Monthly Archives: October 2012

Clinic

This morning, I may just have been attention seeking, for it would appear that I am finding my clinic appointments easier to manage. At least today’s was. I anticipate that these specific appointments will get easier as I learn more about My Myeloma and as I continue to ask the difficult questions in the three week gap between appointments. Space out the bad news, that’s what I say. I suppose today was also easier because I had imagined the worst case scenario. The worst case scenario did not happen, for that, I just have to wait.

So, what did today bring? What was I able to take away from my 20 minute appointment? Well, I have somewhat helpfully bullet pointed the headlines below:

* I will remain on the PADIMAC trial for at least one more cycle, providing there is not a complete disaster with my paraprotein level. Please don’t let there be a complete disaster with my protein level.

* The Velcade dose is being reduced by 20%, because I am starting to show signs of neuropathy. It turns out that some of this is irreversible. I did not know this. Please don’t let me have pins and needles for the rest of my long life.

* I will not get my paraprotein level on Friday as original anticipated. I will now have to wait until Monday for this pleasure. Please go down paraprotein. I. Beg. You.

* Whilst my paraprotein remains and I still have myeloma in my body, I live with the risk of my lesions getting worse. I asked this specific question. Of course I did. I always like to hear the negative answers. As my pain, bar the hip, is in the same areas in which I have always in My Myeloma Life had pain, all should be well. I am on drugs to prevent further deterioration, so fingers crossed this will work. I should also not worry that the bone clicks. I am not a hypochondriac now, so, there will be absolutely no paranoia about these clicks whatsoever. It is my responsibility to tell the Medically Trained People about changes with my pain. I do not think that me not telling them will be an issue.Please don’t let there be any further deterioration of my bones. I like them.

* The increased pain in my left ribcage was discussed. Apparently, I already have “a few fractured ribs”… I didn’t know this, but I didn’t think it was the time to point that out. Plus, it is what it is, there is nothing I can do about it, these weaknesses take time to heal. Please heal quickly, really.

* The reduction to my C7 vertebrae means that the bone size has reduced. Again, I don’t really know what this means, but I do not think this is a good thing. Please don’t let it reduce any further, I do not want to be paralysed.

* My ability to urinate into a small pot has dramatically improved. Minimal leakage on the hand. Please don’t let me have a bladder infection; I don’t want it.

* There is a third stem cell transplant option, which is a combination of my own stem cell (when the myeloma is gone) and Big Sister’s. I know nothing about this procedure other than the risk of mortality is far less than if I went ahead with the donor stem cell transplant. Please let this procedure give me a nice, long remission. I don’t want to die prematurely.

๐Ÿ–

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And so, that was my morning. It turns out that despite this being my week off of treatment, I can still get tired. I did not anticipate this. I could tell you about how many hours I slept this afternoon, but I think a picture can speak a thousand words, so you have two in which you can see for yourself the deterioration of my energy levels as the day has progressed. To be viewed against my super hot photos from this morning. Modest.

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And with that, to sleep. I have work in the morning, with meetings. Plural.

Emma Jane Bones nรฉe Jones x

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Confidence

Right then you Bad News Wednesday. I have lipstick on, my hair has volume and I am wearing a really tight dress. I am ready for you.

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Man Of Metal

WARNING! – This blog contains a request for your money, again

I am not sure why anybody would call an event the ‘Ironman’. I think, ‘Man of Steel’ would be more appropriate because the event is ridiculous and frankly, it sounds impossible to somebody who always found a way out of PE. Hang on, I am being sexist and I am a female; ‘Human of Steel’ would be better. Everybody is equal. Regardless of the political correctness issue, I should try and get to my point…

Neil has decided that he is going to run the Ironman Wales in September 2013 to raise money for Myeloma UK. He is clearly crazy. The Ironman is 2.4 mile swim, followed by a 112 mile bike ride and then, because you might as well commit yourself, a full marathon. Back when I was a morbidly obese healthy person I could swim 1750 metres, fall off a bike when I attempted to turn a corner and run 10 paces for the bus. So…

It is 10 months away, and so my plea for cash is coming early (and anticipate that I will request again) but he needs to raise ยฃ2000 to be able to participate. They really do make you jump some hurdles…. As I am sure you will appreciate that there is a considerable amount of training and commitment involved, and I imagine blisters. You don’t have to experience it though,because he will, but you can donate if you are that way inclined. I am not talking megabucks here, every little helps, it really does. I know I keep hitting you up for cash, but Myeloma UK help fund new treatments for Myeloma. I have Myeloma and I want there to be a cure. I am not ashamed of asking people to help in anyway they can. To date, I have donated a measly ยฃ55 to Myeloma UK. I intend to donate so much more if My Myeloma allows it.

