Hi,
Thanks for all the responses- it is very interesting to read.
My partner was diagnosed in November after a long period of suspected ‘sciatica’ and immediately admitted to hospital for radiation and chemo. He’s just finished with the four months chemo and is now preparing for SCT in June.
We told our children straight away as, for us, and this will be so different for everyone, it seemed the only right thing to do. The youngest, who made the decision to only tell their best friends, is also doing exams at the moment. The decision not to share it widely worked well as school and social clubs remain ‘safe places’ where life continues as normal. I did the opposite and told everyone as I knew I would really benefit from the support. The two other children live away and although we keep them in the loop, we try and let them continue their lives as normal.
Regarding travel etc. This was, and is, not an option for us due to mobility issues but we have accepted that this is how it is at the moment. Physio is confident that walking will become easier and maybe even normal again, so we just adapted our lives around this. My partner’s blood values remained in the ‘normal range’ but we do our normal things. With the SCT coming nearer, we started taking more care in terms of washing hands, preparing food etc and so far, all good!! I am very concerned about the period after the SCT but our health team referred us to the eating guidelines from blood cancer UK which indicate that a ‘clean diet’ is no longer recommended. This reassured me and the tips on their site are useful. You can ask your team what they abide by and this should be helpful. I reckon we will go in a mild ‘lock down’ after the SCT: get food delivered, avoiding crowded places if not necessary (but we will keep going to school and work), extra care with washing hands, avoiding people if unwell, visitors outside etc. I also plan emailing school and ask them to inform us if there are any contagious illnesses are going around. It would be really useful to read what people dud during the ‘first 100 days’ to remain healthy!
Good luck… it’s a rubbish diagnosis and, despite being an optimist and usually very resilient, last week was the first week where I felt ‘sort of’ okay again!
