Category Archives: Anger

My Finest Hour

Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog.  I am far from finished with the blog; that was clear. What was not clear, was how I was going to rip off the gargantuan plaster covering my keyboard and get my thoughts to screen after such a long break and such a massive development. I know I have been neglecting this blog, but do not think I have not been thinking about it. Every other day I look at the WordPress app on my phone, a reminder of my world and I challenge myself to finish a blog that day. Clearly that failed. I get distracted. I probably had to wash and focus on my fluid intake. I am all so easily distracted. 

Where was I? Yes, the story I am eventually going to to tell is far from being hot of the press. In terms of speed, if I were a missionary in Africa in at the start of WW1 writing home to tell my family I had fallen in love with Humphrey Bogart, the news of said union would probably have found its way to my family long before I could find the words to explain the last few months of my life. 

In my defence and I have a big one, the last few months have been an exhausting and confusing blur. Contrary to what it may look like, I have very limited free time. My main priority has had to be me working out how I feel and how I want to hold myself, which is closely followed by doing daily tasks like washing, eating and forming sentences. No mean feat, all things considered. 

To produce something, something not soaked in self pity and embarrassment, it was impossible for me to immediately put all of this in my blog. Please don’t misinterpret me, I have a lot of words in my arsenal, I just do not seem to have the capacity to put them into any form of working order with a hint of wit. My Myeloma has dumbed me down. I have had a strong  will to write it, but at each start attempt, if I managed to get any  further then the first sentence by inner monologue would start  singing a tune of my own creation called “Blah” or I would want to play at Candy Crush and think of nothing. The words would the be lost and more often than not, I then fell asleep. I would then wake, I may be sick and then the cycle starts all over again. It’s an invisible pressure that only I see. I am all too  aware that I will get a crispy clear clarity once my words are published out in the Internet ether, but it’s just being able to get in there…

So yes, your forgiveness is something I ask for. I now recommend that you buckle in tight for this is going to be a long one, for this, all of this, has been anything but my finest hour. 

My last blog post was a boast, it was not even my boast, it was a boast made by a Medically Trained Person. My life was on track, I’m not sure what track but I was moving in a direction with less drugs, regular stools and finances. I had trepidatiously allowed myself to think more than a month a head. I was moving in a direction that excited me, secretly hoping for and  releasing my grip on the thought that My Myeloma was never far away…

As it turns out, I was not far away. Some time after the ‘sweet spot’ comment, I went to St Bart’s for a clinic appointment that I thought nothing of other than my attendance was a requirement. I had become comfortable and my guard was down. Imagine my horror then, when after a lengthy silence and grimaces of concern, the Medicaly Trained Person told me that after months and months of nothing, I had a paraprotein of 4. I don’t really remember what happened after that. I know we discussed scenarios and she tried to but a positive spin on it, but I knew there was only one direction for this development and it was not an error on the test. I had felt it in my bones for weeks but I had been reassured that my new pain was nothing to worry about.

In that morning, I did not cry. I stopped talking. I had one desire after that appointment and one desire only, and that was to get home. Unfortunately, I had to queue for an eternity at phlebotomy and then at the pharmacy before I  was allowed to go home. By the pharmacy, my tears were involuntarily coming and it remained that way for several hours. By the time I had walked in my front door and tried to get the words out to Housemate, I was on the floor. The guard was truly down.

All the fear I had about this being the worst relapse I would ever have, the relapse after the hit and hope of allograft, came out of me that late afternoon on my hallway floor and then in my lounge  and I have been dealing with fact ever since. 

It’s Failure. I feel like it is one big failure. I need to be absolutely clear on this point, the fault is not my donor’s, My Big Sistee’s. She did everything she should have done and more, my body just failed me.I feel like I failed her and everybody else who was hoping for a happier ending for me. I even feel like I failed the people not wishing me well. Trust me when j say that this is not hyperbole; I  was and remain devasted. 

