Hi Ed and Lee.  Hope all is well and wondered how you are getting on this week.  I feel extremely tired and not sure if it’s the disease or the Denosamub plus also started on Letrozole this week.  I am still waiting for full results of bone biopsy and am emotionally exhausted.  Trying to go out as much as possible to forget about it but once home I struggle with what is ahead.  Hope you enjoy your weekend 

HI Cosmopolitan and lee.

This week has been ok other than backache a flare up of the rash and the usual fatigue. Just one dark day when I could not lift my spirits and the world weighed heavy. Had blood test at the clinic today as no appointments at phlebotomy over the bank holiday. Get first injection of denosumab next week at same time as cemipulab. I hope there are minimal side effects as I plan to drive 4 hours ( with lots of breaks) to visit family. 3 days after the jab. Been on light duties in the geenhouse pricking out vegetable plants. I find it hard to stand still for a long time, it kills my back, so take regular breaks to either sit down or go for a walk.

I hope your week has gone well and that the Letrozole has been ok. Keeping active as much as you can seems to be good for mental and emotional health and a slightly better nights sleep. Take good care of yourselves.

Ed

Thanks Ed.   I have to say my Oncologist is superb and actually treated me for my original cancer 14 years ago.   Hopefully everything will settle down soon as certainly coping with the medication so much better than a few months ago when I started.   as you say good days and bad ones but certainly making the most of each day.  

hope your cancer is kept under control for years to come.   

Hi Ed and Cosmopolitan,  good luck with treatment next week Ed and enjoy your holiday.  Cosmopolitan I had to have my Ribociclib reduced to 400mg a day as well so hopefully we will both benefit from this.  My neutrophils are very low as well but oncologist said I could go on holiday which was great.  Hopefully if yours pick up Cosmopolitan you will be off abroad on your hols as well.  Ed did you get a quote from Insurancewith because I found them very reasonable.  Lets hope we all have stable mables for many more years to come.  Big hugs.

Lee x

HI Lee

Can I ask you if you get pain in other areas from the cancer in your spine and not just in the spine area. Ive got pain on the lower edge of my rib cage the scan shows no cancer there and no broken ribs. The doctor suggests it is referred pain from the affected vertebra. I am also getting tingling in my shoulder blade and numb fingers from time to time. Had a lovely week away to Portugal temperature mid 20s perfect. Feel so much better for a break away. Hope all is well with you.

Ed

Hi Ed,  so glad you enjoyed Portugal.  I loved it and will definitely go back.  Did you manage to get insurance?  I get pains in my collar bones and upper arms  (I have a feeling that it might be the way I sleep)  and recently having been having really bad pins and needles down my left arm into my fingers.  I haven't got rib pain although I do have mets in my ribs as well.  Before I had the radiotherapy I got pains in my shoulder blades terribly if I lifted my right arm but onc says it was from the tumor on spine.  The spine controls so many nerves in our body.  Hope you feel better , have you still managed to steer clear of the opioids?  Big hugs.

Lee x

Hi Lee

Thanks for replying it would seem that you also get pain in other areas but it originates from your spine. So what my doctor says fits in.  I got a quote on the telephone from Insurancewith whereas online they declined to quote. I didnt bother having insurance in the end and took the risk myself. I cannot get comfortable in bed which leads to aches and pains the following day. Cannot find the correct pillow too high too flat too hard too soft for my neck and head. Still on paracetamol and Naproxen but have been offered strong painkillers if needed. Tramadol or oramorph but holding off as opiod painkillers give me constipation itchy skin and nausea plus make my thinking dull. Take good care and hope you are still able to get out with your dogs to enjoy the early Autumn sunshine. 

Ed

Hi Ed,  I had my three months CT scan yesterday and I couldn't lift my arms and hold them straight up over my head.  That is something new.  The onc drew a map of spine and showed me what vertebrae's controlled what nerves and I think one of the tumors is pushing on the nerves for my arms.  Anyway that is my guess. I have just bought a new orthopedic mattress to see if it helps.  Just a question have you tried the udderley smooth cream, I found it is good for the rash.  I am still walking my dogs every day and I enjoy the woods when all the leaves are turning colors, it is so pretty.  Take care and big hugs.

Lee x

Hello lee

I also find it difficult to put arms up in the CT scanner but can manage it. I always worry about the canula and tube for the contrast being ripped out. Im sorry that you had to find out about your reduced mobility during a CT scan. After reading your post confirming that referred pain is a regular occurence and that you were shown what nerves are controlled out of each vertabrae. I had a look online and found that one of of my affected vertabrae T7 does indeed affect area of lower rib cage. Whilst the T3 vertabra would be causing the numb arms fingers etc and the pins needles tingling sensations. So a quick lesson in anatomy thank you for promptng it. I have not tried the udderly smooth cream which was developed from a cream for cows udders. I used to use a cream called Cai-pan mint cream which contained Japanese peppermint oil for cracked teats when milking the cows. I noticed that it was very good for my own dry chapped hands. At the agricultural supplies store its around £ 27 a litre I may buy some plus Ill try the human version. Hope your new mattress gives you a better nights sleep. Sending you all my best.

Ed

Hi Ed and Cosmopolitan,  I though I would reply on here Ed as didn't want H Tam to think we had hijacked her thread.  I bought my pillow from Ikea.  You can also get them on Amazon or Ebay.  It is memory foam and has a raised edge on both sides, one being higher than the other.  The higher one is for side sleeping and the lower one is for if you sleep on your back,  It has helped me as before I tried two pillows then three.  This I use on top of one pillow and seems to work.  I am glad you enjoyed Somerset, I have never been.  It is hard going away when you have four dogs.  You have to book a dog/housesitter like a year in advance. I hope you are doing well Cosmopolitan.  We are hoping to go to Iceland in Jan/Feb again depends if we can get dog sitter and of course health and treatment.  I have want to lie in the hot thermal waters of the Blue Lagoon.  We have been twice and really love it.  Sending you both hugs.

Lee x 

Morning Lee and Ed sorry not been online much lately.  Sometimes need to get away from the C and try and hide but I am back at work on a phased return as being at home too much is not for me   

Glad you are both having holidays.    My oncologist is worried about DVT if flying so am not going very far these days.   Using trains and ferries but these can be just as bad with all the germs going around

information from you both is great and I also use the MOO creams.   Having sane symptoms as yourselves with tingling and numbness but we carry on.   

Take care and enjoy life! 

Hi Lee

Thank you for the info on the pillow Ill get one to try out and let you know how I get on with it. Did too much physical stuff yesterday and paying for it today with painful back and ribs Four dogs is quite a handful to look after and arranging a holiday must take a bit of planning. Iceland sounds a fantastic place hope you can get there in Spring. The thermal waters will ease your back. Roasted a butternut squash today will scoop out the flesh and make a soup later to go with homemade bread. It getting to that time of year for hearty meals to keep the cold at bay. Sending a big virtual hug 

Ed

Hi Lee

Thank you for the info on the pillow Ill get one to try out and let you know how I get on with it. Did too much physical stuff yesterday and paying for it today with painful back and ribs Four dogs is quite a handful to look after and arranging a holiday must take a bit of planning. Iceland sounds a fantastic place hope you can get there in Spring. The thermal waters will ease your back. Roasted a butternut squash today will scoop out the flesh and make a soup later to go with homemade bread. It getting to that time of year for hearty meals to keep the cold at bay. Sending a big virtual hug 

Ed