Help please...

Hey,

As others have said so well - we are all floored at diagnosis and when in the waiting game arena - slowly things settle as you have more information and when you begin your treatment. I had EC first and was ok on it - bit spaced out at times but really ok. I’m now on Paclitaxel (weekly). Its a pain going every week but I have been ok on it.

Where can you get some support? Is there a Maggies Centre attached to your treatment hospital - if so fantastic and I would highly recommend you make a visit.

Be kind to yourself and give yourself treats.

We are always here,

Jan x

Hi RJK,

So sorry to hear about your diagnosis & that you’re finding things hard. I’m one year on following a mastectomy with node clearance, 4 x EC, 12 x Paclitaxel, RT & now long term drug therapy & only just feel able to post on here. You have done the brave thing & reached out - I struggled & sort of went through the year in a bit of a bubble. 
I totally get the ‘running away’ thing - I think I sat, in my bubble, at most appointments plotting an escape route! But I stayed (just the plotting made me feel like I had a choice; bit screwy, but hey!) & I’m here coming out the other side wishing nobody else has to feel so rubbish.

I, too, felt like everyone else was so strong & pragmatic whereas I just felt so very sad & tired. I remember telling a friend that I always thought I’d know what it meant to ‘fight’ something like this having seen friends go through it, but now it was me, I didn’t have a clue. I also felt like I would never be ‘me’ again.
She gave me wise, strong words. She said that ‘fighting’ was turning up to every appointment, doing everything the experts told me to do & hanging in there, every day. She also said that if I never got over these feelings, I would learn to walk alongside them. 

And here I am, one year on, waxing lyrical! Still sad, tired & scared at times, but mostly amazed that it’s been a year & I did do it (not always very gracefully, mostly quite tearfully). I went camping a month after mastectomy, made it to every concert that my children played in, attended my son’s performance dissertation last week & held back the tears when he dedicated ‘Misty’ to me. And 7mths after my hair went awol I have enough growing back that people think I’ve chosen a really cool cut (lol…never been cool in my life)..  

So, hang in there. Listen to all the kind, strong support that is offered on here & just take one day at a time (sometimes just half a day at a time).

Sending much kind support,

Jo

Oh Jo (and everyone else) thank you so much for your kind words and encouragement. I'm all weepy again (pretty much permanent state at the moment tbh) but in a better way having read your messages.

I have made a career working with children and families experiencing all sorts of trauma but when it's your own, it feels like a whole different ball game and one that I have zero frame of reference about how to navigate. I managed first round of chemo (not very gracefully and very tearfully) but I did it. Next one is on Friday and I'm firmly back in the not sleeping, anxious zone. My hair has starred shedding so much it sucks and I'm so so sad but I'm trying to relinquish my need for control as the stress and upset doesn't change anything, but man it's hard!

I'm most gutted about the weekly treatment as its going to be right over the summer holidays. I don't want my 12 year olds' memories to be of me being sick and being stuck in the house with me thinking he can't have his friends over or that he can't be himself and needs to tiptoe round me. 

I hope in time I can do what you guys are doing and offer someone else going through this s**t show some words of encouragement to pay it forward. 

Big hugs to all xx R

Hi rjk

Having read you post and responses, I hear you and its ok to feel like you are. Im sure we have all been there, i am 2 weeks post chemo and im still there, remember this is a moment in time and we all do what we do to get through it day by day, i know there is nothing worse than receiving your diagnosis then waitimg for scan results etc. But if your anything like me i felt as though i lost control i had no choice but to have to have faith in the experts doing what they do and formulating a plan. There will be shit times ahead, chemo is tough i had 3 x 3 wkly cycles of EC and 9 x wkly cycles of paclitaxel. EC or the red devil as its known was tough for sure and it make me feel pants for 7-10 days then just as i got back to the new normal it was time for another one. Paclitaxel was easier at first as its a lower dose and tolerated better by the body but was tough for different reasons being wkly it went quickly but i think the accumalation effects caught up with me.  Personally i have taken alot away from the support groups on here who can appreciate what we are going through. #weallcandothis. Hope it goes well for you xx

Hi RJK and all the other lovelies who have posted here! I'm only down for 12 paclitaxels (plus herceptin injections for a year & pills for ever &ever) and was beginning to feel I had the wrong meds as no-one else seems to have my combination! Daft! I think because of that, I haven't been brave enough to join a chemo starters group but have found such wise words & care on this thread, I too am feeling a bit weepy.