Neil’s JustGiving page explains why he is doing it, but in case you still need to be persuading, I will tell you why he is doing it. Neil’s father-in-law, who just happens to be my dear friend Rachael’s dad, also has Myeloma. He was diagnosed seven years ago and he has had two relapses. Huw, the man in question, has handled his illness with strength and courage, and his family have been both an inspirational and a support to me since I was diagnosed in August. Rachael, for example, just today, braved driving down Holloway Road to see me. That really is something else. To find out more about my views on the family, please revisit the blog post below:

https://ejbones.wordpress.com/2012/10/07/aspiration/

It’s late now, so I will leave you with the link to Neil’s page.

http://www.justgiving.com/Neil-Whitney/?utm_source=Sharethis

Many thanks for your time and the warmest of regards,

EJB x
Lazy Arse

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Who Wants To Be A Millionaire?

Whilst I have energy, I feel my time is best spent bribing my friends to remain my friends by baking for them. This weekend’s efforts were not even made with anybody in mind. It was partly done as a personal challenge to see whether I could make a sweet and tasty caramel, but really, I baked to encourage people to walk through the front door. It worked. To date, nine people have sampled my goods. Ten if you include my friend who licked the bowls.

That is a lot of bribery.

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I should probably bake some more this weekend. It’ll tie me over in anticipation of my fortnight off of being a social butterfly during my treatment. Stupid treatment.

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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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Walking In Dalston

It surprised me when I woke up this morning and realised that despite regularly leaving the flat, I have not walked anywhere completely by myself since I was diagnosed. I very much miss this independence, an independence that the majority of human beings have. To begin with, my reliance on vehicles and friends was through necessity and somedays this is still the case. I cannot walk very far and definitely cannot carry a great deal. It is my reality. On a good day, my mobility is such that I can walk some distance. It does scare me though. I like the security of walking with somebody else. What if I were to fall over? Who would help me get up? What would happen if my left shoulder decided to be an arse and I could not hold the walking stick and a handbag? How would I get home if one of my vertebrae decided to fracture again? So many fears… So this morning, I realised that I was being a wuss and it was definitely time to bite the bullet. I cannot do anything about the medicine, but this sort of progress is within my control. There is no need to sugarcoat it, I was being a sissy. And thus, after a bath, I decided that I was going suck up the fear and venture into Dalston proper, by myself, to buy some face wax (seriously, the steroids) and a salt beef bagel.

Venture I did. It is a walk I have done hundreds of times, but there was something quite exciting about doing it today. I felt naughty. I felt like a naughty, brave person. It is a grey day, and I know this is a cliche, but I was looking at Kingsland High Street through rose tinted glasses and I wasn’t wearing glasses. It is quite strange to romanticise the Kingsland Centre, but that I did, because I was by myself, headphones adorned, buying stuff, just like normal. Normal. Well, reasonably normal, my right hip is being a pain in the arse today and the act of walking was quite difficult and the stick was actually required rather than me simply using it to keep my public at bay. I didn’t let it spoil my fun though, nor the fact that the bagel shop did not have salt beef.

This then, is how I saw Dalston today, through my special glasses and my iPhone.

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It is so pretty.

EJB x

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Half Term

Over the last two days I have thoroughly enjoyed not feeling unwell. All being well, I have a further seven days of feeling well ahead of me. YES! I have no treatment this week.

No drugs. No drugs. No drugs in my body. Correction. No treatment drugs in my body. Pain control and the protectors will be entering my body, but they do not make me tired and they do not make me sick. YES!

