Hamada continues quite well with the Velcade infusions twice weekly, plus 20 mg of dexamethasone x 4 times weekly,and also the aciclovir for 21 days, this information is really for anyone following the medications Hamada is receiving and I know there are a few.
Hamada is having no other worrying signs other than a chest cold which is without temperature but still a bit concerning as it is taking a good time to leave him. I shall mention it tomorrow when we return for the blood tests and the further Velcade, ( if it is permitted and the bloods are good enough). Hamada received radiated platelets last Friday, some may wonder why radiated, well that is because he has had a Stem Cell Transplant and any blood products received must be pure. The blood comes to Lincoln from the Sheffield Blood Bank and we are continuingly grateful for this wonderfully good care.
It has been a long difficult week with the journey back and forth to Lincoln and the interminable waits between the blood taken, results going to the Oncology Unit and then if alls well, the Velcade given, a wait of three and half hours. So very tiring for Hamada and also for me to a much lesser degree. Still we fight on, with the hope that all will be worth it and this drug one Hamada has never used before, will reduce the Para-protein and thus give Hamada a good break from chemotherapy once more.
There was a discussion on the List- Serv Acor this week about using the term ‘beast’ for the illness of Multiple Myeloma.I think my poem The Fight Without Choice shown below, tells how I feel. For although the word may be sad to hear for MM sufferers, to me and I suspect for many Caregivers who are also badly affected, it is indeed a beastly intruder. I have received so many praising emails this week regarding this poem, some I have shown in the comment section here.
Be well dear Sufferers and your Carers, for it is our friendship and our continuing courage that will see off this Beast.
The Fight Without Choice,
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.
It tangled and tried to spoil,
bent, broke, quietened and flawed,
it tried to rob, steal if you may
inflict, damage and take away.
It encumbered hampered, distressed and sapped,
this dark encroacher that went to far.
Still it did not spoil or mar
love twixt us two,
this fight,
without choice.
Copyright @ 2009
Susan, Thanks for sharing. It is so inspirational. I am also a writer, a poet and very spiritual my husband was dx Feb. 5, 2010. Thanks again, Sallie n. Fl
Agree with every word you say……….. I’m also a carer to my husband who has MM, and while I can acknowlwdge that being forced to think seriously about how to spend time, rather than just living, can be constructive it’s very hard to find any REAL positives in the MM experience. I’m prepared to bet that everyone on this list, if able to answer honestly, would prefer to have their preMM life back. I know we would.
Frances & Richard in UK
Thank you so much for your beautiful post. I’m also a caregiver, and I feel exactly as you do. Yes, there are one or two valuable things we have gained from our experience, but by and large it has been awful. To enjoy pain is a mental aberration–one I don’t have!
Your poem is wonderful. As a former English teacher and a current word lover, I flinch when someone asks me to read a poem they’ve written, but yours truly meets the requirements!
Hope you have a good day with your husband and patient.
Sincerely yours,
Nancy French
Alberta Canada
caregiver to Robert
Dear Susan, your poem moved me to tears. It is exactly how I feel about this beast that has taken over my life. I just want my life back. I hate being sick and feeling dependant on my loved ones. I hate hate hate this disease and it is a beast or worse! Carol from MI
I found your poem achingly beautiful, and I am sure that others will feel the same way. I think folks “get into trouble” when they post something controversial or pretend to be an authority or insult someone else. You’ve done none of this; indeed I imagine folks are printing out your poem so that they know that someone else understands their ordeal.
Take care,
BoogieBarb
Dear Susie,
This beautiful, heartfelt poem Words penned by you and words of wisdom from others are rich gifts from people who know and feel and care like all the rest of us. They inspire us, they motivate us, they give us pause and offer meditation – each is uniquely spun around your life so we can see how MM has affected and changed the way you live, think, work, play and love. And that’s how we learn to deal with this beast – and I call it that too. Anything that brutalizes our bones, organs and body the way this MM does, deserves the lowly title of beast!
Always wishing the very best to you and Hamada – I’m on your team – go, go, go!!
With Love,
Lora
Dearest Susie,
You know how much your poems mean to me … they say so beautifully what I am feeling as we travel the MM caregiver road together. I’ve always referred to MM as the “beast” and I even have a picture of it in my minds-eye. While Vern was in remission, I sensed it laying in wait over in the corner, its nostrils flaring as it breathed in and out, just waiting for the opportunity to come roaring back into our lives … and that it did.
I keep both you and Hamada in my thoughts as you deal with this new treatment. Velcade has been good for Vern – at initial treatment and again at relapse – and I pray that it will bring Hamada to remission.
Love,
Dianne
So well said as usual, Susie. I got several positive emails from my ACOR post, and if I get some negatives, who cares?
Hey Susie! So glad that Hamada is holding up despite the cold! I hate it when Dave gets one, but am always heartened that he seems to be able to fight it. Everything is doubled edged with this MM! Poem is terrific and so true!
Love, Lori
I’ve recently started a blog, the information you provide on this site has helped me tremendously. Thank you for all of your time & work.