Category Archives: Family

The (Almost) European Vacation 

If I have said it once, it is worth repeating, going on holiday when one has Myeloma is an expensive, administrative nightmare. 

My recent holiday, was booked before I relapsed. In it’s origins, it was meant to be a holiday of relief. Relief for me that I had made it through two stem cell transplants in 2015 and lived to tell the tale. Relief to my parents that they were able to use their annual leave for something that did not involve staying with me in two different hospitals and then caring for me when I was discharged. It was exciting and it gave us all something to look forward to. There was promise too,  promise that I would be healthy enough to enjoy it without threat, and promise that I would be in the position where I would be able to financially contribute towards my own holiday. I am a 32 year old adult after all. 

Two months after we booked said holiday, I relapsed, thus evaporating all that promise and relief we had when Mamma Jones made the booking. This left five months of frought waiting, full of what ifs, maybes and fear that for whatever reason, I would not be able to go. Underlying all of this was the very real question that if the worst did happen, the £250+ travel insurance policy I had taken out would be sufficient to get my parents their money back. 

As the five months went on, I found myself not simply needing a holiday because I had not been on one since 2014, but needing one because my life had become dominated by my treatment. I had had no time to come to terms with my diagnosis and my prognosis, and unknown fully to me, I had fallen into the   the worst period of My Myeloma journey thus far. That’s not hyperbole, I’ve been metaphorically stuck in a mental well for half of 2016. Five months of constant treatment, looming unemployment, living in the triangle of my flat, my parents’ house and my hospital, had become nothing if not mundane, uncertain and depressing. To put it very simply, I needed the break. An escape.

Remember that I mentioned the holiday being an administrative nightmare? Well, two weeks before departure, in response to a form I filled out declaring my disability, which I completed to make sure I had the necessary assistance whilst we were away, I was told that I had to get written medical approval before I would be allowed on the ship. Drama. That’s right, I was going cruising. AND, there was drama. In the end, after an anxious wait, it turned out to be a fairly straightforward process, but I ask you, how many 32 year olds would have to jump through so many hoops before being allowed to go on a holiday? 

Logistically, I had to make sure I had enough medication for the 12 night cruise, which creates much checking, double checking and a healthy supply of dosette boxes. Mamma Jones and I had to barter with each other over what would be reasonable activities for us to do ashore at each port. I am prone to thinking (wishing) that I can do more than I am physically able, like an eight hour day, and she is prone to being a super protective mummy, worried that her ill daughter is going to push herself too hard and collapse in a ball on a nicely tiled Mediterranean ground. The bartering took some time. I like to think I was the winner here.

The biggest pre holiday issue? Chemotherapy. From the start, I was adamant that I did not want to be on my chemotherapy medication when I was holiday. It took four months to get the answer I wanted, with various options touted along the way. Three days before we departed I was told that I was allowed to have two weeks off from the Ixazomib, Dexamethasone and Revlimid. Trust me when I say, this was a holiday in itself.  

Some may think that this was an unwise decision on my part, but I weighed it up. I didn’t have much else to think about, so overthinking is now pretty common. Any physical setback I experienced would be far outweighed by the mental strength I would gain from really being able to experience something new. I think I was right. My pain has increased significantly over the last three weeks, I don’t know if was because I delayed my treatment by a fortnight, a result of doing too much, something worse or any combination of the above; but I have been reminded what it feels like to live. 

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Ask yourself, have the expectations for one of your holidays ever been so great? 

