Hi AMF. Thank you for the update. I definitely can relate to being anxious to start but also having a fear over what is in store for you the next few months. Stay positive and go easy on yourself as you go through treatment. You will be surprised with how strong you really are!
Thank you Ivy,
The help and support I have received from women on this forum has been invaluable.
I know the journey is only just starting but I am not going through it alone I will be relying on lots of passengers along the way.
Great to hear that your treatment is done and dusted hopefully life can start to return to normal.
Take care xx
Phew - you‘ve got your diagnosis and treatment plan - that’s a big step out of the way. Pleased to hear there are no lymph nodes involved. Wishing you all the best for the start of treatment - and keep us up to date! X
Thanks so much for the update, and it’s so lovely to hear you’re coming out the other side and feeling better every day!
I’m officially half way with my treatment now. Like you, they’ve gone aggressive with my plan, so weeks 1- 4:
Monday Chemo Radiotherapy
Tuesday - Friday Radiotherapy
From week 5 (next week) its the same, but Brachytherapy on a Wednesday instead of Radiotherapy and the same for week 6.
Ive been doing OK, except on a Friday afternoon where I generally feel absolutely awful, no energy and just low. So far the only effect has been a very slight drop in my potassium which I’m now on supplements for, but otherwise physically I seem to be standing up to it, aside from the fatigue, which I would class as mild to moderate. I can do housework, take short walks, but definitely need to rest afterwards. It’s cumulative though, I’m more tired this week than last, so I’m pretty prepared for that to change after next week.
I’m so nervous about the Brachytherapy. They’re planning 4, but they do 2 in a day at my hospital, so I’m in overnight Wednesday night after the treatments.
Thanks for the vein advice, mine are awful too. I have a bucket of hot water waiting for me on Chemo days that they soak me in - seems to work as they’ve managed first time since starting that!
@AMF I’m glad you got your diagnosis and plan, even mid way through the treatment I still say that the waiting was the worst part, it just takes such a toll mentally.
All I can say is, even though the treatment is hard, the support, both from Jo’s and the Oncology team and radiologists has been amazing. They have seen me at some really low points and are always willing to give the time just to let you get it out.
Asking for help from people has been hard for me, I hadn’t really realised I was so independent before, but one thing I will say to anyone starting this process is do it, ask for the help. You can’t predict how you’re going to feel, even almost on a daily basis, so having support around has been invaluable. It’s broken down a barrier my sister and I spent 30 years building up between us and now she’s bonding with my son in a way I didnt think was possible, and has been my biggest supporter. There are definitely positives that can come from all this. X
If I feel up to it, I’ll update again next week after Brachytherapy. In the meantime, I wish everyone the very best. We can do this. X x
Thanks for the advice. Thankfully I have plenty of help and support I have 8 sisters all living close by so can call on them anytime.
Glad that you are almost done my journey will soon be starting Keep in touch xx
Just thought I’d update before my brachytherapy starts tomorrow and ask a question of those of you who have been / are going through the treatment I am, Chemo radiotherapy - cisplatin + brachy.
I’m in week 5 of 6 now, done 5/6 Chemo, done 21/28 radiotherapy and I have brachy sessions 1 and 2 scheduled for tomorrow.
I’m nervous about tomorrow, and the fatigue is definitely hitting me harder now,
especially toward the end of the week (Fridays for some reason I always seem to feel my worst) but so far with lots of barrier cream and the occasional painkillers for very period pain like cramps, it’s been manageable. Bit of a scare on Friday with my heart rate, but it turns out I may have a preexisting condition that makes my heart rate a bit erratic anyway - gave me quite a fright, which probably didn’t help the heart rate
My question is about an unexpected side effect I’ve had the past few days - insomnia, has anyone else had this? The first
2 days I put it down to being woken by some bad cramp pains, and I did eventually fall back to sleep. But the last 3 days I’ve been waking up at 3.30am and ping, that’s it. I’ve always struggled to sleep on Chemo night, I think because of all the steroids, but this is a 5 day stint since Friday. I don’t know, it may just be nerves about tomorrow, but I’m mentioning it to the team today when I go in for treatment. Just wondered if anyone else had had it?
Hi @Tkd1985 !
I also was VERY sleepless in the night after my chemo, not sleeping a wink and sometimes not the day after either. Besides that, I didn’t experience too much insomnia.
I don’t fully know your situation/condition but I wouldn’t be surprised if it’s anxiety from the upcoming brachy. It’s totally understandable, but just know you will be okay!! It’s not a fun process but you’re strong and you can do it!
