Day + 13

For 15 days and 14 nights I have ‘defied all odds’ and I have only stepped in foot of a hospital once to see the view from the 16th floor of the tower. The world I have seen has been very much restricted to half of University Street, approximately a fifth of Huntley Street, a few lifts, the Ambulatory Care, a treatment room or two and the Cotton Rooms. Most of my day, I would guess at least 90% of my day has been reserved for my bed and the room it is in.

I have saved you from the monotony of this, mainly because I have not had the energy to put words into sentences in my real life, let alone on a blog, but I have an hour to kill right now, so I thought, why not share my 200 metre in diameter bubble.

90 percent of my time on or in bed is a long old time to spend on or in a bed. We had to buy a blanket, so I could feel there was some distinction between the day and the night. I have watched, or at least listened to a lot of television. If daytime TV were not so horrific and my brain function not so limited, I could have enjoyed myself.

   

     

Anybody with a beady eye would have noticed that I swapped beds in the photos above.  There is a valid reason and that reason is because I was without a Mamma Jones or Big Sister from Monday morning and the former said I needed to be next to the emergency alarm. That was one of the most significant events over the last fortnight. Similar, but nowhere as painful as my five stools.

The Cotton Rooms, as I would have said the last time I experienced them, are more than palatable, I think they are better than anything Lenny Henry would advertise, and it has working air conditioning, which I could never not be a fan of. 

If the views from my beds were not riveting enough for you, I walked, possibly an entire cumulative mile in the same shoes, seeing and experiencing all of this, whilst feeling like there was a trout living in my skull, using all my available energy. 

             

   

           

   

   

It may cause some feelings of envy in you, for I have been told that not all Ambulatory Care ‘hotels’, are as slick as what I have had the (dis)pleasure to experience. The good old NHS, eh?

My favourite thing to look at each day is not a cold EMan ripe for sniffing, but a lone building, which reminded me half of the house in ‘batteries not included’ and half of the house in ‘Up’. It was a last building standing, for it’s immediate neighbours had been not so long demolished. My photo of it, does not do it justice.

  

Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed. Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed…. That’s been the last 14 days. 

Right now however, I have mixed things up a little and my view is this and my is it beautiful:

  

My routine will continue to be monotonous and I will continue to be weak, but I will be in my own beds, with the dog/dogs around me, in my own space with on demand television services, feeling rather smug in the knowledge that I had an autogenous stem cell transplant, without being hospitalised.  There is very little I can feel smug about, so I will embrace becoming an urban myeloma legend.

I’m home and that, on Day + 13 is bloody brilliant.

EJB x

Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

Day -1

As I had long anticipated.Yesterday proved to be a busy, tiring and emotional day. Fortunately, as I had long anticipated, the majority of my emotions were overtaken by the sheer practicality of all the needles, waiting and consenting. It was a day of work, if your work is displaying super human strength and kindness whilst under duress.

Day – 1 is the day popularly know as the day one receives their Megatron chemotherapy. It could be Day – 2 if one was unwell and the transplant is postponed by a day, but my title is one of hope. I will be getting my transplant today, providing the nausea behaves itself. 

Whilst I was too busy yesterday to write another blog, I was able to make a note in my Notes of the key timings and events that made up Day – 1. It was no party.

06:30hrs: Awoke feeling refreshed and rejuvenated, if those things meant I awoke feel anxious, unable to sleep but eager to get things going… I then did the things we all do as part of the morning routine of getting ready to leave the house/flat.

08:36hrs: I had said my brave goodbyes, largely ignoring my dear Bruce and at this point, I was sitting in a taxi driving down my street. The driver took the bumpy roads.

09:00hrs: I arrived at the hospital, greeted by my mother who had arrived nearly an hour luggage. The first priority was to unload all our stupid luggage, dumb luggage. I really do have a great deal of luggage. I packed four books for light toilet reading.

09:12hrs: We walked down the stairs to Reception 2 on the Lower Ground Flood, and booked in for my PICC line appointment three minutes later. I also discovered a concealed toilet.

