~ Poems of Love ~

The following poems have been written by me, for my husband Hamada, who suffered from Multiple Myeloma [IgG Kappa] a cancer of the plasma cells, which are found in the bone marrow. After many months of chemotherapy, contracting pneumonia twice, once given only twelve hours to live and having three bad fractures to his spine and also showing in his Pelvis, he made it to four years seven months. The Multiple Myeloma attacked his Kidneys first showing at diagnosis in May 2006 leaving Hamada only a small percentage of kidney function. He never complained, using his most amazing smile even when I knew he had severe pain. Hamada underwent a Stem Cell Transplant using his own 'harvested stem cells' . During October 2007 he spent seventeen days in the "Centre For Clinical Haematology" at Nottingham City Hospital UK. where he achieved this transplant. We had a scare at six months after transplant, when told 'the beast was back' but subsequent tests showed a partial remission. Again in early 2009 it was confirmed that Hamada was out of remission He fought again during 2010 with newer chemo type drugs. First with Velcade and then with Revlimid but to no avail. His Kidneys were failing further and Hamada chose not to have dialysis. This blog contains poems and updates, written for Hamada, telling of our life together.
Now a beautiful book has been published, see http://www.susiehemingway.com/books/
showing Hamada's personal fight against Multiple Myeloma in the first fifty 'poems of love' written by me his wife. I hope you like these poems of love and also 'our story' dedicated to Hamada, who passed away peacefully at home on 23 November 2010 after a most courageous fight against Multiple Myeloma.

19 February, 2010

To Fight Once More.


"The Journey"


Hamada starts chemotherapy once more, this time with the drug Velcade combined with Dexamethasone.
Velcade is a newer type of chemotherapy - at least here in the UK - an anti-cancer drug called a proteosome inhibitor. In the UK it is allowed on the NHS to people who have already been treated with at least one other type of chemotherapy (Hamada has received several types from 2006 until a Stem Cell Transplant in October 2007)
Velcade is allowed on the NHS for first relapse after a Stem Cell Transplant or in persons unsuitable for SCT.

Starting next Monday, Hamada will receive Velcade by infusion combined with 40 mg oral dex(over two days) this will be continued twice weekly for two weeks then 10 days rest and then repeated. He must reduce within four cycles or it will be withdrawn due to the enormous cost of the drug. Some people sail through the possible side effects some of which are very serious and so Velcade is not to be undertaken lightly especially when like Hamada whose blood is very damaged from previous treatments and his kidneys are compromised, it will be an extremely tough road to travel.
It is most levelling to watch as the disclaimer is signed, listing all possible side effects some of which, are particularly frightening but is there really a choice? Hamada is quite aware that while the Para protein (M-Spike) rises in such an alarming manner now at 18.6! something must be tried before more damage is done to his bones and vital organs.

Multiple Myeloma is not for the faint hearted. It was never a choice but we are ready together to once again fight this battle, we thank the patient doctor yesterday, for painstakingly answering my long list of questions and helping us to arrive at this decision and to those he consulted regarding Hamada particular case.

We also thank our dear family, friends and fellow bloggers for all the wonderful support given as Hamada continues his fight and his journey with MM. breathe...

12 comments:

Jo said...

Oh, gosh. I have a friend whose husband has multiple myeloma, and it is a tough journey. I will say a little prayer for him, and for you too.

He is lucky to have you. But I have a feeling he knows that. :-)

Elizabeth @ The Garden Window said...

My prayers for you both as you undertake this particular journey.
Kyrie eleison.......

Roobeedoo said...

Hope it goes well for you both. Hope you are one of the lucky ones Hamada!
Disclaimer? I don't believe we were asked to sign one of those - interesting!

Susie Hemingway said...

Thank you Jo - we are most greatful for all the prayers that come our way - there is no doubt the next few months will be difficult but we are very hopeful.

Susie Hemingway said...

Dear Elizabeth,
Thank you so much for your good prayers - and yes Kyrie Eleison on my dear Hamada, for he needs the Lords mercy now.

Susie Hemingway said...

Thank you Roobeedoo, Yes I have had some positive comments about Velcade and then the not so positive but as the Prof's advice is to try - not a lot of choice left now - Hamada has decided he wants to see if he can manage with it. I will be watching everything oh so carefully. Did you have the must reduce by four cycles or it is withdrawn bit? (then I believe if it does not work, the drug company pay pack the NHS)

Yes a disclaimer listing fourteen side effects or complications! quite enough to put you right off. Did FL not sign one? Perhaps it's different where you are? Interesting as you rightly say!

John said...

Susie & Hamada;

I will be thinking of you both as you take this next step. I am praying that the drugs are tolerable and the myeloma responds.

Sandy said...

It's Monday here in the U.S. and no doubt things are already underway in the U.K., but I am sending Reiki energy and positive intentions that this exercise brings the desired results - for the highest and best good of all concerned - so be it and SO IT IS... I will be doing this every morning to align with you two and to support your courageous journey.

Roobeedoo said...

Hi Susie,
Indeed things are different in Scotland. I believe England has a NICE ruling about the drug company footing the bill if the drugs don't work, but the NHS paying if they do? Whereas in Scotland the NHS pays. FL definitely didnt sign anything, and we did our own research on possible side effects.

Susie Hemingway said...

Yes Roobeedoo you are right about the NICE ruling - this is why H must reduce in the first 4 cycles by 50% if this does not happen Velcade is withdrawn and the money paid by the NHS will be returned by the drug company. It seems quite remiss that FL's consultant did not go through all the complications that could occur, even yesterday(1st infusion)we were in oncology a long time while the pharmacist went through the list of H's meds before proceeding.

I would be inclined to ask why there was no mention of side effects and more importantly no Agreement signed and also signed by the Doctor confirming that all the particular concerns regarding the Administration of this Chemotherapy had been explained to both the patient and carer. What if you had not been so knowledgable.

Lori Puente said...

Dave is on Revlimid/Dex/Velcade. He gets weekly infusions of the Dex/Velcade. The infusions have been fairly easy and the side effects minimal, but the Dex started to become problematic so they have lowered it from 20mg to 8mg with the option to lower to 4mg if it doesn't improve. I will pray that it helps make a difference for Hamada with minimal problems!!!!!

Hanna Hilton said...

The best post ever.. How can you make it awesome like this? Thank you for sharing ;)
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