Monthly Archives: September 2012

Pillows

I have become addicted to many things since my diagnosis, though I sincerely hope that one such thing is not my pain pills (and this is being closely monitored by yours truly and probably my doctors and pharmacists to boot), but other, non sinister things, completely addicted…

So, My name is Emma Jane Jones and I am addicted to pillows. Thank God I got that one off my chest, phew.

When the bones from your hip to your neck are full of dark shadows that have leaked calcium into your blood and introduced immense pain to your life, it is amazing what comfort a cloth case filled with something soft can create. It is rare to see me in a seated position these days without a pillow. I suppose I should include the cushion into this discussion as well.

I am particularly fond and thankful that somebody invented The Travel Pillow. I am not talking about one of these inflatable things you buy in departure lounges. Oh no. I have two. Correction, I had two, I lost one on Friday in a taxi (I am also grateful to Amazon; I should get my replacement tomorrow). The technology behind the modern travel pillow is impressive. I have one called the ‘New Innovations Total Pillow’ and trust me, it is exciting as it sounds. I also have one that I have been in love with for years and It proved to be a good friend to me in hospital. It also smells like me and as I am a narcissist, that’s just ideal. Nothing, however, can compare to The Pregnancy Pillow. They should really rebrand these for Myeloma sufferers or indeed anybody suffering from severe pain. They are, quite simply, the bomb. Sure, they are ugly as hell, but they offer me pain relief and that is all I care about.

20120930-204257.jpg

See, ugly as hell.

My name is Emma Jane Jones and I also addicted to tea even herbal, butter beans, Words With Friends and my iPhone. Thanks My Myeloma.

Advertisements

Saturday Night

Last night, I almost, almost had a normal pre-cancer Saturday night in with friends. We watched crap Saturday night TV, Icooked dinner and we drank beer. It was a delight. Other friends were going out to a reunion, but last night, I wanted to stay in with my favourite TV Buddies and eat. I would not have been able to go to the reunion anyway, my hip is still being a real pain in the arse. So what were the differences? Well, they let themselves in with the contingency keys, my beer was 0% (thanks Lads), instead of mince the chilli was a three bean high fibre feast, the snacks were nuts and seeds, I allowed my guests to do the dishes and I had to be tucked up in bed by midnight. It was indeed a delight. I then slept for a whole 10 hours…. It’s just a bloody shame about the cancer.

I just wish and long for the day when I do not think about the fact that I have cancer. Obviously, I also long for the day when My Myeloma is put to sleep, but in the meantime, I would like one day when I do not think that about my cancer and I can just get on with things as normal. I would be normal. Normal EJ thoughts. I think, realistically, that would be impossible, and that is indeed a shame.

So, My Myeloma and I are going to hang out today and hope for an equally good Sunday as my Saturday.

Oh, as I am such a crazy part animal, I took photographic evidence of the remnants of my good old Saturday night in. Just for you.

20120930-113206.jpg

My Bowel’s Best Friend

Linseed. Soak. Eat. Flush. Exhale.

20120929-155802.jpg

The Independent Shopper

Since my release from hospital my ability to food shop has been limited to the kindness of friends and family. This has basically meant people going to the shop on my behalf (mostly Housemate and Laurie bringing me milk) or escorting me to the supermarket and carrying my groceries home. Occasionally, I may be adventurous and venture to the corner shop, but that is as much as my body will allow. One day I will be able to carry things heavier than EMan (he’s my teddybear, my love, in case you were wondering) again, but until that time comes, shopping for food independently is out. Before I consider carrying groceries, I should probably aim for being able to walk for more than a mile, or indeed, walk anywhere outside the flat without my walking stick. Thank you My Myeloma.

This is frustrating. I like to be able to go to the shop and buying too many bags of flour. I will never take this for granted again.

Today though, I took a step closer to independence… I thought outside the box and embraced being middle class. That’s right, I found Ocado. I still needed somebody to put my shopping at waist height and another friend went and bought me some bananas to ensure that there were not bruised, but I still managed to do my own shopping and man, does it feel good. I now have a fully stocked fridge and cupboards, fully stocked with fibre. My bowel is going to be so happy.

