At the clinic today, I have been put on a treatment holiday, then denosumab jab next week and a lower dose of palbociclib. Hopefully this will reduce the fatigue, and the better weather should help.
Thankyou for your comments, ladies. Yes, I do exercise every day, try to walk about 3 miles with the dog. The difficulty for me is that I'm used to 5-8 miles up the fells, and it's so frustrating..........and lack of walking is reducing strength of leg muscles.
I try to concentrate on what I can do, rather than what I can't do, and count my blessings that modern treatments are keeping me well in all other respects.
I'll try to get that book.
There is more recent research out there. A study finalised last year demonstrated the effectiveness of 30 mins per day exercise, both in fighting cancer and promoting energy levels. On the strength if this my hospital is looking at appointing a physical activity coordinator for the oncology department. There is also mileage in getting cancer patients fitter for their medical procedures. I’m sorry I can’t remember what it was called, just our chief Oncologist popped over to our SBC group last October to give us the findings. X
I have just finished reading Cancer Fitness, if your looking for something that is research related Anna Schwartz book is probably the place to start. Its fifteen years old but after a quick search on the internet the research is still proving true. There is no magic cure but research suggest exercise can help, its not expensive off amazon and i felt so positive after reading it.
It's been like living at the seaside here for a week, and more rain to come. Oh deary me.....
I am sleeping a bit better, so feel a bit more alert.
Joey is getting better walks which does good for both of us.
And he is now an Uncle - Stripe a **bleep** lab has just had puppies, one yellow and 4 black. We shall go to see them after next clinic appt. It's so exciting!!!!
If only someone could invent an energy pill.......
That's great news Grumpy. Whoohoo!!!
You keep mentioning some of my favourite places - Arneside and Silverdale. More beautiful views. Lovely little village. We caught the tidal bore on the Kent river once, purely on the off chance. Sat and watched it travelling up river. Also did the Morecombe bay walk, 2002, starting from Arneside, which if you've never done it, DO (something to tick off your bucket list. But minus Joey!) It's quite an experience. All under the instruction of the Queens Guide To the Sands (Cedric Robinson, has sadly died since), avoiding the famous treacherous quicksands. Has you wading thigh high through fast flowing water at one point. Then transported in an sand amphibian vehicle for another part of it, over to Kent bank. Excitin'. Still have the return Kent Bank to Arneside train tickets in my walking jacket pocket, as a reminder. It's often done on mass as a charity walk.
See what you've done, grumpy - "Mem o rieees, la la laaa la la la laaa", sniff sniff. Lovely-jubblee!!! Lotsa xxxx's for it girl
Scan results good, everything stable and no new nasties.
We ended up on Arnside prom, lovely day, and nipped into the tea shop that welcomes small dogs so Joey had treats....
Hi again Grumpy
Have you had your results from your CT scan yet?
Hope you and Joey enjoyed your seaside promenade walk. Nearest lovely coast to me is the West Wirral (or South, whichever way you look at it). Beautiful views over the Dee, to Wales, Snowdon in the distant background on clear fine days.
After my Dad died, my Mum and I took to spending Xmas's at the Keswick Hotel. Very reasonable, good value for money, great food and excellent staff, + lots of entertainment. Loved it. We were greeted like family, after a couple of stays. Had a very special break there with my 'X' for my 50th, 11 yrs ago. We used to go the Lakes often in our campervan, for some tough fell walking. But I haven't been to the Lakes since Mum died, 10 yrs ago. Really miss it.
Beautiful place to live. I'm envious.
Lots of love to you and everyone
Yes, I am one of those fortunate people who live in the Lakes...... I was born here and moved here permanently when I finished teaching. We are all asset rich and cash poor! It's a small price to pay to live here.
Seeing the oncologist tomorrow, hopefully scan results will be available.
Then a walk along Morecambe prom with Joey to get a good blow in the wind.
Will report on the fatigue when the night time pills are kicking in.
