Well today is another day and thank you to this group for helping me get back on the straight and narrow! @donna_51 you always make me laugh … agreed a load of blx … if only I could think like that last night! I will not be buying from them and after reading all your comments it’s a defo no!
@alig1961 how are you going? Have they got you sorted out yet - I hope you are able to snuggle in your own bed tonight? If you do mean the injections after chemo then my symptoms similar to @wjs - the aches seem to get stronger after each new cycle - I took paracetamol this time at night for a couple of nights.
@donna_51 hope you had a fab day out - I’m with Pat holding your bags and taking photos and watching for the screams and laughter! Good luck for bloods tomorrow - fingers crossed. I do feel like we are all on roller coasters everyday - we just cant get off…… yet!
@bettyb24@wjs thanks for recommendations - good to hear. I’m talking to my oncologist tomorrow so will ask for their advice too but as recommended will book the LGFB hair course if I can.
A bit of an update from me.
I’ve now been told that all tests are coming back clear, however intermittently I keep spiking a temperature and so they e increased the IV antibiotics to 4 times a day and said I have to complete a 7 day course, this means I’m in hospital until Sunday.
I’m feeling a bit better but think this is due to the fact that I’m on day 8 of this cycle rather than the antibiotics helping in anyway.
I think it’s the injections that are causing me issues and so I’m hoping that they’re gathering the evidence to reduce them next cycle.
I feel that my main issue now is the awful taste and feeling in my mouth and I’ve noticed that my nail bed is tender on my right index finger. I can cope with the sharp stabbing pains and dull aches.
Have a great Wednesday everyone and thank you for the messages.
Xx
@alig1961 Thanks for the update. Sorry to hear that you are incarcerated until Sunday. Its very frustrating that no cause for your intermittent temperature has shown itself At least you are starting to feel a bit better for whatever reason. My mouth was also horrible with funny cardboardy tastes, but this suddenly resolved on day 10 or 11 and everything went back to normal so that rhis will happen for you too.
@alig1961 how frustrating to find nothing yet still be in hospital!!! Hang on in there… you’ll be home soon to a spotless house and a lovely Sunday dinner waiting for you !!!
My treatment is going ahead this afternoon (6/8 yay!) … they mixed my bloods up with another Donna with exactly the same birth year as me (scary thought) so they had to re-do the bloods and I’ve been waiting at the hospital forever but I don’t care as it’s going ahead !!! On top of my fantastic day yesterday screaming on massive rollercoasters and generally feeling totally alive, it’s a good day. I am going with that today…
I generally have a horrible feeling in my mouth for about 5/6 days. Crisps (my favourite food ever) tastes of actual potato with mud on it … my tongue feels swollen and generally no matter what I think of to eat, I don’t fancy it, a v v strange feeling for me. I live on smoothies and fruit as I can swallow these and then more than make up for it on the rest of the days.
I have polybalm for nails… expensive and I’ve only dabbed it on a bit for my first pax session but no issues so far so will continue with it after second pax.
Hi everyone … I’m back sorry MIA again but I have been reading all your fabulous updates and appreciate the kind words from when I last wrote!!
@alig1961 thank you for your kind words in particular… I honestly can’t believe how much it floored me!! but fast forward to last Saturday and I was back to my usual self thank god… I think I just really overdid it straight after treatment and I need to remember to rest and ask for help sorry to hear your in hospital… your marigold story absolutely made me chuckle though!! you sound like you have very similar side effects as me … I know a few have mentioned their mouths/ tongues … it’s blooming awful!! I have been prescribed Nytasin but don’t feel ike it’s made much difference … still feels coated all the time!
@donna_51 … you have been through the ringer, sorry to hear but so glad you’ve finally got some positive news!!
@pat hope you enjoy your LGFG course … you inspired me to book mine finally … so going on it in October
@wjs was this your first EC as well? God it’s tough isn’t it?? I’d rather have the reactions I had on Paclitaxel than how I felt last week sending you positive thoughts and love for the next one!!
I’ve been back to work this week … how long for I don’t know, but for now trying to carry on as normally as I can! However one of my schools rang me today, just to see how I was which was so thoughtful and raised the point of going in as the autumn/ winter germs start going round!! Something I always knew I’d have to be careful about but how I’m actually going to manage case work made me think maybe I’m being too optimistic but work is being great so we will continue for now
I’m trying to make the most of this week before next treatment next Wednesday… hope everyone else is finding positives as well as weeks are going on!!
@charlie22 good to hear from you. I think I’m finally accepting that rest is vital and, I think, is more necessary as each cycle passes. My impression is that each time I don’t get back to quite as ‘normal’ as the time before. When I’m lounging on the sofa and express guilt that my husband is doing everything he has now taken to saying - that’s what your job is, resting, recovering and doing what you’re told, not that you ever do (cheeky)
@alig1961 hope you’ve had a good day, or at least a not to boring day, and that you’ve found something you can taste.
@donna_51 I hope all has gone ok today and that you feel OK so far. I finished Bridgerton this afternoon and love, love, loved it! I can’t believe we now have to wait 2 years for the next one! We’re now watching Jack Draper in the US Open quarter finals
Hope everyone else is OK and plodding on without too many problems.
