day # 5

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A week ago today in my post ‘for as long as possible‘, I wrote the following –

It is Friday and today is the day I am looking for pain relief – today is the day I receive my Superior Hypogastric Nerve Block procedure.  I certainly will update you next week with how I feel and the results of this procedure.

Next Monday I start my radiation treatments; another potential for pain relief.  I have no expectations concerning the radiation, except I want something good to come from it.

From this past Monday’s post ‘Failed‘, here are some excerpts –

It is Friday evening and as usual my pain is great and I am feeling little to no difference in my pain level several hours after the procedure was done.  I take my usual amount of evening pills and prepare myself for another rough night.

Gary sees what I go through each day and he is frustrated the doctors cannot find the source of the pain.

Dr. L indicates there are no other tests and the radiation treatment that starts on Monday should help with reducing the pain.

In today’s post, I write the following –

It is Friday again and day # 5 of my radiation treatments.  20170416_194313 (2)I will take the weekend off and then start again Monday for another 5 treatments.  Yesterday after my treatment I met with my Radiation Oncologist Dr. M. to discuss the status of my treatments.  There is nothing new that I reported except that my pain continued to be extreme.  Dr. M. felt if I would receive any pain relief from the radiation he would expect it by the end of next week.  If I do not then we will re-evaluate the current plan and make possible adjustments.

Dr. M. also placed 2 referrals in at Moffitt Cancer Center for me to see other specialty groups.  One group will take over managing my medications and ensure all my specialty doctors are in sync with what is taking place with my care.  This group may also provide alternative pain management treatments such as acupuncture and physical therapy.

The other group is a supportive group that will provide services such as hospice and other needs I may require as I continue with treatments.  Gary and I recently were talking about looking at hospice services.  In yesterday’s post ‘Phone Calls‘, my good friend and fellow blogger Jodi over at THE CREATIVE LIFE IN BETWEEN wrote the following comment –

Terry. Has anyone talked to you about hospice care? I know it scares a lot of people to talk about but it is a field I work in and it is NOT a death sentence. It can give you a fuller LIFE during the journey you are on. They can provide a lot of support physically and emotionally and spiritually and help Gary and help your pain. Just something to consider. Some people use it and feel better and don’t need it any more. Others use it for many months. It is something to think about. Sending lots of love. Xo

Thank you to Jodi and other friends here that support me in so many ways.  Your support, encouragement, thoughts, prayers and hugs are always welcomed and appreciated.

Happy Weekend Everyone!

53 thoughts on “day # 5”

  3. Oh Terry – I have grown to love you so (and Gary!) and truly hope you can find the right resources and treatments to get you out of pain. Nobody should suffer so. If I can help in any way or if you need to talk – please feel free to reach out to me personally. You can email me if you would like at mckinneyjodi@gmail.com, and we can share more personal contact info. Big tight, but gentle hugs! xoxo

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  6. Oh, Terry! I had so high hopes the procedure would help you by now to ease you off your pain. Did they block the wrong nerve perhaps? I´ve read a bit about similar procedures lately, and learned that it can be very, very tricky to pick the right nerve at the first time. Are they planing to try again? I hope so much the radiation will finally bring you relief! I keep sending you huge hugs and sunshine, my dear friend! 😘

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  7. I’d like to put my paw in, if I may. As you look into hospice services, perhaps you might want to choose the more aggressive ones, i.e. those who provide or arrange more intervention than maintenance. They do offer lists of specific services, if you request them.
    I had made this decision for my father, with his approval, and it was the right decision.
    Have a peaceful weekend, Terry!

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  8. One day at a time my friend. I truly hope that pain relief comes soon for you, you have suffered enough. You have great resources out there, and something, somewhere just has to give you that positive result. Thinking of you always. Love and Hugs 🙂 x

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  10. Hello my friend….glad the radiation is underway and your wonderful medical team is doing all possible for you…I agree Hospice is not a death sentence, in fact I have known many people who have been on it more than once….my husbands late wife was on it 3 different times and recovered enough to graduate off…as they say…it was an extreme help and relief for him to have them help with here care and control of medications better….it also gave him the peace of mind some one was there at the end of a phone call to come if needed…I am doing everything possible to send you love, energy and relief from the Western side of the US…..soft gentle hugs myfriend….and a kiss on the cheek…!!! xxXXxxkat

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    • I am glad to know others have used Hospice and had wonderful experiences with their services. I have many options available to me and more radiation and procedures to come. I just need this pain reduced so I have some quality of life. Thanks kat for all your support, I am fortunate. Happy Weekend. 🙂

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  12. That is such wonderful advice from Jodi. I was a volunteer chaplain for hospice for many years and the individuals in hospice care had truly excellent treatment. There were MANY who “graduated” hospice and went into remission. But while in hospice team care they were more comfortable going through treatments.

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    • I am glad to learn so many wonderful comments concerning hospice. It and other options are available to me for my care during this difficult time. Thank you Bethany for stopping by today, I appreciate you very much. 🙂

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  13. I agree with Jodi in as much that an all encompassing care program which would offer care, support, and comfort for you and Gary would be of tremendous benefit. Indeed any relief of your current situation would be a huge improvement.However, I don’t know how the hospice versus palliative care programs and systems are set up in the States so I can’t offer a comment on which would be most helpful. ie some are time sensitive, some are for people who are no longer receiving medical treatment, some offer in home care, and eligibility and costs vary. The differences go on.Nevertheless, I’m so glad that you and Gary are exploring every avenue open to you for help and additional care.Hope your weekend is as calm and smooth. Amanda

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    • We certainly are exploring our options for available care and help. Moffitt Cancer Center offers many services. Thank you Amanda for the information, it certainly helps. Have a great weekend. 🙂

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  15. Well done Jodi. I am delighted that she has been able to offer such tangible and timely advice. All the energy pooling here must surely pay dividends. I send you the gentlest of gentle hugs.

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  18. I hope that the doctors can find a combination of pain meds that work for you while you are receiving the radiation. Your body needs to rest and that is most likely when the pain becomes unbearable. You need more rest and meds as you struggle through each day because it affects other parts of your body too, as I am sure you know. I hope you have more than just the morphine to help you, like a sleeping med, antidepressants, and antianxiety pills too. Do you wear a patch for pain relief? The doses of patches can be increased to. There are some lotions that can have an opioid mixed in with it, by an apothecary, and used topically at the pain site. I have Oxycodone that is crushed and mixed in with my hand lotion. I wish you love and more!

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    • Oh yes, I am on all sorts of medications to help other areas besides just the pain. And I have patches and creams as well. I struggle each day, with some days better than others, but somehow I get through them and another day awaits. Thank you Sharon for your beneficial comment, I appreciate your support. 🙂

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