Thanks Mc22. I go lots of bone and joint pain with the injections.
This is more muscle and joint pain with the taxol. Slightly different for me between the two x
Mrs 1968 - so pleased you are feeling better in time for your chemo. Fingers crossed. I think my aches were worse this time but then it was a change of medicine to T. Never know whether it is the injections or the chemo that causes it.
Lynn I am interested in this change to one week of radiotherapy instead of three. So does that mean they would they would give highr doses? Are you being treated at a London hospital?
Yes I am. Had a temp of 37.6 yesterday and felt really rough. Was panicking in case I ended up in A & E on antibiotics and missed chemo tomorrow, but temp is down today and I felt a lot better. Thank goodness.
My aches were worse this week. Have you found they have got progressively worse? X
So pleased for you Lynne. Hope I only have to have one week of radiotherapy instead of three. I bet you can't wait to get the Picc line out!
Just had my tel appointment with my oncologist who has confirmed my last chemo will go ahead next week as planned, bloods allowing, and the chemo nurse will remove my PICC line after the infusion.
She also confirmed radiology will go ahead but possibly only 1 week instead of 3. This is not due to Covid-19, but is the result of a 2 year study which has shown that 1 week is as effective as 3 and was due to be introduced later this year. The timing may be brought forward in light of Covid-19 to decrease the no of visits required to hospital. I have my planning apt and CAT scan on 3/4 and it will be confirmed at this visit.
Feeling good today 🎉💪💕
Mc22 you asked about what happens when your PICC is removed. Mine went last week. It was really quick and easy. The chemo nurse did it and i didn't need to make any separate appointment. It took about 5 minutes. She took off the dressing, and split the orange valve thing which kept the line in place. This split it into two pieces, so it was easier to remove the little metal hooks. This bit stung a little but not more than an injection. She then asked me to relax and stretch my arm out a little. The more you relax the easier the next bit is. She basically just pulled it out. It didn't hurt at all, despite her pulling quite hard. Job done. She put a dressing on and within a couple of days it was fine to remove the dressing. After 4 days i had a proper bath 🙂
Horrible mouth feel - ice cream is the best thing. Definitely. Also an After 8 after every meal helps with horrible taste.
I have also decided to limit how much i read about whats happening, the more i read the more anxious i get. So best to step away and do something else such as call a friend, sit in the garden, write something, make a cup of tea in your favourite mug.
I'm guessing everyone has had the texts from the NHS? I got one saying i couldn't leave the house for 12 weeks, but i could open a window! I have another health condition which puts me at risk, so i'm trying to work out if its the cancer or the Addisons disease or both which has resulted in the text.
I as stressing about supplies and feeling out of control, so i snuck off to Tesco at 6.30am. I was really careful and now have a full fridge and even some gluten-free madeleines! Its amazing what a difference it made. I was starting to go insane having not left the house since chemo last week.
I hope everyone has a reasonable day, and can focus on something positive for a little while x
Livers, fingers crossed mine won't last that long. Horrible sensation.
Does anyone else ever feel their body has forgotten how to sleep? It is 2 am and I am awake yet again. This is despite taking a mild sleeping pill last night which I was only suposed to use on the odd occasion. It seems to send me off initially but only for about 4 hours. Really don't want to keep taking them in case I become addicted but desperately need sleep. On the night's over the last week that I haven't taken one I have just been awake all night. So many horrible things happening in our world that I am sure that must be the reason. The last time I slept properly must be at least a week ago.
To think that before chemo I never took any medication apart from the occasional paracetamol. Chemo has such a lot to answer for.
Hi @Mc22, my mouth issues lasted for about 5 days (loss of taste buds about 10 days). I go to my local chemo centre each Monday where they run a PICC line clinic and they clean my line. The nurse there told me the chemo nurse should remove my line after my last infusion next week, if not, she will do it the following Monday.
Lady34, how long does the sore/weird mouth feeling usually last? Hope it is not long.
Has anyone got a picc line? If so where are you going to have the dressing changed each week? And what happens when you have it taken out?
Lady34, so we are both suffering then. Hope it doesn't last long.
No, hubby has no history of clots. But he has asthma. I am fine for shopping as my daughters did a shop but now there is only me to cook for it is hard to motivate myself. The local grocers are now delivering to vulnerable customers and today they dropped off a 4 pinter of milk. No minimum order or anything.
I had to laugh because they are called 'Troops' and when I texted my daughter to say Troops were bringing me some milk my daughter initially had visions of a big army tank coming up the road with a 4 pinter!
Silvertong I don't have ice lollies but I do have ice cream! Will try.
Any suggestions for sore mouth remedies gratefully accepted. The weird sensation of thickness inside my mouth is as horrible as the soreness. I have tried corsodol and salt water so far.
Mc22 I’ve had this on last and got it now. Upper pallet thick gums too feels like inner mouth has doubled in size and won’t tolerate anything much.
Hopefully the clot was found in time to treat it easy. Omg did hubby have history of clots.
Keeping everything crossed he returns home treated.
