Fec x 6 cycle 2 day 4
wow Becky what a marathon post.
Went to see Onc he asked how I was coping so gave him a list of the SE's as you do, he then offered to reduce my cocktail intake, less of the red stuff in particular. However I decided that all though it has been very annoying and draining I didn't have to be hospitalised and now I know what to look out for and what to do about it that I would rather stick with the regimen cos they don't really know the effect of reducing the dose. It was agreed that I do seem to be unusually sensitive, hair loss etc earlier than most but since blood count is good, we will see how I go after next time. He advised being proactive and if I think something is going to be painful such as the reaction I had to bone marrow injections then go for the drugs before I need them or as early as pos rather than waiting for things to get worse. I can roll with that.
I have assessed for a PICC line and my bartender saw me there and said thank God for that! So I think that's a positive. I also asked about my Greek holiday in August and onc is very encouraging about me going, it's the nurses who all do a sharp intake of breath and tut about it. I think tho that onc is looking at the bigger picture.
While that was going on my twin autistic boys were trying out 6th form colleges which has thrown up new battle grounds to ensure they get the support they need. One of them is severely autistic, but is doing gcse higher maths in his own unique way, loves Shakespeare and doing French at entry level in a gcse class, however the college had him in a group where they were practising to write there their own names and the staff didnt seem to recognise that this would not be a good match for anyone. Also I have demanded a meet at 8.30 this morning with the current school head as one of the support assistants took the opportunity of everyone else who works with my boys being absent, cause trouble - not a team player and out of step with everyone else. So my side effects will just have to hang fire while I get angry.
So. Side effects
hair loss - hit me very early 10 days. Had already decided to go for the head shave event -see earlier posts. And th lady who did it said that she could see it was going and that it looked sensitive. the shaved hair look didn't last many days as the rest of the hair is almost all gone. My scalp is very sensitive and sore so the wig is very uncomfortable so have taken to soft caps and things mostly annabandanna. Lady jungle slashed and burned, armpit gone and arms, leg hair hanging on but eyebrows thinning. Skin is sensitive too. So have taken to soaking in oilatum or other ecszema type stuff in a warm bath and that helps. Also bucketloads of unperfumed moisturiser.
Nails - very brittle and bendy - constant filing with a soft block thing don't know what called has a different effect on search side to buff nails. More moisturiser.
eyss - sunglasses when out also helps with headache. Cooled cucumber slices and eyemasks kept in fridge use them when just chilling.
headache - have combination of naproxen which also helps with the bone ache, co codamol and paracetamol. Also the gelled headache strips. avoid coffee, tea and chocolate tho gone off milky drinks anyway.
Slight nose bleeds - can feel them building as cold lump behind nose so stop doing stuff lie down eye type masks on, careful not to blow too hard, if more than slight blood then lean forward pinch bridge of nose etc but never been much so far. When it is I will call for help.
sore gums - avoid boiled sweets, crisps etc, use aloe Vera toothpaste on soft brush and use cool mouthwash or salt water.
mouth ulcers - bongela until you can get some gelclair prescribed.
with the constipation, diaahorea and sickness, ensure that the bathroom is a pleasant place to be and you have cleaning products gloves, tissues, soft botty wet wipes, face wipes, something comfy to kneel on and entertainment. Think like a man and accept that you may need to sit there awhile until mission accomplished. Possible avoid taking phone in after the Chelle experience?
Look at all the anti sick things you have been give cos we are all getting a bit of a variation and ask for an explanation of them and the effects of changing or adding. I took all of my anti sick meds and macrogel (anti constipation) the day before in prep and I think it did have an effect. I was also then given Emend so although feeling sick and nauseous and retching, not actually sick and bowels although not right better than last time. Eat anything to produce soft stools - dried prunes etc unless of course yours is the other problem. Fresh fruit and veg a must also oily fish, tuna, salmon, sardines, mackerel - if dont like these change attitude and think of them as good medicine.
Bad taste, dry mouth - anything that works for you, Gin Gins, pineapple etc, I found Ginger ice pops, fruit frozen smoothies and Lemon Lime flavoured all good And also make my own. Citroen presse - Fresh lemon, or lime with small amount sugar and cold water. Drink loads have bottles everywhere to sip from. Fruit teas eg cranberry, raspberry etc also some are diuretics for the steroid bloating.
reaction to Bone marrow injections - pain around kidneys lower back, pelvis into thighs and spasms very bony ache. Take all painkillers and call helpline. I got diazepam urgently delivered and some liquid morphine then just floated away while it all passed.
vag discharge - pads ! gross!!
red itchy skin and spotty, - eczesma stuff and loads of fluids.
bloating water retention - keep drinking and try natural diuretics.
PLEASE REMEMBER. It is unusual to get all of these I am particularly sensitive to this stuff, it isnt necessarily going to happen to you.
mine have not been severe enough to be hospitalised but I have called the helpline and got help and then checked by a Gp. My temperature has remained steady. I have still managed to run the house, do a bit of veg gardening, walk dog and other bits and pieces but have also known when to stop and just chill. OH works away so also had to put contingencies in place and rely on friends, I have no family here, they are all 90 miles away and have other challenges - see earlier posts!
i am no different from anyone else I have major downtimes and have playlists to cry to and playlists to pick me up again, my relationship with OH is challenging and needs to be useful but not overwhelmed by all the more emotional stuff us girls have. Which can be very draining and disappointing.
it all sounds quite grim but no one said it was going to be a walk in the park. So head up shoulders back knickers up, hands washed and on we go.
I am not medically trained so talk to your own teams and lets keep this party going.
school awards ceremony tonight and one of my boys has 2. Bringing my mum up to see it for first time and then Indian takeaway - perfect.
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