I jumped on your reference to Helvellyn. Is my most "favourite" fell to walk in the Lakes. Stunning views back over Ullswater and fells. Second favourite is a mere "pimple" in comparison - Catbells. No matter it's lower, again just such beautiful views over my beloved Keswick, and its backing fells, Skiddaw, Blencathra, et al.
Do you have the fortune to live up in the Lakes? Or, like me, just a Lakeland and Fell lover and dipper into?
Hope you're doing well, and are back to them there fells soon.
Lots of love xxxx
I am delighted for you and being mad on animals (have one cat who is spoilt rotten and also had the pleasure of growing up with a Border Collie) so pleased for your dog too
Cautiously optimistic about new regime......
Talked to GP about fatigue and poor sleep, 'rejected all notions of sleeping pills then went to chat to the pharmacist. Came away with Own Brand night pills which certainly help me sleep, so I feel better all round. Not nipping up Helvellyn yet but you never know........ small dog thrilled with the extra walks.
Yes, the physiology of cancer fatigue is still a complex mystery to the medics, so no 'magic bullet' yet.....
The aromatherapy regime was discussed at a Secondary BC support group, and it was made clear that it might not suit everyone.
I'm hoping things will improve as the weather cheers up.
Thanks for all your comments.
Hi Grumpy. I don't believe there is any magic solution. Each to their own, but honestly I think 'builders tea' is just as much good as something exotic. Everything has the power to help, but bottom line is we are at mercy of the experts. Way I see it is, if they knew the 'secret ingredient' they would be advocating it themselves.
No cure for cancer yet, but soon I truly hope, because it is truly awful to experience. Someone wafting aromas in my face, just make matters worse. Apologies for brutally frank opinion and rest assured not personal; I'm just sick of the constant physical pain and fed up with how cancer seemingly refuses to leave me alone to get on with my life. X
Grumpy, I’m now on Chaka tea which is described as a silver bullet for the immune system. Feeling much better all round drinking it twice a day. Might be worth a try? Got it from the big A web site, and bought the Siberian one which dissolves nicely in tea. Tastes nasty so use loads milk/ milk alternative as I do. X
You gave the aromatherapy a try. I have really sensitive eyes so would probably have the same issue.
Sincerely hoping you will get good scan results.
Update on aromatherapy oils......
Pepper oil had no impact on energy levels.
Lavender oil did seem to help with sleep a bit.
PROBLEM - oils in the atmosphere make my eyes run like taps, so I've had to stop.
Now trying to concentrate on what I can do, rather what I can't do.
Just had a CT scan, results soon, so hoping for further shrinking of the lesions
Had a session with an aromatherapy lady, now using lavender oil to aid sleep and black pepper oil to combat fatigue. Too early to say if they are working so I'll let you know......
I'll find the coffee lounge and tell you about Joey!!!
Hi Grumpy! Please tell us more about the Asbo -Boy ( aka Joey) in "Pets and Other Animals" via the Coffee Lounge section. Bet he is a total 4 cornered angel in reality ;). X
Thanks for the tips - I'm doing most of this already.... as you do.
The comments I get are from medics, not friends. They don't know and I shall not tell people until absolutely necessary. This is (hopefully!) a long term disease and I can't put up with all the clucking for the 10 years.
When the time comes I know who to ask for help......
In the meantime I'm trying to come to terms with not being able to walk the fells with my dog Joey - also known as the ASBO Boy.
I have 20 years of experience of fatigue due to ME/CFS and I understand how frustrating it is not being able to perform at your 'norm'. There is lots of good advice on ME websites (such as Action for ME) on how to pace yourself and how to come to terms with a reduction in ability, which might be temporary in your case. I too am single, and know what it's like trying to cope with everything without help (which I can't afford to buy in).
My tips would include
1) avoid 'boom and bust' whereby you go for it one day and pay for it for the next few days; try instead to find a level of activity which doesn't drain you so that you always have a little bit in reserve
2) drop your standards and expectations
3) prioritise carefully so that you reserve some energy for fun things....see point 2...