I find the whole thing about 'being brave' difficult to answer when friends say it - I feel I'm plodding through trying to be chirpy & not moan and they don't see the tears which I can usually keep private - doesn't feel at all brave from in here!!

I must say, I'm finding the weekly paclitaxel treatment do-able as it's now become my new way of life: weirdly I like going for treatment as the nurses do all the thinking and worrying, they deal with the reactions super-fast, I see others who are a bit further on & each visit gets me closer to the finish line ... and I'm channelling Freddie Mercury 'Another one bites the dust!' when I walk in. I go to my dr surgery for the blood test so it's closer and quicker but same day bloods sounds good if you can organize it at hosp.

I'm finding I can do a fair amount while on the pac chemo so maybe don't worry too much about your son's summer hols - some days Im tired and sleepy so I go very slowly. There have been other cruddy reactions to deal with but nothing that's stopped me - have had both aged parents either permanently in/ convalescing from hospital for last 3 months & they're an hour's drive away but have managed to support them really well - it's wearying so I tend to not do much between visits/ sleepovers but the reactions will finish after chemo which is the thought that keeps me going. You will just have a different summer to your usual one and have plenty of time to plan visits/ friends to see. It won't necessarily be worse, just different and memorable but hopefully not all for the wrong reasons. Best of luck with treatment 2 & sorry I wrote too much! Xx

Hi RJK,

At your stage in this really pants journey I could barely talk about what was happening, & if I even started the weepy stuff just took over. I consider myself a bit of a talker, usually like to see the funny side of stuff & a good old cry seems to sort things. Not with this one! The tears just kept coming, no control whatsoever, & certainly weren’t the wonderful restorative kind. & as for my sense of humour…totally none existent. It took months to start seeing anything funny about this. All my chat now is in retrospect (& after a few counselling sessions with the kindest ‘voice’ (we’ve never met) because every day was spent wondering if it was the next thing that would ‘get me’. So you’re doing brilliantly by sharing on here.

The hair thing was a big deal, but a surprisingly short (lol) deal. I cold capped for the first EC cocktail party but three days before round 2, had hair at breakfast, went for a shower &, tada, left small koala sitting in the corner laughing at what was a seriously unfunny joke. I cried…a lot. Then it stopped & I wondered if what was left would ‘do the job’ but two days later off it went (literally) again. More tears then decided it was too much & braved the clippers over the bath. Strangely felt so much better - decision had been made so I knew how the hair thing was going to be & all the indecisive stuff about whether to cold cap or not was decided for me. My lovely youngest son sorted my dodgy clippered hairline & dealt beautifully with his weepy mum. I always knew I wasn’t going down the wig route, so various soft beanies came into play. 
I totally agree with BinkyinBed about how your summer is going to be. I hit a major low on the third EC & all the nurses, the oncologist & a fellow patient told me to just hang in there as Paclitaxel would be so much easier. They were so right. There’s still side effects but much less impactful, more gradual & def more doable. My sons are a bit older so I get it’s different but  kids seem to roll with this after the initial horrible uncertain bit. I remember feeling really guilty & apologising a lot that I was going to ruin stuff because I was going to be ill for a while. I told them the most important thing to me was that they carried on doing their thing as normally as poss & that I wanted to try to be my normal mumself as much as poss. They’ve been great, never embarrassed, supported me when I’ve felt vulnerable out & about & just carried on including me in their busy lives. So lucky.
Sorry for being so wordy again, but you’ve got this & it’s all so gradual that your son will take one sunny day at a time with you.

xx

Also, meant to say, hope round two goes well for you.

xx

Hi BinkyinBed we are on exactly the same treatment have a read of my profile. x I recently finished chemo/ radiotherapy. 

Rjk, I’m the other way round, 12 paclitaxol with carbo/pembro also every 3 weeks. I understand when the 12 weeks are up I change to ec (but not weekly). To be honest I have found it fine so far and other than a bit of constipation no side effects so far (just had my 4th round today, so thats the second lot of 3), for the weekly paclitaxel I am only there about an hour and a half and I have now fallen into a routine. My tip is to make sure you drink plenty of water before and while there, I took my drip so many times to the loo that I asked the nurse to show me how to unplug it so I wasn’t bothering them every half hour. I do think its helping manage the side effects for me.x

Thanks addabitofsparkle - good to read your journey - so helpful, thank you for mentioning. Love your positivity and calm .. good luck with the next bit of the journeeee. x