The weeks that followed were bad. I had slipped deep into a black hole. It was the deepest, darkest pit of a black hole that I tried to keep to myself. I was so embarrassed by this happening once again, dominating lives once again,  that bar a handful of people, I kept all developments to myself. As well as worrying about losing my life, I feared this would be a development that would lead me to losing people. I have to be in bed by 09.00pm for goodness sake and I cancel my plans all the time. 

I had to wait for what felt like weeks, but really it was only a matter of days, to find out how bad it all was. I fixed my thoughts on it spreading, questioning why my pain had increased so dramatically, so quickly, self diagnosing secondary cancers with aplomb, and then plotted what the next steps would be, all without talking to a Medically Trained Person. The 2016 I had envisaged for myself was quickly slipping away from my grasp. 

For the first time since all this started over four years ago, I asked myself whether it was all worth it. I questioned whether I wanted any treatment at all. I didn’t know what my treatment would be. As far as I was concerened, in my darkest thoughts, I was on a one way track to palliative care. To add just that extra bit of sweet icing to the cake, I was also managing a fast deterioration of my bones. The pain was constant and restrictive;  and  included no bending, assistance required getting out of bed and off the toilet and no picnics to name but a few. I still worry about travelling long distances along in case I get too tired. I have once again lost my independence and I didn’t feel like I could share it with anybody. It was too sad.

I couldn’t talk to anybody about this. Perhaps the scariest thing of all were my thoughts about how I would die both naturally and unnaturally, as I tried to decide which option would be best. In those never ending says, all I could see for my life  was the at some point soon, not too far away it would end. Perhaps you can understand why I did not want to blog about this. Counselling, lots of counselling had to come first. 

I have always been realistic when it comes to my treatment, but I dropped my guard when I heard the sweet words of the ‘sweet spot’. There is no way of knowing if I would have handled it all better if I had been better prepared. If, during bouts of down time, I had not allowed myself to day dream about usual 32 year old stuff, maybe not the babies for I am a realist, but I would dream about independence, love (I’m talk under-the-covers-kind) and just living. I thought and planned for a life where I was not just going through the motions of my drug regimen. 

I could not then and still can I not see how I can reconcile this with relapsing. All my peers are moving in one direction, their direction whilst I feel like a am treading water until the day I am told that the Medically Trained People can do no more. There are times when I feel I am  the saddest, poorest spinster, adult child that there ever has been. I know that the more drugs I take the harder it will be to keep hold of my former self. There will be more staring into space as I try to follow a conversation and more Friday night’s out longing for my bed by 7.30pm, afraid to tell my friends that I am struggling to hear what they are saying.

All the time I was fighting the peak of battle in my head, I was being poked and prodded and then waiting for the Medical Trained People to give me the low down. To be precise, give Mamma Jones or Housemate the lowdown; I was in no fit state to hear it myself. There was too much waiting. I was in what can only politely be described as a heightened sense of anxiety. Looking back, it is a wonder I held it together as well as I did. Potentially, I thought that each test would show  that I was on a priority boarding ticket to the kicked bucket, but alas, that was not the case. My biopsy result did not have any active cancel cells in it, which even my brain worked out was better news than cancer being present. My scan did show new disease in my pelvis, both hips, both arms, both shoulder blades my ribs and in my cervical spine, but as far as I know, there was nothing requiring urgent attention. I have been told to be very careful, which means no lifting, very limited walking and no picnics. I could add more to the list, but I conscious of my word count. Just imagine an even bigger loss of independence.

I mean no disrespect when I say that the only  good thing to come from all of this is my transfer back to UCLH. The reason for the transfer is related to drug funding. One should never underestimate the benefit of being able to email a Medically Trained Person and have them respond to you and make you feel worthwhile. I feel safe at UCLH. I emailed the team at UCLH to inform them of my relapse and do you know how long it was before they had phoned me to see if I was coping? 15 minutes. That makes all the difference to me (KEEP OUR NHS ❀️!).

