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 Do-Gooder

Many people can be forgiven for being under the impression that I spend all of my time, idle, lying on my sofa neglecting my looks and my blog, whilst wallowing in self pity. The truth is, that only accounts for 80 percent of my time. The rest of my sick leave is spent doing a myriad of exciting things that one day, I will find the time and brain function to tell you about. In the last week however, I have managed to devout approximately 10 percent of my energy to altruism. That’s right, altruism, for I, Emma Jane Jones am altruistic. I definitely did not do the things I am about to tell you about, so that I had something interesting to tell you about. I did them because at my very core, I am good and, I am selfless.

You have all heard the saying charity begins at home. Well in the last week, charity for me has actually meant thinking about me and only me. That’s home right? There has been a great deal of reflecting and delving into my personal world of myeloma, producing 2666 written words, one bout of insomnia, a photo shoot and the ability to speak to a room of medically trained people whilst wearing leather and having a hot flush.

I am yet to conclude whether these exercises have been healthy for me, but that is how I know that I am really an altruistic bunny rabbit requiring praise and awe. I have done two things for charity that you could say were difficult for me to do. They were difficult for me to do. On here, I only really talk about my current feelings. I rarely attempt to see a bigger picture. However, in two different ways, for two different charities, I have done just that. I have recounted and explored my journey from when I first felt a tinge of pain in my back to where I am now, which in case you were wondering, is called limbo. I rarely look back at my treatment, because my focus has to be going forward, and getting through the day when I do not know what forward looks like.

Looking back, firstly in words for Myeloma UK’s newsletter, was overwhelming. I did not expect to be overwhelmed, but I was. I don’t need to recount my considerably over the word limit story for you now (for that will indeed come), to say that it invoked some emotions that I would rather not have felt. It was one thing for me to recognise my stoicism and I do, it is quite another to see perhaps the mistakes I have made since I was diagnosed and to relive some of the nastiness I have encountered along the way.

The activity was accompanied this morning by something else that I would describe as ‘challenging’, but challenging on the most superficial level. This morning, in my flat, I, along with the dog, was the subject of a photo shoot. Not just any old mobile phone photo shoot after a few brewskis; this one featured an actual tripod.

When 80 percent of my time is spent being idle, the physical expansion of the my body is no surprise and being the main subject of any photograph, is now, not what I would describe as fun. It’s the end product that puts me off. Housemate however, seemed to find my posing quite funny, especially when I did so in front of some meringues. That’s right, meringues in a tin.

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It’s fine though, I think the difficulty I had in producing a genuine smile, will just be interrupted as constipation. That would be no lie in any tale about myeloma treatment.

The second of my endeavours this week, was for the little known charity fond of a coffee morning, called Macmillan Cancer Support. Some weeks ago, I was asked if I would be willing to share my story with some of their helpline staff, who were travelling to London to do some specialist training on myeloma. Maybe this is not that altruistic, but I was so pleased to be asked, I could not say no. In fact, I think I almost looked forward to it.

On Wednesday afternoon, I made my way to Huntley Street and sat through one presentation by a Medically Trained Person on myeloma treatment and escaped before a second person delivered one on stem cell transplants. I did not think my mind was strong enough for that, when an hour later I was to address the room on my many side effects from before diagnosis to my present. And address them I did, warts and all. Beforehand, I had discussed what I was going to say and I thought about it many times over and I almost remembered everything I had planned to mention. I did forget to say how my forgetfulness causes much frustration and difficulty in my everyday life. Go figure. I did not forget to talk about depression, isolation, friends, fertility and faeces. As you can imagine, it was a barrel of laughs. It was also very honest.

The person who planned the training said that I provided a human face to all the technical jargon they had sat through earlier in the afternoon… I am not one to toot my own horn [often], but I think my comments were well received, that, or they just felt sorry for me.

It’s Friday night now, and I have decided that now is the time to revert back to looking out for Number 1. Número Uno. Me. I am tired now.

Who knew that talking about oneself could be so selfless?

I have always wanted to be a do-gooder. If I was not superstitious of having a bucket list, I could tick that right off. Um, I do not have a bucket list, so I will just say that it feels so much better than a monthly direct debit… Hang on, does that make it just a little bit selfish?

EJB x

P.S. Did you know that the people on the Macmillan helpline are trained nurses? It’s true.

The Thursday Clinic Appointment

Every four weeks, I make my way with much trepidation to the Macmillan Cancer Centre on a Thursday morning for my myeloma clinic appointment. I doubt there will ever be such an appointment now, even if the lapse between them lengthens, when I do not experience some level of apprehension.

