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
I count the days with the filgastrim. Seven days and by halfway I've had enough of the aching bones and that 'hit by a ten ton truck' feeling.
Hopefully the treatment will feel similar to last time, but you can never say for sure. Fingers crossed!
You stay safe too. It's pretty scary at the moment. I just wish I could be like my cat, blithely unaware and stretched out on my bed! 😸
Madcatlady - I have 6 more injections to take but hopefully the pain won't continue throughout! I never had this pelvic pain on EC.
I hope your last Docetaxel is a bit easier. It is so scary for us even just having to go to the hospital when we are so vulnerable. It seems so unreal.
Love mc22 xxx
The pains sound nasty...fingers crossed they calm down. I get similar with the filgrastim injections and can't wait for them to subside.
I'm having my last docetaxel on Monday. All the feelings I expected to have at this point are nowhere in sight with coronavirus being uppermost instead. All I can feel is huge sorrow for those just starting chemo treatment as they must be desperately anxious anyway and uncertain about the current situation.
All we can do is keep safe, focus upon what we can do and what helps us, and support each other.
Love to all ❤💜💙
Sorry to hear your chemo has been cancelled, and hope you can go ahead next week.
In the meantime, it sounds like you've plenty of ideas to keep yourself safely occupied.
Thanks Rizzer. It is reassuring to know you had something similar. It is so helpful to be able to turn to this forum when anxious. Haven't got any oramorth and have never been given any. Hopefully, it will pass soon. Will just have to make do with co codamol and hot water bottle.
Hi mc22, yes taxol/taxotere is a sneaky blighter. Sorry to hear about the pain. It’s horrible.
Certainly there are pains/aches for me, that weren’t present on EC. I’m just over a week in to a 2 week cycle (next cycle on a Thursday) and the nastiness of the pains days 3-6ish were very unpleasant. I had nerve pains and general aches that were severe at the start but have now eased. I said to the chemo nurse during infusion coincidentally that I had something like period pain too.
I tried oramorph left over from surgery and although it wasn’t great, it certainly helped me sleep through it ❤️. Take care - warm baths, hot water bottles, being kind to yourself- it should get better over the next few days.
Might want to ask about being prescribed some more effective pain relief at the next cycle.
Had Docetaxil Wednesday. Pain in groin/pelvic area. Bit like period pain. Neither paracetamol nor co codomal offers much relief. Didn't have this on EC. Hope it passes soon.
Feeling very scared with current crisis.
I expect we are all feeling the same.
I'm also not on filgrastim with paclitaxel but still getting joint and muscle aches!
Have you watched Sex Education on Netflix? It's brilliant- so funny and so well written, great character development. If you are looking for viewing suggestions, I am your lady as I have definitely been taking advantage of Netflix and iPlayer these last few months!
Enjoy the sunshine x
Sounds like a healthy way to look at it B4. Good for you. Enjoy your afternoon Xx
p.s I’m still on injection lipegfilgrastim on paclitaxel, but my cycles are every 2 weeks, so perhaps that’s different.
Hi Mrs S and Rizzer
no Filgrastim on Paclitaxel... will have repeat bloods next Friday and if 1 or more then will have chemo. In this world with corona, I should b glad (in a way), that I did not have it.
getting on with life now...
listen to music
do some sketching
love of all
Lovely puppy video Rizzer,
my chemo go cancelled today as Neutrophils quite low😱😱
I hope they come back up soon..