My energy really really crashes after brachy so try to go easy on yourself if that happens to you too. Please visit us after your brachy and let us know how your experience was!
I also know you were concerned about your energy levels with your child during treatment, how has that experience been so far?
I wish you a lot of luck!!
Hi Ivy and
Lovely to hear your latest updates. My treatment starts 3 August. I currently feel fine in no pain whatsoever it’s mad to think that in a couple of weeks I’m going to feel not so good. Not looking forward to it but getting my head around it.
Going out this weekend to have a final blowout before treatment then it’ll be laying low and taking it easy.
Good luck with the rest of your treatment Tisha x
That was my situation too, I had no pain until the Pap smear that diagnosed me. To go from no pain to feeling completely knocked down from treatment was so odd because it felt almost as though I was going out of my way to feel sick by doing treatment. Obviously, it was for a greater good but going from no symptoms to a ton of side effects was crazy.
I’m glad you’re getting out and having some fun before buckling down for treatment! Enjoy!! Hopefully treatment will be perceived as going by quickly, it did for me, and hopefully you’ll be back to it in no time!
Good luck as your treatment time approaches! Let us know how it goes for you.
Exactly the same. No symptoms to speak of until my lletz procedure. It’s a very odd feeling to know that you’re feeling sick because they’re curing you of an illness you didn’t know you had.
Short term pain for long term gain one of my nurses called it. He was right, but it’s still a very surreal experience. My husband and I were saying only yesterday that sometimes it still seems like it’s happening to someone else, and we’re spectators of our own lives as everything happened so quickly, you don’t have time to get your head round it.
I’m glad it’s not just me that can’t sleep after Chemo. I feel like I’m vibrating most of that night .
@IvyGardener it’s been hard with my son, but he’s been amazingly understanding all things considered. His dad has been phenomenal too. The hardest part is how much I miss the bits I can’t do. I’m far to tired for all the hands on bits, and I can’t wait to get back to them once we get past all this.
Hang in there everyone, we’ll get this done and be back to ourselves before we know it.
I’m glad your son has been supportive and your husband has been fantastic through this!! I’m so happy to hear that.
It’s hard, but it’ll come back for you as you heal up after finishing. Just be patient with yourself.
I am wishing you luck for the upcoming treatments!! Let us know how it goes!
So I’ve had my first Brachytherapy, and as others have said before, it wasn’t nearly as awful as I’d built it up to be in my mind. I had 2 sessions on Wednesday, and mostly it was a lot of waiting around, numb from the waist down. There were a few uncomfortable moments when they hooked up or unhooked, but it was more a sense of weight and discomfort than any real pain.
I had a panic attack going in (massive needle phobia) but my anesthetist was brilliant and sedated me before doing the cannula and spinal, so I didn’t feel a thing, or even know about it really until after the fact. When they did the extraction at the end of the day they gave me something a bit like gas and air to breathe in, and not only does it numb pain, it also messes with your memory, so I have no real memory of that either!
The meds did a number on me, I pretty much slept all day yesterday, felt very woozy and light headed. I do seem to feel a little better today, but still a bit unsteady. Just going to take it slowly and rest as much as I can. Got a little bit of cramping and very light bleeding today, but otherwise I don’t feel much different from before.
@IvyGardener how are you feeling now? Are your energy levels picking up? I too have had some hearing issues from the cisplatin, so my consultant has cancelled my final Chemo on Monday, which worried me a little, but she said she’s pleased with the shrinkage so far, so that’s reassuring. I hope that the hearing issues clear up for us both going forward.
@AMF have a fantastic weekend, enjoy it. X
Keep going guys.
I am so happy to hear that the brachytherapy went well!!! You are so strong! I am quite jealous that the gas they gave you when they go to pull out the device messes with your memory- that was for sure the worst part for me.
Just this week am I finally regaining my energy. I’m not normal still but I can do a lot more than I was able to do for a while. So it took me about 2 weeks to finally gain a good amount of energy back. It sounds like your brachy is broken up differently than mine so hopefully your recovery is faster than mine each time!
I’m sorry your hearing is affected as well! I’m going to a specialist to try to resolve it, but I’m not sure anything will come of it. What are you experiencing with your hearing?
I’m glad you got a brachytherapy down!! You’re getting towards the end, you got this!!
@IvyGardener yes the drug, whatever it is, is pretty amazing. I spoke to my consultant today, and she had to go over a load of stuff we apparently have already spoken about, which is apparently common with this drug. I’m grateful for it definitely!
