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

Hi Ed.  I am sorry to hear about your migraines.  I hope it has not spread too, when are you having the scan?  Hopefully it is from the treatment and will disappear soon.  Glad that you have found cherry juice helpful as well.  I think if we can find natural things that help, all the better.  I am glad that you find meditation helpful, I used to do it but haven't now for a long time.  I have seen a saying or a thought it is about living in the moment and not to worry about the past which can't be changed and not to worry about the future as it hasn't happened.  Last night I woke up and tried to just think about the moment.  The pillow, my dogs and husband snoring (ha ha)I.  It worked I went back to sleep.   Have you tried silk pillowcases, they are brilliant, so cool and smooth I use them all the time now.  Blissy are the best but quite expensive.  I am glad you have put up tree and decorations.  First time we have done it in ages (had to have a glass of Prosecco to get through It).  It will be a good Christmas for us all.  Please let me know about the migraines and scan when you can.  Big hugs.

Lee x

Thanks Lee

Needs little excuse for a glass of Prosecco and the effort of putting up a Christmas deserves one. Will investigate the cool pillow cases, anything that improves sleep quality is worth it. Hope you can get out early with your dogs before the rain sweeps in. Scan is not scheduled yet due to Christmas and the Doctors strike so something to look forward to in the New Year. HaHa. I'm pretty sure the silent migraines are stress related. Ive had a lot stress recently with family matters and finances. Cancer unbelieivably is the least of my problems. Always good to hear from you.

Ed

Hi Ed.  I hope that you and your family had a great Christmas.  We did other than the oven breaking down on Christmas morning ha ha.  I was thinking of you and wondering how the migraines were and have you had your scan yet?  I am doing okay just more back pain so waiting for another spine MRI and nuclear bone scan.  Hope your stress has eased now.  We are going to Iceland in 3 weeks so looking forward to floating in the Blue Lagoon.  Hoping it will help my back.  Big hugs.

Lee x

Hello Lee

Lovely to hear from you, so pleased that you had a great Christmas, we did too, to be honest 15 months ago I did not think I would be celebrating this one, But thanks to all the wondereful staff at our hospital and immunotherapy treatment, here I am still alive and kicking and annoying the tish out of everyone. The back pain really is a thing with cancer in the spine, you are a bit ahead of me in progression of the disease, with a back brace and radiotherapy to the spine. You have given me a lot of valuable tips and insights on how to deal with it, for which I'm really appreciative. I find keeping active and stretching my back beneficial and Im still managing on mild painkillers but generalised backache is becoming more intemse with pins needles and numb fingers, arm and hand. Have not had the retinal migraines for a while and think they may have been stress related, however ive been referred to Neurology to rule out it is not immunotherapy or cancer related and have MRI head scan and CT body scan at end Jan. You upcoming trip to Iceland should be a great tonic, the thermal blue lagoon sounds fantastic Hopefully you can get up for a walk about during the flight. For us also a trip to a cold country Switzerlandand. In the planning stage somewhere warmer in Spring plus a few short city breaks in UK. Got to get these trips in while health still allows it. Good wishes for your scan results and a Big virtual hug to you too.

Ed 

Hi Ed so glad to see you are still planning holidays, it is nice to have something to look forward to.  Haven't been to Switzerland for about 35 years.  I just wanted to tell you about a cancer charity called Penny Brohn.  They do online zoom courses for stress, breathing, nutrition, gentle movement.  It is all free as is a charity, you can make donation if you wish.  I did a four week course, one day a week.  Going through cancer treatment.  It was really good and I got something out of each session.  I am now doing clinical hypnotherapy once a week with them on a Thursday.  It is so relaxing and eases my stress.  I just wanted to tell you about it incase you wanted to give it a go for your stress.  Big hugs.

Lee x

Hi Lee

Your proactive stance to living with cancer gives you the best life possible. Thanks for the info on the Penny Brohn charity.they seem to offer a lot of support in various ways and I may give a try.. Ive never suffered with stress before. Im not sure if it is the treatments affecting my endocrine system or just not having enough energy to deal with the normal setbacks that life brings. Family squabbles, money, plus friends keeping their distance because they are uncomfortable being around someone with cancer. Whereas living with cancer is the least of my worries. Going for a walk today then Sunday lunch at the pub. Hope you are keeping well.

Ed

Hi Lee and Ed glad to hear you are both pretty active and trying to enjoy life. I also try and keep busy and working part time at the minute as need some normality albeit sometimes very difficult.  It is interesting as I find the same that some friends find it difficult, probably more than I do!   This I found quite upsetting at first but then realised who really cares about our friendships…….  Plenty of friends who do not have to tip toe around me.  

Enjoy weekend and live life to full.

Hi Ed and Cosmopolitan.  I do admire you both for carrying on working.  I miss my job but know I couldn't do it now.  Funny I have not found any friends that keep their distance.  I have told them all I just want to be treated the same and carry on as normal.  I have just read an article on the Macmillan website about toxic positivity.  Really interesting and yes I do agree I hate it when people say 'You got this or stay positive'.  Now just realise they don't really know what to say and maybe say it to make themselves feel better.  I am finding the clinical hypnotherapy once a week with penny brohn is really helping me with stress. I grind my teeth at night and get worked up and am so much better since doing this.  Going to live my life to the full once I get out of bed :) .

Lee x

Hi Cosmopolitan

Good to hear from you. The work thing is important to me too albeit part time now. The physical exercise in my job is beneficial, the dreaded paperwork keeps my grey matter engaged and contact with people is essential for wellbeing. The stay away friends aspect is intriguing, is it a belief that cancer is contagious, or that you can't be fun and a laugh anymore because cancer is so serious and miserable. Or is it just because cancer makes for difficult conversation. I tell people to treat it as if I had broken my leg.. (ask how's your leg mending) then get on with normal interaction. I usually have very dark humour around the subject which my closer friends can appreciate but others recoil from. Enjoy every day even the ones that don't always go well.

Ed

Hi Lee

Had to smile at the "going to live my life to the full once I get out of bed" I too occasionally get up at the crack of half past eleven, usually having found a pain free, comfortable position which I don't want to leave. Yes it irks me too when I get the "you've got to stay positive" comments as if were not really trying hard enough to stay positive in the direst of times. Still you should be off on holiday soon, the most effective treatment known. Look forward to hearing from you on your return.

Ed

Hi Lee

Had to smile at the "going to live my life to the full once I get out of bed" I too occasionally get up at the crack of half past eleven, usually having found a pain free, comfortable position which I don't want to leave. Yes it irks me too when I get the "you've got to stay positive" comments as if were not really trying hard enough to stay positive in the direst of times. Still you should be off on holiday soon, the most effective treatment known. Look forward to hearing from you on your return.

Ed