My unease is always somewhat lessened by the routine that exists when I finally arrive in the big glass building. In spite of the anxiety, these trips almost always exist on the duller side of dull. And that is a dullness that needs to be shared! Yesterday then, the routine went a little something like this:

07:45hrs:
Housemate woke me up like he does almost every weekday morning since I was diagnosed and reminded me that I had to get up for my appointment. The appointment, was at 10:50hrs. I got up half an hour later. It was difficult.

10:10hrs – Transport
I left the flat via the cheap means of travel that is the taxi ten minutes later than I had planned. Unfortunately, this is very normal for me. I was impressed that it was only ten minutes. I applied the lipstick in my hallway before I left. I also grabbed the full sharps box I had placed by the front door the night before, with the hope that I would remember to replace it with an empty one at some point whilst at the centre.

10:45hrs – Bloods
I arrived at the hospital, where I immediately made my way downstairs to the lower ground floor to have blood removed from my arm. I still continue to lack the confidence in being able to safely make my way down the stairs, so I got the lift. Laziness has nothing to do with this decision whatsoever, yet, embarrassment that this can be perceived as laziness always exists when I turn right away from the stairs towards the lift.

For late on a Thursday morning, I was surprised to see only three people in front of me in the queue. I was number 22 by the way. I would have preferred number 24, but I did not have the time to wait for two other people to go ahead of me. The receptionist on the phlebotomy reception always refers to me as ‘Myeloma’. I imagine that this is something he does to all frequent myeloma patients because our blood forms are in one pile, and he is does not hurl it at me as a form of an insult. I will not lie, I kind of like it. And you know, he might not do it to all the patients, so I can momentarily pretend that I am special or just memorable. As always, I made some light, wise cracking conversation about my weak veins the minute the tourniquet was placed on the top of my left arm.

11:05hrs – The Waiting
Yesterday, I skipped purchasing a cup of tea and instead headed straight up to the fourth floor for my appointment. I sensed that being 15 minutes late for my appointment was acceptable but 20 minutes was not. Plus, I really am not a fan of the Tetley tea.

First things first, I had to check in. I checked in and then the nursing assistant did what she does to me every month, which is something that is known as pure torture. She weighed me. Thank goodness I managed to do something, adding to my late departure earlier in the morning. As soon as I stood off the scales I got a bottle of water out of my bag and started drinking it to make sure I had the goods for my pregnancy test.

Myeloma patients are required to wait on a set of chairs in a corridor on a Thursday due to the transplant patients in the actual waiting area. In that corridor, there were five people waiting, all of whom could not raise a smile. At least, they did not in the 25 minutes I sat there. It’s a depressing wait. Nobody talks, even the ones accompanied by other people. One man who I sat next to at first, but he quickly moved one seat away from me spilt a drink on his trousers. I offered him a tissue and he just shook his head without making a sound. I smiled, he did not. I deduced that they suffer from the same apprehension that I do, they just prefer not to shout about it. So, I just sat and continued hydrating myself.

A sixth patient made an appearance, one who I had seen downstairs but failed, maybe on purpose, to make contact with. We were on a PADIMAC together and despite him being a friendly sort of chap, our conversations would occasional upset me. I suffer greatly from myeloma treatment envy and on that particular course of treatment, I had the envy. Anyway, he said he missed me and had been trying to find out how I was. He could not wait to get home and tell his wife about my curly hair. The conversation made me feel a slight twang of guilt about my behaviour on the lower ground floor when I first saw him.

11:30hrs – My Appointment
Shockingly, my wait was incredibly brief yesterday, something that I could not help but vocalise. The Medically Trained Person called my name, she had not seen me for two months, and I was pleased that she immediately noticed my movement was less strained then it was when we last met. I believe she said that I was “positively speedy”. As I continue to be in pain everyday, it is very difficult for me to notice any improvements in my mobility. I do not think my memory works that way. She saw it, at least, I hope improvement is what she saw.

In these appointments, I tend to just tell them what has happened to me in the four weeks since my last one. I had a lot to say, but had a CNS been in with me, they would have known it already, for I feel like I have been overly needy since my radiotherapy finished. I mentioned A&E, the vomiting and nausea, the diarrhoea and the increased fatigue over my last week. We also discussed my forthcoming holiday and the need for me to be cautious. I said that with Mamma Jones, I would have no option to be anything but cautious.

