firstly I want to apologise for not replying individually to all wonderful people on this forum who responded to my last post. The after effects of Mondays chemo and the pain from my cancer are at the moment exhausting. My grateful thanks to you all for your uplifting, caring and understanding messages which left me feeling wrapped in love and support.
Also thank you for the information about different meds. After discussion with my CNS on Monday(she is wonderful and had a bit of a soggy shoulder afterwards) I am to have a referral to the Palliative pain specialist team. So hopefully they will be able to offer some help.
My thoughts and prayers are with all you amazing ladies as we travel along this bumpy road together. To Cheryl especially, I hope you too were well enough to have your Ist carbo/gem.
May we all have moments of joy in this day.
Jan. xx
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Litchick
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My palliative team were amazing at the time and I had a Macmillan palliative nurse, she was amazing she new everything conversed with everyone on my behalf and they are available 24 hours a day and do home visits. I also went into a hospice, again the most amazing place on earth [other than the Maldives]. I went as an inpatient 3 times after hospital stays, the support they give to you and your families is second to none, we all got counselling, I got the rest I needed because I wasn’t good in hospitals and all the best medication supplied, no being stingy with the meds because of cost, they give you the best. Don’t think if you go to a hospice it has to be the end and you’re stuck in bed, I was up making my own coffee and getting takeaway on Saturday night with my husband and watching tv. It’s respite and medication that a hospice can offer don’t be frightened of looking . I hope everything goes well, and your pain can be eased, think of you and sending loads of luck and love. Dee
So sorry to hear that you're struggling so much Jan I hope the palliative pain team work there wonders on you ,so that you can be comfortable ,my Macmillan nurse did more in two hours than everyone else did in weeks . I had my first infusion of gem/ carbo Monday,I'm struggling with side effects nausea, extreme fatigue ,emotional , next Tuesday I have Gem on its own , I really don't think I can do anymore, I don't want to spend the last of my time feeling like this without knowing for three months if it's going to help , feel I'm wasting time ,but will see how it goes up to the weekend . Sorry to bang on about me ,it's just that we're in a similar position . I really hope you get over the side effects quickly and get the pain relief you need ,do let me know how it goes , sending love and hugs .
Hello Cheryl, I am hoping and praying that your symptoms are improving and today you are feeling a little better. Have you got anything planned today that might lift your spirits a little?
How is your pain control? I seem to be getting a meds balance and then it all goes awry. Having been in bed for 6 days, a first for me in 4 years+ I find my emotions are all over too.
As you say we are in very similar positions between a rock and a hard place at the moment, not the best time to be making important decisions about treatment .
So I am trying to focus on the computer calls we shall have with our grandchildren today. Two live abroad but they did come to see us a couple of weeks ago and I have such precious memories and photos tucked away to keep me going through the long nights. The other is in London, and they had planned to be here this weekend but sadly I just wasn’t up to it.
I’ve just read your past posts and see you have many more, wow what a blessing. I bet you have spent some very special times with them over the years.
Tomorrow if I feel well enough I’m having the Gemzar but of course that will also depend on bloods etc. I also have an appointment with the complimentary therapist who is going to do a gentle tummy massage to try to ease the pain from ascites, I never had them before but know you are familiar with them. She also does Reiki and despite initial scepticism I have found it very soothing. If you feel it could help I would recommend it.
I will finish sending healing gentle hugs as we walk this road together .
We are very much in the same boat Jan, I hope you pick up soon and get to spend some time with your family, I took the plunge today and went out in my wheelchair for the first time, I was so anxious about it because it felt like I was giving in , but couldn't have walked ,my husband was a better driver than I expected 😄 I'm still wobbly , sickly and fatigued from the chemo . My pain is controlled but I think the morphine patch is making me feel a bit sickly and I feel like I've got an upset tummy , I'm going to talk to my Macmillan nurse when she rings me this week , I'm not having the Gem on Tuesday just don't feel I can do it, I feel a sense of relief, like you I've spent the last week either in bed or laying on the settee with no energy at all ,I will talk to my oncologist on the 8 th about it. I have had Reiki, loved it was actually thinking about booking when I opened your post. The couple of hours out have given me a boost, I hope you get the same from your computer call with your family. Sending much love
hi Cheryl, bloods were ok and had gem but also sent home with a filigstram injection.
Was ‘ wiped-out ‘ and went straight to bed and slept for a few hours.
Trying to decide if I can make it to face to face apt with my oncologist at 2.30 but if I do go will use a wheelchair. Thank you so much for sharing positive experience of using one to get out . Really helps.
Hope you’ve got something nice to look forward to today.xx
Well done , you're amazing to do it , I cancelled, feeling dreadful , Macmillan nurse just phoned me,she coming round tomorrow. I fought against the wheelchair but no regrets now .Hope you're able to make your appointment later ,and I hope it's positive . Nothing planned today but one of my daughters is coming tomorrow . Let me know how your appointment goes when you're up to it. Take care
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