Yep I have tried all the usual, warm milk, relaxation CDs etc. I do think I am missing the exercise as I normally do a lot of walking. Fingers crossed it will pass. Lavendar, yes, that is on my list of things to try.
Yes I agree exercise will help. I have a picc line which is a bit restrictive but hopefully will get it taken out next week. I normally love walking but have been walking round the garden. Not sure whether we are supposed to go out for the daily exercise if on chemo. I will look out for the Jo Wicks on youtube. Thanks.
sorry to hear about your persistent insomnia. You must be feeling pretty frazzled by now.
Are you able to exercise? Sorry if you can’t for other physical/medical reasons I don’t know about...
In my experience that certainly helps. Jo Wicks is doing that morning PE session on YouTube which can be done in a small room!
Whatever you can do to push yourself physically could have beneficial effects on your anxiety and help with sleep. A few tai chi exercises?
Even if it just gives you some relief for the time you’re doing it from the constant worry. From experience, if you’re out of breath or focussing on your body movements it’s hard to ruminate about anything much.
Apologies if this just isn’t suitable for you. Just trying to put some ideas out there which might help.
take care and I hope you can get some sleep soon Xxx
Mc22 poor you. It was probably initially down to the steroids and now you have got yourself in a pickle your mind is probably causing it now.
Have you done the usual sleep hygiene things? Bed at same time, nothing in the bedroom eg tv, warm bath before bed, warm.milk can help, maybe lavender essential.oil burner? X
MrsS1968 - yes I have tried meditation, relaxation CD's etc. But I really think the cause of my anxiety is the fact that since my last chemo 15 days ago I have not been able to sleep. It is really beginning to worry me now which isn't helping. I am wondering whether it is something to do with the fact that I had the steroid on the day of chemo by injection, whereas previously I have only ever had the tablets and just had insomnia for a couple of days. A nurse said even an injection should have left my system by now but I am not so sure.. I have never gone without sleep this long before. It is like my body has forgotten how to sleep. The doctor prescribed zopiclone which i have taken on odd nights and get about 4 or 5 hours but am reluctant to keep taking because these drugs are addictive. I am at my wits end worrying that I will never sleep naturally again. If it is the steroid injection that has caused this I hope and pray it wears off soon.
The fact that I feel hyper all the time is what makes me think it is something to do with the steroid injection. I am really struggling with this and my GP has no solution except sleeping pills. I am worried also because I have taken zopiclone a few times this insomnia might be a rebound affect.
Has anyone else had anything like this. It is horrible and it is making me depressed.
Hugs Mc22- have you tried any meditation for your anxiety? I have found Headspace very helpful.
Rizzer I totally agree re him speaking directly to us. It felt good someone recognising and acknowledging what we are going through x
Sorry mrs s1968. For some reason I thought it was your last; possibly because you were talking earlier about radiotherapy and I didn't scroll down to re-read.
I was so on edge when the nurse came but just held a scarf to my face and nose. She wore a mask while dressing the picc and then kept her distance. I quite exhausted myself wiping everything down with ant-bac afterwards.
Hey mrsS yes I did see George aligiah! I think he’s amazing. It really did lift my spirits too.
I loved the fact he spoke to us directly as fellow cancer sufferers. Comfort comes from unexpected places doesn’t it. It’s true what he says about our already having faced a situation where the outcome is uncertain for us. I think the nation/the world is facing up to that now for themselves. Made me feel proud of us for all we’ve coped with mentally and physically Xxx
MrsS1968 - hovering does really take it out of you 😜
Ooh although the Quote function is gone, the emoji selection is much better!
Thanks Madcatlady, unfortunately not the last one tomorrow, 3 more to go 🤞🤞🤞
Really fatigued today, but not as bad as your sister. Hovered and mopped floors which I can normally manage on a Wednesday but it has totally wiped me out x
Has the nurse visited yet? If not, I'd agree with MrsS1968 and suggest you put a scarf over your mouth if you're worried, then wash it. I've worn those paper ones from the hospital when out shopping earlier this year but found they got wet very quickly. It doesn't help when you have no nasal hair and your nose is leaky. So I don't think it really helped, just freaked out the other shoppers 🤣😈
I also have to agree with MrsS1968 about George Alagaiyah. Stage four, facing the return of cancer, all that chemotherapy and now coronavirus. And being so sanguine about it. I had a bit of a secret crush on him already so am even more impressed!
Will be thinking of you tomorrow as you go for the last treatment. I'm sorry you're still suffering from aches and pains and fatigue.