I’m starting to feel it all a bit more now, very sore and still tired. But all in all I’d definitely say not as bad as I feared. Thank you so much for the kind words. I was very low yesterday when I woke up in hospital, and I’m certainly not feeling particularly brave right now, but I’m determined not to let this beat me.
I’ve been having a weird sensation in my ears, kind of like there is water in them, a bit like glue ear I guess, and a tiny bit of tinnitus. My consultant said on balance, as I’ve already had 5 cycles of Chemo, she’d be happier to stop the Chemo now in the hopes of not having any permanent issues, especially as she’s happy with the shrinkage she’s seen from her brachy scans. What issues have you had? I know the tinnitus is meant to be fairly common, but no one seems to know what’s causing the other, and I’ve had a hearing test and health check on my ears which came up clear.
I’ve been told that the aftermath should peak at 10-14 days post treatment, so that ties in with what you have said. I’m looking forward to the day climbing stairs doesn’t wear me out
Hi Tisha and @IvyGardener,
I start my treatment tomorrow will let you know how I get on.
How are you both doing?
I’m 2 weeks post treatment now, so I thought I’d give a bit of an update.
My final Chemo was cancelled due to tinnitus, and I’m really glad it was, as I had my second brachytherapy that week. While my first went well, I did feel very dizzy and tired for a good 4 days after it. The second one I didn’t get any of the dizziness at all, and although I still got tired, it wasn’t as intense as the previous week.
The last 2 weeks have been hard going. The first week I did a lot of napping in the afternoons, and ended up spending my first week free of treatment mostly at the hospital to have my bloods checked, as my white blood cell and neutrophils dropped really low, and I ended up severely neutrophenic.
They’re on the up now, slowly but surely, but with Covid levels on the rise again, I’m not risking going out anywhere unless it’s all outside and not crowded. Definitely don’t want to risk getting ill with a compromised immune system.
I’ve still got a pain in my left arm from one of my cannula sites, but my tinnitus seem to be getting better, and I haven’t had an afternoon nap in a week. I’m actually feeling surprisingly good in myself.
@IvyGardener did they ever get back to you about your hearing issues?
@AMF how are you doing? Did you get through the first couple of weeks OK?
Wishing everyone the best
Well done, Tisha - you’ve had quite a journey! If you’re only 2 weeks post treatment you’re probably still finding climbing the stairs is like tackling Everest - at least that’s how I felt! I too had some tinnitus with treatment, but this seems to have cleared up now. I had a sound like the jangling of electronic keys in my left ear at one point - but that passed. Hope all will be completely cleared for you.
You will get stronger week by week, but just try not to get frustrated if you aren’t jumping up and down with energy as quickly as you’d like to - the treatment takes a real toll on your body.
Wishing you all of the very best, and always great to hear updates from our ladies on here! X
Hi hope you are both well.
Great that you have finished your treatment Tisha and things are moving in the right direction.
It will take time to get back to normal, if there’s such a thing. But life will slowly return to what you had before and you will be able to put all this behind you.
I have just had my third chemo session and almost at half way point of radiotherapy sessions. Up till now no issues feeling good. I just take one day at a time if things go downhill I’ll just have to get on with it.
Hospital have been great so far no complaints.
I have MRI scan on 6 September to see how things are and if I’m suitable for brachytherapy it will be 10th, 15 and 16 September not looking forward to it but I know its a main part of the treatment and I want to be rid of this cancer once and for all.
Onwards and upwards
@Jacks133 yes, stairs are the worst! Even if I’m having a good energy day, I still find that stairs knacker me out! I’m really glad your tinnitus cleared up. That ringing is really annoying, I’m glad mine seems to be getting better. It’s so great to hear from someone who’s been through the treatment successfully. It seems like such a long wait for the results, so it’s comforting to see it has worked well for others. X
@IvyGardener fantastic, I’m so glad to hear you’re doing so well. Try not to stress too much about the brachy. I was terrified before hand, and built it up to this big monster of a treatment in my head, but the truth is that whilst it isn’t pleasant, it’s nowhere near as awful as I expected. I also have a massive needle phobia (which made Chemo each week a real hardship) and very bad veins, but I spoke to the brachy team and anesthetist before and they were brilliant, I was able to be sedated pre cannula and spinal, which really put my mind at ease. After that, it’s a lot of waiting around for treatment, which you can’t feel at all whilst it’s happening, and then having the bits taken out, which I honestly don’t remember at all because of the drug they gave me at the time (a bit like gas and air, but stronger).
Congratulations on being nearly half way through, you’ve got this. X let us know how you get on.
As always, best wishes to all