Dropping in from the May thread to say how your post resonated with me, @wildthingsare
We’ re on a lonely road, that’s for sure. Loved ones, carers and friends do give support and help and even hope, but unless they‘ve been through the frightening and often confusing process of cancer and chemo, they can’ t truly be a part of that loneliness. If they could, it wouldn’t be quite so lonely! That’ s why these monthly chemo threads are such a godsend, here are women who DO fully understand what we’ re all struggling to get through. Here Be Dragons!
Canada’ s not going anywhere, it’ ll still be there when you’ re ready to take it on. Truly disappointing for your family, but you’ re more important than the big holiday right now.
We all know that life doesn’ t come with guarantees. We never know what will happen by the day’ s end, but we live in hope that there WILL be a tomorrow, and that we WILL get through it. Day by day, week by week, treatment by treatment. Planning and chemo aren’ t the friendliest of bedfellows, so we can feel out of control of just about everything we used to see as ‘ normal’. For now, this IS the new ‘ normal’.
Your life is waiting for you, but it’ s just a bit further along the road than you expected it to be. It’ ll be more than worth it, when you get there.
Hi @wildthingsare I’m so sorry you’re having such a hard time right now. It’s completely understandable that everything feels overwhelming. What you’re carrying is incredibly heavy, and it’s okay to say that it’s hard.
Having your holiday cancelled and feeling like you can’t make plans must be heartbreaking. It’s not just the treatment you’re grieving, it’s the life you thought you’d be living right now. Anyone in your position would feel scared and exhausted.
You don’t have to apologise for offloading. That’s exactly what this forum is here for. You don’t have to be positive all the time or carry this on your own. You’re not facing this alone - whenever you need to offload, just type a message and before long someone will be here to listen and support you.
Sending you the biggest hug. I really hope tomorrow feels a little lighter
Thank you both for your kind messages. It’s so good to speak to people who understand. I think im still reeling from what feels like the total upending of life as I knew it. I feel so grateful that I’m being treated with the hope of being cured, as i know not everyone is in that position, but equally scared that all of this aggressive treatment will be in vain.
But ultimately, this is a really self defeating and pointless mindset, that wont change the outcome of anything. It’s just so hard to think of anything but cancer at the moment, with the weekly treatment cycles and blood tests and feeling crap. I think i need to start carving out a bit of a new normal away from the cancer, but its just so hard to find any time right now. Hopefully once the kids go back in Sept, and my cycles go down to once every three weeks some normality might emerge again.
Im really appreciating this forum as an outlet for all of this. Amazed at how many other women are fighting this battle at the same time, and feel a great affinity with you all.
How has your first week been @fried_eggs and @leotee13 ? And any other new starters? Hope you’re feeling a bit brighter @wildthingsare it’s so bloody tough mentally and physically but we’re in it together. Had my 2nd treatment today. It was fine but I’ve spent the evening spiralling about how many more there are to go and all the things that could go wrong. Not helpful! Now watching a film with my 11 year old and shouldn’t really be on this forum as I’m meant to be chilling but just wanted to say hi to everyone and wish you all well. Have good weekends. X
@daffodil10 thank you for asking. I’ve felt really weak this week. Not eaten much since Tuesday and had no energy so phoned the emergency number this afternoon who said to go in. Checked over and basically just need to make sure I eat. Got some of the Fortisip drinks but after tasting one am now trying to force some food down! Xx
Don’t apologise for offloading. Getting these thoughts out of your head and onto paper is the healthiest way, and we are all here too, so this is the safe place to do it. You’re amongst friends and comrades.
I wish I had a magic wand or some safe words of wisdom.
Keep turning the pages of this bleak chapter, one page at a time, keep turning. Soon the story will be brighter. And keep talking to us.
Oh bless you. Yes, definitely keep eating, little and often of wherever you fancy. I’ve been nibbling on fruit, nuts, breadsticks, cheese whenever I’ve not felt like a proper meal. It definitely helps the energy levels. Hope you pick up soon x
I completed my tenth round of chemo yesterday and it was my last dose of the Pembro/Pac/Carbo combo, which was often a very long day and yesterday was no exception at eight hours so I’m ecstatic about that. I have two more Pac to go over the next couple of weeks, then I switch to Pembro/EC every 3 weeks for 3 cycles in mid-August.
It’s completely normal that cancer is taking up a lot of your head space because it’s a really big deal and is taking up a lot of your life. I actually don’t think the mindset you’ve described is self-defeating or pointless either. I’m also extremely grateful for the treatment, but at the same this doesn’t make it any less difficult and I’ve had those “I’m so sick of this” moments, especially in the particularly bad heatwave days here a couple of weeks ago and when my haemoglobin was down to fumes! I think that being able to hold and express those two opposing ideas is actually very healthy.