09:15hrs: Surprise, surprise, a Medically Trained Person called out my name and with that, I was led to a room I had visited once before. It was the first point in the day I felt Deja Vu, and Deja Vu it was. For legal reasons, I had to listen again, despite remembering, to what they were about to do to me, the risks involved with the procedure and then I signed a yellow form to say I understood it all. 

I then removed my shoes and jacket and lay on a hospital bed under blue surgical sheets whilst another Medically Trained Person pushed a tube through a hole in my left arm, whilst he looked at a screen and a lady looked at my ECG results. At some point, I was told off for contaminating a scanning device with my right hand. 

  


10:13hrs: The line was in and off we went to Ambulatory Care on the Second Floor, via Costa Coffee. On arrival, I introduced myself as ‘Emma Jones, arriving for the first day of transplant stuff’. I was told it was one hell of an introduction.

10:30hrs: Alternatively known as Observation Time, meaning I had my bloods, blood pressure and temperature taken, I got weighed and apparently I am 5ft 7″; I remember being taller.

Shortly after this, I was advised that I was going to be seen by the doctor shortly and I would hopefully have the Melphalan (Megatron for you and me), around 13:00hrs. I would have to wait until then because the drug would need to be prescribed by the Doctor and then ordered from the pharmacy.

At some point, I did see a pharmacist.

12:15hrs: The Doctor finally made an appearance, to be fair, he had made several appearances on the floor, but it was at this point he introduced himself and took me to room 2.6, for a quick chat and another yellow form. I would have mentioned this before the last one, but I was told that this procedure is not curative and there was a 2-3% chance that I would not leave the hospital after it. The rest of the risks involved infections and talk of intensive care. So, I signed the yellow form quoting something I or somebody else said last week and that was “if I did not sign it, the result would definitely be negative”. 

The Doctor, who was Medically Trained also told me that given the amount of treatment I had had, my heart and kidneys were in “great” condition. Mamma Jones said “good stock”, I thought, a pat on the back for obese people everywhere.

I then wandered back to Mamma Jones and the nurses, and I was told  not to come back until 15:45hrs, at which point, I would have the Melphalan at 16:00hrs. Great, I thought, food.
12:38hrs: Before food however, we collected our luggage and checked into the hotel. Also known as the Cotton Rooms. The Cotton Rooms looks just as it did before. We are in a twin room over looking the beautiful sight that is, the Macmillan Cancer Centre. Just like before. I also made sure I got a DVD player, which is also, just like before.
A lunch then filled the gap, along with very practical trips to Boots and Sainsbury’s for fizzy water whilst I can drink it and popcorn whilst I can eat it.
14:51hrs: We returned to the cancer centre with giddy excitment ahead of the chemotherapy. In addition to my mother, I was accompanied by eight ice lollies from Sainsbury’s. 
  
16:24hrs: I was hooked up to a drip and the Melphalan, started my first ice lolly, and with that, it all started. 
16:31hrs: Ice lolly 2
16:38hrs: Ice lolly 3
16:48hrs: Ice lolly 4
16:56hrs: Ice lolly 5, an ice lolly that was accompanied not by chemotherapy, but with a flush. After a bit of faffing, all was done and I was released until 09:15hrs today. 
17:25hrs: Bed and pyjamas. Bed and pyjamas in the hotel. Needless to say, I was very tired, but not tired enough to sleep, and so I watched High Society and half of Pretty Woman.
Aren’t transplants just a hoot?
As for this morning? I woke up with nausea, fatigue and swollen feet. I still had bacon mind. 
EJB x 

The Monologue

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

Hello there, if you wondered what the above was in reference to, I can confirm that that is my constant internal monologue, and it has been all week. It started on Monday. The countdown to my transplant started when I was given the provisional date, but what I would call the real countdown, full of irrationality, interrupted sleep and attempts to open a Spotify Premium account only really started this week. 