Rizzer, not long for you too..not having had that horrible nerve pain this time must feel like a blessing, but the fatigue gets you down. Normal tiredness is fine when you know you've earned it (usually for me it's manic gardening activity after being a sloth and then feeling guilty), but this is something else. I remember my sister trying to describe it when she was going through her treatment.
One day she was sat on the settee and slumped sideways, but she said her brain was so fogged and her body so fatigued, she just couldn't seem to get upright. After an age she managed to...but then just slumped to the other side! She said it was actually quite funny, but at the time did wonder if she would ever come out of this fog of exhaustion.
Thanks Mc22- just 3 more to go. I just want to get them done now.
Re the masks, they aren't that effective anyway, so don't stress. Staff are now wearing them in my oncology unit but they change them every 4 hours! Almost pointless. If you are really worried, wrap a scarf over your nose and mouth, a few layers is more than one of those surgical masks, pop it straight in the wash and wash your hands after she has been. I understand that you are worried. But please try not to be, the member of staff won't be coming if he/she has any symptoms.
On another note, Did anyone see George Alagayah on the BBC News last night? Stage 4 cancer, over 60 rounds of chemo, was feeling really rough, no real symptoms, they ran a load of tests and he had Covid19 and is all good now! That made me feel a lot better.
Take care ladies xxx
Mrss1968 hope your aches and pains ease soon. But console yourself with the knowledge that it will be the last time.
I am a bit nervous as I've got the community nurse coming shortly to dress and flush my picc line. I know she will be wearing a mask but should I wear one or a scarf or something? A kind doctors' receptionist dropped off one of the surgery's masks thru my lettterbox knowing I was so nervous, but it wasn't in a sealed bag so worried even that could be contaminated. Where can you even buy masks now? And how do you know if they are the right standard? Got one more visit for blood then to the chemo unit to have picc removed. Just panicking a bit. Any tips welcome.
I am so in awe of all you ladies. You all come across as so strong in circumstances we could never have imagined at the start of our treatment.
Lots of love to you all. You are all super heroes.
Isn't it interesting how the mindset and priorities change with this situation? Yes 16th, all being well. Then 3 week break and hopefully start radiotherapy. I had a phone consultation with the oncology registrar yesterday who said I will have 15 daily sessions. They can't give me 5 at a higher dose because I have had a reconstruction. I don't mind, as long as I get it!!!
Bad aches and pains this week plus fatigue. Not long to go for either of us 🤞🤞🤞
Well I’ll be thinking about you on Thursday MrsS. Like you’ve said before, isn’t it amazing how we’re just flipping desperate to get as much of the the chemo ‘poison’ as possible now! Wasn’t in my list of things to worry about (biiiiig long mental list) that something might actually stop me getting the chemo other than blood test results... By my calcs your last one will be 16th then 🤞 which is a week before mine. Still aching after this last infusion...not had the bad nerve pain tho’ thankfully...but general fatigue is just continuous 🥱 zzzzz Xx
Crikey Debbie, that sounds really horrible. I'm so sorry your chemo ended this way. It's great that you are already managing to focus on the positives. Big hugs xx
Madcatlady, thanks for your post too. Yes you're right the lady's age was a big factor, also the fact that it was BC rather than another cancer and just because it is what we all dread happening. It's ok, I know every case is different, I just felt so sad for her.
Big hugs to everyone xxx
Debbie, what a truly horrific experience being told your last chemo was cancelled and having to hear that on your own - and for your poor husband who wasn't able to be there.
I am so sorry. You get all psyched up for it, then boom...it doesn't go ahead.
Your grace in accepting it is amazing. It just shows what resilience and strength you have.
Oncologists will now have some very difficult decisions to make about who they prioritise for chemo, albeit we were told cancer treatments wouldn't be a casualty of coronavirus. Coming to the very end of our chemo must put us in a stronger position than people who have had only a few.
My oncologist had said they wouldn't give me no.6 if I ended up in hospital again with no.5, and that both would only be at 60%. In the end I was able to have no.6, but I had to trust that she felt confident in potentially not giving me that last one if needs be, and in the doses being reduced.
Thank you so much for sending your love and positive wishes when you're having to process this. They're being sent back tenfold to you! ❤🤗
Thanks Rizzer. Yes Thursday will be no. 7. I am still up and down with a low grade temp. My nurse yesterday considered giving me a break this week, but thankfully bloods were ok. I just want o get them done in these circumstances. I can see why not many people don't get past 9. The cumulative effect is hard going.