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I do hate to harp on about my age yet again, but on a cruise, especially a P&O cruise in November, age is most definitely an important number. I acknowledge that cruises are not particularly cool nor are they fashionable holidays for somebody born in 1984. For somebody like me however, who misses seasons in a blink of an eye, who struggles to walk a few metres and carry her handbag, a cruise is the ideal holiday. The Ideal Holiday. I boarded at Southampton, unpacked once and I was taken to Gibraltar, Valencia, Cartegena, Tangier, Seville and Lisbon, before returning to Southampton, where Mamma Jones’ car was waiting for us. Excluding the pre holiday admistration, the doing part of the holiday was so easy. Evidentially, the ease of a cruise has a lot to do with the demographic of the ship’s holiday makers. This has nothing to do with me, but on one relaxed sea day, Mamma Jones’s foot was the victim of a mobility scooter drive by in which the perpetrator not only failed to stop at the scene of the accident, but was completely oblivious to it. The perpetrator then proceeded to bring down a clothing rail in her wake.

There was just one not so small snag… One lingering question that I could not get out of my head that constantly threatened turning our holiday into something bittersweet. Would this holiday be my last holiday? Every time I thought about it, and I would catch myself doing it multiple times a day, I had to swallow quickly and push that morbid thought as far away from my mind as possible. I could feel how much fun I was having and then see how much fun Mamma Jones was having, and I could not help but think, would the two of us ever enjoy something like this together again? Would I ever be able to go on holiday with my sister again? And each time, like just now, I had to swallow quite ferociously and not speak, because the thought of my Mum having to find a new travel buddy or my family going somewhere without me breaks my metaphorical heart just a little bit. 

I might have cancer, I definitely have one with no cure and an unknown prognosis, but that is not the only issue when it comes to the prospect of my future holidays. Some life might grow on trees, but money does not and future holidays accompanied by astronomical travel insurance premiums do not come for free, even if I do feel like I deserve it.

As horrible as all of that is to consider, it spurred me on to have the best darn time possible on the ship I decided to call, the Floating Coccoon. 

My body knew what it had to do and boy oh boy, my body did not fail me. Gone were the much needed lie ins and the penchant for afternoon naps. There were concessions sure, I was in bed by 10pm every night at the very latest, and by 7pm of every day I struggled to sit in a seat because I had failed to lie down enough during the day. I was back to sleeping on six pillows. I am still on 6 pillows. There was just one evening where I stayed in with exhaustion, getting into my pjs at 6pm. These are groundbreaking statistics for me. 

It really is like my body knew, for on the last night of our holiday, after one almighty click in my neck, I could no longer walk with my walking stick because I did not have the upper body strength to hold. I have been suffering since. It’s a small, somewhat painful concession that was completely worth it.
I could go on and on and on, but I think you now have the idea. I enjoyed myself.

In the 12 days we were away, I witnessed 12 spectacular sunrises, 12 sunsets, one mega moon, two rainbows, violent seas, six different ports in three different countries and history. So, so much history. And colour. New colours everywhere for my eyes to feast on. My NOW TV box does not begin to compare.  For 12 days, my eyes were spoilt. For 12 days, my Instagram feed contained images that were not of dogs. For 12 days, I allowed myself the occasional alcoholic beverage and I ran the germ infested gauntlet that is a hydro pool. For 12 days, I felt free from my shackles. 

To my beloved Mamma Jones and Haemo Dad, thank you. 



EJB x

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Mums

Yesterday, as I waited in the clinic for my appointment I was greeted by an uncommon sight, another young person. I should be more specific, there are always twenty somethings around, the nurses for example predominantly appear to fall within my age bracket. You will also find a lot of visitors who were born in the 1980s hanging around with their loved ones. You do not see many young patients. Yesterday however waiting for treatment with all the other cancer patients, was a young man, in his early twenties, sitting with his mum.

I did a lot of waiting yesterday, so I used some of my ninety minute wait for treatment to watch them. It passed the time. He didn’t have to wait as long as me, and before he was called through to what I call the Cannula Bay, the young man and his mum were partaking in some jovial conversation. He was mostly playing on his phone and she was smiling, looking like a mum with a bag of food products. He was wearing jeans, a t shirt and a nice loafer. He looked normal and were it not for some bandages on his arm and the slab of pills I saw him take, you would have thought that his mother was the patient because in the law of averages, that would be the most likely scenario and the one I see every time I am in the clinic. After half an hour of watching them and a packet of Skips later, the young man received the enviable tap on the shoulder and was called through to the Cannula Bay. He got up, walked through the reception chairs and gave his mum a quick tap on the shoulder. His mum watched as he walked out of sight into the Bay, and then as soon as he was seated, she turned, looked at the red and white floor with the inspirational quotes and began to cry.