Have you got anyone to get you shopping bring you food etc. There’s a .gov site to register as we are vulnerable new service to bring us food and shopping
Im panicky too didn’t sleep last night to wound up. Today got nhs call cancelled my scan next Monday so guess chemo on 7th will be delayed.
Looking into any benefits I can get. Watching cookery utube videos to stay sane and keep me cooking.
Sending love to all
Debolina-I hope you get some reassurance about your treatment soon. This uncertainty about everything is just so horrible.
Quick question: my mouth is sore and I have this weird sensation of thickness in my mouth. Hard to decribe. Has anyone else had this? Just came on today. Day 6. Panicking a bit about side effects I haven't had before. On edge generally, I think as I am sure we all are.
Hubby still in hospital and waiting for results of all tests. He has a clot on the lung which they are treating. So I am now in solitary isolation.
I totally understand where you are coming from. I was warned there may be changes to my protocol (and there still might be) and got really stressed about it, but for the moment my plan is unchanged. What I'm trying to say is try not to worry until you know for sure. Also, if the doctors do make changes, it's because they're trying to balance up all the different risks at this time but will hopefully try and make sure you can finish treatment, even if it is delayed.
But I do totally understand how you are feeling. Cancer is a big enough worry on its own without adding in all this extra uncertainty. I still have 9 rounds of taxol, surgery, radiotherapy and a year of herceptin to go yet so do worry a lot about how it's all going to pan out.
Sending everyone lots of love. Xxx
Frenchie_77 thank you......we are both having Docetaxol but I am now also having Targeted Therapy alongside my chemo...….whereas thankfully my friend doesn't......I don't know what stage I am as it is the one thing I asked not to be told...….I think I will probably need to know this now to help me get my head round the 'selection process' if I don't get prioritised for my chemo.
I am feeling really sorry for myself tonight but am getting over the shock at hearing this could happen so hopefully will get more info tomorrow...…..I can't imagine how the consultants must feel having to pick and choose the people who are having chemo.
Stay safe Frenchie_77 xxxx
Debelina, that news must be gutting but is your friend having the same treatment as you? I'm in France so possibly different although we are also being hit hard by covid 19. I had chemo today and they were postponing lots of people's treatments but said I could continue mine as planned (at least for the time being). When I asked how come they said it depended on the type of cancer, stage etc, type of treatment, general health of the patient etc. Lots of factors. So maybe yours won't be cancelled? I think they do look at each case individually and they did also say they just want to make sure those with the weakest immune systems/ frailest health are not put at risk. If yours does get cancelled, hopefully it'll be rescheduled? Not great I know but this whole situation is horrible xxxx
Mc22......sending you both much love x
I haven’t had a text but I think it’s because in Ireland the NHS system operates differently.....I have just had word from a friend who is also due to have her last chemo on Monday that we probably won’t get it.....I am absolutely devastated.
Stay safe ladies xxxx
What a day Mc22 hope you have a peaceful evening sending a big hug - haven't had my stay at home yet but haven't been out since last chemo anyway having so many wobbles right now! Today our blood test centre closed - Spoke to my nurse and treatments going ahead after telephone pre screening but said things are changing daily
Yes me too but also got text from hospital for a radiology appointment next Monday 30th.
Day 6 now feel human again ! The 5 days are don’t know how describe the series of sensations.
Anyway through the lens of virus everything seems warped and weird.
How is everyone today
sending waves of big love
Thank you for your kind messages. Hubby isn't in any danger but he is being kept in overnight awaiting the results of tests.
Love mc22 x
Mc22, just back from my treatment and saw this.
You must all be very frightened, and as you say, just when you think it couldn't get any worse...it does.
Thinking of you and sending you lots of love. I'm hoping you've had some comforting news by now.
Please take care, I agree that it is really difficult, but believe me it will get better.
My best wishes and prayers are for you and for your hubby to get better soon.
Please take care XX
Yes thank you MrsS1968. My daughters have been round and talked through the glass in our side door. Think it is all the stress. He is waiting for test results in casualty. Just wondering how we will manage with self isolating now he has been at hospital? They don't think it is his heart but he has asthma. I am still suffering side effects from last week's D so hope this will pass soon.
My husband who I have been in isolation with has collapsed. Ambulance outside and taking him to hospital just when you think things couldn't gwt any worse.
I am not a nurse, am a physio, but I think as we have a primary diagnosis we are top priority for chemo. They will look at each of us individually. My oncologist initially said 9 weekly paclitaxel, then said 9-12 depending how I tolerated it (pre Covid). We had a discussion last week and he suggested stopping at 9 as most people don't make it past 9 anyway because of side effects, it shouldn't therefore affect long term benefit, and in these circumstances will then allow my immune system to start recovering sooner than going to 12.
He didn't discuss radiotherapy with me. That is on the plan. I am not sure what they will do with that. I think I might be keeping my port for a while rather than going in to have it removed.
Everything is changing so quickly. Thank goodness we ae where we are. I do feel for those newly diagnosed x
spinks love the 5000 steps. Thanks rizzer and Madcatlady wowzer what craps pain and frustration. Anyway I think I can’t be sure but on Boris bulletin today heard that cancer treatment will be delayed or stop for many.
