Annie I power napped all day last Sat and Sun which was day 3 and 4. I had 2 baths with muscle soak and stayed in my pjs all day. You just have to rest and I found bed was the best place for me. I had the electric blanket on all night on low just to warm my bones in the night. It does get better. I was also weepy, but was the same on FEC too. My husband just knows to give me a hug so I cry and get it out of my system.
It will get better and you will feel better soon, sending you a hug.
Heather
Treehouse - I have a very sore big toe, it is a small red, painful lump on the side of the toe. I have self diagnosed it as gout, a side effect of carboplatin caused by raised levels of uric acid.
btw my rbc is still low 89 but they still went ahead with chemo on Thurs so I’m getting increasingly breathless, not sure how low they’ll let it go before I can have a blood transfusion
That sounds just like me Rosie although the pain is not constant and is a bit like burning. I too am on carboplatin. How many have you had? I was wArned it would affect RBC. I am surprised they have not offered you a transfusion. Call them if you continue to get breathless or your pulse gets very high. I had a pulse rate of 125 just sitting still.
Feel amazing after 2 units of blood.
Yes the pain isn’t constant, painful if I prod it. It just appeared out of nowhere. I’ve only had one carboplatin, next one due this Thurs, but rbc was going down all the time on EC. Am seeing the oncologist on Monday so will speak to her, I’m supposed to have four lots of carboplatin over the 12 week cycle.
Husband has just reminded me that I ate a massive dish of strawberries when my mouth was white and furry, they are anti-inflammatory and antioxidant, that may have helped stop the oral thrush in the week.
H
Thanks Rosie. I have done 4 cycles now.
Let me know how you get on with onc.
Yes I am eating lots of strawberries ? too. In fact all fruit ? ???
Hi Heather, I can definitely relate to your side effects. Today will be another pjs day for me. I feel like I would feel slightly better if I could just sleep ?
Thanx for replying it makes me feel a little less insane x
Annie is this your first T?
Did you have steroids? Do you have injections?
My first one was the worst. I felt like I had been run over by a truck. Aches everywhere mostly my neck. It started when the steroids ran out I then spent about 3 days in bed. Recovered when injections stopped. I have the same pattern each cycle but no where’s near as bad as the first time.Take paracetamol and warm baths. Onc gave me stronger pain killers but they make me feel spaced out. My husband rubs my shoulders with badger oil that feels nice.
REST is does get better.
I know how you feel x hugs
Morning treehouse yes this is my first ‘T’. I had steroids the before the day of and the day after and 5 injections. I do feel exactly like I’ve been hit by a bus. The paracetamol and ibuprofen do take the edge off but not for very long. I haven’t had a bath because I have a Hickman line in but I’m defiantly going to run a shallow one today even just to soak my legs. Thank you very much for reassuring me that this passes xx
Mai - taxol seems to affect my tongue too. I’ve found a spoonful of Manuka honey dissolved on the tongue several times a day has almost cleared it completely . Also lots of ice lollies, I found that tip on an American site
My Manuka honey has now run out…aargh…it’s so expensive!!
Mai I too get ear ache every cycle not for long and no temp so it is becoming an se friend to tick off. I also get a lumpy throat. Not sore exactly just feels like there is swelling or lumps. Doesn’t last long.
Badger muscle rub came in a chemo survival kit from my brother. Organic cayenne and ginger. Smells nice and has a warming effect. Tiny little tin like lip balm. But you don’t need much. I sit at hubby feet while we watch GoT and he rubs my shoulders. Keeps me sane when it hurts to sit back and I get all fidgety.
Oh ladies this chemo isn’t much fun is it! Can’t wait for the first line now. Feeling fed up of it all and just want it finished! Going out with hubby today for anniversary but couldn’t feel less attractive, almost bald, scars and reduced sized boobs and a wire dangling from my arm. Sure he didn’t sign up for this 6 years ago! Oh and period has decided to make an appearance today! Was so hoping these would stop! Sorry moan over x
As for this picc line anyone, how long does it take to not feel it or do you always know it’s there? Just still feeling paranoid especially what happened to you wolfee. What symptons did you show for your blood clot if you don’t mind me asking? Think I just haven’t got use to it and and want to pull it out! X
Enjoy your pj days ladies xx
Katie11, I didn’t have mine in for long (gutted because the one single chemo I got out of it was so much easier) I had it fitted on a Wednesday morning that evening I had a shooting pain right inside my arm pit (I think I may have even mentioned it on here at the time?) anyway that pain was still there on Monday chemo day. I told the nurse and she said that can happen but if it still hadn’t gone by the end of the week let them know (so within 2 weeks) anyway that weekend I got bitten on my ankles and hand by an insect my hand was red and swollen so I ended up at a&e twice Saturday morning and again Monday morning and was put on penacillin. I told the a&e department that the pain I had in my arm pit since the bite has come back could it be a problem with picc and not the insect bite they said my lymph nodes maybe swollen due 2 the infection.