This morning, I woke up ridiculously early after a dream about having to do a last minute piece of work, a piece of work I managed very well FYI, at the place I worked as a bright eyed and eager teenager. The dream  also featured a lot of drinking , which meant I was thirsty, but that has no bearing on this particular tale. Although vivid, it is one of the better dreams I have had this week. The one that kept me awake on Sunday night was my classic anxiety dream. I was at school and I had not studied for my GCSE’s. The difference from the usual set up for this specific dream, was that I had myeloma in it and on top of managing that and my panic at having not studied, my fellow pupils were being inconceivably mean to me. The dream ended and thus my sleep with it, by me entering the Reception crying, telling the Receptionist that I could not go on, and then I turned my head to see Bruce’s bat ears and his walking mate coming to take me home. Monday and Tuesday just featured forgettable, but sleep depriving nightmares. I do recall me falling quite a distance in one of them, I might have been pushed… On Wednesday night I slept, but I wager that was because I had had an 11 hour day.

The point of this blog is not to tell you about my dreams, but it is to tell you that this week, I am feeling what I  imagined I would  feel this week and that is a barrel of various things that all amount to anxious. I am scared, quite scared actually, paranoid, preoccupied, sleep deprived, irrational and emotional. How is that for a toxic mix of feelings? My company is the best.

To be fair to myself, I think outwardly at least, I am managing it all slightly better than my list above implies. Well, as long as nothing else rocks the balance like running out of Bran Flakes. That however, is only because today is Friday and not Tuesday when my internal monologue was at it’s loudest and most booming. Plus, when I feel this way, I am more likely to be quiet around others than sob whilst bashing my fists against the floor.

By Tuesday, after a long weekend, I was convinced, in part due to an unresponded email, that my transplant was going to be postponed. I had convinced myself that the appointment I had the next day was not going to tell me that the tests I had the previous week were fine and I was transplant ready, but something quite the opposite. Something quite bad. My appointment on Wednesday did not tell me that, it told me what my rational side was telling me all along, and it is a truth just as frightening to me as my not so illogical, fictional journies of anxiety. Do not forget, I did have one previous transplant postponed at a time when I believed it to be a dead cert, and that leaves a deep scar that even Bio Oil couldn’t irradiate.

Although I have calmed down somewhat, I am still sleep deprived and faced with the fact that bar me getting a bug of some sort, I will be going in for a transplant in five days. FIVE DAYS! Do you know painful one of those is? I do, at least I think I do, for I do not trust my memory. I have either overestimated or underestimated the various pains I am going to feel, I just do not know which. I could, of course, have remembered it all exactly how it was and it is not a pleasant experience to remember. All I know is that it is coming… Hypothesising about how the SCT is going to go this time, what day I will leave ambulatory care, how long I will be in hospital, just makes my head hurt and my tear ducts open.

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

It is true that I do know roughly what to expect from the autograft, I do not know what is going to happen with the allograft. Some might, quite reasonably say to me that it is at least three months away and I should not be concerned with it, but this week I am not rational. As the monologue and countdown continues, I know that I have five days and five nights of (reasonable) health left. Thereafter, as long as there are no delays, an event of which I am in constant fear of by the way, my life is going to be all about the transplants indefinitately. Actually, they’ll be all over me and I cannot estimate when the time will come again, when I am going to feel fit enough to venture anywhere alone. I have a countdown to losing my freedom. A Twin yesterday likened it to a prison sentence, one of the indeterminate sort.

Next m Wednesday marks the start of something that is going to be long and arduous, which has an unknown ending. When I see that written down, I can see why this week is proving to be such a hard slog for me. 

Take the emotional tasks aside and I am also a person who has five days left to ensure that she has a fully stocked entertainment unit for the hospital, which includes somehow restoring her accidentally lost iTunes collection. On top of that mammoth task, I have to get photographs printed for the notice board, finish making birthday cards, tidy my room, rewash all my pyjamas, find Doggie, fix and clean EMan, pack, go to the British Museum, have planned fun, clean soft furnishings in the lounge (added to the list yesterday), make sure the delivery yet to arrive due to insufficient postage is in fact the 2metre Apple approved phone charging cable I think I ordered and finally, buy some cheap black pants. You have no idea how huge these tasks seem to me. It’s an epic mountain of completely essential tasks, similar to the one I made before my last transplant about defrosting the freezer and sorting the cupboard of crap, only, way more important and less optional. Let us not forget that these are all things to do on less sleep, with heightened feeling and an air of mania. 