We now quickly and smoothly enter the next phase in my treatment. I like to call it the brain altering, stomach churning, sick phase or to put it more simply, The Drug Phrase. I have limited say on my treatment and I am happy with this. I trust my Doctors to prescribe me the right course of treatment. That is not to say that they have not been  without their teething problems. Did I mention a propensity to vomit? 

I am currently on a course of oral chemotherapy supported by a four weekly dose of Zometa for my bones. I am on a daily tablet of Revlimid, a weekly tablet called Ixazomib, which is basically an oral form of the Cilit Bang I was on in 2013-14, all washed down a healthy dose of Dexamethasone or steroids to you and me. I had increased my MST to 120mg twice a day to manage the pain, but became so constipated, I could not eat and the side effects became worse than the pain itself. Got it? With my supporting meds included, I am currently on between 24-40 pills a day. My first cycle was intolerable. I got into bed on a Monday and walked out of it a fortnight later and 8kg lighter. The following cycle was easier to bear, but nothing can remove fatigue as the unpredictable ruler of my life.

For the unitiated reader, the fatigue I have with chemotherapy goes far and beyond me feeling a little tired. At it’s worst, I cannot move, I cannot sleep or I oversleep, I fall asleep with the cooker on, showering takes two hours due to rests breaks and I have no capacity for a challenge. A slight problem to you, is a huge, gigantic issue for me. I once earned a fairly respectable BA and last week, I spent at least 10 hours fretting about how I would zip up a dress in a hotel. As a consequence I increasingly find myself going from docile to dogged in a matter of seconds. My fatigue gives me anywhere from 30 minutes to four hours of ‘good hours a day before I have to crawl back on my bed or the sofa. The beautiful part is that I cannot predict when or where it is going to hit.

I could go on and on about my recent experiences and do not worry, I will. I have now brown the seal. I already have a fairly detailed analysis of my bowel movement coming your way soon. For now however, I will end this blog. 

I will however say this, the day I started my treatment, the first day I took my new regimen I had no doubt in my head that I was going the right thing.  There was no doubt. I felt empowered. If I have taken one thing away this last four years it is that my illness is not just about me. I do not know what the future holds, but I know that I am not yet ready to let things happen without me. There will be days when I will doubt this, the feelings of ‘woe is me’ are inevitable and healthy. For me, right now, I am glad I was just given had the opportunity to regurgitate last night’s dinner. I am glad that I am likely to spend all day in bed feeling like I have been hit over the head with a sack of potatoes. I’m not glad about all of this because nothing remotely fun is going to happen with my day. I am glad because at some point in my near future, I will be able to do something worthwhile and right now, that is the only thing I can ask for.

EJB x

P.S. For all those myeloma sufferers out there; this works for me. This is my story. Please do not feel like I am telling you how to behave and do. You follow your path.

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Self Preservation

Yesterday I had a productive counselling session. They are always productive, but I just thought this one was particularly useful. Let all of us go to counselling. The world would be a better place.

Firstly, my counsellor has given me license to be selfish, accept I am not allowed to call it that. Apparently, if I start thinking that me not answering my phone or replying to a text message because I am too tired, depressed, to have guests or just enjoying myself, is selfish and something innately evil, I will feel guilty about it, upset myself and wind up exhausting myself. With the added hormones I am taking and the general trauma of having cancer, this is not a good thing, but it is a situation I frequently find myself in. If I have interpreted yesterday’s discussion correctly, I have too few healthy days to worry about upsetting others, although I always do. My counsellor says that now is the time to be looking after me. I have been trying to learn this now for three months and it is slowly sinking in. Of course, she is not the only person to tell me this, many people have mostly men. In my counsellor’s opinion, Housemate’s views on this particular matter are a good gauge on how I should behave. That gives him a lot of power; when I said this to her, she appeared to find it amusing.

