Myeloma Cancer - What can you do?

Happy Birthday Robert Lloyd Trought

Robert, my brother would have been 48 today.  On 2nd June this year it would be 4 years since he passed, I look at the picture and it feels like he was just here.  I never told him enough that I loved, admired and was proud of him.  We can't wait until our loved ones die before or get sick before we tell them how treasured they are.

Robert was loving and encouraging and had 3 gorgeous children and in 2009 he was diagnosed with Multiple Myeloma. He fought the disease for 4 years in the percentage of people where the chemo and other debilitating drugs had little effect, the cancer spread all over his body. 
Surely we thought, a Bone Marrow transplant would help - as his sisters we were initially encouraged only to be told we were not a match - how could it be?  

As I look back I there were many things that I could have done differently, and we can't beat ourselves up as we did what we could at the time, I didn't want to deal with the possibility that he wouldn't pull through and hid behind caring for my mother.  The guilt creeps in, the 'would haves', 'should haves', and 'didn't do enough' start to ridicule you for being less than you thought you were.  But you have to make room for action, we will not accept ill health and disease as our fate and fight to find remedies, cures and prevention measures.

Death will come to us all, and we don't want to face it with any regrets.  So now that you have time on your side, be it a day, a week, month or even a year, make the most of it!

I share some of the journey of the time we held on to hope that things would be alright and he would stay with us in the following posts:

Prayer

Update

Understanding

In the Memories of Home posts I share memories of growing up that I shared with my brother and sister.

Memories of Home

What you can do?

Where ever you are in the world YOU CAN make a difference, find your local organisation and support their work.  

Here in Barbados one of the organisations we have is The Myeloma Lymphoma & Leukaemia Foundation of Barbados you can support by becoming a member $25 and support the events and initiatives that they put on.  We attended their Annual Tea Party, they have a number of acts performing, and it is a lovely event, a lot of work goes into organizing it.

Tea Party, always well attended!

Tea Party Dance Troupe

Co-Founder/President - Hyacinth Grimes

Tea Party Young Steel Pan Band, excellent!

They also do a lot of much needed fund raising as well at different events, malls etc, sharing information about the disease and help available.  So many people who are diagnosed in Barbados face very high medical bills, and are unable to afford some of the treatment that may readily be available in the UK or US.

Information available at their stall in Sky Mall

Member - Daphne Springer sharing her knowledge of blood cancers in Barbados

Contact the The Myeloma Lymphoma & Leukaemia Foundation of Barbados at:

• Mailing address is P.O. Box 235, Bridgetown, Barbados, or Pine Medical Centre, 3rd Avenue, Belleville, St. Michael, Barbados.
• Office phone number is (246) 435-3990.
• General email address is: mllf.org@caribsurf.com

As an artist I will be creating a set of 3 Prints and Cards that you can purchase and 30% of the cost will be donated to the organisation.  I will tell you more in another post over the next few weeks.

Why not think of ways that you can donate or raise funds and do your part.

Donation

We also have a fund raising page in Roberts memory which is supporting Myeloma UK, and Cancer Research please help raise funds for more research, if we all do our bit we can one day find cures to prevent others from loosing their loved ones.

Give Blood/Bone Marrow

Become a bone marrow donor

Give Blood - If you have had a blood transfusion prior to 1995 you will not be able to give blood see HERE

Check out the following Organsiations

IF YOU WISH TO REGISTER AS A POTENTIAL BONE MARROW, BLOOD OR ORGAN DONOR VISIT: 

ACLT Office - Tel no. 020 8240 4480, 7A Rathbone Square, Tanfield Road, Croydon, CR0 4HA  Please call ACLT office to book a 30 minute appointment. 

NATIONAL BLOOD SERVICE; BLOOD DONATION CENTRES Tel 0300 123 2323

Anthony Nolan Register Tel no. 0303 303 0303, You must be aged between 16 and 30 and generally healthy

DKMS - DELETE BLOOD CANCER Tel no. 020 8735 4230To everyone over 30 who can't join the Anthony Nolan bone marrow register. You can now join via DKMS ‘Delete Blood Cancer' Please CLICK HERE They will register potential bone marrow donors from 17 to 55 years. You must weigh over 7st 12Ibs in weight

Robert, see, your memory lives on in our hearts through your children, family and friends!  So too all those who remember family members and friends who have died from Cancer.

What ever you can do is appreciated, do it today, don't wait, don't put it off, think creatively how you may be able to support, it could be money, time, skill, bake sale, car wash, art classes - we can do it together!  

Stay blessed and be a blessing.

Dementia - Journey of a Carer

This post is part of the SITS Girls Back to Blogging Challenge – Day 3. It originally appeared on this blog in 2009.

I thought I knew all there was to know about dementia and what to do, but each day seems to bring new lessons and learning and insights that I hope to capture in the blog, but also as a means of unraveling my own misconceptions, guilt, joy, ahha moments, and look at a condition that so many people seem to be facing and effected by.

As a carer, my journey started in small ways that I wasn't even aware, but were excused by 'oh its just been misplaced' or 'shes just trying to make you feel bad', but very soon became cause for concern and action needing to be taken. Some areas have been sorted and taken care of quite easily but the social services and care system can be a mine field. Apart from the charities that provide advice there didn't seem to be one voice of information and help that didn't need unravelling, along side support for the carers.

We were assigned a social worker who had a mother who was going through the same thing, but rather than relating it felt as if to get a response or help my mother had to be totally isolated and a urgent danger to herself. There were too many departments to deal with, too many cut-backs and no one seem to take any notice of the carer and the experience and talk to us rather than talk at us.

Life for a carer is never the same, all the things you took for granted become a luxury, there are expectations as to what you can or should do. When your worn out from sleepness nights trying to convince the person that you are caring for that there aren't insects crawling on the floor or finding ways not to agree that there are insects but you will do something about what they think they can see, and then bit your tongue when they shout at you because you didn't do it properly - it can be hard going. Its vital and can be a welcome release to talk to someone else who is a carer.
Millions of carers and health professionals voice the same concern for more research on the condition and support for carers who are saving the Health Service both money and resources. I believe art and creativity can have an impact on their quality of life and currently looking into work being done internationally with creativity and how we can measure impact on mental health and well-being, and I am also working as an artist providing art sessions for the elderly with dementia. I regularly post on my YouTube Channel videos of working in your art journal to use it as a way to express feelings that you may have in a caring role.

I have learnt so much from those who participate in my art sessions who apart from the dementia and the way it manifests itself in their life are really lovely men and women with so much wisdom and experience. If you want to share your story, contribute or find out more information join my Arts in Health Network.