hi im 36 mother of 3 n diagnosed dec 23. ive had 2 ops n 5 of 6 chemo n finding it very hard at mo. feel so peed off n cant get rid of that feeling. would love to chat. x
Glad to hear you are all doing good, well here we go today is steroid day tomorrow we start kicking butt, more focussed now and ready for y fight again. I will be looking for you non dba today so watch out for my request lol. I had a fab weekend with everyone so put me in a good frame of mind. I have now had my bone scan moved to the 11th as to soon after my chemo so will let you know the results as and when I get them.
Boatgirl we can do this together maybe we will be awake on the steroids so we can have lots of chats, what chemo are you having? Like you I would like to do race for life where are you doing it I will either do Hyde Park or Windsor, going to get my sister's and girlfriend's doing it to lol. Well good luck on Wednesday will be thinking of you
Linda - I'm on EC chemo. Its been marked up as a palliative course so I don't know whether this will hit the cancer for 6 or i'll have to have more later. Our nearest Race for Life will be in Bedford, and under ordinary circumstances I would be very happy to head down to London but this tricksy illness and the treatment might knacker me too much by then! Good luck yourself tomorrow. They wouldn't move my date for the MRI scan so I am stuck with Saturday for that. Happy to chat whenever I'm up, let's keep each other goin' strong.
Good to hear from you, have been awake most of the night managed to get about 3 hours or so on and of, these steroids do me in it doesn't seem to help even if you try and take them earlier. Are you taking them at all. I know what you mean about the traveling last time I had it the further I went through treatment the worse the tiredness got so like you I will play it by ear. My eldest son is doing a sponsored waxing on his chest and legs down his local for BC so hopefully he will raise some money there, can't wait to have a go lol.
Well hope all goes well for you today left me know how it goes
Linda - well, Day 1 went ok. This is very detailed but it might contain some things of use to someone else out there.
I realise this is very early days and my first time, so I daresay I will become a bit ground down by it if it starts going badly. I didn't have to start steroids the day before, but I did try to hydrate myself more yesterday and this morning, and was sipping various drinks through the whole business. I had also been asked to keep as warm as I could so I must have looked ridiculous in my skiing hat (one of the ones with 'ears' and 'plaits'!!) but I thought it would put a smile on the faces of those in the waiting room.
Nurse had trouble trying to insert a canula in my hand so she arranged for my hand to be in hot water then I had a hottie wheat bag on my arm. A different nurse then managed to locate it properly. Don't want such a palaver each time so I will get the implanted port done now.
My OH was with me and I did quite a bit of thinking about this beforehand and how to involve him. So while all the stuff was going on with the canula I set up the scrabble board and we started to play a game.
I said I would try the cold cap to see if it would enable me to keep my hair. The routine is that they do not wire me up to anything, they have pre-frozen caps that they change during the course of the time the drugs are administered. I've got a glamourous photo with me under the cold cap. After testing with a saline solution, next was a pre-med - the anti-sick steroid, before moving onto the E (red) drug - several phials of that delivered through the canula by hand.
I continued the scrabble and there was a lot of interest in the game (OH very competitive) so we were being asked for regular updates on the scores. It was clear that the encouragement was running in my favour and OH was a sweetie as he did big me up a bit and showed previous scores to one nurse which demonstrated I could hold my own.
I had packed my own food/snacks and a few non-sugary pleasant tasting still water drinks (the ones with a fruit taste added) because I am a diet-controlled diabetic and especially since the diagnosis I have created all my meals from scratch.
I had my main snack while there was the first lot of saline going through. After the E came the C, this one being introduced using an automatic drip alongside saline.
We took the scrabble quite slowly and we finished the game - OH assured everyone there was no fix and I was the winner. The atmosphere in the unit was good anyhow but it gave another talking point for people every now and again.
Then the nurse went through my medication which seems to be pretty comprehensive.
I have had one light meal this evening and haven't felt poorly. I will be taking an anti-sick drug just before bedtime. I am seriously not expecting tonight or tomorrow to be plain sailing but I am still keeping up fluid intake as advised.
Weather has been appalling so haven't been out for a walk but I have been doing my domestic bit, finding excuses to walk around the house every hour or so.
Its getting very late so time for the meds and hopefully some sleep.
Hope your day has been ok, and you are also not having too many issues yet.
Glad to hear your treatment went well for you and the way you have written it will help others on what to expect, how are you feeling now and are you on the steroids as well.
Sorry about not being in touch have had a couple of rough days up and down the hospital, the treatment is quite harsh so I am informed, on Wednesday they thought my platelets were low so redone blood test and came back fine so it all went ahead, well by Wednesday evening I couldn't swallow anything except fluids, this continued on so I had to contact my team, I returned to the hospital to be checked out they said all was ok but I had to start eating solid food but I couldn't, my oncologist contacted me to see me again and it turns out I have caught thrush in my mouth going towards my gullet hence the pain when I eat so now on antibiotics for it, I have to go and see him again on Monday if no improvement or Wednesday if I feel ok.I didn't have this side effect last time as I had different chemo and steroids so at least now I know if it happens again or maybe I will ask if I can have a different steroid or what can be done to prevent it happening again, other than that all is good, am going to try and eat something solid today as don't fancy time in hospital lol.
Take Care
Little Sis (Linda)
What is the Chemo you are having sorry brain all over the place already not sure if it's because of everything going on or the Chemo kicking in as have been in bed most of the time as had no energy due to not eating properly but going out for a walk today if the weather improves.
Well will check in later to see if you have seen this keep smiling and cyber hug sent your way.
That all sounds rough but your experience tells you that you have to try to break the vicious circle where, if you are not eating, your energy levels go even further down, and the effort to walk or exercise is even more immense. Everyone I know who has been through chemo has mentioned this could happen at some point to me.
Just to give you more information about the chemo I am on, and the drugs to manage the side effects. The two chemo drugs are epirubicin and cyclophoshamide. An initial dose of anti-sickness medication was given intravenously at the hospital then I was given a goody bag of various drugs to go home with. These are:
dexamethasone (steroid) first two days only, domperidone (anti-sickness) taken before each meal for first 5 days, cyclizine (anti-sickness) one at night for 5 days, ranitidine (anti-indigestion) one per day for first 5 days, ondansetron (anti-sickness) one per day taken mid morning for first 3 days, then from day 8 - ciprofloxacin (antibiotic) a one week course, and also fluconazole (anti-fungal) again for a week.
I do not easily succumb to be physically sick but I thought that I shouldn't play fast and loose with the anti-sickness drugs in this situation! I've been uncharacteristically well-behaved in fact, given that I hate taking pills. I also try to eat within an hour or so of taking the anti-sickness drugs out of some notion that they will be having maximum impact then, and I'm not in the habit of snacking between meals. I do swig drinking water and tea in between to ensure a good fluid intake.
My MRI on Sat went ok, and get the results this coming Wednesday.
I have had some friends drop in today and we have been planning a few treats round the chemo dates, so that will make up a bit for our cancelled holiday. I still feel somewhat anxious about planning anything!
Hope you have had a good day today, and got some fresh air,