How are you feeling? x
Hey mrss, sounds like you’re having a tough ride with the paclitaxel now...sorry you’ve been feeling so rough. I imagine doing chemo having barely recovered from that temperature you had, will have hit you harder. Is Thursday your 7th? Xxx
Well done for getting your head around that. These really are unprecedented times. I had my 3 weekly review for weekly paclitaxel yesterday and have been so rough with this last one that the nurse was considering giving me a week break. I have 3 more to go and desperate to get as many as I can in because I think they may need to stop early at some point because of this situation. Thank goodness my bloods were ok and we are going ahead on Thursday.
Thank goodness we have all had the majority of our chemo. Good luck today livers 🤞, enjoy your mini celebration xxx
Hey elsiedog, massive well done on your last chemo. I wish it had happened in less stressful circumstances for you. I hope with a bit of time and in less frightening times, you get the chance to appreciate and celebrate what you’ve achieved. Best of luck tomorrow livers - thinking of you and sending love Xxx
I’m amazed that you’ve managed to get to a place of feeling gratitude for having had 5/6 chemos - feeling that already after just going in today, to be told you couldn’t have your last one, and to receive that news on your own. I think it shows just what incredible resilience you have. Sending you a big hug and loads of love Xxx
Elsiedog and Madcatlady…...I am sending you much love to positive wishes to get you both through any side effects from your last chemo 😻🐕x
My last chemo of docetaxol was cancelled today. I was extremely emotional when the Dr told me this......the Dr was also very emotional......I can't imagine how the Dr's felt when their shifts finished today having to tell their patients that they had to choose who was getting chemo and who wasn't.
I need to go back to hospital tomorrow for my 3 weekly Targeted Therapy.
Now I am over the shock of hearing this news and breaking it to my husband who wasn't allowed into the hospital to come with me I am beginning to feel so so grateful to have been able to have 5/6 cycles of chemo.
Much love to you all - Debbie x
Oh Elsiedog, what a stressful end to your chemo treatment...but congratulations on getting there.
I know exactly what you mean about not feeling able to celebrate, but at some point we may feel like it!
Get some sleep and just keep telling yourself that you've got there. However weird it all feels, you got through chemo 🤗🎖
You should feel you can vent - we all should - our lives have been taken by the scruff and thrown around by cancer (and coronavirus now).
MrsS1968 is right; the other lady may have a very different cancer and treatment plan. It's the fact she's the same age...it brings it home, doesn't it?
I've heard too that many people don't get to the full 12 because of side effects, but at least they're going to review it. At the moment they may be saying only 9 because they don't feel they can commit themselves because of coronavirus.
I worried about them reducing my docetaxel doses, which isn't quite the same, I know. In the end I figured it was better to accept what I could on the oncologist's advice.
Thanks Lady34, Adelemck, Shi and Mc22.
We will all get to the finishing line! Shi has already got past it, like lots of women, including my sister.
It just takes a lot of faith...and love from those fighting alongside.
Lots of hugs
Thanks everyone. Hope I get my taste for alcohol back at some point so I can have a wee glass of fizz to celebrate!
Oh Elsiedog, sounds like a hard day but well done for reaching the end of chemo. Make sure you celebrate when the time is right. Well done too Livers, very nearly there! Xxx
@Elsiedog, I also have my final chemo tomorrow and having radiotherapy x 5 days in about 3 weeks, plus Herceptin injections up until Jan. ‘21, but have a little bottle of champagne on ice and takeaway menu ready to celebrate!
Stay safe and good luck with radio 🍀🍀
Sorry to hear you had such a rough final chemo @Elsiedog, but you are done 🎉🛎🛎🎉.
I don’t think it will hit us that we have completed until you find yourself not getting ready for the next round of chemo!
Ring that bell 🛎🛎💪💕
This is a hard time for all of us Frenchie- in this strange world we are in at the moment, it’s hard to know how to feel. I’ve just returned from my last chemo which means I should be celebrating. But I was so wound up and nervous about protection and masks. When I arrived there were hardly any patients in the waiting area which was good, my appointment was at 2.30pm. I eventually got my one hour infusion of Docetaxel at 6.30 pm. They had booked 8 patients in with one treatment team at the same time. But every time anyone asked what the delay was, no one on reception could tell us that. It was up to the poor understaffed hard working nurses to tell us what had happened and they were so apologetic. A couple of patients were in tears in the waiting areas. Anyway, back home after 6 hours and feel completed knackered and what a total anticlimax to my last treatment.
Yeah, not the best! I think normally meeting the psychologist would be a separate appointment but as they are trying to minimise trips out of the home they are doing it this way. There is a wall between us so we couldn't actually see each other but then there's an open doorway so you can hear everything.