The Medical Trained Person told me that at my last paraprotein test, taken on 28 August, my paraprotein had fallen to 16. The folks at UCLH continue to be pleased with my progress. Myeloma treatment is not that simple, and what followed was a conversation about my low neutrophils and what would happen to my medication if they continued to be low. Unfortunately, my Full Blood Count results had not been returned and I was sent off to see the pharmacist to collect my pile of drugs.

En route, I had to interrupt a conversation a Medical Trained Person was having with another patient to say that I had to do my pregnancy test. As she said, it could have been something of a Carry On moment. The urine sample I did, not without spilling it all over my hands and the floor. It happens every single month.

12:00hrs – The Pharmacist
My visit to the pharmacist normally lasts no longer than 10 minutes; not yesterday. My FCB was back and my neutrophil count had fallen further to 0.47, and my white blood count to 1.38. As a lot of you do not need to know what this means, it is very low and the WBC result definitely explains my recent increased fatigue. And so, I had to wait as the pharmacist went to ask for some further educated advice. Any anxiety that had gone when I left my previous appointment quickly returned as I sat in that room by myself.

The decision was made that for one cycle, I would be given a cyclophosphamide reprieve and the Revlimid dose has been halved. Apparently, my body needs to a wee break from the drugs. I see positives and negatives in this latest drug development. To help the infection magnet that is my body, my G-CSF injections have also been upped from one a week to two. I now have to return to the hospital on Monday to have my bloods done again. I hope that these bloods will not stop me from getting on a plane next Wednesday.

12:40hrs – The Dispensary
I was done, and in possession of a lot of publicly funded medications bar my morphine. So, I made my way back down to the ground floor to collect the controlled substance from the dispensary. It was not ready. I was not surprised.

12:45hrs – Macmillan Cancer Support
I took it upon myself to pop into the Macmillan Support Centre to have a brief chat with my favourite ladies. I think they needed to know that I had an uncontrollable desire for sushi followed by a rare steak followed by raw cake batter. I was told that given the current 0.47, such a meal would be unwise. As if I needed to be told that.

To avoid getting angry at the snails pace of the dispensary, I spent the next hour catching up with a friend over a cup of tea. I then ran a few errands on the worse road in London Town.

14:30hrs – The Dispensary
I returned confident that my MST would be ready to collect. By this point, having been on my feet for more four hours, I was more than ready to go home. I handed in my ticket and after ten minutes of the gentleman trying to find it and telling me it was not there, and me reassuring him that it was, another person told him that it was in the floor, a mere 5 metres from where I stood. I was not pleased, nor were the six people behind me waiting to collect their drugs. I handed over my driving license and signed the form to say it was for my personal use. I must not forget that immediately before that I put pen to paper, I had to confirm that I was not allergic to any drugs and I had taken MST before. 772 days before in fact.

15:10hrs – Home
I opened the door and made my way immediately to the sofa where I stayed until 20:00hrs, at which point, I dragged myself off to bed.

So, you think all of this sounded monotonous? You can only imagine the thoughts and discussions I omitted from the experience for your pleasure. Well, just think, I get to do it all over again in four weeks time. And the four weeks after that and most probably, the four weeks after that.

This is my life.

EJB x

P.S. I remembered to replace the sharps box.

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X

Filed under: emotional wellbeing, general chit chat, mental health, Myeloma, The BrainBox

Only 4 days to go – I am often asked “what can I do to help?”

In four days time,on March 3rd 2014 the NHS will witness its second NHS Change Day.

The first NHS Change Day on March 13th 2013 was unprecedented. A single tweet sparked a staff-inspired social movement that saw people take collective action and in doing so make 189,000 pledges. It was a proud moment, especially for me, as Pollyanna was one of the passionate young people behind making this happen.

That’s my girl!

This year the goal is for 500,000 pledges.

These pledges harness the passion, drive, commitment and innovation that we see every single day from staff. Reminding us all of the excellent dedication and service that is unique to our country. It gives the NHS at all levels the boost to challenge the status quo and try something simple but different to improve patient care.

It invites us all as staff or users of the NHS to pledge our support in continue to make the NHS service the best health service in the world, no easy task in this financial climate. It is NOT politically driven and believe me the politicians have tried to harness the excitement and passion this revolutionary movement has caused.

Please take a moment to have a look at the NHS change day website by clicking or copying the link below

http://changeday.nhs.uk/home

There are some fantastic stories on this website about the improvements that have been made as a result of Change Day. Many of which, are still having a positive impact on individual practice, improving care for patients.

