“Welcome to my home on the internet!”

As my poem “The Fight without Choice” written in 2009 tells us:

“It was never a choice was it? It sneaked in and through, along and round, this nasty wicked beast that coursed along the channels of our lives”…

How true these words seemed to me during the first few months after Hamada’s diagnosis with Multiple Myeloma, when this ‘something nasty’ found its way into our almost perfect life. A terrible feeling of being out of control and frightened that I may not be ‘up to the job’ of caring came over me. Up to the challenge perhaps I should say, with this shocking and disturbing change that must be faced. Yes a selfish thought one may think but would I have the strength to cope with everything that suddenly seemed to be taking over and would without doubt, change both of our lives. It’s huge and I have spoken of this before and know now from many friends all in the same position of caring for a love one, how these feelings of fear, coupled with lack of knowledge sometimes seem to overwhelm you in the early days of diagnosis. A big learning curve when as often happens, you have been leading a  life with more freedom and why not? For many of us perhaps for the first time now without children who no longer need our constant care. For me I had already been looking after my elderly Father who had come to live with us at “Summer House” after my Mother died. Although Daddy had Diabetes and was somewhat frail being in his eighties, he was a wonderful addition to our family life and so enjoyed and took part in all we did, never a burden, just a wonderful elderly gentleman who brought so much to our lives in every way with his wit, charm and chats over tea and tales of the war years. Although I did always have to think about his welfare regarding his meals, being available every day on time, and making sure he was well cared and catered for. I never found it a strain or burden and in many ways he was very independent. Just a little extra laundry, a larger heating bill and an occasional reminder of hospital appointments or collection of his prescription drugs but never in any way the same, as the challenges I face now.

Multiple Myeloma is a strange and unique illness, unfolding so differently for almost every patient. Its individuality is because the pace and speed of the cancer varies greatly from person to person and very often many are not diagnosed as early as they should be, so in some cases damage is well underway. Sometimes affecting the kidneys as in Hamada’s case or attacking the bones before treatment even begins. So the caring of someone is intense and always unique. Finding information and the good knowledge that you will need to deal with this complex disease starts the moment the kindly Consultant tells you “Myeloma has no known cure but is manageable” is a terror all by itself !

Where to start? What will we do? Whom should we tell? What are all these drugs for? Is this the right course of Chemotherapy that is being offered directly? So much to absorb and for someone without medical knowledge but desiring to do the right and the best thing for their love one, it is an intensely thought provoking, worrying time.

All these questions seem to appear overnight and fill your mind, blotting out all other things. Over the past four years I have chatted about these engulfing feelings with many Carers and all of us experienced the same fear, that just this little sentence often very gently said “You have cancer” changes irrevocably, not just the patient’s life but the Caregivers also.

Of course like any other subject we cannot be expected to learn this knowledge overnight nor will we. I was lousy at Maths and still am, so all the science side of complex readings were far too much for me to grasp unless broken down into percentages or nice little scales or diagrams to follow and yes your Doctor or Senior Nurse will make all this easier to understand, if you ask!  There are so many willing to help you once you make the start. It will never be something that you can ignore or pray will go away, keep asking all the questions you need , do not allow yourself to be rushed at consultations, take your note pad with all the things you need to know and write the answers as you go. It is a big learning curve but saves so much worry further down the line. You can find much support if you are lucky to be able to use the internet. Like for example the amazing American list-serve ACOR, which you can join quite easily through and via your emails. Where approximately 1,500 MM Patients and Caregivers all asking questions about Multiple Myeloma, then sharing their knowledge on-line with answers to many of the vast range of things that are worrying and affect us all – I have made friends with many in the same situation as me and we check in on each other via Facebook, Oh! the joys of modern living – It is of course for you to pick your way through the daily information entered there. Some suggestions will not be right for you nor would you choose to use them, but just by reading these daily emails, gives you further very useful knowledge. I kept a file of information that may not be understandable in the early days but will be useful later on. Knowing too that there are many like you working their way through this minefield of needed information gives one great comfort and a feeling of not being alone as you support you loved one. You will need as much information as you can gain to help you understand the complexities of this difficult illness.