@wjs it certainly is … that’s why I suppose I’ve tried not to take too much influence on how people have been … but it’s so hard when your hearing how easy some find it compared to others hope your hubby has a lovely birthday and you enjoy those rusty plane
@pat … yep I’ve definitely (and finally) realised the same now … in fact my mum is coming round today so we can work out a timetable of help for next week following my treatment! She actually had to put me (a 42 year old woman) to bed last time and instruct me to stay
I’ve actually woken up this morning with a slightly sore arm where my PICC line is and when I’ve looked it’s slightly red and scabby/ slightly yellow looking blob round the line entrance to my arm … so that’s great probably another call to the chemo helpline as no way I want my treatment delayed … I want these things bloody done and dusted
@wjs … I saw this image the other day and it made me think about lots of us in this group! I realised I was becoming my dad when I wanted to go on a factory tour one day!! Enjoy your birthday and those lovely planes xx
@pat did you enjoy Bridgerton for the plotlines or the gorgeous people getting up to mischief, be honest!!! Ha ha
@charlie22 ouch… the picc line does sometimes hurt and sting and get slightly infected but your team can normally clean it up or maybe you could?? Hang on in there… with lovely support around you (bless your mum getting you to bed), it will feel slightly easier and you’ll get through this. At least kids are back now… although I miss my annoying teenagers now they’re not around!
Keep going Charley22… one day I’m going to find out about all your names and the meanings … mine is so boring, my age (at the beginning) and my name… I should have picked something cool like ‘super woman who won’t put up with any crap over the summer’ !!!
@donna_51 I just love everything about Bridgerton but especially the clothes, the gorgeous people, especially Penelope and Francesca, the room decorations, and yes! the shenanigans they get up to I regret just putting my name and nothing more interesting but if I changed it now no-one would know who I am .
@charlie22 I hope the Picc line is OK and you can get it sorted out today.
@wjs we took our 2 year old granddaughter to RAF Cosford recently and to our astonishment she absolutely loved it. Every plane we saw she kept saying wow, wow and running round the place with her arms out ‘flying’. Great cakes in the cafe too!
Thanks everyone … all checked out by doctor and I didn’t even realise but when they changed my dressing Tuesday they didn’t put the little circle pad thing on it to stop it rubbing/ catching at the entrance to my arm. So they think I’ve caught whilst sleeping and it’s just cause dot to be sore! So all cleaned up and redressed properly got them to look at my tongue as well whilst there … said the best thing is regular salt washes… so on with that now!!
@donna_51 … know what you mean about the kids … today was the day my two eldest went back … don’t did feel very strange not having them come down every 10 minutes to raid the snack cupboard
@pat love the pic of your granddaughter - she looks so tiny under there We’re off to Newark Air Museum as it’s not too far away and have to wait for the nurse to sort my picc line this morning.
@charlie22 glad the picc line issue wasn’t any too serious.
I had my radiotherapy appointment yesterday (after the 3rd rearranged appointment ). They were really lovely and very reassuring about my decision to have this done for my lymph nodes. I also have a nurse assigned to me. Will be starting after half term so we can go away for a few days I will be having 3 weeks worth and have to do some breathing exercises on the lead up to it. But to be honest nothing can be as bad as the chemo can it so I’m not too worried about it.
@charlie22 phewww one thing sorted! Hope you’re back to feeling okay (ish!)
@wjs when does your chemo finish? So glad you have a date set for the next steps. I have 2 more pax but no idea when they will happen with my history of delays so no idea on radio! I have been brave/foolish and booked 4 days away @ half term … only in the UK but I am hoping chemo will be finished so I can swim and just feel a bit free whilst we’re away
@pat … she’s gorgeous… makes me nostalgic for the days when my boys were little and were excited about everything!!
@donna_51 I wish I could just stop her growing up any more! I felt the same with my 3. I loved it when they were toddlers - totally the best age to me.
@donna_51 I have 2 more - 4 weeks to go Next Friday then 4 Oct. However I’m also nervous of any delays We’re looking at booking a long weekend in Lincolnshire at half term, just waiting to see if my son can get time off work.
This made me smile at the Air Museum today (where I had a lush cheese and onion baguette and Lemon drizzle cake , worth going just for the lovely cafe )
I’m pleased to announce that after 6 incredibly long days and nights, I’m home !!! Yay
I never found out if there was an infection. But after 24 hours without spiking a temperature, they’ve let me out.
I’ve loved all the messages on here. It’s kept me entertained in some very dark and lonely times. @pat im intrigued to know if you live near cosford?
Xx
@alig1961 hurrah! I was thinking about you today and wondering when you were going to be sprung. I hope you feel well enough to enjoy being at home this weekend
I live about an hour from Cosford, near Llangollen in North Wales.
At least you are starting to feel a bit better for whatever reason. My mouth was also horrible with funny cardboardy tastes, but this suddenly resolved on day 10 or 11 and everything went back to normal so 
sorry MIA again but I have been reading all your fabulous updates and appreciate the kind words from when I last wrote!!
but fast forward to last Saturday and I was back to my usual self thank god… I think I just really overdid it straight after treatment and I need to remember to rest and ask for help 
sorry to hear your in hospital… your marigold story absolutely made me chuckle though!! 
and raised the point of going in as the autumn/ winter germs start going round!! Something I always knew I’d have to be careful about but how I’m actually going to manage case work made me think maybe I’m being too optimistic 
Then on Friday the annual birthday trip to an air museum to look at rusty planes 
We’re off to Newark Air Museum as it’s not too far away and have to wait for the nurse to sort my picc line this morning.
I will be having 3 weeks worth and have to do some breathing exercises on the lead up to it. But to be honest nothing can be as bad as the chemo can it so I’m not too worried about it.
We’re looking at booking a long weekend in Lincolnshire at half term, just waiting to see if my son can get time off work.
)