So, today, I took one Internet step towards independence and it feels so good.

20120929-155411.jpg

20120929-155419.jpg

Oh, and apparently, My Myeloma is now sponsored by Dorset Cereals.

20120929-155606.jpg

The Macmillan Coffee Mornings

Today, in offices across the country people participated in what Macmillan Cancer Support billed as ‘The World’s Biggest Coffee Morning’. Given my recent diagnosis, my office was one such office who participated and I am truly thankful to Laura, Cathy, Middlesborough and all the other bakers who contributed and helped to organise the event to raise money for Macmillan. I am also truly thankful that my body decided to have a normal immune system, so that I was able to get myself to the office and enjoy a cuppa and cake with them. The fact that my body was behaving (ish, I have no idea why my pain is worse this week) meant that I was able to show my gratitude in person, and, ssssh, I had spent the week willing my body to allow me to attend. I even made my own little contribution to the baked goods with an overly crumbly banana and chocolate cake.

Since my first day of treatment, the support I have received from Macmillan has been incredible. Before I entered the Macmillan Centre at UCH, if I am honest, I really had no intention of using the Support Centre, I don’t know why I thought this, maybe I thought that I had enough support already. Now, I find myself going in to see the suppor workers whenever I am in the Clinic. My friends have been there with me and one described it as a ‘sanctuary’ and for me, it is. At least once a week, I find myself going in there for my own little coffee morning, except I don’t like coffee so I have a cup of tea instead. The people who work in there make me feel better, they are now another part of my immense Support Network. I have taken full advantage of the services they offer, which includes relaxation therapies, wig fittings and the scarf tying lesson. My counselling is also organised via Macmillan. So, essentially, what I am saying to you, is that Macmillan deserve all the money they can get. They make my days better.

Back to Our Coffee Morning and to other people who make my days better… The morning was a roaring success. So many people came to the ground floor, ate cake, drank tea and donated. It was also a perfect excuse for me to catch up with my colleagues and anybody or is anybody knows how much I love a chat and the opportunity to talk about myself. It was brilliant and crucially, they achieved what they set out to do and that was to raise money Macmillan. The final total was a rather respectable Β£372.04 and a franc. Good work and thank you. I really need to find another way of saying thank you.

Now, I kissed a lot of people today. All I am saying, is, you better have been healthy.

In case you do not believe me, below is photographic evidence of the super fun morning. Yes, I have become a person who enjoys a coffee morning. I blame the myeloma.

href=”https://ejbones.files.wordpress.com/2012/09/20120928-194757.jpg”>;;;;;20120928-194757.jpg

20120928-194809.jpg

20120928-194820.jpg

20120928-194828.jpg

20120928-194835.jpg

20120928-194842.jpg

20120928-200356.jpg

20120928-200412.jpg

Meanwhile, in Lincolnshire….

Big Sister and Mamma Jones also organised coffee mornings in their offices. Their events even featured in the local paper. Get them. Big Sister raised Β£115 and given the size of her office, this is more than credible. I don’t need to thank them, I like to think they intrinsically know what it means to me. Check out this cake display:

Spoilt Narcissist

Some people manage their diagnosis with dignity. I have chosen to manage mine by writing a blog and talking about myself all the time. I tell myself that it is cathartic and not in the least bit an attention seeking device that forces people to spoil me. Who am I kidding? I have become a spoilt narcissist who continues to be astounded by the generosity of others. That’s My Myeloma.

Many thanks to the work folks for the following (whoever selected the antiseptic wipes…score!):

EJB is one happy narcissist.

20120928-180113.jpg

20120928-180106.jpg

20120928-180121.jpg

Human Rights

There are two things in life that many humans take for granted; sleeping and shitting. I no longer take these things for granted.

If you Believe, it is a God given right. If you don’t, it is a biological right. Actually, even if you do Believe, the latter will still be true. I want to be free to sleep and empty my bowels whenever I want to, but alas, life just isn’t that easy or that kind.

BUT….

…last night, I slept for 8 hours and I had an incredibly satisfying experience in a toilet.

In. Your. Face. Side. Effects. In Your Face.

