with a taxi driver. I should be clear that this is not because I am starved of stimulating conversation, it is just because I like to talk. So, I go in the taxi and said something like “oh, it’s a nice day isn’t it?”. I did this for two reasons, the first is because I am British, and the second was because it was a nice day and it was the first time that day I had seen the shining sun. It turns out, that making these comments was a mistake.

It was a mistake because the driver then spent the next 20 minutes or so telling me that I needed to be more active. Not only did I need to be more active, but I needed to ensure that I was leaving my flat before 12:30hrs everyday and that it was crucial that I continued to keep my mind stimulated just as much as I keep body active. I know, I know, I am missing some key parts of the conversation in which I told him I had cancer. However, I think asking to go to the Macmillan Cancer Centre in the middle of a week day, let the cat out of the bag.

I can take a fair amount of criticism. I am pretty sure that in my early twenties, I wasn’t always the lovely human being you see before you today, so I endured the odd bit of unsolicited insight into my negative personality traits. A lifetime of being overweight, also prepares one for having a thick skin against people who feel like they would know better than me on how I best live my life. These days, in the days of the head tilt and sympathy, criticism levied at me, at least to my face, is surprisingly rare. If I do receive any, I usually let it float over my head like I do with the majority of negative thoughts.

That said, there is one subject, a rather broad subject, that I think nobody has a right to comment on, and that is how I manage My Myeloma. I guess, given the percentage of my life this takes up, I also do not appreciate any critiques on how I currently choose to live my life in order to make it through my treatment.

The taxi driver did not know all of this, it was the first time we had met after all, but what he believed to be a throwaway conversation with a cancer sufferer, I found to be deeply insulting and naive. Above anything though, his comments just really, really pissed me off. I know they pissed me off because I am still thinking about them today and they made me think of other similar comments that have pissed me off since I was diagnosed. It has also made any similar comments made to me since, fist clenchingly annoying. It has all led me to believe that there is one golden rule of people dealing with me and My Myeloma; unless you have something positive like ‘wow, I just do not know how you do it’, or something with concern like ‘how are you doing?’; do not say anything about how you think I should manage my myeloma. You are not me, and as much as I recognise the care the comments stem from, nobody but me lives with it 24 hours a day. Everyday.

Although I sound particularly dogmatic on the subject, it is not because I am ungrateful that people are concerned about me enough to say things that they think will benefit me in my quest to survive. I am not ungrateful. I like to know that people care. The truth is, there is nothing people can constructively say to me about myeloma, or say that is just a blatant criticism of my behaviour, that I have not thought myself at least ten times over and tortured myself at least ten times over in the process. You can be damned sure that the arguments I have in my head about how I should behave, are far worse then anything anybody can say to my face. After more than two years, I have learnt that managing my own criticisms is hard enough and I do not need others dredging them up out of their own altruism, care or in the odd case, meanness.

On one side of the coin, I give myself a pretty rough time about how long I stay in bed, how little I spend in bed, how long I stay in the flat and whether it is sensible to leave the flat. On the other side of the coin, I pride myself on how, despite my many misgivings about the length of time I spend in bed and in my flat, I still manage to get out of bed everyday. In getting out of bed everyday, I also pride myself on how I still manage to hold my head high when I need to stay in bed.

The pride I have in my own behaviour means that any comment or criticism does not just feel like a mere comment or criticism. I feel like it is somebody attacking my core being, something they may have an understanding of, but they will never truly understand because they are not me. In this, I include fellow myeloma sufferers who overtime, have told me how I should feel when I do not feel that way. Once, somebody told me the side effects I was experiencing post multiple Velcade injections could not be happening because they did not experience them. We are not the same. I also include friends, one of whom, I discovered put me through a rather difficult time during my remission because they felt that I had not expressed my gratitude enough for their kindness in my blog. Trust me, for a few minutes on most days I worry that I will never be able to show enough gratitude for the way the majority of my Support Network have been there for me. I did not need the silent treatment when I was trying to move on and up in the real world, to realise this. It set me back.