I then hijacked her private moment, and also started to cry.

By the time the young man returned, I was still waiting, but his mum had composed herself and produced a muffin for her offspring and they made their way to the big red comfy chairs at the back of the floor. And there they sat and remained for the duration of my treatment, occasionally breaking from speaking to each other to speak to the Medically Trained People. He was receiving drugs via a cannula and all the while, the mum held a sturdy smile on her face and continued to produce food products as and when they were required.

I do not know how mums do it.

I know that cancer in a child is not the worst thing that can happen to a parent, but it is not exactly a celebration. I do not think a mum can prepare for this. There is not an insurance for this and I sincerely hope it is not something parents envisage. Future, should only be for the good stuff.

A mum should not think about having to care for their child with cancer, let alone have to care for their child with cancer.

This isn’t supposed to happen.

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Happy 30th Birthday, Big Sister

This is a belated message, which should have been posted yesterday, but IT issues prevented that treat. I apologise.

Today is my Big Sister’s 30th Birthday. So, in celebration of that, I thought I would let you know just how great a Big Sister she is.

We are opposites. Big Sister is small and I am big. Big Sister is married with a house and I am not. Big Sister does not appreciate some of my fashion choices. I am not going to lie to you, we have not always got on. She once convinced me to stick a bead up my nose and I had to go to hospital to have it removed. If memory serves, it wasn’t actually up my nostril by the time we got to the hospital, but she made me do it. Another time, she hit me across the back with a tennis racket. She wouldn’t do that now, for I have multiple lyctic lesions in my spine.

Right now, and I should not have expected anything less, she is proving herself to be the Best Big Sister Ever on my Official Best Sister Scale. I couldn’t get up everyday without her. Not only is she a stem cell match to me, and this fact will probably end up saving my life, but she excels on the little stuff as well. Big Sister calls me everyday and is constantly checking that me, her Little Sister, is coping with MM. She makes my days better. This will include listening to me cry, making me eat, making me get out of bed and/or just listening to me talk shite (I really don’t have that much to talk about). She really does make everyday just that little bit easier. As does her offspring and for those two little beasts, I am truly thankful to her. I get to be an Auntie. A sick one at the moment, but an Auntie all the same. I suppose she gave me a decent Brother-in-Law too. Further down the line, I know Big Sister will do all she humanly can to facilitate me becoming a Mummy. That is sisterly love.

She may be small and a grown up now, but I am pretty sure that the old rule still applies that she is the only person allowed to be mean to me… Not that she is, but what I am saying is, try not to upset me; I’m pretty sure she’ll try and sort you out. You have been warned.

I am very lucky. She is too, obviously. There is no modesty here. Let’s throw in another, my parents are very lucky.

So, Happy 30th Birthday Kirsty. Below are a few snapshots of our time together (and some potential re growth hairstyles). Enjoy.

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Copycats

Today my pain is behaving itself. As my pain is behaving, today, I have indulged in some outdoor family fun. This basically meant my 5 year old niece ‘looking after’ my walking stick and me spending my money, whilst Big Sister looked after us. This particular niece, I have two, pretty much likes to ask questions about my illness all the time.

“Auntie Em, are you going to the hospital today?

When is your hair going to fall out?

Can I hold your stick?”

When she is around me and not doing that, she can be seen playing with my sick aids. Her one year old sister also tries to get in on the act, but this usually just involves her trying to eat my walking stick.

My family are the best.