I am only in the hospital once, on Wednesday, and although I will hear some difficult things during this appointment and I anticipate that I will hear more on Friday when a decision is made on my treatment, I have little intention of letting these things ruin my week. Sure, I may be saying something completely different on Friday when we find out about the paraprotein, but I think I am prepared for whatever happens there. POSITIVITY!

So, over the next week I intend to do some of my beloved work, catch up with my correspondence (you really get a lot when you have cancer, it makes you feel dead special), write some humorous blogs, go to a daytime screening of ‘Skyfall’, see my friends and attempt to be a better friend than I have been of late.

I literally cannot wait and I want to savour every moment because I know that it will be another three weeks before I feel like this again. Bloody cancer treatment.

EJB x

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Well Done Meat

In an attempt to avoid bad bacteria, I am on a cancer diet of well cooked meat. I had all but cut meat out of my diet at the start, but it turns out as a lifelong meat eater, I need meat. Even if it is well done. I miss blood. Blood.

I shouldn’t really complain, because at least I can still eat meat, for other foods, like shellfish are out. Prawns no longer exist, they cannot exist in my mind for me to be able to function. Mmmm, juicy prawns. It’s a shame you are now extinct. ๐Ÿค๐Ÿค

I might fancy a bit of liver one day, but I cannot have that either. Pรขtรฉ is going to have to be replaced by rillettes in the Jones household this Christmas.

A bit of salad? Not on your life. There is something about having to peel a raw tomato that spoils the magic. Oh cherry tomatoes, I miss you. I miss the pop in my mouth and the subsequent taste explosion.

Back to the meat. I have been concentrating on white meat or the stewing cuts, because wise people wouldn’t eat those rare anyway. That was until I was given a steak. A beautiful looking steak. I was scared, I was frightened and just plain worried that I would ruin this steak’s steak by cooking it well done. I researched recipes, selected one and hoped for the best… Anxious… My, it was one tasty juicy steak. It may sound ridiculous, but I am relieved. Relieved that cancer has not taken away my ability to eat tasty cuts of meat. Juicy meat from animals.

๐Ÿ„๐Ÿ๐Ÿ–๐Ÿ“๐Ÿ‡๐Ÿ—๐Ÿ–

The blood will return, in time, on one sweet day. After I have eaten a lobster.

Now, I must go and undo my jeans.

EJB x

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Lockdown๐Ÿ”’

I am used to a weekend’s lockdown. Back when I was a healthy person, I regularly had to endure a weekend’s lockdown for work and I embraced these times. It was an excuse to rest and bake. These days, now I am not a healthy person, I have a lot of time to rest and not enough time to bake. Annoyingly, I have the energy today to not rest, but my immune system is low, very low and is likely to remain so until Monday. Thus, for health reasons, and because it was this time in the last cycle I caught my cold, I am staying in the flat all weekend and sick people are strictly prohibited from entering.

What to do then? Hmmm. I just cooked a friend lunch and another friend is visiting shortly. Earlier, I did the dishes I had not done for two days because I did not have the energy to do them. I have put the recycling out. I have planned all my meals. I have produced a stool. Maybe it is time to finally conquer the knitting. I could bake whilst listening to Magic FM. I will probably wax my beard. I am most definitely going to watch a film or five, intermixed with some racy Scandinavian crime drama. I may sleep. How many hours is that? โณโŒ›โณโŒ›

I bet you are jealous of my life.

All I know, is that I am going to be seeing a lot of the following over the next 48 hours…

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Who am I kidding? Of course you are jealous.

EJB x

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Babies ๐Ÿผ

Yesterday, I had my long awaited appointment with UCH’s Reproduction Unit. Prior to the appointment, I did not expect to get any firm outcomes or absolutes; this turned out to be the case. As I said to the doctors, it is something that I expect now from in all aspects of my treatment. No absolutes and no guarantees.

First off, I was once again was impressed with the service provided by UCH. My appointment was multidisciplinary, with four doctors attending. One from the Haematology Department to explain the impact of my treatment and three from the Reproduction Unit. Actually, I think two of them were there for training, but at least it made me feel like I was having a serious appointment rather than one to placate the 28 year old single girl suffering from cancer.