Certain aspects of my life are on hold while I’m doing this in terms of changes I want to make that I naively thought I would be able to do whilst undergoing treatment. I’ve made peace with this and have now shelved these plans to focus making the most of the treatment to give the best possible chance to future me.
My approach to treatment is to control what I can and accept and let go of what I can’t. Definitely a lot easier said than done, but it has the thing that has made this all much more doable for me.
Oh, and just to share a little news you may find encouraging while I’m here, my three tumours, which totalled 36mm, were confirmed by my oncologist to be no longer detectable on the breast MRI I had last week. I did have a single dose of EC at the end of April on my previous treatment plan and an ultrasound at the end of May showed significant tumour reduction, which my oncologist confirmed may suggest a potential early rapid response so this could have contributed and I’m by no means counting my chickens before they hatch, but this current achievement has certainly made all this feel worthwhile so far.
Wow that’s great news, that must be such a relief and so motivating to keep going with all this. Did you request the mri / scan or did you just get offered it as part of your review? I asked my oncologist if they would scan me part way through treatment to check how I was responding to treatment and she said no! She said they’d just wait until the end and do it pre surgery to inform what they do there, which I thought was a bit odd and not very motivating. Would be good to know as I might ask again! Mind you, I’m only 2 treatments in so need to find some patience! X
I’ve already had a lumpectomy to remove my original tumour and the cancer we’re treating now is an early local recurrence under the surgery scar. In my case it’s hard to tell based on a manual examination what is cancer and what is scar tissue hence the MRI to check for sure. I still have a lump at the outer edge of the scar and this has thankfully been confirmed as fibrosis.
Oh yes, patience can be so key in some things in this journey and it’s striking that balance on knowing what you need to act quickly on and what needs time. For me this has come with experience, an open mind and willingness to learn. x
Ah I see, gosh nothing’s straight forward is it, sorry you had local recurrence but so glad that you’ve now got a clear MRI and the rest of your treatment is for preventative measure. You got this.
My treatment is actually intended to be curative. I have further surgery to come but not sure as yet what exactly this will be then more cycles of immunotherapy after that. I’m not looking at being “done” until at least February if it all goes according to plan.
You’re right about things not being straightforward at times, but as you can see, sometimes those curveballs can be happy ones! x
I can completely relate to this! I feel exactly the same on my low days I think however am I going to do this?! We always go away in the 6 weeks holiday and I feel so guilty were all stuck at home with the exception of days out. We will get there but I do wonder what kind of person I’ll be at the end. Sending u lots of positivity xxxx
Thanks for checking in @daffodil10 and hope your second dose has been ok.
I was tired and generally under the weather the first half of the week but think I got off lightly in general- I still wanted meals. In fact, when I got hungry, I needed to eat immediately or I felt sick.
Have been really struggling with the emotion of it all and adjusting to a new reality- or rather expecting the new reality to get progressively worse.
As you say @mssteel, I’m trying to “control what I can and accept and let go of what I can’t” but I’m still working out what is and isn’t in my control. Movement, food, mood- so much seems contingent on circumstance, changing day to to day.
The other side feels a long way away but I already feel like a completely different person.
Same @leotee13, I’ve changed so much in such a short space of time. Getting used to that fluidity takes some doing and I’m still learning. I found it very uncomfortable at first but actually find it kind of freeing now!
Hello, I’ve been off grid for a while, so catching up on your updates.
Phase one 4x EC every 2 weeks has started and my reaction was not what I expected. I was so ill and vomiting for 24 after the infusion and just feel hungover since. Headache every morning seems to clear by midday with a a shower, so I can amuse the kids in the holidays and work for a few hours each day. The tiredness is now setting in but it’s been up and down.
Really not looking forward to the next infusion on 5th August. The NHS team here just suggested more of the same drugs for nausea which I’ll be raising with the oncologist as all the literature suggests trying different drugs!
I was also v sick on my first round, though from carboplatin.
Have just had 2nd round today and they’ve given me something called aprepitant to take home, which the nurse said is the gold standard in treating chemo sickness. It’s a lot more expensive which is why they don’t routinely prescribe it, but definitely ask for some stronger drugs when you speak to the oncologist or nurses. Good luck, sickness is so debilitating
It’s completely understandable that everything feels overwhelming. What you’re carrying is incredibly heavy, and it’s okay to say that it’s hard.