The most irritating comment is being told to get out of bed or off the sofa and that doing so will make me feel better. It’s not a malicious comment of course, but it is one that seems to negate the work I have done to allow myself to stay in bed. The work I have done to know when I need to stay in bed. I would not have been able to say this a year ago, but I know now that when I stay in bed, it is because I physically need to stay in bed. It is not because I am depressed and it is not because I am lazy. I am talking a lot of drugs and I endure daily back pain.

I am strong, but I am not infallible.

Everybody is always going to have an opinion on me and my illness. Selfishly, when these opinions go against my own, I take offence. I bruise from it and I have been battered enough by My Myeloma to sit at home worrying that others think that they could manage this better than I do. The comments make me doubt myself and they make me doubt how far I have come from the naive 28 year old in the hospital bed on that fateful Friday afternoon.

And do you want to know how far I have come? Right now, I am able to watch a medical television melodrama. I am able to think about my future good and bad and I am able to detach from it when I need to. My next sentence makes no sense, but I did this by myself. I did this all by myself, just with a teeny bit of help and love from those around me.

It’s My Myeloma after all.

If you must criticise something, tell me I need a hair cut or do what Mamma Jones did the other day and tell me that I need to trim my nasal hair. I can take that. Just.

EJB x

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That’s Life

The lyrics to ‘That’s Life’ keep going round and around my head. It’s okay, I know what you are thinking, how trite. It’s trite because it is trite. Did Frank Sinatra really just pick himself up and get back in the race, every time he found himself flat on his face? Or is that just what he, and the thousands of imitators told themselves they should be doing as they drowned their sorrows in whiskey, killing more and more of their brain cells whilst emptying their wallets? That song makes it sound so easy. You have a bad time of it, but you just get up and fight again. At least I think that is the correct interpretation. I do not want to be dead by July. We’re in July.

I have always seen myself as fighter. The silent, mystery sort of fighter, but a fighter all the same. First time round, My Myeloma brought the best of that out of me. It was my badge of honour. Giving up, not fighting, collapsing, were not an option. Occasionally, I would bawl into my pillow and produce copious amounts if snot, but never did I ever really think that there was no point in attacking myeloma with all my might. When I could not get out of bed for days on end, the time I spent 90 minutes sweating through my clothes in Mamma Jones’s wet room as I tried to force out a week’s worth of faeces as my mouth repeatedly salivated tin, when I could not bend down to reach my oven. Never once, did I think there was no point in my trying to achieve what were, in essence, very limited goals, Back to the song, I did think it was worth a single fly, and so, there was absolutely no need for a big bird or the thoughts of me not trying. I just did. I just carried on. I’m not sure who I was racing, but I did not want to lose, so I got up. Again and again and again.

If you have not sensed it already, I do not currently feel like fighting. I do not feel like doing anything. Correction, I feel absolutely incapable of going anything. I feel alienated. In the last week, my sum of achievements have been extremely limited, and to make myself appear slightly better than I have been, I will include organising my weekly drugs as an achievement. I also got on a 45 minute train from London to Peterborough. That is it. It’s not a feeling I am used to, nor am I relishing in enjoyment from what others might consider to be relaxing. I am not answering my phone. My phone is a connection to people’s lives who are not bogged down in myeloma, guilt of having myeloma and the knowledge that there will be at least another two years of this.

Since Thursday morning, after I achieved my first night’s sleep since Saturday, I have slept and cried. Cried and slept. And flipped/reversed it again. I have been absolutely incapable of anything else or any other thought. I have attempted to watch the big shiny box at the end of my bed, but I just fall asleep, or I start crying. It is possible to do both, I have tried it. I have gone to bed telling myself that the next day will be an improvement, but it is not. I see no point in it. I see absolutely no point in any of this. Let us just be thankful that I continue to shower.

I am wholeheartedly angry with myself for my current mental state. A relapse, this relapse, was an inevitability. Earlier this week, I think I knew this and I felt like my stoicism that has been my good friend this two years at least had returned. I do not know what has changed, maybe it was missing my friend’s funeral because my body was too weak to walk. I currently have no strength to fight. I want to sleep. I want to go to sleep for a really long time until I can wake up, have this be over, or more realistically, be strong enough to get myself back in the race.