Thanks both. Mrs S, yes you're right, her cancer is a different type to mine so our situations are quite different. But it was hard as she spoke to the psychologist during chemo and without wanting to, I could hear the conversation so probably got more details than I otherwise would have. Over here the give you ice filled gloves and slippers to wear during taxol (1 hr) to help prevent nerve damage (a bit like cold capping for your hands and feet). So couldn't even distract myself with a book.
Yes, we are all confined at home, have been for the last 2 weeks. My husband does the food shopping and my only outing is for chemo. I have 2 children at home but schools are closed now so they're home too. We haven't been told 12 weeks but the oncologist did say today that even when things start to get back to normal I'll probably still have to stay home.
Thanks again xx
Hey frenchie - we’re here for you love ❤️.
What a sad story about the lady from chemo. A painful reminder of the line we’re all walking. Your feelings are completely understandable and detaching yourself is easier said than done. I can’t imagine there’s a single one of us who doesn’t get overwhelmed by this and know exactly where you’re coming from. Wish I could reach out and offer you a big hug.
Of course you’re gutted after that experience, then also to have the uncertainty about your own treatment. It’s just too much in one day. Some days are pitiless like that aren’t they - when it doesn’t feel like there’s anything but bad stuff happening and the situation is too painful to bear.
You will find the strength to keep going tho’ love, and your mood will lift again.
In the meantime, know that I am thinking of you and wishing you all good things, take care Frenchie and perhaps find some way -whatever you can at this time - to treat yourself Xxx
Please don't get disheartened. The lady you met probably had a different type of cancer, different receptor responses and different distribution.
I am not Her 2 +, but am having weekly paclitaxel, following 3 x EC. Initially my consultant said 9 paclitaxel, then said 9 to 12 depending how I tolerate it (pre CV), now he has said he will stop it at 9. Apparently most people don't get to 12 anyway because of SEs. I had no. 6 last week and the aches, pains and fatigue have been really bad this week, so I'm not surprised that people don't make 12 if it's going to keep accumulating.
I am just so grateful to be at this end of treatment, rather than newly diagnosed. I nearly had a fit when the nurse considered giving me a break this week. I just want to get them in now. Who would have thought I would be looking forward to having chemo?!
Take care and keep going. Stay positive. Are you in isolation in France? In the UK we have been told to stay at home for 12 weeks, other than hospital appointments x
Hope you're all doing ok in the current context. Sorry I'm not very good at posting to support others and then just come on to post a woe is me message but I'm feeling a bit overwhelmed right now.
I'm now on weekly paclitaxel with fortnightly herceptin and feel very fortunate that side effects have been minimal so far. I had my fourth round this morning.
This morning I chatted to a lady at chemo who is my age (she's 41, I'm 42). She had treatment for BC 2 years ago and it has now come back as secondary so obviously the outlook isn't great and there are signs the chemo she is having isn't working. I know I need to distance myself and not get too carried away but it is clearly pretty close to home and I just felt so sad for her. She has 3 young children.
Then I had my phone consultation with the oncologist which went well but he said government guidelines (I'm in France) say that my treatment should be reduced from 12 to 9 sessions. I know that in lots of cases people don't do more than 9 for a variety of reasons and he also said that because I've only done 4, they will review that decision at the end of April depending on how things are going with the covid 19 pandemic they may allow me to go above 9. But I can't help feeling a bit gutted all the same.
Thanks for letting me vent! Lots of love and positive vibes to everyone xx
Madcatlady I think you're right. I think even without this coronavirus crisis many people don't always feel as they expect to at the end of treatment. I have heard that a lot.
The vaseline has helped my nose, thanks but still got a sore throat. The doc prescribed thrush treatment on a phone appointment without even seeing it! I didn't think it was thrush as there no white patches. Took two doses and stopped after speaking to a pharmacist who said if it was thrush you'd know it. I think it is just a normal sore throat.
Really hope it clears up soon as being in solitary isolation I ike to be able to talk on the phone.
Obviouly still talking to hubby a few times a day. It is horrible being separated but both trying to keep our spirits up. You don't have much choice in this situation. It's sink or swim.
Take care and lots of love.
Awh madcatlady 🛎 the half way bell has been passed
Your strength and resilience have taken you to the finishing line. Lovely image of you in the garden with cat and memory of chips.
Youve done it! Congrats
Love and blessings
We're going to get there!
I feel much better having read all your lovely messages...❤
Sending lots of love to everyone.