On Wednesday, I was asked quite seriously and enthusiastically if I was looking forward to my transplant. To which I responded “yes and no”. One couldn’t really ask for more than that response to such a huge question right now, but I will try…. A few hours earlier than that silly question fell at my feet, I cried to my counsellor and expressed my fear that all this impending illness could be for nothing. I then, reasoned that if I did not do it, noy go through with it, the failure I fear so greatly, would definitely happen. At the time, I thought my revelation was inspired. Inspired maybe, but I still have an uphill climb followed by another uphill climb and I am sure I’ll lose that path along the way.

Over the long and incredibly short, next five days and I am going to try to hold on to some of the inspiration I found on Wednesday afternoon. It is inevitable however, that I will struggle with it as I have done since I woke up in the early hours of Monday morning.  There is melancholy around every corner. Everything, even Housemate waking me up this morning is a reminder of what I am going to miss.

In conclusion, I am terrified and conflicted about my treatment starting and I wish I did not have to go through it all again, knowing that this time the experience and pain is going to be multiplied by at least 2.5. I know I have no other option. I know it is the best course of action for me, but this week, I feel really sad and angry about that.  I am grieving the things I am going to miss whilst I am doing it. 

Come Wednesday… well, I have to be ready, don’t I?

EJB x

Another Year

One can quite easily romanticise the eve that is New Year’s. In anticipation of an unknown future, it is very easy to hope for better things. If you think I am generalising, I might well be, for I am really talking about me. I am guilty of romanticising New Year’s Eve. If the outgoing year had been a good one, I’d go out on a high and expect equally good things for the year ahead. If my year had been rotten, I’d grasp onto the old adage out with the old and in with the new, hoping that as the clock turned from 23:59hrs to 00:00hrs my luck would magically change. It’s a silly concept really, I know that it is just another day, but there is still something inside me that says a new year should mean some sort of new beginning.

This year, as 2014 finishes and 2015 begins, I have a problem. It was a problem that was presented to me on 18 December and one that I had been aware of long before that date. It’s a myeloma related problem. My problem is fairly straightforward in it’s complexity. I know what my 2015 looks like already, well at least the first 6 months of it, and it is not something I particularly want to get sloshed in anticipation of this evening. Not only do I know what the start of my year holds, I know that I can do absolutely nothing to influence what is going to happen. My future is completely out of my hands. It is just going to happen and the only thing I can do, is hope for a happy outcome.

On the 18 December I finally found out what the medical plan is for me and it is a plan that involves a lot of pyjamas. It is a plan that means my 2015 is going to revolve around feeling unwell. In fact, the only thing I have to look forward to, is another old adage; 2015 for me, is going to have to be seen as a means to an end.

After another cycle or, possibly and hopefully two cycles of treatment, so in four or eight weeks time, I will be having a stem cell transplant. Not a donor transplant as I had anticipated, but an autograft. I’ve done it before, so I know how delightful they can be. Then, two or three months after that is done and dusted and my curly hair is no more, I’ll have a full donor transplant. I anticipated the latter, but not both. Both does a poorly Emma make. If my calculations are correct, that’ll take me up to at least June. Just like that. Six months will be gone. If all goes to plan, I will then spend the rest of the year recovering. I have done my research, and I am aware that the recovery from an allograft is no picnic and I know that I am being optimistic allocating six months to it. That six months by the way, will take me up to 31 December 2015.

I have never experienced a New Year’s Eve where the year ahead is already determined. I have never experienced a New Year’s Eve where I have hoped to fast forward to the next one. This year, I have no need for resolutions, unless ‘Do not die’ can be considered a resolution. I have no need for the January sales, unless it is for nightwear, because I have no idea what is going to happen to my body over the next six months. I have no need for plans post February because realistically, I know that I’ll be spending at least 10 months in bed.

My New Year is going to be completely dedicated to myeloma and I know that is not an exaggeration. Things may happen around that, good things I hope for the people around me, but predominantly, my year will be dedicated to ‘getting better’. Whatever ‘getting better’ looks like.