πŸ’ͺπŸ‘πŸŒŸβœ¨πŸ˜ƒβ­β˜€πŸŽ‰πŸŽ†πŸŽˆ

UPDATE – Missing

Cheeky Beggar

20120927-224838.jpg

I’m going to pay for that tomorrow.

Small reward awarded. Thanks.

Progress

Today, I was out of my flat for a grand total of 380 minutes, but today I do not care. I do not care that it took 380 minutes to receive a single injection in my stomach, because today has been a Good Day. My walking stick is still missing and my hip hurts like hell, but I do not care. Well, I do care about that, but I am not going to let it burst my current bubble, even if the bubble proves only to be temporary.

To start with, I had not one, but three people visit me at The Clinic, which made the six hours pass with the greatest of ease. I really do have some good friends.

Today is Day 10 of my second treatment cycle, which marks the day when my immune system will start to fall. Between now and Sunday, my immune system will be at the lowest point in the cycle, which means I have to be particularly cautious, so if you see me, please try not to cough in my face. During my first cycle my immune system did not crash and I hoped and continue to hope that this remains the case for my current cycle. I said yesterday that I might start to trust my body again if my Full Blood Count results came back within ‘normal’ range, especially my White Blood Count. I am somewhat obsessed with my FCB, I blame Haemo Dad. I was rooting for something above 5. Last Thursday my WBC was 8, on Monday it was 6.66, today it was 5.5. Yes Body! Well done. Good work. I like to think that my current obsession with goji berries played a part in this result. Sure, my platelets are a little bit lower than I would have liked, but overall, this was a good set of results. Again.

This is not why I am in a good mood today. By the time I found this out, my WBC could have been 2 and I would not have minded that much. I would have moved on by locking myself in the house for the weekend and sleeping.

Today, I am in a good mood because I have firm evidence that MY TREATMENT IS WORKING! Today, I found out that my paraprotein level, the main cancer barometer for My Myeloma had reduced by 35% during my first cycle. My Doctors are aiming for a 90% reduction, but I am really aiming for no paraprotein at the end of my treatment. That is my goal, but I cannot get ahead of myself. For today, I know that in the first three weeks of my treatment, my paraprotein level reduced from 40 to 26. This means that today I know that my treatment is working. I did not know this yesterday. This means that today, I am happy in the knowledge that I am one step closer to beating My Myeloma and I am one step closer to trusting my body again. The Body, has decided at last, to play ball.

I am not going to think about the pain in my hip or yesterday’s new pain in my left collarbone. I can think about that tomorrow and maybe write an uplifting blog about Extreme Pain. I am not going to think about my hair falling out and I am not going to think about anything else that is a negative in my life.

Today, I am going to bask in the glory of knowing that my treatment is working and that all the waiting, the constipation, the fatigue and the hair loss are worthwhile because my paraprotein level is reducing and my treatment is working.

Long may this continue.

EJBx

A Trip To The Dry Cleaners…

Me: Thank you. How much was that again?
Dry Cleaner Man: Β£8.50. You don’t need the ticket. I know who you are… What have you done to your leg?
EJB: [invisibly rolls eyes] Oh, I have not done anything. I was recently diagnosed with cancer of the bone marrow.
DCM: What does the doctor say?
EJB: Well I am currently undergoing treatment, including chemotherapy, so I am just working my way through that at the moment. [Smiles] But there is not a cure for the type of cancer I have.
DCM: Okay, just make sure you don’t get pregnant at this time.
EJB: Don’t worry, the doctors have warned me…
DCM: … You know, you should still be having sex but it is not good for a baby. Maybe wait for a few months after your treatment…
EJB: [shock]
DCM: …use protection, it depends what your boyfriend likes, but you know, you should use a condom and the pill just to be sure, or something… But make sure you do have sex, not all the time, but the exercise is good for you….
EJB: [mortified]… Yeah, ummm, yeah, my mobility is quite restricted…
DCM: … but you have to be careful not to get fat. You should be trying to have sex maybe every two weeks…
EJB: Oh okay, thanks. Bye [Exits]

πŸ’‹πŸ‘…πŸ‘ΆπŸ˜˜

%d bloggers like this: