This is not an easy post to write….

especially as I want to be sensitive to my readers, all those family and friends I love.

..On July 10th, as many of you know, and helped to see me through the process, I had my first auto stem cell transplant, and on October 27th I got the all clear. No Cancer showing in my blood or bones. I was in remission. Hip Hip Hooray. I have heard that remission can last from about a year to 17 years! Being the dreamer I was counting on the 17, plenty of time for that elusive cure to be found.

On that same date of Oct 27, 2014, I was spiking a temperature and developing a cough, I started on some antibiotics and was told to go to my local A&E if things didn’t improve. I was admitted straight away ย to the Lister Hospital. which you have probably already read about on my previous blog, but to recap the medical and nursing care was human, caring and professional, I couldn’t ask for more empathy and involvement in my care. Thank You.

@enherts

The Lister ran every test possible into my respiritoy problems and more, but many more questions were produced than answers. So it was agreed by all to transfer me to UCLH on Nov 7th.
I am back on T16, bed 20, where I had my original transplant.
It was good to see old friendly faces, and Colin is able to stay with me here.

They immediately started running more myeloma related tests and our biggest fears were revealed. After only just hearing we were in for a nice long remission (or so we hoped), my blood and another bone biopsy showed the Cancer was back with an a vengeance. The doctors were as shocked as we were. The bad news is no more stem cell transpnts for me. There are however a couple of drugs and maybe some trials available but it’s all a bit hit and miss

Without sounding too melodramatic we are emotional drained and devastated, but we will pick our selves up. It was good to have mum and Kate here to hear the news and support us but we are sure it’s equally as difficulty for them to hear, ย Even the doctors and nurses hugged me tightly and said how sorry they were. Many of them have been on the journey with us and nurse Kate even delivered my new Stem Cells, wishing me happy birthday ๐Ÿ˜ข

So what’s next? A new regime of continuous chemo will be worked out with all its delightful side effects and no doubt a ban on various Chistmas tipples! My temperature seems to be settling, so once a few more tests are carried out and my meds are sorted I may be homeย by Thursday and get a drive in my new car. Although now being put onto a load of strong drugs, I doubt I will be actually be able to drive it my self.

I know with all your help I will find a way through this. I need you more than ever now.

Love you all

Deborah xxx๐Ÿ˜•๐Ÿ‘ผ๐Ÿ‘ธ๐Ÿ˜ป๐Ÿ‘ช๐Ÿ’๐Ÿ™‹โค๏ธ๐Ÿ’—๐Ÿ’Ž๐Ÿ˜•๐Ÿ˜ทโ˜บ๏ธ๐Ÿพ๐ŸŒป๐ŸŒžโ˜€๏ธ๐ŸŒˆ๐ŸŒ ๐ŸŒ๐ŸŒŽ๐Ÿ’๐ŸŒธ๐ŸŒท

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Oh what a night…

…that followed yesterday’s long day at the hospital. We left home at 6am and weren’t home until 12 hours later. I was so shattered I just got into bed fully clothed. I was too tired to even eat the fish pie that mum had kindly made for us, so we can look forward to that tonight. I saw the consultant and all seems to be going to plan although I won’t have the para protein results for a few days yet.

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Thank goodness for Pillboxie my medication iPhone app that sends me reminders and keeps me on top of my drug regime. Wednesdays are my big drug taking nights, so yesterdays chemo treatment was followed up with 10 chemo tablets and 20 steroids as well as all my usual pills and potions. Taking steroids is not recommended on an empty stomach, as I was soon to find out. With a bucket next to the bed, a great deal of will power and a few prayers I managed to not throw up but only just! I felt confused, in pain and sick and thoroughly sorry for myself. But despite my broken sleep, today is another day and a fresh start.

Thursdays are usually much quicker in the hospital, especially as I managed to keep my cannula in from yesterday. Kate is kindly taking me again today and we have planned to drop into the Cancer Hair Care pampering session to start with.

Thank you to my good friend Mary for suggesting a Button Art workshop. We are charging ยฃ20.00/head with all profits going to cancer research. So if you fancy joining us for a morning of tea, cakes, crafting and great fun please let me know. We will probably host it on a Tuesday morning so if you have a bit of annual leave to take for a good cause please think about joining us. We have already been commissioned for a piece of unique art, I can’t wait to get going. Thank you again to Lorna for her original ‘Buttons for Bones’ idea.

We are gritting our teeth and keeping our fingers crossed for some dry weather as the water is getting scarily close to the house. We are thinking of importing some sand and making a beach next to our new man made lake. It all looks very pretty but I don’t think we will have quite the same view if it does come inside and we have to move upstairs!

Tale care

Deborah x

The Roller Coaster ride of Myeloma

When I don’t really fully understand things happening in my life I tend to look around for a metaphor for my little brain to take it all onboard. Yesterday had started so well but then I was plunged into a world of darkness that had me searching for answers.

I started the day off in a buoyant mood, arriving at the UCLH Cancer Centre before the security guards had left and the day staff had arrived. Colin and I walked round the corner and enjoyed a leisurely Starbucks breakfast. I can thoroughly recommend their porridge.

I was first in line for my blood, in and out first time with hardly a moment to notice the small scratch. The blood is quickly sent off to be tested before the results can determine the amount of drug that needs preparing for the Wednesday and Thursday’s regime.

Colin and I then sat around in reception, him working on the laptop and me catching up on all the latest gossip in the glossy magazine.

At 10.30 we made our way up to the Parallel Universe (floor 2 to everyone else),even though my actual appointment wasn’t until 1pm. This is where I have my cannula inserted and we wait patiently for my chemo drug to be ready.

There is one particular nurse who usually gets the cannula in first time. This is not an easy process as my veins are small and well hidden, so it usually requires sticking my arm into hot water. The Super Cannula wielding nurse was busy seeing to another patient, so I had another lovely nurse, but prepared myself, for perhaps a third time lucky scenario, which is often the case if super nurse is away or busy? I needn’t have feared, the hot water and the excellent skills of this new nurse ensured we were in first time. Whoppee, this was a really good start to my Wednesday.

The day got even better as I managed to catch the eye of the tea lady and order myself a free lunch. Better than that, I was hardly out of my cannula bay when a nurse from the other side of the room called me over to start hydrating my body. This is done by IV and is necessary before I can have the toxic chemo entering my blood stream. The nurse hoped that by the time my body was well and truly hydrated the drug would have arrived from pharmacy. Now most people say that I am a pretty optimistic person, my cup is usually well than half full, but with my experience of waiting for my drug to be prepared I doubted the hopeful wishes of my nurse. Still I was in the right chair now and could get on with some work on my iPad.

Well you could knock me over with a feather. I had hardly started my lunch when the tell tale yellow bag arrived and inside it was my very precious brand of poison. By 1.30pm I was up and out of that chair, as quick as lightening and heading for home. No fighting with the rush hour and time and to spare to pick up the evenings supper lovingly made by my parents, and a quick visit to my lovely grandson, with the excuse of helping Jem with her computer problem.

We were back home by 4pm in a jolly good mood, but having Myeloma as anyone who experiences it knows, nothing can be taken for granted. The post bought with it a copy of the monthly summary letter that gets sent to my GP. Here it informs the doctor of the previous months blood tests, results from any other test carried out, the present situation and the plan of action. So it was not really new news. My consultant always very kindly and gently explains what is going on in a way that he feels appropriate and enough to take in during my monthly clinical appointment. However, the letter puts it in a much more formal ‘doctors language’ which often doesn’t make easy reading.

I read through the letter carefully, compared the results from the previous month and then usually file it away with all the rest. However when there is something new written, words I don’t understand, I end up trying to look them up on the good old internet. Knowledge is power isn’t it? I am always careful to look out for what appears to be the most professionally of sites. I didn’t like what I read, and my mood plummeted and the tears started to fall. Colin hugged me as together once again we tried to make sense of it all. Colin’s stress causes him to literally reach and vomit as his body tends to react physically to anxiety. I tried calling Myeloma research for information and support, but they were on staff training. Eventually I did get hold of a lovely nurse on the Macmillian helpline. (I’m not sure what I would do without the amazing support from this service) Macmillan is open to friends and relatives too is if you ever feel like a bit of extra support yourself just give them a call or email them. They even have a chat group for carers. The nurse, on the line, couldn’t have more caring and compassionate whilst remaining very factual as she explained every part of the letter I read out. By the end of the call I felt more reassured and able to get on with the evening, including my mammoth Wednesday night drug taking regime, consisting of 46 tablets in all.

This morning I started thinking of a metaphor, to explain my Myeloma journey,and for me being at a Theme park works pretty well, especially as I am not a big fan of these unless there is a game of ‘Pluck a Duck’going which I doubt there is at Thorpe Park. The park is unfamiliar territory, but from reading the blurb I can tell its one place I would rather not go! I however, in my world of fantasy and nightmares have found myself locked in by closely guarded gates. The roller coasters representing my Myeloma ride’s. They are scary and definitely something I would never choose to step onto even before it starts moving, but I am forced onboard to face my worst fears?

The rides at the Thorpe park describe a whole host of thrills and spills, tucks and turns.
Take for example the extreme terror of the Saw (their words not mine!).

“Now more terrifying than ever, you wonโ€™t know what lurks around the corner as you enter Jigsawโ€™s blood-curdling twisted world in the dead of night! Youโ€™ll be fired through a gauntlet of twisted metal then dragged up 100ft before being dropped through sharp rotating blades. Will you survive?”

Do people actually do that for fun?

Or you could try the Mighty Samurail

“Only the bravest of thrill seekers will conquer the challenge Say your prayers as you spin relentlessly through 360 degrees of stomach-churning terror, in one of the most extreme thrill rides the UK has to offer! This ride will show no mercy as Samurai slices and dices through the air reaching brutal forces of up to 5G’s! Be dragged backwards into a blind 127ft drop before hurtling through the wasted landscape in a series of gut-wrenching near misses, including, new for 2013, the mangled metal of a devastated billboard.”

Can you see the similarity?

Yes for some the rollar coaster comes to a sudden end, and you may get to climb off and not be called back on board for months or possibly years. (5 months in my case), But you never actually leave the park. Meanwhile you wander around grabbing hold of any exciting but much less dramatic amusements on offer. You can eat and drink, have fun, laugh and cry, you may even being to work whilst in your park but you ain’t leaving it. It dictates your life from here on in. You become acutely aware of your body, for every sign and signal that will have you rushing to the First Aid tent, or in my case Accident and Emergency department.

My letter formally stated in medical terms the findings from the MRI scans and clinical examinations. It described a large number of ‘red flags’ warning signs that MUST not be ignored. The gist of it being, the bones in my spine (T12 to be exact) have come in for some pretty serious hammering from the myeloma. A mass has also formed around it. This puts my spinal cord at a pretty significant risk of developing Cauda equina and conus medullaris syndrome. In lay terms this is a bunch of nerve cells popping out between the vertebrae with the risk of permanent irreversible damage. Hence the reason for the ‘finger up bottom’ test. The good thing is at least everyone is aware of this and we will take precautions to avoid it happening and the chemo should help. So it’s not all bad, and like I and the Macmillan nurse said “knowledge is power”.

When writing these posts it really is difficult to know what to include. The last thing I wish to do is give my family and friends more to worry about, but at the start of the Blog writing process,I promised my honesty. Also lots of people reading this are on their own myeloma journey and may find this sort of information useful, although myeloma is such an individual disease. Anyway I do apologise for any difficulties this may have caused you and Thank You from the bottom of my heart for your continuous support.

Looking on the bright side I am on the whole feeling physically and mentally very well and particularly enjoying our various projects that we have on the go. I have not even had any real succumbing to do as yet!

Today Kate will kindly take me up to the hospital and I hope for an even smoother experience, as I have still got yesterday’s cannula already in place.

Keep up your own energy levels and positive mental health state, I hope I can act as a good example as to how this works for me.

Thank you for listening.

Deborah xxx

Buttons for Bones

What a brilliant idea of my very talented, creative sister-in-law, Lorna. She has been creating some lovely pieces of art using old buttons and had the idea of selling them at The Vintage Barns in Knebworth (link to follow) with the profits going towards Myeloma Research. I am sure people could rummage around their homes for some old buttons to go towards such a good cause. Buttons will certainly help raise awareness and much needing funding into research about Myeloma, this increasingly common blood cancer that eats away at your bone marrow causing the bones to crumble. I am experiencing the very problem, currently around the base of my spine, but luckily the steroids are keeping the back pain to a minimum at the moment. I am so delighted with the Buttons idea and feel quite excited about getting involved in some Button Art myself. Just look at some of the amazing images I have found.

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Don’t they look lovely. If you could do anything towards marketing this idea or collecting buttons I would be most grateful. Perhaps you could ask around at work or put a notice in a local shop. The buttons could be delivered to The Vintage Barns or if you send me an email I could drop you my address or arrange to pick them up sometime.

And now for that link: www.facebook.com/pages/Dressing-Room-Boutique/154297627921368

THANK YOU.

Meanwhile yesterday was a long day with my drug arriving over from the States and into the UCLH pharmacy at 1.30 so by 3.30 I was plugged in and receiving and we were home by 7pm, tired and hungry.

I hope you have a great weekend, I plan to rest, interspersed with a little bit of shopping.

Deborah x

Wow what a great response…. but we are still recruiting

Thank you to all ย who have already enlisted. Many of you have asked what it is you can specifically do to help. Captain Kate and I are working together on a battle plan but meanwhile the best thing you can do is learn as much as you possibly can about the enemy.

By following the link below to Myeloma UK you will find a wealth of information.

http://www.myeloma.org.uk.

The best place I think is the Myeloma TV which shows short films made by doctors, patients and researchers all giving clear explanations as to what Myeloma actually is, the stem cell transplant, what to expect in the recovery period and about the latest research.

Some of you have also asked me about fundraising and there are lots of ideas on the Myeloma website. Perhaps there is one (or two) of you out there who would be willing to take up the role of Fundraising Officer. Someone who could enthuse us all and point us in the right direction. Someone who knows how to put the FUN into fundraising.

As for day to day living I need to keep myself as physically and mentally healthy as possible. This is a challenge in itself as already my body is feeling the effects of the regrouping cancer cells, with various aches and pains and the return of the dreaded fatigue. Keeping up beat when you know what lies ahead is not a walk in the park but lying around crying and feeling sorry for myself will help no one but the enemy. I need to find things to keep me smiling and mentally active.

One thing that is helping at the moment is a piece of work I have been given. I have been asked to produce some booklets for the children’s mental health service I used to work for. This will not only help financially but to keep me focused on something other than this dreadful cancer.

I shall also try and find some fun things to look forward to like maybe having a regular visit to my local spa (I wonder if cancer patients get reduced rates?) or going on a theatre trip, a weekend away or just catching up with friends.

Writing this blog helps too so thank you so much for taking the time to read and comment.

Just knowing you are there helps more than you can imagine.

Deborah x

Another one bites the dust…

..bone biopsy that is! It was delivered under sedation, although it wasn’t completely pain free this time. It was also lovely to see my consultant, Dr Poppat, earlier than expected on the ward. I was able to report on my progress and the plans for my long term remission, providing him with plenty of time to find a cure. I have also offered my services to talk at conferences about how to beat this. See there is fight in the old dog yet!
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My biggest sadness is missing my work and the people I used to spend so much time with. I am also quite frustrated as to how slowly my energy levels are returning as I still get quite tired in the afternoon but people keep telling me it’s still early days.
The challenge now is to raise awareness of this dreadful cancer. So if any of you out there can think of ways of helping me to do this I would be most grateful. More awareness attracts more funding meaning more research and the chance of a cure being found in time to save my life. It all sounds a bit dramatic but that is the fact. More popular cancer’s attract more funding (although it all helps) we need to get Myeloma in the public eye. You might have heard that the comedian Felix Dexter died at the age of 52 last Friday and lots more younger people are being diagnosed.
So please get your thinking caps on I need all the help I can get.

Take care dear friends

Deborah xxx

I’m having a bit of a problem nowadays….

.,,with waking up. I just want to keep my eyes firmly closed. Last night we slept in the motorhome, it was so much cooler and we both slept like logs, only to be woken up by a family of crows squabbling over breakfast.

For my NHS colleagues I want to refer back to my bone biopsy. As I think you all know by now, I had my third bone biopsy on Tuesday. For the first time I was sedated. I realise it is more time consuming to do it this way but from a patient’s perspective it was so much better. I hadn’t been told with my first two that this was even an option. Instead I was put through so much pain even though the area where the drilling was taking place was numbed somewhat. I would therefore recommend that every patient due to have this procedure is at least given the option of sedation and it is clearly explained to them, so that at least, they can make an educated choice. I appreciate that this may cause more time and expense,but you try having someone drill into your hip bone in order to extract some bone marrow! Enough said.

By the way have I told you yet how marvellous my party was. How I was lucky enough through my PA, Sharon, to be put in touch with David Mills. David started and finished the night off really well and got us all on the dance floor. Or have I told you about the CC Smugglers who are going to be the next big group to hit the music industry. They certainly know how to party and if you haven’t got their CD yet it’s available through their web site, just tap CC Smugglers into google and you will find them. Thank you so much to my aunty Maureen, who although she lives on the other side of the world, organised for their CD to be delivered to my house, and it’s brilliant.

And Jarvis and I, well I can’t kiss and tell, but let’s just say it was good to get the lot of us all back together again.

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For those of you who are not tuned into my Facebook page, I am offering a copy of the party DVD (once I’ve edited it). I just need you to email me your address. It’s free of charge although you are most welcome to give a donation to my just giving page by clicking the button at the beginning of my home page on here.

It looks like it’s going to be another boiling hot day so please do take care.

I am going to get back on to writing my book today. Somebody game me the most lovely leather bound journal, but it is so nice I am a bit nervous of defacing it. Thank you if it was you who kindly brought that as a gift for my birthday. I have been very spoilt as my real birthday, if you remember it was in January, but I wasn’t in a good place then as having just found out my diagnosis. In the hustle and bustle of the party cards got detached from parcels so I must apologise as I am still having difficulty working out who bought what, but I love them all any way.

A very big thank you goes to two dear friends Sharon and Wendy, who couldn’t make the party, but sent me a lovely gift of a porcelain tea pot and selection of teas, now my best present of all is if they would come and visit and share a cuppa with me. Just let me know when your coming, I am in a need to give you both a big hug.

I must go now I hear voices downstairs

Enjoy your day

Deborah xxx