My 2015 is going to be dedicated to some intense treatment that will test me. It’s going to test me real good. Of course, what happens with this treatment is not completely determined. There is a massive elephant in my head that makes the end of 2014 and the beginning of 2015 quite terrifying. So terrifying, that I would like to stop time and stay in 2014 for a few more weeks. I know that as the countdown begins, a much bigger countdown will also begin in which I will stop floating along waiting for something to happen and I will walk straight into that something happening. It is quite daunting.

I have spent a few days now pondering what 2015 will bring, and the only certainty I have for me is that it will bring illness. I do not cherish that thought. I do not cherish some of the uncertainties of my future treatment either. I just have to hold on to the idea and faith, if I were to have faith in something it would be this, that some of this uncertainty will result in good things. Better than good. I have to try not to dwell on what will happen if those unknowns are not as positive as I need them to be.

Yesterday, I was reminded that in this dastardly life of myeloma, one (that would be me), needs to continue to hold their head high. One needs to be positive and one, when the situation looks like it can get no better and may not get any better, can be strong. The ground has been laid and I suppose, as scared as I am of it, I just need to step to it. A marvellous person showed me that this could be done, and thus, I have to endeavour to not feel sorry for myself despite knowing that 2015 will be the opposite of fun. I am lucky to be able to have this treatment in the first place.

Thus, I’m convincing myself when I say to 2015, Bring It On. That’s right, bring it on. Two transplants? Bring it on. Lots of time in bed? I have many pairs of new pyjamas.

So, I’ll be drinking responsibility to that this evening… I’ll also secretly be hoping that at some point during 2015, my luck, will somehow, with the help of one or two or a million plus stem cells, change for the better.

In the meantime, I wish you and in particular my friends and family, a very Happy New Year. 2015 is going to be a riot.

EJB x

Feel The Burn

On the first day of radiotherapy, way back when on 21 August, I was told that the treatment may cause some ‘skin irritation’. I was also told of this ‘skin irritation’ when I went in the week before my treatment starting for my planning and when I met with the Medically Trained Person who decided to give me the treatment in the first place. I did not heed the warnings. I mean really, what is a bit of dry skin when one faces the daily challenge of bone pain, whilst taking a hefty dose of chemotherapies?

On 21 August I was given a small tube of aqueous cream to apply to my back. At the time, I thought that the request was quite laughable because I could not touch the area of my back where the cream was intended. Reclaiming the ability to touch my lower back without wincing was one of the reasons I was there in the first place. I got the impression that this was lost on the radiographers. Given this slight practical issue, which I was not going to ask somebody else to do for me, and the fact that I did not experience any ‘skin irritation’ when I had radiotherapy in October 2012, I took an educated risk and decided not to apply the cream. As some of you will be aware, I spent much of the radiotherapy era vomiting and feeling less than sexually desirable, so I had little energy to consider whether the skin on my back was turning to leather.

You might have guessed the outcome of this already, but with the beauty of hindsight, I can say that my decision was a mistake.

I made a big mistake. It is an itchy, red, sore and flakey mistake, covering my lumbar region, which decided to reveal itself four weeks after my treatment ended.

IMG_0619-0.JPG
See?

It revealed itself at a time when I could not seek immediate medical assistance, so I wisely decided to self diagnose the affliction on the Internet . After a quick panic stricken detour via images of plasmacytoma, I concluded that I had a radiotherapy burn made worse by somebody who shall remain nameless, accidentally scratching the wound in question. Despite my sound medical knowledge, as soon as was practical, I sought medical advice. That was yesterday.

Yesterday, contrary to my informed self diagnosis, I was asked to seek immediate medical intervention because the symptoms sounded like shingles. To keep you up to speed on what one should avoid post transplant, a diagnosis of shingles or it’s sister chicken pox are right up there in the panic inducing bracket.

I consequentially spent two hours yesterday feeling like a leper. My visit to the hospital had to be prearranged so I could be taken straight to a private room to protect the ‘transplant patients’. I wanted to stamp my feet a little at this statement and tell the Medically Trained Person who arranged my visit that I too was a transplant patient and was all to aware of how risky shingles could be to others as well as myself. I went to the cinema instead.