That said, I do feel ill mannered if I do not contact people, especially when I expect them to contact me. I expect a lot of people to contact me. I need it. Welcome to the one way friendship. The fact of the matter is that sometimes, mentally or physically, I am not capable of doing it, doing the roadshow and reliving everything shit that has happened in the weeks previous. It is too exhausting and too painful. I can understand somebody being upset with me if I am not there for them to talk to me about their problems when they are sad. The key thing to remember is that I always make contact, just on my schedule. I do not understand someone being upset because I am not available for them to talk to me about my problems. I live with this everyday and somedays, I cope by trying not to remind myself that I have myeloma. The key thing to remember is that I will always make contact, just on a schedule that is not of my making. Do not begrudge me this.

Secondly, we discussed the unknown and how I should be dealing with it or not, as the case may be. Pretty much, she agreed that I am managing it as best I can at the moment, in manageable, bite size chunks. I cannot fret over what is going to happen in six months or next month, with my treatment, my hair, my pay and my life. It is out of my control. Put it another way, I am currently living within this three week cycle. At this moment in time, I do not know what is going to be happening to me past Day 21 of this cycle, meaning I cannot plan anything and manage the what ifs. I do know what is going to happen to me now. I know that I will experience the worst fatigue I have ever known in three days time and that this will last a few days accompanied by emotions heightened by my steroids, I know that my immune system will be low the week afterwards and then I will feel better. This is what I can reasonably manage and manage I will. Anything else will be dealt with later, I just need to keep reminding myself of this. No fretting Emma Jane Jones… No!

Now, to the talking next point, which I am rather fond of, be warned, it contains a metaphor of sorts. Four months ago, if somebody had said this to me, I might have laughed in their face. I certainly would have done so behind their back. Not any more apparently.. I hope that this does not make you spit your tea at your computer screen in guffaw. If it does, please try and remember it in case you ever see dark times. Right then, are you ready for softy softly? It’s coming… Deep breath.

My counsellor says that I have two cylinders. On one side, I have the fatigue and depression cylinder and on the other, I have my happiness cylinder. On Day 1 of my cycle, the former will be empty (realistically, there might me a dribble of gas leftover). The latter will be full because I have enjoyed the time off that Days 11-21 offer and lived as much as I can in those ten days. The happiness cylinder then acts as a reserve as I battle through the worst of PADIMAC and will slowly empty, ready to be refilled from Day 11 onwards. The bad cylinder works in reverse, that cheeky bugger will fill up in the next few weeks and then from Day 11 onwards, I have to make sure I am happy enough, so it cannot help but deplete. I find this beyond reassuring. I have cancer, you cannot laugh.

Lastly, I mentioned to my counsellor that I find issues and potential issues which are not myeloma related, are magnified, the importance and weight are magnified in my brain. I cannot help but worry and stress over things and because my life is My Myeloma, everything that is not the cancer, seems more important somehow. I have already mentioned above how I should manage these dark thoughts, whether I do in all cases is a different matter. A great deal of it is irrational; did I say something stupid? will people think I am stupid? should I have used ‘in’ instead of ‘for’? what is he doing? why haven’t I seen them for five weeks? is it because I am no fun now? The list goes on. As long as the lights are not out, I can manage these. I struggle over people thinking that I am rude or ungrateful. I hope that I am neither and if I appear to be, it is not intentional.

I have to remember that for now, I am number one, oh and everything should be taken and dealt with in bite size chunks. It’s the only way to live.

The counselling really is a good idea.

Head High.

EJB x

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Reality

It would appear that my reality has started to set in.

Everybody knows what I have now, they have all let me know that they know what I have and thus the cards, calls and gifts are rightly, slowing down, I have an established regime, I have started my counselling and now I have time. Time to think. Time to register. Time to let My Myeloma become my reality. FYI – I have even more time now because my treatment has now been put back by two weeks for two reasons, firstly to allow my body to get over the stupid common cold and, secondly to allow my body to get over next Monday’s radiotherapy.