No matter how big or small the pledges were – from a clinician trying a child’s medicine to understand how it tasted to a receptionist promising to smile more, – they gave us all a focus and reinforced our belief in the values of the NHS.

We can all play an important part in keeping it that way –now and in the future. NHS Change Day 2014 promises to build on the amazing achievements to date. It will see many thousands more people passionate about great patient care pledging to make a difference, sharing what they do and inspiring others to do the same.

You can play your part too so back to that question

“is there anything I can do to help?”

This is something that won’t just have a positive effect on me but for anyone who uses the NHS.

Anyone can make a pledge today. Including those that use the services it provides.

Those of you who may see a better way but don’t feel they have the power or permission to make it happen, I am personally asking YOU to join with like-minded people and ignite the spirit of collective action.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has” quote by Magaret Meade

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Find out more about the amazing award Pollyanna won with some colleagues that will result in a visit to Harvard later this year.

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http://www.mixprize.org/story/biggest-ever-day-collective-action-improve-healthcare-started-tweet-0

To make your pledge you can either follow the link to the Change Day website above or sending me your pledge via this blog, text, Facebook or email and I will add it to the wall for you. I think I can even setup our own pledge wall.

Kate, my lovely sister is taking part and has pledged to share her knowledge about healthy eating at the Lister Hospital on Monday March 3rd. She will be standing alongside other people passionate about making a difference to all of our health. If you are there please pop along and say hello to her.

My pledge is to share my skills about children’s mental health via my blog and to inspire others towards having a healthy work life balance.

So if you really want to do anything to help you have a few days left so please add your pledge.

Thank you

Deborah xxx

Filed under: general chit chat, mental health, Myeloma, NHS

A year on…

…almost to the day, here I am back in the red ‘Big Brother’ chair.

Jan 2013

Jan 2013

Jan 2014

Jan 2014

Maybe not looking quite so much like a grumpy teenager but more like a wiser old lady who knows what’s coming.

I can’t say that yesterday was one of my best days. We left the house extra early and arrived at the hospital by 7.30am so I was first in the queue to get my blood tests. It was then a wait until 11.30 for my appointment with the consultant. The bonus was that Colin was able to get on with some work during this time, as he wisely brought along his lap top.

The doctor was his usual professional and empathic self who, along with my lovely new research nurse Diane, carefully explained the procedures and reassured me, once again, that it was very unlikely that I would have a cardiac arrest during the administrating of the new drug.

The results from my recent MRI scan were clearly explained and it became clear why I was having such excruciating back pain. Apparently the myeloma is growing around the base of my spine, close to the spinal cord. It’s because of this, that during my physical examination the doctor casually told me he would have to put his finger up my backside! (Sorry for the detailed information, I hope this hasn’t put you off your breakfast). As tears rolled down my eyes, I thought could this really be happening to me and wondered how much worse it could get. Still on reflection it was only a short process to check for any nerve damage and I was able to grip his finger quite tightly so all was well there.
I asked for his reassurance that I wasn’t going to become paralysed and that I had a good chance of living many years yet and he smiled kindly, in a fingers crossed sort of way, and said we have a long way to go yet.

It was then a trip to the chief pharmacist, who printed out a complicated list of drugs and procedures. Some days I will be taking 46 in all, so I need to be on the ball. I have found a new phone app that plays a lovely little tune when the next dose is due.

This was followed up by a long wait on level 2, my Parallel Universe. It was comforting to see Familiar faces who remembered my name and welcomed me back like an old friend. My cannula was inserted by my favourite, and expert at finding a suitable vein, nursing assistant. Then it was another wait for the drugs to be made up to my particular specification. They have to take my height, weight and recent blood counts into consideration, it really is quite a science and once again I am so grateful for the NHS.

Eventually the time came and I was given a 15 min bone strengthener drug (Zometa), some IV steroids and an anti sickness drug, all followed up by 30 mins hydration before the new chemo drug. This required the nurse to stay by my side and watch out for any immediate adverse reactions. It was a great relief when it all went through very smoothly, so after another 30 mins of hydration, the cannula was removed and I was free to go.

Unfortunately we hit the rush hour but we were home safe and sound by 6.45pm.

Once home, it was very important for me to carefully unwrap and organise my drugs, as I knew I had to take the next chemo drug 30 minutes after another stronger anti sickness tablet, and on an empty stomach. Having eaten very little that day and with the tempting smells coming from the slow cooker I was in quite a hurry to get the next process over with.