So I did not alarm anybody, as in other patients and their family members waiting patiently for treatment, I had to whisper twice in reception before I was quarantined into a dark room watching Jeremy Kyle, desperate for a cup of water because I put too much chilli sauce on my steamed bun prior to my arrival at the hospital. For this reason and my potentially contagious state, I desperately tried to avoid kissing a patient’s wife but failed. It was most stressful. Thankfully, after a quick inspection, a Medically Trained Person concluded that I do not have the shingles. I have a radiotherapy burn made worse by somebody who shall remain nameless accidentally scratching it. The area was described as ‘angry’.

It was an experience almost as exciting as the time they thought I had herpes.

An hour later, I left the building with antihistamines (aka the best sleeping pill ever), menthol aqueous cream and emergency antibiotics should my back become infected. I still cannot fully reach the wound without feeling like my back will snap, so I suspect for the next week at least, I’ll be sporting a permanent grease stain and dirtying my bed sheets.

The lesson I take from this latest myeloma treat is that just when I thought I knew everything there was to know and had experienced everything I could experience, something else comes and bites me almost in my arse. And the panic ensued…

EJB x

P.S. I do not understand why the aqueous cream has to be menthol flavoured. It’s zingy.

Post 22 – Happy Anniversary (No.1 & No.2)

Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room in Wycombe Hospital with him telling me that unfortunately the Bone Marrow Biopsy that he had been so sure would come back clear, had nearly 10% myeloma in it. It was all a bit of a blur really. I had ‘Smouldering’ or ‘Asymptomatic myeloma’

We came home with this diagnosis being told that it could stay like that for years. Smouldering myeloma (how sexy does that sound for a cancer!) meant that I had no real symptoms. No bone damage, no sever anaemia (just minor), low calcium levels and no kidney damage. We were still pretty shocked at that time. I told friends and family but kept hoping that I was being my usual ‘drama queen’ self and that it wouldn’t come to anything and that I would be watched for many years. Everyone kept telling me that I could be fine for many years without treatment. 

The first few months were really scary. I read too much online. Figures saying that I only had 2-5 years to live. Stories of how myeloma negatively affected people’s lives. Nick would regularly walk in the room in the early days with me sobbing over the laptop as I read about what my life might possibly look like, or heard about another myeloma patient who had passed away. And then I started fundraising. It gave me a bit of a focus with it all and I truly believe that it helps me to stay positive about what I am now living with.

As I did all of this my paraprotein levels (the blood measurement they use to look at disease progression) kept rising slowly. But I still had no real symptoms. And then they started to get concerned at how high these levels were rising, at the fact I was becoming more anaemic and that I had some pain in my back that they were concerned could be the start of bone pain. I transferred to the Marsden in Surrey to ensure I got the best care, and in November 2011, my treatment started. 6 months of various chemotherapy to try to reduce my paraprotein levels so that I could have a Stem Cell Transplant (SCT).

Tomorrow is Anniversary No.2….3 years since I had my SCT. And with that I feel amazingly lucky. So many people that I know haven’t had 3 years of remission. With it comes the knowledge that when I relapse at some stage, that another transplant is possible, and that with that comes potentially half the length of time again that I get from this current remission. That is assuming that they haven’t moved away from the use of transplants (and that IS likely to happen at some stage.

A Stem Cell Transplant is REALLY invasive. I felt like I’d been run over by a bus. It was probably the worst thing I have ever been through in my life and ideally I will never have to go through it again. But I know I quite probably will. It is a really lonely experience. You are just so ill that you (well I at any rate) don’t want to see anyone for 3 weeks. Even the visits from Nick were hard as I was too tired to talk to him or do anything. I didn’t even get out of my room for about two weeks. But it did the job for me….it has given me another 3 years of a relatively healthy lifestyle. I think I do more than lots of people who are healthy…something I couldn’t contemplate when I walked out of hospital nearly 3 years ago. 

