So a very nice Doctor came to see us from the Hospice* with our Macmillan nurse and we agreed that:
1. No more radiotherapy for now
2. Steroids to be used from tomorrow
3. Amendments to other aspects of Ella's daily medicine routine.
Hopefully these changes will get her back to how she was just over a week ago and feeling able to join in again and back to Carpe Diem moments.
In answer to the question "why is she so ill"?, of of course there is not a conclusive answer, but likely to be two reasons:
1. The onset of the disease (for some reason they never say the C word!)
2. The effect of radiotherapy
*St Peter's Hospice - Ella is now "managed" by the palliative care team - who consist of Doctors at the Oncology hospital and at the Hospice - along with our Macmillan nurse and local GP team.
Lots of info on their website including this - Ella currently has all the common features, except (bless her) she does not get irritable with me! (I just get irritable with myself)
What is fatigue?
Fatigue is the feeling of extreme tiredness or exhaustion all or most of the time. It can feel overwhelming and unrelenting and it is often not improved by rest.
Fatigue can affect anybody at any time irrespective of their age or illness
Common Features
For some people, fatigue is very mild and does not interfere much with daily life. For others it can be very disruptive.
- General tiredness and a feeling of having no energy
- Breathlessness after only minimal exertion
- Even the smallest chore feels like an enormous challenge
- Difficulty remembering or making decisions
- Irritability with family and friends
- Feelings of panic with shortness of breath
- Problems with sleep
Glad that you've worked out a better way forward, it seemed like anything would be better than the radiotherapy at the moment! See you soon xxx
ReplyDeleteHi Ella and Jo, let's hope you can work out with the palliative team what is, and what is not, worth doing in Ella's best interests. If the radiotherapy has caused so much pain rather than relieved things, then a break seems like a good decision, love U Bob xxx
ReplyDeletehi jo & ella, hoping and praying that this revised plan gives ella a revised and improved set of symptoms. carpe diem moments have never been more deserved or needed and we hope ella gets to enjoy many many of these so very soon as part of her revised plan! all our love always. tina, andy, tommy & kezia xxxxxxx
ReplyDeleteAs you no doubt already know, the St. Peter's team and MacMillan staff are fabulous! Here's hoping Ella gets a little relief very soon and can update us on her wonderful insightful blog xxx
ReplyDeleteHi my lovely girls (and Brian)- glad to hear that you are finding a better way forward - you have had such a horrid week just gone. Hospice teams are just brilliant at getting symptoms under control, looking after the whole person and really supporting people to feel better and more able to have some quslity of life so I am sure some of those Carpe Diem moments are just around the corner for you all :-) hopefully they will also be a huge support to you Jo and Soph lets not forget how much you need it too having been so amazing since all this started (and since I first met you may I say:-)) Ever proud to be associated with Team Redman keep on keeping on gorgeous girls you are all spectacular all my love Suzy xxxxxxxxxxxxxxxxxxxxxxxx
ReplyDeleteAs Ella was clearly having such an adverse reaction to the previous plan, its good to hear that a change in approach has been taken - we hope that thia bring relief to Ella's discomfort and you all to continue to 'Carpe Diem'! There is a quote by someone - sorry but do not know who - that reads 'Life is not measured by the number of breaths we take, but by the moments that take our breath away' - here's to many breathless moments Team Redman - lots of love xxxxx
ReplyDeleteSo glad to hear that everyone is pulling together to ensure that the way forward is aiming for the very best for Ella - love to you all. Bill xx
ReplyDelete