So my picc clean and flush was scheduled for Friday but a&e had looked at it and not cleaned it and left the dangle digging uncomfortable in my arm so I called the chemo ward and asked if I could have my clean and dressing changes early so it can be more comfortable.
So I did they said come down now. I was telling the nurse what had happened and said my swollen hand now looks ok but the arm pit is still sore she got the doctor who felt under my arm (didn’t feel swollen) he looked at my blood results taken at A&e and no sign of infection so I went straight for a scan that showed the blood clot so the picc line was taken out there and then.
I personally feel the blood clot started imidiatly the day the picc went in and I don’t believe I had an infection from the insect bite I think it was all because of the picc line so maybe the insect saved my life in the end.
The doctor did say that most of the time if someone will develop complications from the picc line it does appear 2 happen in the first two weeks that’s what he has noticed. Most people who get through the first few weeks generally do not have any problems after that.
I miss the pic line, it was uncomfortable when sleeping and having a bath but the chemo and blood tests are so easy. If I had been allowed 2 keep it I would have.
It is scary that’s for sure and I’m gutted now I have 2 do injections for a very long time. But try not 2 worry they will check it all over when you go for your flush and I think somehow your body would let you know if there is a problem just any niggle you have tell them. X
Hi Katie, happy anniversary. Your husband signed up for ‘in sickness and in health’ even if it wasn’t what either of you had in mind 6 years ago. I’m not sure when you had the PICC line fitted but after the first few days I haven’t really noticed it. I’m joining the pj day today I’ve got a cold and my period (2 1/2 weeks after the last one -not funny with bloods on Tuesday). The Jehovah Witnesses have just called. No offence if you are one, but their Kingdom Hall is just down the road and they always seem to come to us first. So I came down in my pj’s and said ‘I’m a cancer patient on chemotherapy needing transfusions to keep me alive so please go away and don’t call again.’ Bless them, I’ve never seen them leave so fast (ok, I haven’t needed a transfusion yet…). Hope the bath helps the aches ladies. I’m not looking forward to T on Thursday but will be having shallow baths with the PICC covered.
Good for you MJK you can borrow my transfusion for that one. I have know jehova whitnesses, lovely people but the whole transfusion thing makes no sense. It is easy to be idealistic when you are not critically ill.
Have a nice anniversary Katie. I do know exactly what you mean. We are celebrating 2 years next week. Not exactly the happy ever after we had planned. I feel like I ruined everything.
Also not feeling very attractive either. Husband made a comment that upset me. He is usually really sensitive but this hurt. Will try to talk to him later. I am currently cooking a big Sunday roast as BBQ looked like it would get rained off.
So glad we got each other to share.
Ha ha Mai
Yes sorry I get it for a day or so. I thought it was from the steroids. It goes .
I assume you have all had those weird and wonderful side effects.
Ooh Mai was laughing at the looking like you had been slapped not the feeling like road kill. Sorry.
Bed and Netflix is my prescription. My neck and chest also go red. Just keep taking your temp to be sure. X sending ? hugs. X
The most annoying thing if my chemo does get postponed tomorrow will be that I’ve taken the dreaded steroids for no reason!!! I’ve had 2 take some today and tomorrow morning before I go!!
I have high hopes for tomorrow though I’m thinking my blood will be ok it was just low because it was tested Friday ??
Katie11 - did you want my bath arm cover? If you look on a website called live better with it’s the see through arm thing they are quite expensive so don’t go buying one mine was only used twice I can just pop it in an envelope Royal Mail??
Doing a neutrophils dance for you Wolfee ??
It will be good ?