Being diagnosed with cancer is bizarre. It seems surreal and like it can’t really be happening to you. And like someone must have got it wrong. I still sometimes find the whole thing very surreal. Whilst once in a blue moon, I worry about dying early etc, I’m don’t think I really believe that it will happen. Fingers crossed the research will continue to progress so that this ‘head in the clouds’ mentality is a truth! I’m back now to the stage I was when I was smouldering. Believing that things will stay good. And that is great.

I will spend today reflecting a little on the past 5 years and how far I have come on my journey with myeloma. And I will also be remembering my lovely friends, and their families, who have not been as lucky as me. Pamela, Amanda, Sharon, Penny, Isabelle, Sean, Bridget and Paul….just a few names of people who were my online and ‘in person’ friends. It really brings a lump into my throat. 

And I will also be grateful to all of you who have supported Nick, me and the family through everything. We are so lucky to have you all. xxxx

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

Disappointing News re Transplant

Yesterday I had a phone call from Leicester to tell me that my donor had a medical problem that rules her out as my donor. I am hoping that the problem is not a bad one for her – at least it will have been diagnosed earlier than it might have been. I am very grateful that she was on the donor list and hope she is OK.

We are obviously disappointed. While we were initially shocked by the date we were given, Bob realised that it worked really well for him work-wise and I would have the summer months to recover. We were psyched up for this to go ahead, kitchens notwithstanding!

Leicester have asked for a new search for a donor to be started asap. It might be we are lucky and get someone within maybe 4 to 6 weeks but of course it could be much longer. This has implications for my myeloma levels until we can go ahead.

Today I talked to my consultant and we have decided on a strategy which will have to be flexible, depending on the donor situation. I have had two PAD courses of treatment as described in the last entry – quite hard going too! But the first course has brought my kappa myeloma levels down from 479 to 193 which is a very good drop. We won’t know the second for a week or two as I have only just had the blood test, but hopefully it will continue downwards.

My normal blood test readings are all pretty good – bit borderline anaemic but should be OK soon and platelets, white cells and neutrophils all fine.

I can probably have two more PAD courses – they are very toxic. So as we don’t know how long it will be before my transplant takes place, we don’t want me to have two right now and then find we have a time gap when my levels could rise again. So we are going to play a bit of a waiting game. We will see what my second PAD cycle did to my levels and also may see whether a donor can be found quickly. In three weeks I see my consultant again and we will reassess the situation.

In the meantime I am still reducing my steroid dose – it has been quite a struggle to get through the withdrawal symptoms. I have come down from 160 mg a week to 10mg so far. If I have more PAD cycles it will be back up to a high dose, although maybe not quite so high as last time. I am still very tired after weeks of only having about 3 hours of sleep a night. I am still very puffed up and my ankles are permanently swollen at the moment.

I do need to keep eating as I need to put on weight for the transplant, but the indigestion and bowel issues that brings are not pleasant! I will maybe do that a bit more slowly now, but a note to visitors – I may look more bulgy than I used to!!

We are also considering what to do about the problem of my bone marrow tests. They have been unable to extract any fluid the last two or three times and the core biopsies have not been good either. So getting accurate readings has been impossible. My consultant is going to look into the equipment used (the needle actually bent the last time time!).

So in the meantime I guess at least I will get to see my new kitchen! And we have bought a purple carpet!! Can’t believe we have done that!

Transplant News

A very quick entry until I have time to write in detail as I have lots to do. I am basically pasting in some adapted info that I have sent out to the family. However, I will put in another entry with more details of interest to myeloma patients when I can and I hope to do regular entries for some of the time I am in.

I had my second PAD cycle – found it hard going and hair fell out, though glad now as it is all nice and shaved for the transplant. I am trying to get off the steroids as quickly as I can but struggling with withdrawal. I am very tired from weeks of hardly any sleep, but I should catch up slowly now. Terrible digestion with constipation, wind, bloating and acid so going to try and sort that as much as possible before go in.

Leicester

The Leicester unit looks very good – did not see a room except in a picture as occupied. But there are a small number of rooms occupied with dedicated nurses. Free TV, will need dongle, Wii Fit, fridge, storage, ensuite etc. Separate kitchen for times I am allowed out (not all time). The consultants we have seen are brilliant and the nurses are lovely and everything went very smoothly at the appt in terms of who we saw, when etc.