With a little skill and some good management, your ‘new life’ although very different from before MM, need not be too difficult to handle. There will be days when anxiety fills your mind and everything crowds in, when visits to the various clinics are tiring and tough or while undergoing Chemotherapy which can be but is not always the horror stories you hear.

I have a few little tips that have helped me greatly during the past few years and I will share them here with you.

My very first consideration was a good sensible place to store all drugs, it is no good having them all over the place and not in a good rotation order, easily seen and laid out in a good clean dry cupboard makes ordering easier and the use of compartment pill boxes are in my view essential, a small pocket pill box is great for days out or travelling, ready for the next dose. MM sufferers with pain, do not want or need to be kept waiting for their pain medication and it is so much better if you are able to get ‘in front’ of their pain. Clear good management regarding drugs is essential. Again if you don’t understand doses ask and ask again.

Just a little forward planning can make a long day at the hospital a better one. I love music so I take along my iPod or DS in an attempt to keep my mind occupied. Or my notepad for writing as most of my readers know I write my feelings out in the form of Poems which help me greatly with release of stress. Hamada takes his Crossword or Sudoku book. The time passes quickly if you have something you like to do, instead of just gazing into space. I also try very hard to prepare a meal the day before, ready to go as soon as we arrive home. Being the wrong side of sixty I get tired too and after a long drive do not wish to be chopping and cooking when I could be sitting with a nice cup of tea.

Get good bathroom aids fitted, a seat in a shower is such a safe way for weary bones and a good strong handle to grip for someone with unsteady legs – and they can arrive at any time -is a must. So much better to be prepared.I can hear many saying I don’t need that but chemo has a habit of making even the strongest legs a little wobbly on occasions.

When someone is having problems with their blood they often feel the cold more than a healthy person, I have found the use of small throws or light blankets a boon. I have several in the sitting room when although everyone else is warm and the temperature seems just fine, the use of these rugs can be all that is needed, to give comfort.

Motivation too, is something that we all need from time to time but when you are feeling tired and unwell, a short nap is I believe essential,  just as much for the Carer as the patient, so when Hamada takes a nap I try to do so too.I know there are many MM sufferers still working but for the folk who spend many hours at home, making special times is vitally important too.  So when feeling refreshed such little things as coaxing someone from their bed or rest time with a promise of a favourite little treat. Fruit, a piece of cake or biscuit with their tea, a game of cards or anything that makes a change of scene, then becomes a nice ritual and makes all the difference to the structure of their day.

Checking that clothes are comfortable, and can easily be removed or moved up the arm make a big difference too, especially when undertaking the many blood tests that must be borne. My husband had for many years worn the very English brogue type shoes with laces, but I managed to persuade him that he could still wear his chosen leather shoes but slip-on’s now, that small change makes his life so much easier. Little carefully thought adjustments mentioned kindly, help with independence and make for good wise support. Very often the person who is unwell cannot see the little adjustments that will all help with continued independence but the Carer can. Gently undertaken, there are many things that will ease their long term burden and ultimately yours too.

Smile a lot, now I know this seems silly and sometimes the last thing you feel like doing is to smile (but smile now… see ! it makes you feel  so much better) it helps ease the way even on the most difficult day, even when everything seems to be crowding in and much is going wrong,  try a smile or even a laugh together, surprising how it always helps. Hamada and I even when it’s been the worst of days  often find ourselves laughing together at the absurdness of it all. The Doctors and nurses love it too; it must be such a long day for them when everyone is miserable.

Now to finish with a little verse that was sent to me when I first started this journey.

We may not know we have it, till we’re well into the race, Or feel we’re nearly overwhelmed, by challenges we face –But then we look much deeper for power to succeed, And find we have an inner strength that meets our greatest need.

Do not let this nasty thing that arrived without invitation, spoil the time you have together, make every day at least a mini masterpiece. Love and smile a lot, we cannot change the hand that has been dealt but as Carers finding our inner strength, we can change the way we handle it.

Carpe diem.

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