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Hey, where are all my caregivers!!!!!
I guess I miss hearing from everyone, all of you who have had husbands and wifes who had surgery lately, clock in and let us know how its going. I am thinking of
Lorrie, Pat,Pat, (theres 2 Pats) Peter K, Jeff who had his r/c today, Karen, Heenan, Cathy, Sky pilot,Eileen, Julie,
Margot, Juianne, Melodie, Maria,Holly, Joe, this includes everyone, and maybe what you need help with at present.
I guess I’ll start, its been 8 months now, smooth sailing for us so far.
we want to have the summer we didn’t have last year because of all the new
issues with b/c. How about you????? Ginger Beane -
11 Replies
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Susan,
For those who aren’t use to being on the receiving end of the giving you may find it rewarding. The thing is to let go,,let your friend give you the help you need in the abscence of a family member. With the friend I would let her know what to expect, what scares you, and maybe some of your inner thoughts. I suppose while receiving treatment you could lighten the mood by , if your feeling well enough to do something you both enjoy, not making it a 24/7 discussion on the whole deal..if you are comfortable with her she will surprise you with compassion for your situation. walk softly at first, it will all follow as it should. As my husbands caregiver I have to say I lightened the mood whenever possible, keeping things as normal as possible, knowing the underlying thoughts are on the surface at all times. This helps a whole lot….maybe since your so use to handling it all, you may just find you really don’t want to, its nice to have a soul mate who cares…let her carry some of the load!!!
Thanks for sharing your latest issue, I hope others more qualified will follow up as well!!!! Ginger -
Greetings to all — When I was in Boston for teatment and was asked on a form
“Who is your primary caregiver?” it was between G-D and myself, so I wrote “myself.”
I was living alone, walking to and from treatments, etc. Since I’ve been back to MS, I’ve been blessedly feeling well until very recently — now, not so much — but
I did accomplish the goal of finishing teaching my classes for the semester (and will be eligible to retire May 15.)This coming week, though, I’m going to MD Anderson in Houston anticipating new chemotherapy. The Dr. said I should have a caregiver with me and my friend of
two years (who was born only hours before me) says she can go. No family member can,
so what a blessing!Now, I want to try to do this while preserving our friendship. Unlike family relationships, this may not be “unconditional positive regard.”
What advice do you have for mindfulness of and respect for caregivers? I’m more
used to being on the “giving” end and the role of being helped is tricky for me.
(“lucky” for me I lost my home and contents in Katrina and got some practice
receiving help.)I’m really asking for ssuggestions here if you have some.
Appreciatively — Susan
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Hi all, Well , there was a voicemail for me from Andrea. Apparently the 4hr. Chemo treatment will actually be between 6 & 7hrs.They left here before 10AM to attend a class about Chemo, with the actual treatment scheduled for 11:45. Andrea doesn’t figure he will be ready to leave Kitchener until 6:30 or 7 & since she has a family to look after, she is going to come home & I will go get him. I spoke to him- so far so good. I’ll update later- Lorrie
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Hey Holly,
This is nice, I am getting all kinds of news, the RED HATTERS, I love it.
I see you girls everywhere, at the airport in Vegas there must have been 30 women, maybe a get together of sorts, I so admire the purple and red, its so unique, I can picture both of you, (Julie) IN THE CUSTOMARY APPARRELL.