This was an inevitability, so I do not understand why I am so shocked. I do not understand why I am mourning so much. Most of all, I do not understand why I am allowing any head space to the thoughts that fighting is just a waste of time and that I might as well let it take over now for it will save more grief and money for everybody in the long run. I’m not ready to fight yet. I am not ready to see people tilt their heads at me and for me to be jealous at them for being able to tilt their heads. I do not feel strong enough to find a current middle ground to the life I had a month ago and the one I have now. I cannot manage the responsibilities.

It’s folly I tell you, folly. I do not want to die. Nor do I want to give up. I just haven’t quite worked out how I can do these things, when I feel like I have been kicked in the gut and had my life stolen away from me for the second time.

This is temporary. It has to be. That’s life, after all! I’m definitely myeloma’s puppet, pauper and pawn, right now.

I think there are people out there relying on me to find my strength. I am most definitely one of these people. I just really do not know if I am ready for that yet.

Can somebody else please change my tune please? I do not want a drunk somebody singing this to me, tie undone, as my only option.

EJB x

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The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

☔☔☔☔☔☔☔☔☔☔☔

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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Mountains and Molehills

I thought that my time off would be easy. My body is not undergoing any treatment, my energy levels are high and I am no going to the Centre every day. It sounds heavenly and I am sure that there are many people who think I am fine. The truth is, that this time has been far from easy.

I cannot really say how difficult I found my diagnosis and PADIMAC, I know I did, this blog tells me so…. I can say that I have found this limbo equally as difficult, though fortunately, over the last week, I have been able to come to terms with the challenges I have faced, both actual and manifested.

A bit of time off is a gift. It’s true in general life, but when one is undergoing cancer treatment, a bit of time whilst you are feeling well is more than welcome. A bit of time. Six weeks off is too long. I constantly feel trapped, I feel trapped in my flat, trapped by my body, trapped by the schedule and trapped by my situation. I have gone from having a full time job and an active social life pre cancer, followed by a hefty treatment schedule, to nothing. I wake up everyday and find motivation difficult. While somedays I do have plans, this limbo has seen me spend a lot of time by myself. More time than I care for. I am no mathematician, but I wager that on average, I spend 80% of my days alone. As boring as PADIMAC was, I saw more people than I do now. I had drivers, nurses and Macmillan Support Workers to bug when I had conversation aplenty. I’d store it up and unleash the beast. In the last six weeks, I have found myself in frequent conversation with myself. We get on well, but it is easy for us to create dilemmas. Us Geminis really are drama queens.

I find myself now, yearning for the end to this volume of My Myeloma. It’s more of a fantasy. I spend this limbo fantasying about all the things I am going to do when the myeloma is sleeping. I look forward to things. I have one target right now and that is not making sure I get out of bed before midday or ensuring that I have some structure to my days, the target is just to be normal. Try as I might, this time, although it offers glimpses of normality, it doesn’t offer me everything. I am restricted by my mobility, by my funds, by the schedule and my My Myeloma. I want everything. I am excited about the day when things get back to my new normal. EJ plus myeloma. I’ll make it work, I just cannot make it work right now.

I make plans in my head and these I look forward to. I look forward to a life where the main protagonist is not medicine. Medically, at this moment in time, I have nothing to worry about because nothing is happening. Now, if there is something or I perceive there to be something afoot that can effect my plans and my return to normality, I am devastated. I mean, snot everywhere devastated. Things that previously would have been a minor hindrance or detail, represent the end of something gigantic and dashed hopes. Predictably, this makes me susceptible to making a mountain out of a molehill.

I do not think I am creating mountains at his current moment, but two weeks ago I was. Whether it was a change to my job or my insecurities at what My Myeloma has done to my relationships, the effect is exaggerated in my mind because I have nothing else to focus on. More often than not, things are quickly resolved and become mere folly. I need to learn that the sooner I vocalise them the better. I need to not let things stew, but I do like a stew, just ask my slow cooker. It’s just difficult when there is nothing else…

Fortunately, the end of his limbo is nigh. The time when my transplant is my priority is looming and frankly, we cannot wait.

