I thought I would post a bit of an update on my daughters journey and hope it helps others understand that although a stage 4 diagnosus is scary you can still get some positives.
She completed her 5th round of FOLFOXIRI + Avastin (100% dosage) on 4th September. Her 6th cycle is on 23rd September. She asked for it to be moved on a week as it is her daughters birthday on 16th September and so far so good with little side effects.
Prior to starting chemo on 1st July she was unable to wslalk far and when she did walnkshe was hunched over in extreme pain. We ended up in hospital on 28th zJune were she was treated for acute gallbladder infection and mild sepsis. On admission her CPR was 155, after 3 days of IV antibiotics and fluids it went down to 77 so was able to start the chemo.
She was still not well when she started chemo but within two weeks all the abdominal and back pain she had been suffering with complefly went and she was able to walk upright again. Her bloods before her second round of chemo showed ALP 1002, ALT 106 and Bilirubin 8. She had also lost 10lbs due to not eating when she had the gall bladder infection that had been brewing for weeks.
Now that she was feeling better she was determined to put the weight back on and started on a really healthy diet which included more fruit, berries, nuts, chicken and full fat dairy. She cut out all red meat and no alcohol but drank lots of water some with lemon and ginger in. She also made smoothies. She goes out walking 45mins a day and try's to do pilates for 15mins at home 3x week ( excrpt for infusion days) By the 18th August she had put a stone on and her bloods were ALP190, ALT106 abd Bilirubin 5 (all other bloods ok) Before round 5 on 2nd Sept her ALT and ALP had increased slightly but they said it was expected and due to the chemo.
I was expecting someone who had been so poorly and is fighting stage 4 cancer to look unwell but to look at her she looks her normal fit healthy self and is living life as normal, meeting friends, going to the cinema and out with her children ect.... and I hope this continues for a long time.
She moved back home with her two children on the 6th September and we go help out at teatime /bedtime as it can be full on lol. She had her follow up CT scan on 31st of August and next oncology appointment on 16th September to discuss the results. I am keeping everything crossed for a bit of positive news and that the tumors have shrunk in liver and lymph nodes.
Since her diagnosis I have learnt so much and to help me cope I am looking at it as a chronic disease for which she needs lifelong medication and the hope that as time goes on a cure will be found. Wishful, but the alternative thought is not nice
To all of you fighting this awful disease try and stay positive but also allow yourself to feel, sad, angry, scared and worried. But most of all if you can get out and live your life. It is a cliche but we really do have to take each day as it comes and enjoy.