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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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Both Ways

To My Dear Friends and Family,

There have been several occasions since my diagnosis when I have paid tribute to you all for the support and consideration you have shown and I know, will continue to show as I continue with my battle against My Myeloma. I would not have got this far without you and I know that I will not be able to continue as I have, without your continued and unwavering support and love. Each of you, and I know you know who you are, make me get up everyday and battle this. All of you make me want to survive and beat this. All of you, make me know that my life is worth living. All of you, make my life worth living. You always have, I just never knew it, because until the dreaded diagnosis, I never had any reason to question my own mortality or question why any of you would want to be friends with a girl like me.

Earlier this week, I said that My Myeloma does not define me. It doesn’t. By the same token, My Myeloma cannot begin to define my relationships. Each of you, day by day, hour by hour, are supporting me through the treatment, asking me and talking me through the highs and the inevitable lows. I know you are worried and you want me to get better and and I know you all want me to be okay. If this was not happening to me, and it was happening to one of you, I would behave in exactly the same way and this fact makes me proud. The way you are all rallying around me, makes me proud to call you my friends.

I am not foolish. I know I have cancer and an increased mortality rate, facts that unfortunately are not going to go away for a while, and thus I acknowledge that I will continue to need you more than I have ever done before… I however, need you to know that I am here for you as I have always been. This works both ways.

I will continue being what I have always been and holding the roles that I have always had, and that is being a Daughter, a Little Sister and a Friend. This works both ways.

As you are here for me, I am here for you. I love you and my loyalty and support is steadfast. This works both ways. It’s just like it has always been, although I do admit that I never, ever, ever would have said this, let alone written it down on the worldwide web (I genuinely fear that my heart of stone is now long gone).

In spite of what is going on inside my body, I am still the person you can contact to shout, rant, cry, whinge, bitch and moan at. My Myeloma should not be a consideration. I am on the other end of a phone, or sitting in my flat, ready to hear about your days and listen to you talk to me about your lives. Good and bad. If you get drunk and you feel anxious, I am here for you to talk to. If your boss is being an arse and you feel perturbed, I am here for you to talk to. Feel like you are falling in or out of love? I am here for you to talk to. Not sure how to get that bread to rise? I am here for you to talk to. Don’t like what’s on at the nearest multiplex? I am here for you to talk to. Or if you just fancy a cup of tea or a pint, then I am here for you to talk to. This works both ways.

My Myeloma cannot define us. The only difference now is that I may actually be able to keep a secret… Oh, and I have a teeny bit more time on my hands.

So there you have it, my beautiful, true friends. This works both ways.

Much love,
Emma x

Mamma Jones Having Fun With The Grabber

Us Jones’ have to find the fun when we can…

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Live Odds

Last week, I said that I had some good news that I was waiting to share with you. I think I can share it with you now, on the condition that once it is out there, that it is not discussed again for at least three months. This rule is for me. As it turns out, the good news is once again bittersweet. Maybe bittersweet is the wrong word. Scary and surreal. The news is scary and will involve me making a decision, that in my 28 years, I never thought I would have to make.

The reason for my delay in sharing it, is that I had to discuss the consequences with my doctors, and I had my first trial appointment today. The news is amazing and is against some significant odds… Last Thursday, my sister received a call from UCH to inform her that she was a match to my stem cell. There was a 25% chance of this being the case. I had not allowed myself to even think this was possible because the odds were so low, and I really have been suffering in the luck department of late, and when Big Sister told me last Thursday morning, I cried with relief and I cried tears of hope. It seems that my life now rests on a careful balance of odds and statistics. It is not fair, and I am allowing myself to dwell on it today, but when I wake up tomorrow, I know that I would have moved on. It is imperative to my well being and thus my recovery that I do.

A match to my stem cell means that I, hopefully, will be eligible for a donor stem cell transplant. I also discovered today that Big Sister, who is quite simply amazing, I may have mentioned this before, is not only a match, but the best sort of match for me. A negative and a negative. There are more medical terms involved, but I did not write them down, and as I said yesterday, my short term memory is somewhat lacking because I am a walking pharmacy.

So that is the good news.