How are you Holly,,do you think Pat is a Red Hatter.???Ginger
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Lorrie,
I knew when asking this question I would have a mixed bag of answers. This is the first one that makes me very sad. Prepared to hear how its going for everyone I thought well ask away as b/c is a mixed bag for all of us. I am sorry to hear the news for the both of you but the fact he is willing to do the chemo means he wants to live, for however long. I have to applaud him for that as he has been through so much since day one. I will keep the both of you in my prayers and I hope he has good results with the chemo , no side effects, he certainly deserves a break afterall.. Take care Lorrie, Ginger
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Hi Julie,
I didn’t know you were a Red Hatter :) So am I !!! I am Princess Globe Thistle and co-chair of the Garden Ya-Ya’s out of Janesville Wi ;D No wonder you are such a cheery soul…
Have you folks on my prayer list, God Bless, Holly -
Hi all- Thanks for asking Ginger- I haven’t had much to add lately. It’s 2:45AM here & I can’t sleep again, so here I am reading all the posts (this happens a lot- I read but don’t post much).We had a meeting with the Oncologist on the 22nd for results & as we suspected, things are not too good. There are more nodules in the lungs & they are growing & now some lymph nodes in the chest are involved as well. Surgery is not an option. She offered Chemo to try and shrink the Cancer. We were there with our kids & even though she told Bob to think about it as there wasn’t any real rush, he decided on the spot that he wanted to try it.So, today is the day of the 1st treatment-
6:AM, I didn’t finish earlier- I’m feeling very guilty- I have many things going on today that could not be resheduled so Andrea, our daughter is going to take Bob to Kitchener for his treatment- there is a 1hr. class beforehand, then 4 hrs. of Chemo.I feel so bad- I should be there. The plan is for a treatment once a week for 3 weeks then 1 week off. If it works, it will continue for 6 mos., if not then only for 3 mo.Andrea was very brave & asked the Dr. how long she thought Bob would have & while she didn’t want to answer, she finally said 6mos. without Chemo & a year with,
So, that’s where we are, We are all praying that he can tolerate the Chemo & that it will give him quality time. Please keep him in your thoughts & prayers.
Lorrie -
Boy, Julie, all that and bridge too. I am amazed how you two move on daily in spite of the interuptions. Everyone has something to offer here on the forum, I think its great how we can share, it gives all of us a boost!!!!Thnaks for letting us know whats up with you and Dick!! Ginger
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Thanks for asking Ginger. We spent 3 hours at the Cancer Center Monday because Dick’s H & H was in transfusion territory. I took the results down to Nikki Dr. M’s nurse and she came back with orders for the lab to draw the blood for type and crossmatch. Then I had to wait to schedule the appointment for the transfusion. Meanwhile I asked for a complete printout of the labs. I noticed that his platelets were down to 25 and were labeled LL but by then Nikki had left for the day. It was about 5 when we left. *note to self no more 2 pm appointments for blood draws from now on they will be in the morning.
Tuesday morning 8 am we were there for the transfusion and they told us they didn’t get enough to finish matching so needed more then Nikki said they also need more blood to see if the platelets were going up or down. I found out if they get down to 20 they will transfuse platelets.
Finally just before 12 they started the transfusion of 2 units of packed cells. The platelets were up to 33 and Dick is to stop the Revlimid temporarily. We got out of there about 4. So another day hanging out at a medical facility.
For fun we walked over to the small club house here and played bridge. Dick said he had a good time even if he was drug befuddled. I said better than pain befuddled but he is having more pain today. I will have to phone the pain clinic tomorrow.
Today I went out with my Red Hatter’s group for lunch. They all liked the place which made me glad as I had recommended we eat at Joe’s Crab Shack. We dress in purple and wear Red Hats because we have grown old. LOL
Volunteer Coordinator
ABLSC -
Julianne,
What a great day for your mom, I will share this, I took my 16 year old grandson to the skin specialist today, (pimples) I let him drive my car. I didn’t scream once, so it was a good day!!! Thanks for checking in anyway!!!Ginger -
Hello there! I’m still here. I check in every day, but guess I haven’t had anything to add. I just haven’t felt much like posting for some reason. There is nothing new here (knock on wood). I have been busy with lots of things. My oldest son (17) went to prom last weekend. Wasn’t he just a baby? We got to share this with Mama. She is so proud of him. He is her first grandchild and holds a special place in her heart. My hubbie had knee surgery Friday, so I have been playing nurse. Just a lot going on. I’m thinking of everyone, but just don’t know what to add I guess.
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