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 Ed I am not sure if they are trying to avoid the situation or just in their own little world.  Really get frustrated when they moan about a minor ache!!!   Or they are not happy at work.  And as you say they always tell us that we are  so positive.   My answer to that is I am not going to curl up and die!!!   Keep smiling 

Hi Ed and Cosmopolitan,  hope you are both well.  I am okay and cancer is stable.   Went in on Monday to fetch my medication and have the denosumab injection.  When I got home I found a leaflet in my medication to say they had switched me from Denosumab Xgeva to Denosumab Jubereq.  This new one is a synthetic version of the original which is made from living cells.  This new synthetic one gave me a bad headache and stomach pains.  I just wondered if you both had been swapped to this.  Apparently it is cheaper.  (surprise surprise).  I also learned something else.  I had a visit from the local hospice, a specialist nurse.  She told me that if you are working and take sick leave this should not be counted on your record because it is cancer related.  It is not relevant to me but it might be for you both.  Big hugs to you both.

Lee x

Hello Lee and Cosmopolitan

Hope you are both getting on ok and enjoying life.

Scans on me show stable cancer and some healing of the bone fractures in my shoulder and spine. No spread to brain.  Good result or what.

I knew that that there were different versions of Denosumab but had not heard of Jubereq until now, sorry that it has given you adverse side effects. I've been taken off Denosumab XGEVA for a few months to minimise chances of getting necrosis of the jaw while I had a wisdom tooth extracted. Will resume in a few weeks time on a 6 weekly cycle, I'll let you know if they switch the version they give me. I tolerate XGEVA very well and would not like to change to a version that is not so well tolerated. Might be worth asking the clinic the reason for switching you to Jubereq, I know that the NHS is having problems sourcing many medicines so it could be a supply problem and Jubereq is the nearest equivalent.

The specialist nurses have a huge amount of cancer related knowledge outside of clinical expertise. I did not know that cancer related sick leave days should not be counted. This should be very useful to people reading your post. I'm still working (part time) but am self employed so it doesn't apply to me either. The hospices provide really valuable services outside of palliative and end of life care, the nurses who are out and about in the community really make a difference to peoples' wellbeing. They have helped me with odema and pain management using minimal drugs. They also attended my father keeping him comfortable in his last week of life in his own home. 

I hope you are still out walking your dogs daily Spring has sprung.

Ed