June 25, 2010 at 10:34 am #39252Gavin wrote:… As to scans, when was the last one done and did the onc say that they would do another one at the follow up meeting in 2 months time anyway? Or will they just do one if they think it is needed? Can understand you feeling nervous, but just keep an eye on things and try to relax. I am sure that if your sister is feeling anything is not right then you will be the first person she will tell …
Thanks, Gavin – she had her last scan at the beginning of May & he said he’ll do the next when he sees the need. He said he doesn’t think scans purely for “routine” help “as we always have to consider what we’d do with the result …”
You’re right, though – I know she’ll tell me if she feels something odd’s happening. I should stop trying to control everything & learn to live “with” it, instead of “against” it, just like everyone else has to.
Thank you, too, Lisa & Beth. It’s great to have this input.
JuliaJune 24, 2010 at 3:55 am #39251beth-oParticipant
i hope things go well for your sisters follow up. Many of us understand what she is going through in our own way. I think it is a process getting back to …something that will help define things for you outside of a disease. Encourage your sister to really think about who she is. A sister, a friend, Mother? Wife? and then the same with work. The next step is to explore what each of these things means. My sister was going through a rough divorce when i was home the first year. I used to say to her, my liver might be lousy but my ears work great. It felt great to help someone else.
I also started attending meetings for a local charity. I did not offer to do much in the begining and often made sure it was somthing I could do if I felt well and skip if I didn’t. Tonight I was voted on to the board of dirrectors! She will find her spot, it just takes time and patience.
thanks for being her support. we all need sisters, cancer or not.June 24, 2010 at 2:56 am #39250lisaParticipant
Hi Julia – I hate to talk about my health and cancer, too! It bores me to talk about it, so I figure it bores other people as well.
Glad your sis had a good time.June 23, 2010 at 1:50 pm #39249gavinModerator
Great news on your sister, long may it continue!! It sounds like she had a great week away and to come back looking like her old self as you say shows how good a week she must have had. And I can see how the break away would have done the both of you a lot of good, I can understand that, and some time not having to talk about cancer and everything that relates to it must have been a relief to you both.
Glad to hear that your sisters onc is happy with how things have gone so far. As to scans, when was the last one done and did the onc say that they would do another one at the follow up meeting in 2 months time anyway? Or will they just do one if they think it is needed? Can understand you feeling nervous, but just keep an eye on things and try to relax. I am sure that if your sister is feeling anything is not right then you will be the first person she will tell.
Perhaps now that your sister has come home having had such a good week away with lots of walking, she will feel a bit more up for getting out and about a bit more here?
My best wishes to you both,
GavinJune 23, 2010 at 11:45 am #39248
Thank you very much – all of you. I’ve printed off your suggestions & given them to my sister. She looks so well at the moment (long may it last) & I’m so proud of her. Last Monday she got on a train & went to visit my brother & sister-in-law in York. She stayed there the whole week & walked, walked, walked (& slept, slept, slept, too ) She’s come back looking SO much like her old self.
I think the break did us both good. She said it was a shock to have a week with no one talking about cancer, but she found she liked it!!
The Onc we saw on Monday is very pleased with her & wants her next follow-up to be in 2 months. He said he doesn’t believe in re-scanning purely for routine’s sake but will rescan the moment he senses anything untoward is indicated. I can see his point, but it makes me nervous … I suspect I may continue to watch her like a hawk, but I’ll try & be more subtle about it than I have been to date
Thank you – if you have any more ideas, please keep ’em coming!!
Julia xJune 22, 2010 at 2:17 am #39247linda-zParticipant
Lainy, scrapbooking is a wonderful idea. You don’t need energy to just sit and cut or whatever, and you can create something lasting for whomever you want…even if its just for yourself. I like that idea very much.
Linda Z.June 22, 2010 at 12:12 am #39246lainyParticipant
Hi Julia. Well lets see. Teddy goes to Mass each morning and sings in the church choir on Sundays. We are also speind a lot of time with our friends, little dinners a coupletimes a week. Then we are making goals like a trip to the kids for 2 weeks. Teddy is also golfing once a week. His time is spent with “social” things. I just thought of somthing, what about ScrapBooking?June 21, 2010 at 8:13 pm #39245linda-zParticipant
I too have those days when I was on chemo. (and probably will have them again) when you just CAN’T bring yourself to do much of anything. Whether that’s because of the tiredness or just being down. Just take it as it comes (and then goes) and do whatever you can, little at a time. And let family and friends “help” you out too. They really want to, so let them. And you will have your days when you will feel better and and do for others as you see fit.