I would just like to confirm that I did not fall asleep in the waiting area prior to my appointment in a Velcade Moment (yesterday was predominantly made up of Velcade induced sleep, hence me blogging now and not yesterday).

At this juncture, I have all but reconciled myself to the fact that I will be infertile once my treatment has concluded. I like to think that this is realistic rather than pessimistic. There are too many variables and the odds are firmly stacked against me and my ovaries.

Treatment vs. Babies

My only option at the moment is to continue with my treatment. As much as I want to safeguard my childbearing future and bank those eggs, my health is paramount and there is no time to freeze my eggs. No time. There is not an anticipated break in my treatment either, which would allow the Medically Trained People to collect them at a later date. The annoying thing, and actually I am glad I did not know this until yesterday, is that my current treatment is unlikely to affect my fertility. The chemotherapy drug I am on does not pose a great risk. If they change my chemotherapy? Well, then that may or may not have a negative impact. The principal of my trial, if successful, would buy me time to fertilise my eggs, providing I had a complete response and did not require a stem cell transplant at the end of it. Realistically, this is not going to happen either, and I will require a transplant. If I come off the trial next week, I will definitely require a transplant.

I am told there are no firm statistics, but given the amount of chemotherapy and radiotherapy required for a transplant, either your own or a donor, the chances of being fertile at the end of it is 5-10%. For the donor stem cell, there statistically more chance of me dying during the procedure than me being able to have biological children after it. That is one scary statistic.

But my health is paramount. It is a horrible situation to be in, but I want to live. That is my goal and if I succeed, I can find a way to have babies afterwards. Do you want to give me one? I promise not to make it obese.

It is not all doomed. Again, there is no guarantee that this will work, but the Medically Trained People can give me a drug that temporarily shuts down my ovaries, with the hope that it fools the chemotherapy into not attacking them. The odds of this working are slim and there are side effects with the drug, but as I explained to the doctors, I am willing to try anything, if it gives me a glimmer of hope that my eggs will be saved. I have yet to Google the drug, but the side effects are essentially those experienced by ladies going through the menopause. Hot flushes and a dry vagina. A dry, tattooed vagina. This I can cope with. Apart from my tattoo, it’s only temporary. The drug also thins your bones, but I have Myeloma, so….

I am not sure when I will start receiving this injection, but I will ensure that my haematology doctors liaise with the reproduction doctors about any change in my treatment. More drugs, but I can see what this one can achieve, and I think it is worth it. I want children that much.

I had to ask the question whether I would physically able to carry a foetus full term, and again, they don’t know. Nobody knows what state my bones will be in the end of this. I just have to sit tight and wait. Tick, tock, tick, tock, your biological clock.

Not being able to have children is an emotional subject for me. You may ask if it is so important, why I had not cracked on and popped a few out already. Well, I hadn’t. It was not how my life was structured and I did not anticipate getting cancer, let alone a cancer that is such a bastard. I thought I had loads of time. Single ladies, go out and freeze your eggs now! It’ll be like having a pension. A little bit of extra security.

As it is such an emotive issue for me, I could feel the tears come during the appointment. I fiddled with my bag and took notes, but then the headache started and my voice started to break… So what did I do? I started to hysterically laugh. Hysterically laugh about my sister. My sister was considering doing a sponsored parachute jump, to which I said she could not. There is too much riding on her. Her stem cell, her eggs, her. The haemolotologist agreed. I think they may have thought I was a little mad. The laughing was ridiculous and was accompanied by me saying on repeat “we’ll just wait and see”. I think I held it together quite nicely. I left the appointment room, walked down the corridor, stepped into the lift and burst out crying. I then left the building, walked to the main reception, booked my travel, purchased a packet of prawn cocktail crisps and cried some more. I cried because I have to wait and nobody can tell me what is going to happen. But then, I knew this already. Then Middlesborough texted, at just the right time, and she reminded me that my health is paramount and I realised that it is. At the moment, surviving is all important and anything on top of that is a bonus.

And thus, I will sit tight and wait. Tick, tock. Tick, tock.

EJBx

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