So, I now have time for the first time since I was diagnosed, to think properly about My Myeloma, what it means to me and my life, and pretty much to acknowledge just how shitty it is. It is, quite simply, shit.

I have had bad days before and I have shared them, but I have been running so fast, trying to catch up that I have not really stopped. Stopped to think. Everyday I have been doing something, keeping busy. I have been so busy catching up with myeloma, catching up with my treatment, catching up on sleep and catching up with loved ones, that I do not think I have given myself the proper opportunity to dwell and to let my diagnosis sink in. By now, I understand what myeloma means, I understand what my treatment involves and I most definitely know that my loved ones love me right back. The sleep is another matter. I do not think, and this was quite apparent during and after yesterday’s first counselling session, that I have fully accepted My Myeloma and all that it entails. My Myeloma effects everything, big and small.

Let’s get a few things straight. This is not me being negative. I am not a negative person and I strongly believe that in order for me to tackle this and take it downtown, I need a positive outlook. I cannot think that things are going to fail and I feel guilty that for the last 6 days I have thought that they will. Regular readers may think I am schizophrenic. I feel like these thoughts are setting me up to fail. Sod Bad News Wednesdays, I cannot let these current seeds of doubt become My Self Fulfilling Prophecy. I have spent 50 days trying so hard to be positive for myself and others, that I have only allowed myself to graze the surface of what can go wrong and to acknowledge just how much my life has been irreversibly changed by My Myeloma. Prepare yourselves, if you are emotionally free, grab a hankie, because right now, I am going to be self indulgent and I am going to whine and I am going to say the things that scare me. I need to say these things in order for me to process, manage and accept My Myeloma.

πŸ˜„ 😁 😳 😭 πŸ˜ͺ ❀ πŸ’” πŸ‘ͺ πŸ™ πŸ’€

I do not want my current treatment to fail, but I have to acknowledge that this is a possibility. If this happens, I have to undergo another treatment and if this fails, another. If there is one thing my doctor’s have made clear in recent weeks, My Myeloma is widespread, so failure is a possibility. My current focus has been and still is, getting through PADIMAC successfully, but I need to know that this may not happen.

I plan, once my paraprotein level has reduced enough, to have the donor stem cell transplant, in spite of the mortality risks and in spite of it going against the principles of the trial. My Myeloma is mine and if the transplant is successful, it will give me the best possible prognosis for life. I do not want to die during this treatment. I do not want it for my friends and family and I most certainly do not want it for myself, but I have to acknowledge that this is a possibility.

I do not want my treatment to make me infertile. I want children. I have always wanted children, and words cannot describe what the thought of not being able to have them means to me, but once again, I have to acknowledge that this is a possibility. I have not researched it, but I do not imagine that a person with MM would be a strong candidate for adoption. I am slowly preparing myself for this and I have an appointment with a fertility doctor, which I am sure will be a real hoot, and if the news from that appointment (and realistically, future appointments once I am in the clear) is bad, then I have to be prepared. Fortunately, on this point at least, I do have a contingency plan courtesy of Big Sister and for that I will be overwhelmingly and eternally grateful.

I am 28 years old. I want to be able to do all the things other people my age, correction, age bracket, are doing. Everything is stalled. I will hate myself for writing this, but I want to fall in love and have that person love me back and you know, love me enough to actually take a leap and decide to be with me in spite of the disease (I fear, in the future I may use My Myeloma as a reason why my success in this area is limited, actually, that is pretty much a given). I have to acknowledge that the pool, sorry, I meant pond, of available singles enamoured by my wit, will be dramatically reduced to, lets say a puddle, because I now come with baggage. Actual Baggage. I am not talking the baggage of a bad breakup here; I come with a lifetime guarantee of cancer. I have also stated in the paragraph above that I want children and I hear that puts some people off in the early stages of a relationship, so…. I have to acknowledge that there is a possibility that I could become a barren spinster with a lifetime guarantee of cancer.