Linda Z.June 21, 2010 at 7:56 pm #39244lisaParticipant
Like Betsy, I take online classes on whatever interests me. You would be amazed at the free stuff that is out there. I also like to go to Barnes & Noble, write down books that I want to get, then order them from my library.
My problem is that I get lazy at home and it is hard to beat that inertia and just get out there and do something. But I’m always glad that I did, whether it is go to the beach or go to church or Bible Study.
After one year of being on disability, I miss my job tremendously. I miss the people and the intellectual challenge. So it is important to find friends to meet with and things to do that will make up for the work I can’t do anymore. When I am absolutely sick from chemo and can’t get out there, I enjoy watching my favorite shows on my (son’s) 42″ HDTV. Naps are good, too. Never underestimate the power of a nap.June 21, 2010 at 7:24 pm #39243darlaParticipant
Nothing to add, but am thinking of you & your sister and hope the follow up today goes well.
DarlaJune 21, 2010 at 6:34 pm #39242andieParticipant
Just wanted to say good luck and all the best for today, hope all has gone well for your sister!
Best wishesJune 21, 2010 at 6:21 pm #39241gavinModerator
From my dads experience, what I would say to your sister is to try and make the most of the days when she is feeling good and not so tired, sort of like what Kris is doing I guess. My dad and I used to make plans in advance to do this, go here etc, and a lot of the time he couldn’t do them as he was so tired. So then it sort of became easier just to wait and see how dad felt and do things that day etc.
Also, when he got too tired to go out and see his mates at the pub, they just changed their plans and they would come visit dad at home. Plus the day care twice a week worked wonder for dad, but I realise it is probably not for everyone. And the learning to ride horses also helped with a sense of achievement and doing something new, plus it gave dad some exercise! Not sure if any of that will be of use or not! And I hope all goes well with the Onc today.
Best wishes to you and your sister,
GavinJune 21, 2010 at 2:13 pm #39240devoncatParticipant
I am in the same boat so I am afraid I have no answers. I do always repeat my new mantra “live within my limitations” and the key word there is live. I guess I would say my life has definately shrunk, but on the bright side I am more spontanious because when I feel good, I do try to take advantage of it. What that means for me is random meet ups with friends for coffee and movie dates.
I might also suggest swimming. It is a great way to build up your strength but the water gives you bouancy (or however that is spelled) so it is easy on a worn out body.
KrisJune 21, 2010 at 2:10 pm #39239betsyParticipant
I struggle with this issue so much that I can’t believe I’m going to even comment But I have gained a little insight into this problem. I’m kind of going through this stage of resignation and its sad but its also kind of a relief. I’ve started thinking about things I can do. For example, I’ve gotten involved with the local chapter of the American Liver Foundation. They totally understand my circumstances and are so supportive and eager to hear from someone like me. I invested in an Ipod touch and a MacBook. These 2 tools provide tons of entertainment, keep me connected to people when I can’t get out of bed, provide “snuggle” time with my kids (who have to show me how to use the darn things!) I’ve also started looking at classes online – anything that interests me – doesn’t have to be work or career related – just something to keep me going. These things have helped me to feel better about myself and beat the boredom that comes with sitting around every day.
This is a process for me that keeps evolving. Tell you sister to take heart, she is not alone in her feelings. One of my girlfriends told me, “Betsy, being productive is so over-rated!” I think she’s right.
BetsyJune 21, 2010 at 12:45 pm #3683
My sister has asked me to ask you a question. Her chemo ended 6 weeks ago (we have the 1st follow-up with the Onc this afternoon – it’s hard to type with everything crossed, but I’ll try). It’s a slow process but she is starting to feel less tired & more “human” & her optimism levels are rising.
What she would like to know is … “How do you feel good about yourself?” What do you do every day? Since her diagnosis, she’s taken medical retirement & is too fatigued for regular work anyway. She also finds it hard to commit to regular voluntary work, as she doesn’t know from one day to the next how much energy she’ll have or how she’ll feel. As a result, her self-confidence & feelings of self-worth have taken a big knock. She gets bored & wants to do stuff, but feels useless when she can’t.
Do any of you have any tips I can pass on to her??
Hugs to you all.
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