We had a shock in that they have booked us in much earlier than expected. This is because I have just had the extra two chemo cycles and they want to ‘do me’ before the effects go away. Gives me a better chance at remission. I will go on on the 10th April. They prepare me for a week with various chemos and other things. Then I have the donor cells on the 17th. Then it’s basically – gets horrid then gets better over 3 to 6 weeks. Then basically once a week for an appt and also almost certainly some time back in hospital for infections etc.

I have to put weight on as much as possible before I go in! Not too much exercise (lol – can’t burn too many calories). I have seen a dietician and have lots of instructions for post transplant re what I can and can’t have.

Everything is dependent on various tests I have to have beforehand, which will be done at Northampton and also the full medical on the donor who is a full match – 10 out of 10! Which does help with the graft versus host disease – should be less. I was amazed as I thought only siblings had that level of match. But things would have to start again if there are problems with either of us or if I get ill. So very important that I am not exposed to illness, though consultant did say that I didn’t need to just stay at home – just take care. I did have a short medical and everything was fine. had a chest x-ray and ECG. I have an appt for other heart tests and will have usual lung function test (blowing into machine). Also another bone marrow. Probably 24 hour urine though that wasn’t mentioned. Did a urine sample there. Had 11 vials of blood taken (though thin ones) so definitely win that statistic for ever lol!

So – I will be off to hospital soon and lots to do as kitchen fitters come 7th April and much will fall on Bob. Still things to decide on, order etc for kitchen!!

Struggling Along a Bit While Waiting for Donor News

Sorry about the gap  in entries. This is partly because we’re waiting to see what is happening re my  transplant. I was told I had three potential donors and then that there was one good 9 out of 10 match, but we don’t yet know if she is now at the stage of going ahead.

In the meantime my kappa levels rose a little to 400 and then back down to 300 so I have obviously reached a plateau a little above where we wanted me to be. After discussion with my consultant and the transplant consultant they decided to try me on a regime called PAD. This is the Velcade regime as before (4 injections over 2 weeks with a week rest) together with a nightmare 160 mg of steroids, taken at 40 mg a day, days 1 to 4 each of the three weeks and 4 daily IV doses of an older chemo drug called Adriamycin on days one to 4 of the first week of the cycle. I think cycle two I just get the high dose steroids in the first week but then even so I will need to withdraw slowly. The details need checking as there was some confusion about it to start with.

I had forgotten how nasty chemo is with the terrible tiredness, queasiness and sore mouth. I may lose my hair but that is not something I mind too much about – it will be lost anyway during the transplant. I found week one the tiredness more or less countered the steroids – I am not used to wanting naps all the time!

The worst thing is the steroids – the lack of sleep, bloating, digestion issues, huge puffiness from face to feet with a red moon face, the leg weakness and the general mood changes and irritability. I didn’t seem to get withdrawal much except terrible tiredness. Obviously hanging in my system.

At least my platelets have held up so far and although my peripheral neuropathy is definitely around, it is not too bad.

This week the sleeplessness has been worse and now I am very tired and also feel completely woolly headed. However, we decided to get the decorating and kitchen DIY work done before the transplant as it can’t be done afterwards (spores in plaster are very dangerous for example) so we have been running around sorting that and trying to move all the stuff from the rooms. So no rest for the wicked. The clearing has been quite therapeutic actually provided I have done it slowly.

On other news – I had my tooth extracted ok but the hole left is not nice and I keep biting my tongue which has added to the sore mouth problems. No sign of jaw disease though.

I am having a gastroscopy next week to check out the guts prior to the transplant – especially to see if I have the h.pylori bug. Hope not as I don’t fancy the antibiotics that kill it. I hate these procedures but will have it under sedation as before. I made a decision to come off Omeprazole for my stomach acid as it can make you more prone to hospital infections like c.diff which I had before. I went cold turkey on it but have had to go onto Ranitidine now as the steroids give me terrible acid too.

I haven’t had any new levels yet and have my rest week with steroids coming up, so nothing much else to report. I will put up an entry when I know more about the transplant.