Last nights medication included, 10 tablets of another (new to me) chemotherapy drug called Cyclophosphamide, 20 Dexamethasone (40mg of steroids) sleeping tablets, drugs to prevent stomach ulcers, others to protect your chest and kidneys and another to warn away viral infections, pain killers in various forms and most importantly a strong anti sickness tablet. This all requires carful monitoring, so Colin double checks everything. I don’t want a repeat of last years overdose!

Finally when we did get down to eat I didn’t feel hungry anymore so I just nibbled on one of the delicious biscuits mum had kindly left behind. This was party due to my fear of possibly being sick despite all the preventative medicine I had taken.

So yesterday was a pretty full on day. Today, however shouldn’t be quite so bad. We don’t need to be in London until midday and if we plan it well we may miss the rush hour in both directions.

Thank you for all your lovely comments via this blog and Facebook, it really did help knowing you were there, by my side.
Scores on the board
PH = 5
MH = 6

Deborah
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PS. For anyone interested, the BrainBox is being put together in an easy, alternative format and will be available for pre-order very soon. For those of you who need to get invoices in before the end of March, or would like further information please contact us by email, or leave a note in the comment box.

Filed under: Myeloma, NHS, The BrainBox

So here we go again

First of all I must thank all my friends and family for a great weekend. I was thoroughly spoilt with flowers, chocolates, fresh fruit and other lovely gifts.

For the last few days I have been experiencing very painful lower back pain so I have started back on Tramadol. This drug makes me feel rather dopey and my whole body itches which is a common side effect that will hopefully ease off soon.

This week is going to be pretty busy and I must admit I feel a little nervous about the journey ahead. Today I will have my 7th bone biopsy and find out some more about the times and plans for the chemo, which starts on Wednesday. Last night, I made the mistake of reading up more about the new drug. I suppose it is better to be well informed; I now realise why they need to observe me for some time after receiving the IV drug. The trial aims to see how effective and safe it is to take Carfilzomib (Kyprolis) in combination with cyclophosphamide and dexamethasone.

It would appear that my immune system will be compromised so please do not visit if you have any kind of infection.

On Friday I have an appointment with the pain nurse and psychologist. This should help me to cope with some of the physical and emotional side effects.

Wish me luck

Deborah x

Filed under: Myeloma, NHS

Today’s going to be a good day!

Starting off with this, please take a moment to listen before reading on, its quite uplifting.

http://youtu.be/BaQdwTsVtCY

That’s the spirit I am adopting, so no more doom and gloom, especially not on my birthday.

That doesn’t mean I am not going to be realistic. I will continue to share my ups and downs because you are all such good listeners.

Yesterday was a seven hour hospital marathon. It started with a good old cry in the Macmillan centre with the lovely Vicki reminding me that I am not Superwoman, and there I was looking forward to squeezing into that sexy outfit. I may just do that still.

It was then off to see Dr Rabin, there were no hugs, no mistakes, just him telling it as it is, in a calm professional manner, whilst I tried to pull myself together. So I signed on the dotted line to take part in the trial. This will enable me, to at least be in with a chance, of receiving the drug that we all think is the one best for me. Whether I win this lottery or not I shall be starting on 6-8, 28 day cycles of chemo in a week or so’s time.

Bring it on! This time I know what’s coming and I shall be ready for you!

Following my consultation, we got to hang out for another 3 hours in the Macmillan Centre, where we get free cups of tea, tissues and plenty of sympathy. We then made our way over to the main hospital and I was able to have my MRI scan slightly earlier than planned.

I really don’t recommend lying for 45 minutes in a narrow tunnel with back pain and worst of all hot flushes. And, just when I thought it was all over, they pulled me out only to give me an injection and send me back in again for a further 10 minutes. You don’t need to join any endurance boot camps and crawl under ropes and jump into buckets of ice water, the NHS has it’s own free course you can try and get through!

We had planned to meet Pollyanna at the hospital so we could give her a lift home. But our lives are not without drama and she turned up wheeling in one of her colleagues who had collapsed in the cab they were sharing. Whilst she sorted her friend out I put my mental health skills to good use. I must just have the sort of face that says come and tell me all about it. The room was crowded,so why pick on me? Do I have an invisible badge that’s says ex psychiatric nurse open for business?

So firstly it was a lady who was searching for her lost flask that she was worried might have been poisoned. Her poor grown up son was running after her and looking rather embarrassed, as she told me all about how she thought her shoulder had turned to glass and that she was pleased that the X-ray had confirmed that she would live another day. And, by the way, her son doesn’t tidy his room.