EJBs x

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Not Depressed, Angry

I have thought a lot over the last few weeks about my state of mind. When you have cancer, if you are ever unfortunate enough to be the one in three people to get cancer, it is a question others will ask you about as well. How are you, mentally? they will say and if you are like me, you’ll respond with a ‘fine’ or ‘good’, or if it is somebody you care about, then you might say ‘shit’ or ‘fucking awful’. I find that the F word adds emphasis to this fucking shit situation. See? By adding the F word, you know I really mean it.

I have had three counselling sessions now, and they are proving to be a helpful outlet for me to express my feelings about My Myeloma. Indeed, during my recent and prolonged dark patch, I have found it invaluable. It is not a quick fix, but I do find it is an excellent way in which to excuse my poor behaviour. I will get back to this later.

I have established that I am not depressed. I may have, during the darkest times, thought and talked about death. On one occasion with Mamma Jones, I talked about suicide. I did not mean it. I do not want to die. I just want to get that out there now. I do not want to die. I have said it again. I discussed this with my counsellor, because it worried me that I said it, and I was told that this was a normal response and that I am not depressed. Do you know how I know that I am not depressed? The reason I know I am not depressed is that there is always a catalyst for my Bad Thoughts. I am not constantly walking under a cloud of self loathing and melancholic hatred of My Myeloma. I know that this is a good thing. There are days when I am a jolly old bean, and clearly, a cancer riddled hoot for people to hang out with. They’re banging on the door right now.

My Bad Thoughts come when something has pissed me off or upset me. The thoughts may linger, but they are never a constant. What you will find with me, is that I am angry. Really angry. I am learning how to contain this anger, but there will be times when I cannot. As my counsellor said, my thoughts and feelings are going to be like a revolving door as I continue to fight the myeloma. Sorry Support Network. One minute I could be fine and the next, something will trigger my anger, and I will be upset and appear depressed to the untrained eye (including my own).

The trigger does not have to be anything of substance either. Last week, I got upset and angry and consequentially professed to my dear friend that ‘I hated my life’, because I did not know something about another friend and I would have done had I not had cancer. I was actually embarrassed afterwards about my childish response. It was none of my business anyway. So I mentioned it to my counsellor and she said that it was an acceptable reaction and it was my way of voicing my frustration for a part of my life that I have lost. (To note, I am uneasy about using cancer as an excuse for acting like a bitch).

My Myeloma has taken so much away from me, big and small, that inevitably, this is bound to make me angry and it is bound to make me cry. The anger is not going to go away. It is another thing I have to accept.

Every time the myeloma throws something at me that I do no like and I do not want to hear, I am going to act out of character and essentially have a hissy fit. I was discussing this with Housemate the other day, and he has very kindly offered to tell me when I am acting like a bitch. I need this. Although it is good for me to vocalise my frustration, I think there is a fine line between that and bitchiness. On the occasions where I do resemble the female dog, my anger is likely to be mixed with jealously. Jealously that people can leave their house on the weekend, jealously that a lot of people do not need to know what neutropenia means and jealously that people can carry on with their lives. I have to find a way of channelling this anger so I am not mean. I do not want to be mean. I need friends at the end of this. If I do happen to take my anger out on other, I will use the steroids as my excuse. ‘It’s not me, it’s the ‘roids’ I will say, and if that fails, I will start crying and say ‘I have cancer, forgive me?’. It is the cancer’s fault anyway.

Apparently angry people can also manipulate.

I am not going to go on; it’ll become repetitive. In a nutshell, there are going to be days when I think I cannot handle what is happening to me and my Support Network, and I will have to deal with these as they come. I cannot prevent things from upsetting me and I cannot completely prevent myself from being sad. After all, my life revolves so much around My Myeloma that everything seems magnified. Small things become huge and big things become gigantic. Knowing, however, that these maudlin moments are just moments, helps me. Depression will not become my constant. My witty banter just could not take it.

EJB x

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