Category Archives: Positivity

The Third Cycle

Today marks day one of my third cycle, already. Thus, today is my 43rd day on the PADIMAC trial, already. I was formally diagnosed 50 days ago today, already.

Doesn’t time fly when you are having fun? Lots of fun.

So today and for the three days following, I will be receiving chemotherapy and self administering steroids. At the end of the last cycle, it was proving difficult to find my veins for the cannula. The cannula is needed so I can receive the drugs intravenously. Why can I not have veins like Madonna? I used to have these lovely blue veins in my arm, visible for all the world to see, well, on closer acquaintance… Now, my veins have gone into hiding. This means I am going to bruise.

Later in the week or early next week, I will find out how much my paraprotein has reduced by during my last cycle. I was so pleased with my results from the first, a 35% reduction, from 40 to 26. But then, I stupidly asked one of my doctor’s whether it was a good result and his comment that it was not 50%, has plunged me into a pool of doubt. My positivity is trying to find its way back, but for the first time since I started the trial, I have properly started to think about this trial failing, about my body not completely responding to the treatment. I want it to so, so, badly. I don’t care if I do it in two more cycles or four. I just want it to work. I want the paraprotein gone. It is good to be aware of the worst case scenario, of course it is, and that is why I continue to ask the questions, but I do not want the trial to fail. I do not want to be preoccupied with the thought of it failing either. Maybe I am thinking this way because I have heard of two success stories of late and rather than finding comfort in this, the statistic has me worried, frightened that I am not going to respond. If I am honest, I am also jealous. Jealous that others are getting better and we do not know yet whether I will. I have also established that I am incredibly impatient.

I do not want to start my next round of treatment thinking like this. I strongly believe that a positive outlook will only help the success of the treatment. My frown has to be turned upside down. This feeling is not me. I am not this negative, an occasional bitch maybe, but not negative. Hang on, maybe this mood has something to do with another cycle all together… Ah, hope. A little ray of light shining through.

I want and need you all to remember the chant and will my recovery with a complete response, which will mean a paraprotein level of <1. You also now need to will the return of my positivity. I'll be doing all of this as well, so you are not out there on your own.

This is a blip. A temporary hiccup. I’ll be back, sooner rather than later.

The Cosmos seems to be in my favour, for coincidently, today also marks my first appointment with my counsellor. I think it is clear that I now need it.

Happy Monday.

EJB x

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Long Term Memory (An Update On ‘Aspiration’)

This morning I posted a tale about a trip to Thailand when I was 17 years old. If you have not seen it, here’s the link https://ejbones.wordpress.com/2012/10/07/aspiration/.

Well, after this, Rachael sent me some photographs and they prove that my long term memory is still in full working order. In Your Face Side Effects. In. Your. Face.

Now, for a giggle, below is a photograph of me aged 17 on James Bond Island. Enjoy. πŸ˜ΈπŸ˜›

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Oh, Rachael just sent me so more, they are not connected to the story, but I find them amusing.

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Aspiration

Last night, in search of some light entertainment I decided to watch Roger Moore’s second outing as James Bond, ‘The Man With The Golden Gun’. This is turn reminded me of being 17 years old on holiday with my friend Rachael and her family in Thailand.* This in turn reminded me that since that trip 11 years ago, Rachael’s dad has been diagnosed with Multiple Myeloma. Huw was diagnosed seven years ago. This in turn reminded me of his amazing strength and that of his family, in battling his disease and the obstacles it has thrown their way. This in turn made me think about how wonderful Rachael has been since my diagnosis; understanding and explaining to me the new terminology I have had to learn. This in turn made be feel thankful and humbled that Rachael’s brother-in-law, Neil, has signed up to do a triathlon next September to raise money for Myeloma UK on behalf of Huw and me.

Basically, by watching ‘The Man With The Golden Gun’, I was reminded that I have something to aspire to. They have shown me how to do it. I know I can replicate Rachael’s family’s strength and positivity. I know my family is already there and I do believe that I can beat this. I just need to remember this on my Bad Days.

* If you are not a James Bond fan and are wondering how I jumped from the ninth ‘official’ James Bond movie to a holiday in Thailand, let me enlighten you. It is time for a FILM FACT! πŸŽ₯πŸ’‘ Scaramanga (played with gusto by Christopher Lee) the movie’s villain, had a hideout and said hideout was an island and said island was filmed on location on Khao Phing Kan in Thailand. We visited said island during our trip way back when in 2001 and, as a fan of the movies and James Bond, I was most excited. Overly excited. So excited that I can tell you that on that day, I was wearing a pair of blue denim look linen shorts (complete with drawstring waist) with a red and white horizontally striped t-shirt with white collar and my breasts were supported by a halter neck tankini underneath the t-shirt. The majority of the outfit was from New Look, to note, not the tankini, I need propersupport. It would be fair to say, I was not comfortable with fashion back then.

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Wig Play

Good afternoon. I just thought I would check in and confirm that I am still preoccupied with the loss of my hair. Slowly, I am coming to terms with what is happening. Slowly.

Today’s post however, is a happier one than my posts of late, for us Jones Ladies have been partaking in some Wig Play this afternoon. Last week, I was very kindly given a wig and while I still intend to visit a wig shop this week, it was nice to be able to try a wig on with my family and see what my face looks like without my own hair. It is also important to me for my five year old niece to understand what is going to happen to her Auntie Emma over the next few weeks.

I love and respect my family. Of course I do, but I honestly cannot describe my pleasure at knowing that I look better in my wig than they do.