The nurses on here dyu think they will stop it if we’ve got only one chemo to go?
im gutted😩 want to complete it but the low immunity it creates could be too risky.
sending tons of hugs 🙏🏽😀🙏🏽😀🙏🏽
You might want to keep the chemo thread as your main home thread us oct17 thread did so as we bounced off to rads or ops threads we still chatted away on our chemo thread daily as we were in it together 👭 just a thought 😘💕💕✨✨Shi xx
I know exactly where you are coming from. We all knew we had the strength to get through chemo and now this additional stress/ threat is one extra thing to get our heads around.
We will stay strong and get through this. We don'tb to stop chatting because we finish chemo. We can keep in contact and support each other.
Roll on finishing chemo for us all so we can rebuild our immune systems to stay healthy.
Stay strong x
Hello ladies...…..I haven't had it in me to post on our thread as I have had nothing positive to contribute to our wee lifeline but I am now through my steroid low of chemo #5/6 and feeling so much more happier!
I haven't found any pain relief during docetaxol and can't give any suggestions.
For me I have found the side effects of chemo horrific physically but I expected this from the moment I heard I needed chemo so mentally I have coped really well in my opinion with the sickness, hair loss, digestive problems, loosing my nails etc etc...….I coped because I know that these side effects are temporary and the benefit of going thru them is going to be so worth it for myself and my boys.
For me the steroid low has been 100% worse than the side effects of chemo.
I have also had #2/23 cycles of targeted therapy and have to say I am realising now that as we are all getting near to the end of our chemo cycles I am going to miss your posts and advice but I am also so so happy that you will all be able to close this chapter in your lives of chemo and move onwards in your treatments.
I cannot believe what is happening in our world with coronavirus and my heart goes out to the ladies who are further behind us with their chemo treatments.
I know we all need to self isolate in our homes for 12 weeks.....my son is finished school until September, my husband who is a driving instructor has decided to stop work and I myself cannot go back to work which I had been doing every cycle apart from the 4/5 days of steroid depression......I don't think I could bear it if I hear that we need to 'shield' ourselves in our own homes from our families but if we have to do this there is simply no other choice.
Stay safe ladies and thank you again for all your humour and love xxxxxxxx
Sounds like you're setting yourself up well for keeping safe and that you've got the support of those closest to you in having to isolate.
Take care, and hope you got walking.
I've been using my exercise hula hoop in the garden, but the cat was obviously not impressed by my efforts and came back inside.
I used to be a demon hula hooper when I was a kid. My excuse is that the exercise ones are weighted and harder to keep up, rather than that I am a somewhat different shape (i.e. where is my waist going...) 🤣
Hoping you had a reasonable night and the hot water bottles worked. There's an end date in sight so stay strong and hold onto that.
Good morning all,
I hope everyone got not sleep than me! Thank you for kind words and wishes and cute dog gif!!
I sleep through most of the chemo day, it's a long regime, 10.30am till 5pm everytime, and the following one was spent on the sofa. I'm hoping today I'll be able to get back to my daily walk target of 5000 steps.
I'm getting such massive night sweats that I'm not sleeping much for last 4 nights.
I've got surgery next, on April 20th then I've got a month of radio therapy. So treatment done by July.
Im all stocked up, and settling into 3 weeks of isolation till immune system returns. My housemate moved out to keep me safe and my partner works on a hospital so she is staying away too. So I'll be looking after myself. Trying to cook something and eat properly but got freezer food too incase.
Hope the suns out again for us, take care all xx
It seems a few of us are struggling with pain issues right now. I have been clutching my hot water bottle all day and spent the day in my pyjamas which is unusual for me. It hardly seems worth taking painkillers for the little relief they seem to offer. I think the hot water bottle offers most relief. A bath would be lovely but I can't relax in the bath so easily with a picc line, so making do with showers.
I hope all of us manage to get a reasonable night's sleep tonight. That is medicine in itself.
I hope you are all managing to get groceries. Had a bit of a panic attack today about everything. Hate feeling vulnerable.
Sending you all lots of love.
Just a quick tip not sure if I’ve already mentioned for the vice like bone pain, Epsom salt baths have worked well down the chemo threads ❤️ Sending ✨✨✨✨✨💕💕✨✨✨Shi xx
Evening lady34, horrible combination of being in pain and not being able to eat (even for comfort) Sorry to hear that is what you have to go through. Roll on 7th April for you ❤️🛎.
I really hope the pain starts to ease a bit and you can get hold of the gelclaire. Lots of love Xx
Had T on Tuesday. Got my last one on 7th April. Day 4 of filgrastim injections. This time took cocodomol but pains not relieved.
Going to make a hot water bottle now. Need several though! Promised gelclaire from once but hospital ran out. Been using benzidemine spray only so not eaten for 3 days.
Ive got through self isolating separate from hubby he’s still working so I’m at risk.
Nothing to to say about corona. Totally overloaded need time to absorb how I can cope in this.
So so far so good apart from night terrors 😩 restless sleeping or knocked out.
All we we can do must be done.
Stay safe Stay strong