The second was a sweet elderly lady who felt she needed to off load her story and concerns. It was all about her husband and his move from one hospital to another after a suspected stroke, how he nearly had a yoghurt that he shouldn’t have and how she struggled to put credit on her phone. I found out she lives round the corner from my Uncle Jack, but I remembered my training about not offering lifts home to people who may prove to be a little unpredictable,and after the day I had, had anything could happen.

The evening ended up with sharing a lovely meal kindly offered by Pollyanna and we were eventually home by just after nine.

So today I appreciate Pollyanna’s kindness and I look forward to seeing friends and family.

I am determined to enjoy this birthday, so bring it on.

Deborah xxx

Filed under: general chit chat, Myeloma, NHS

Happy New Year & Fingers Crossed

First of all a Very Happy and Healthy New Year to you all.

We saw the new year in with a party of good friends, great food, amazing cocktails and some excellent live music.
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We have had a good Christmas although the last week hasn’t been without some drama. Jem was admitted to hospital with bacterial pneumonia resulting with us having a little man to stay with us for five nights. He was a darling and no trouble at all and to tell the truth provided a welcome distraction from my own health issues. Although all that fun and games exhausted us all! image
I am pleased to say that Jem is on the mend and back home with her little boy now.

Today I must admit to feeling a little concerned as I have yet another hospital visit although I am trying to remain positive about the outcome. Unfortunately there is a small rise in my paraproteins, my calcium levels are up and I have developed a few tell tale symptoms. I am hoping these are not going to lead to my consultant recommending the next stage in treatment. Both Colin and I were looking forward to chasing that winter sunshine but that will depend on what the doctor has to say today so everything is being crossed. Myeloma is such a complex and very individual cancer and it has to be monitored very closely in order to stay on top of it. Careful assessing is required to establish the best course of treatment, if life is to be prolonged for as long as possible and as far as I am concerned for enough time for that elusive cure to be found. Whatever the outcome of today I know that I am surrounded by a loving family and caring circle of friends. I am also in the safe hands of some of the leading experts in Myeloma who will be doing their very best for me.

On another more cheery note I must share with you about how proud I am of my eldest daughter. Pollyanna has just been announced as one of the 25 inspiring stars in the NHS. She is passionate about making the difference to patients and although with her qualifications she could be making a lot more money working elsewhere she chooses to put her focus and energy into the NHS. Take a look at this link and see what the judges had to say about her.
http://www.hsj.co.uk/resource-centre/supplements/hsj-rising-stars/5066648.article#.UsUYuX8gGK1 That’s my girl!

Happy Birthday today mum I am planning to call you later with GOOD news.

Deborah x

Filed under: Myeloma, NHS

Catch up.

Hello Blog

I haven’t seen you for a while, I thought it was about time we had some sort of catch up.

It has to be said this year hasn’t been the easiest of years. Besides my own health ups and downs, I have shared in the sorrows of friends and colleagues who have had to endure their own journeys of loss and health issues.

Remaining positive and cheerful has been a challenge and I still battle to come to terms with the changes in my life. However through all that has happened I have had the opportunity to experience so much that may have passed me by if life had carried on as it was.

I have been overwhelmed by the love, care and support from family, friends, colleagues, nurses, doctors, receptionists, and complete strangers. I have witnessed first hand the NHS at it’s very best and I have had much more time to appreciate my delightful grandson who is like a ray of sunshine bringing joy wherever he goes.

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I have also been lucky enough to be able to spend more time with my lovely husband, sister, mum and youngest daughter (above). I don’t see so much of Pollyanna due to her work commitments but she continues to make me feel so proud as she uses her passion, knowledge and skills to improve the lives of others in her work within the NHS. Hopefully we will be able to catch up more over the next week or so as she takes a well deserved break.

Health wise, it’s still backwards and forwards to London for check ups but on the whole things are pretty stable at the moment and I have been given the OK to have a six week break. This will allow us the time to chase some winter sunshine in the New Year as we plan to head down to Portugal. So look out for some more motorhome tales and pictures from who knows where.

I would like to take the opportunity once again to Thank You all for your kindness and support throughout the year.

I haven’t sent out Christmas cards but instead donated the money to Macmillan Cancer Support who do such a wonderful job.

I wish you all a very Merry Christmas and a Healthy and Happy New Year.

Deborah x

Filed under: general chit chat, Myeloma