I want the Cancer Roadshow to stop and the very occasional pity parties to stop. I am strong and I really do not need pity. Support, yes. Well wishes, yes. Love, yes. Pity, no. Though I would be the first to say that I cannot force everyone I know to read this blog, so the roadshow, will have to remain for the time being. I also want to be able to distinguish between somebody being nice to me because they like and/or love me and not because they are doing it out of a sense of duty and/or pity.

I do not want to be in pain for the rest of my life. I want to be able to go to Alton Towers and enjoy Nemesis and I want to be able to pick up something heavy. I have no idea what my doctor meant when he said my pain was ‘chronic’, but I do not want my pain to be something I think about everyday for the rest of my life, when just three and a half months ago, I was told that my pain was a pulled or torn rotator cuff. How could that ‘rotator cuff’ now become a lifetime of chronic pain? I do however, have to acknowledge that this is a possibility. That said, I will tell you something for nothing, as soon as I am in the all clear, I will explore every possible medical option to improve said pain via treatment, so that I do not have to rely on painkillers to function. Every fucking option.

At the moment, I feel like My Myeloma, the cancer, is swallowing my identity. I, somewhat egotistically, am proud of my personality and I am proud of the relationships I have built during my 28 years. My Myeloma however, seems to want to be involved in every aspect of my life right now and I hope and will that this situation is only temporary. I have said previously that the illness does not define me and I know it doesn’t, but everything I am, everything that makes me me, seems to be tied up in this sorry mess. Cancer is slowly taking parts of me away that medicine cannot stop. The fact that I can cry at the click of a finger for example is something that never, ever would have happened pre diagnosis. Talking about and showing my feelings full stop is pretty novel for me. I know and I have said it before, but I will say it again, I have to accept that myeloma is now apart of me but it cannot define me. For as long as I am alive, I have to ensure that this is the case. I will not give on this fact.

I have to acknowledge that I could die. My Myeloma can kill me. In all likelihood, my death will be caused by the disease. Before that time comes, I want to be old. When I say old, I want to be a retired Granny collecting my Civil Service pension (hmmm), living in a house I own, a house I bought with my husband with photos on the wall of our life (said photos will include the members of my wonderful Support Network, obviously), with my cancer scrapbook collecting dust in the loft. I have to acknowledge that this might not happen. I am 28 years old and although I was told not to look at the stats because of my age, the average MM sufferer survives for 10 years after their diagnosis. I want to see the end of my twenties and all of my thirties, forties and fifties and I don’t want to spend too much of that time in a hospital. This unfortunately may not happen and I need to process this and live each day as it comes.

As for the small stuff… I want to be able to go to the supermarket by myself. I want to be able to walk a reasonable distance by myself and not be afraid that I am going to fall over. I want to celebrate all my friends’ birthdays in their venues of choice. I do not want all my skin to dry out. I do not want the hair on my hair to fall out when the steroids are making me have excessive hair in places I do not want it. I do not want Housemate to have to empty the bin every Tuesday night because I cannot nor do I want to interrupt his life my need to bring my social life into the flat daily. I want to be able to take cough medicine. I need to get my head around the fact that I can never sunbathe properly again or take ibuprofen or indeed, smoke. I want to be able to give somebody a bear hug and I do not want the common cold to become a gargantuan interruption in my life.

The icing then, on this freshly baked cake is that due to some snot and phlegm, I am now an extra fortnight from being in the all clear. The bloody common cold. I am two weeks further away from knowing whether PADIMAC is going to work for me. I am two weeks further away from knowing whether my transplant is successful. The two week delay in my treatment may sound like nothing to you, but that two weeks is a two week delay in me resuming my life and two weeks from starting the next chapter of My Myeloma and seeking the answers to some of my questions I have raised above. Balderdash!

I know that I will be positive again. Strangely, I think that this post is a part of that, it is an example of my positivity that I am able to share the inevitable lows of living with cancer. For now though, I am going to take this two weeks and let myself stop. Stop and think (oh and beat this bloody common cold).