4) don't fight the fatigue, but listen to your body and drop activities/plans if you need to rest
5) bounce boundaries, don't push....find a level of activity which you can sustain (your baseline) and build up very gradually from there by doing a wee bit more one day then resting the next, back to your baseline.
Congrats on the shrinking lesions and good luck x x
Well, it’s a bit of a catch 22 isn’t it? You value your privacy , so people are unaware of the magnitude of the health issue. That’s why the unhelpful comments are made. Why not turn it on it’s head and look at it as an educational issue? People DO not understand chemo fatigue, so educate them. You might be surprised at the offers of help you get, rather than people telling you to ‘pull it together’. To those who still don’t get it, and you, perhaps the proverbial p** off might do the trick! After all , how are they good friends if they aren’t loving and helping to you? X
Yes, onwards and upwards!!
PS Let me know if you need to scream at anyone (“psychological”) and I’ll scream too. Heehee xxxxx
Thanks for that - never really thought it through before.
I do employ the decorator for big jobs but want to do the little jobs myself....
Gardening - yes I'll look into that. At least I don't have a lawn to cut!
And if anyone else tells me it's 'psychological' I'll scream......
Onwards and upwards!
I can fully relate to your wish to keep your diagnosis private, I have only told people on a need to know basis so far about my Secondary diagnosis and with my ongoing fatigue since my Primary, I used to just say I’d had a serious illness and hadn’t had the same energy levels since.
On the outside looking in, I just wanted to suggest re you being on your own, could you perhaps ‘outsource’ tasks/jobs like gardening and decorating so it’s a payment and the person is there to do a job not question why you’ve asked them. I appreciate funds may not allow for this but just a thought. About a year after my Primary, I paid for a gardener to visit every 3 weeks as (at the time) I was on my own and the large garden became a burden.
Fatigue doesn’t seem to be taken seriously does it - I’ve had someone say to me ‘push your way through it’, if that really was the solution, I wouldn’t have felt so drained and for so long!
Thanks for your tips - yes, I'm doing all this. The problem for me is I'm used to walking 3-10 miles every day (I live in the lake district) and now it's a struggle to walk to the shops! And I find it difficult to keep up with ordinary activities - housework, gardening, decorating etc - and it's so frustrating. I live on my own so all this is down to me. The medics suggest getting friends to help, but that means going public about the cancer and I don't want to do that until it's absolutely necessary.
I keep looking for any research and all I can see is that the physiological pathways of fatigue are not identified so treatment is not yet devised.
I just wanted to say ‘hi’ and empathise with you on fatigue. However, I do need to acknowledge your good news of the lesions shrinking/disappearing - that’s fantastic. I am also on the same treatment as you and just nearing the end of my first cycle. I am no stranger to fatigue, have battled with it and against it for years and for too many years I relied on sugar and caffeine to keep me going when my body was really telling me to rest. If possible, REST when you do feel fatigued - if you feel guilty or worried you’ll oversleep, just set an alarm. Try and get a bit of fresh air when you can, just a short stroll is fine, doesn’t have to be a long walk. Avoid sugary drinks and caffeine if you know you are relying on them to keep going. I avoid sugary drinks but I do love coffee and will treat myself to a Nespresso most days however I try and drink decaf if I know I am reaching for a drink due to tiredness. I wish I could give the secret to no longer feeling fatigued but you do have to be kind to yourself as it’s not visible to others - in my experience anyway - and I’ve had people over the years tell me how well I look when inside I have felt horrendous.
I sincerely wish you well and it’s just occurred to me that also up until the 21st December, daylight hours were shorter - hopefully with each day and those extra minutes of light, some energy may return.
Best wishes xxxxxxxxx
i had secondary diagnosis of bone mets in upper spine in April 2019, taking letrozole, palbociclib and denosumab. Good news is that all lesions are shrinking/disappearing, bad news is the allconsuming fatigue. Life is very constricted now, and I'm finding it very difficult to handle.
Anyone got any tips?
Any advice will be gratefully received.