The bad news, or the less good news, is that we cannot even consider this stem cell transplant until at least 90% of my MM has gone. The crux therefore, is that I have to continue with my current treatment and hope that it works. There is approximately a 50% chance of the trial working. These odds cannot be more definitive because it is still in trial. If it works, I would then be eligible for the stem cell transplant. If it does not work, then I will have to undergo another treatment programme before it can be considered. Yet more odds. I am not even considering the odds involved smashing this MM into hibernation, I daren’t.

My energy now then, as it was yesterday, is successfully getting through my trial. It has to work.

The donor stem cell transplant is called an allogenic transplant, which was described to me today as a ‘high risk procedure’. The details are sketchy, because we need to wait for the Myeloma to go before I meet with the transplant team and find out more, which will be in at least three months time. It is for this same logic, that I only discovered today what the transplant involves, the doctors did not want to get my hopes up when I was in hospital. What I did find out, and this is the scary, scary part, is that there is a 10-20% chance of mortality with this procedure. Put it another way, this procedure, historically, can result in a 10-20% chance of death. Equals my death. The risks lie in what happens to my immune system in the 6 weeks I would have to be in hospital undergoing the treatment, and the three months afterwards as my body takes to the transplant, and the odds of me rejecting the donor stem cell. Alternatively, there is a 80-90% success rate. Perversely, if successful, the transplant will give me the highest odds of a long remission before my next relapse. This means it will give me the best odds of leading a normal life. A life where I can carry on where I left off 4 weeks ago. I can meet a nice man and get married. Or live in sin. I am not fussy. The man could be a farmer and we can have special cuddles in the morning in the pantry after he has milked the cows and the kids, I may have (yet more decreased odds) have gone to school.

Understandably, I have thought about this all day and I have discussed it with my nearest and dearest. All have said, rightly, that everyday there is a chance of people dying. Every time somebody leaves their house. Or even in their house. As Big Sister said today, there is a chance of me completing the trial successfully, without the stem cell transplant, crossing the road and being hit by a car. Odds and chance. Odds and chance. Odds and chance. If I think about it this way, the odds I was given today seem less daunting.

I do not intend on thinking about all of this again for a while. Two days ago, I thought my life would return to normal by Christmas; this is likely not to be the case now. I will be going on half pay, I really am ever the pragmatist. So I have set myself a new milestone for success. My 29th birthday in May. That’s the new goal and by hook or by crook, I am going to see that birthday and I am going to have one fucking awesome party. I promise you that. I am promising myself that. For sure.

Bloody mortality. Bloody odds. Bloody chance.

I don’t want my life to rest on odds, but for the time being at least, they are going to feature. I am just going to have to try my damnedest to improve these odds, by any means. That is the way this goes. That is where my positivity comes in. Rest assured though, when I wake up tomorrow, my focus will return. My glass will be half full. My immediate focus will return to getting rid of this myeloma, as it was yesterday, and as it has been since I was diagnosed 27 days ago.

All of this, so that in three or four months time, my Big Sister can give me the best chance of living and these are the odds I like.

Maybe, There Are Some Perks To Being Looked After By Mummy

Home bound for the weekend… My Mother appears to have moved my bedroom into some sort of brothel. I kind of like it. Mucky dreams.

Plus, the Fens do look pretty beautiful today. I love that flatland.

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😷Congratulations😷

Big Congratulations to my family member who went and got himself shingles during my first neutropenic week. Poor sod.

All is well thus far. I am showing no signs of the illness, my blood results were clear yesterday (immune was on the low side but not rock bottom) and the hospital think unless things worsen, my only treatment is man and baby isolation. It is fortunate that I have been on the shingles prescribed anti-viral medication since last Tuesday. Thrice daily. It is somewhat reassuring that these drugs actually work and I am not taking them for fun.

The NHS really is great. I called my hotline this morning and went straight through to somebody that I know. It’s like The Buckingham Arms with drugs instead of draft.

Finally, in case you are worried… I think the Carrier is okay too. This is also fortunate.

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