I will use this two weeks to allow myself to process, manage and accept that my name is Emma Jane Jones and I have Multiple Myeloma, for life. I will then return to my counselling sessions, because I clearly have some, erm, issues.

EJB x

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The Common Cold

Everybody has experienced the Common Cold. It’s pretty common. I have had loads. You feel sorry for yourself for a bit and then you move on when your nose stops running. It’s fine. Bogies.
A cold when you have cancer and you are about to embark on your chemotherapy treatment? That is another story all together. For a start, you get quarantined.

😷😀😷

That’s right, today, on the second floor, I was put in quarantine. My private room, could also be described as ‘isolation’, but it really was quarantine. There was an area to clean yourself before entering the main room. Quarantine. The room could have been used as a principle location for the movie ‘Outbreak’. All because I have the common cold. To confirm how seriously they take the Common Cold in the Macmillan Centre, I was not allowed to sit down in the reception area.

😷😀😷

My immune system is normal, well it was, how do I have the common cold? People in my Support Network should not feel guilty, I know Housemate does, it’s called the Common Cold. It’s pretty common. It’s nobody’s fault. I could have caught my runny nose and sore throat from any old dirty person on the street. Actually, the person could have been young. Who knows?

😷😀😷

In my quarantine, I saw a doctor and I was told that as I had a cold, I could not start my treatment this week. I tried to reason with her, I do not want a delay, but no, no chemotherapy for me this week. My treatment is going to be delayed by a whole week, this means that getting better is now going to be delayed by a whole week. Fucking brilliant…. My counselling session, really could not have come at a better time.

😷😀😷

So, I have another week off… What to do? In this current mindset? Bed and films.

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Boney Joney

I discovered today that I have been labouring under a misapprehension. Myeloma UK’s guidance was correct. I should not have doubted it.

Since I was diagnosed, I have believed that my weakened bones would be fixed after the first few cycles of my treatment. My consultant told me today that this is not the case. I misunderstood the Doctor’s meaning when he said back on The Penthouse that I would notice an improvement in my mobility after a few treatment cycles to mean that the lesions would start to mend and those lesions, which have weakened my skeleton would disappear as my treatment progressed. I learnt today that this is not the case. What will happen is an improvement in the pain. What will happen, all being well, is that the disease will not spread further and that no more lesions will appear. What will not happen under my trial, is that the existing lesions in my skeleton, localised to my back and spine, will heal, at least not yet.

Time wise, it is likely to take 1-2 years for my brittle bones to become strong again, and that may only be after further treatments. The operation three weeks ago, was one such procedure. Knowing what I know now, thank the gods they went ahead with it and I am now walking around with a slab of concrete in my back. There are somethings to be thankful for. This extended healing process means no snowboarding, which is unfortunate, because I have been fanaticising about doing an awesome 360 on a half pike for quite while now. That is going to have to be a pipe dream. I probably can’t even go on Nemesis. Maybe I can just have a nice bit of slicey and imagine I am on a theme park ride.

In the meantime, I hope and believe that despite what is happening under my skin, the pain is going to improve within the next two cycles. The Doctor said today that he thinks in this time, I will be able to rely less on the stick. Take less drugs. I should be able to bend over. Hell, I may even be able to lie flat. Flat! In time, I plan to deceive you all, walk tall, bend over and thrust my hips. It just means that unlike Shakira, my hips will lie.

It is not all doom and gloom, I promise, in the last three days, I have already seen a noticeable difference in my mobility. Tomorrow I even intend to walk, escorted of course, to Sainsbury’s.

I just wish I had not got this one wrong. I had thought that once the mobility and skeleton was sorted, all my attention could be focused on the cancer treatment. Now I have to focus on both things. Why is this disease so multifaceted? Why are the goalposts constantly changing?

Must not be defeated.

Trying to see the positive… Hello Freedom Pass. Hello.

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