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Wig Face Prep

The power of retail therapy….

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Part II – In Pictures – The Patient Transport Service

I am confident that you have just read my praise of the NHS Patient Transport Service, which I am sure you found erm,’riveting’… So, to continue with the ‘excitement’, why don’t you feast your eyes on what I see from that vehicle window every time I use the service. For the archive, all photographs were taken yesterday, on 20 September 2012. You will see that the journey is monotonous, but temporarily, it is part of my day and My Myeloma Life.

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Knowing Me And Knowing Me

After yesterday, I needed to know that I could look like me. That I was me. That I was still me. The EJJ. I needed to do this by playing with my look, albeit slightly, to see whether what I know to be me, could work sans hair. I still have some hair, which clearly limits the success of this particular experiment, but that did not stop me from donning my Pat Butchers with my subtle lipstick to Clinic. Or from looking at myself in the mirror, on more than one occasion…. And it gives me great pleasure to know that I can still look like this, despite what is to come. If only I could Photoshop out the top knot, just to see… But then, what would curiosity do to the cat?

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Regardless, today I realised that I will and can deal what is going go happen in weeks to come. It is not going to be a walk in the park, I definitely will not be doing cartwheels, I know that. I also know that I will be able to get through this. With a little help from my friends of course.

Please note that to coincide with my own personal loss, I will be pushing a major fundraising event in the weeks to come, as my dear friend Ian pledges to lose his own luscious, long locks in solidarity and friendship. More to follow, but prepare to dig deep people. Dig deep.

Unique

In a previous post, I commented that I am not ready to listen to other people talk about their experiences with cancer. This is still the case. I read a statistic the other day that said that every two minutes somebody in the UK is diagnosed with cancer. I never thought until 32 days ago that this could be me. One in three people will be diagnosed during their lifetime. I wager, and this is what I am struggling with, that this statistic probably does not include many 28 year olds. This is certainly the case for those 28 year olds diagnosed with Multiple Myeloma.

For the time being, My Myeloma is my own. I am unique.

My diagnosis and how I am managing said diagnosis is specific to me and right now, I cannot hear anything to the contrary. It’s how I am managing this and getting up everyday and smiling. I don’t know why this has happened, but I know that as with all cancers, mine is unique, and I know that regardless or should I say in spite of my diagnosis, I am special.

Strangely, and this is something that I find difficult to reconcile (so I have no idea what others think, possibly arrogance), I believe that my diagnosis and my experience can help others. I genuinely believe this and I want to be able to help others via this blog and other means come to terms with their diagnosis. I also, categorically, do not want to take anything away from other people’s experiences and battles, because I believe all battles are individual battles. I am just not ready yet for others to advise me. I have my Support Network to help me.

I believe that I am an individual and idiosyncratic, and that my ability to tell others about my experience may just help people who do not have the outlook, confidence or support that I have, to make sense of this awful, awful disease, in all its different guises; myeloma or no myeloma.

Yesterday, I shared a journey home with another patient, who is also participating in my trial. He is, thus far, the only other person I have met on my trial. When I first saw him in the reception area of the Macmillan Centre, I saw an elderly man falling asleep on a chair with a walking stick accompanied by a support worker. At the time, I was sitting on one of the high chairs listening to modern music on my modern iPod, lipstick adorned, playing Words With Friends on my iPhone, chatting to the support staff as and when they spotted me, wishing my transport to hurry up so I could get home and sleep off the nausea.

I found the journey home emotionally and physically challenging. It is quite normal to share stories with other passengers in these vehicles and as soon as we got into the car, we started discussing the gentleman’s treatment. I quickly cracked the secret code and established that we were on the same trial. When I informed him and his support worker of this, both seemed dismissive and appeared to find it difficult to comprehend. As noted above, he ‘fitted’ the Myeloma stereotype. Me, with my youngish complexion, despite the walking stick and visible nausea, did not. Their view, which they vocalised, was that I could not possibly be on the trial because I was too young. I could not possibly have Multiple Myeloma because I was too young. The conversation moved onto the side effects, and I know enough about side effects now to understand that everybody experiences their side effects differently. I am experiencing my own differently daily. There are bound to be similarities, but essentially, each experience is unique. The gentleman and his support worker did not share this view and were again shocked that I did not feel the same way as him. And thus, I repeat, that My Myeloma is my own. In what felt like the longest journey known to humankind, the conversation, atmosphere may be a better word, moved to pity. Their pity that I had Multiple Myeloma aged 28 years. I do not want to take anything away from the gentleman or his personal experience, but he had clearly seen and experienced more of the world than I have and neither of them knew how to hide their thoughts from me.

It has taken me a day to process and to understand how this conversation made me feel, and it is with absolutely clarity, that I say to you now that I am unique. Everything about how I am managing this, managing my treatment, managing my diet, managing to stay positive, managing to interact with my loved ones, managing to interact with the medical team and support workers, and managing to get dressed everyday, is unique.

My Myeloma is my own. I am unique.

Right now, probably not ever if I am honest, I have no intention of letting anybody take this fact away from me.

This is not arrogance people. This is confidence.

EJBx

Stoic

My name Emma Jane Jones and I am stoical; this fact is going to get me through this.

Embrace.

πŸ‘πŸ˜ƒπŸ‘

Arts And Crafts

This is a fun homemade card I received today… Prizes for spotting all my loves. I promised the maker she would remain anonymous. I have kept that promise, for once.

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