Totally understand, Rosie. All the time, there is an internal voice telling me I’ve got cancer and going through this horrendous treatment - and then when you look in the mirror, there’s the reminder. I’m hoping that voice calms over time but we are still in the eye of the storm at the moment.
You are nearly there on the chemo front, so that’s a huge achievement. I had a single mastectomy in September and was scared stiff about it, but it was ok.
The district nurse has told me all the way through it that the mental side is harder than the the physical and I think there is a lot of truth in that. It’s like being hit by a bus.
I had four counselling sessions through MacMillan early on and that did help a bit. But it is a lot of absorb.
Thank you!! Yes the last one one uncomfortable i was squirming in my seat for 10 mins while it settled but ive kept going cause ive heard its good for the regrowth. Im not sure how long it takes after the last one to start growing ? Xx
Really appreciate the responses. So comforting and reassuring when you guys validate my madness and experiences. And that link is super helpful! Thank you!! I was thinking that I might go to Maggie’s at some stage to check it out, but there is a weird part of me that feels like it’s not for me. Like I’m a fraud. Maybe because it’s ‘treatable’? Who knows! Another madness. But def think at some point I need to address the fact of having cancer and not just the fact of the treatment. We all do I think.
On another more trivial note - has anyone got any tips on short circuiting the cycle of massive crusty scab forming in my nose-unable to not pick said scab-bleeding nose and open sore-massive crusty scab again? Woken up every morning the same for last ten days or so and carry on through the day the same. I just cannot leave that scab alone as it’s so big! I’ve been putting sudocreme in my nose every night, but maybe that’s drying it out and not the right thing??
@shelbylou81 what amazing news about your daughter !! You must be do proud and what an exciting adventure x If you aren’t sure about wigs how about some pretty headscarf’s ?
@rfg I totally understand what you are saying about being dismissed , one particular oncologist I occasionally see has left me feeling less reassured than before I saw him, I was worried I was booked in to see him on Friday but thank god I wasn’t … some HCP’s seem to forget they aren’t dealing with “cases” but human beings … you want the reassurance from your consultant that the decisions being. Made are the right ones.
I have the horrible crusty nose too, I have a sinus rinse which really helps
@couchpotato steroids can affect your mental health , when my dad had lung cancer his consultant reduced dads steroids as dad would give almost hysterical on the phone to them . Totally unheard of for my dad … he was always very calm and controlled but steroids had him crying his eyes out
@flojo Im glad you are starting to feel a bit better … I’m still feeling pretty floored too … I’m still very bald , plus my eyelashes all fell out at the weekend and the rest of my eyebrows !
2nd April seems a long way away … have they given you any explanation ?
… @stevie-puggle Something I’ve realised is . We all react and cope differently with chemo- at the end of the day I feel obliterated by chemo
and beat myself up that I wasn’t out power walking every day etc . The side effects from my last cycle were nasty … don’t be too hard on yourself and just rest when side effects hit hard
@shannon27 Im glad to hear you are starting to feel better after your last cycle … you will feel well again … you will have to give yourself time to recover from the treatment x
@flower5 My neuropathy feels like I’ve trapped my fingers in the door , same with my toes and weirdly only affects one side
@flojo I’m glad to hear you are starting to feel a bit better - the sun certainly helps I think
April 2nd seems a long way away , have they offered an explanation as to why it’s a month away ?
I saw my oncologist registrar on Friday , thankfully not the other consultant who should have retired ! She’s concerned about the ongoing reactions I’m having to the herceptin , she’s going to talk to my consultant and see if giving it by infusion might make a difference and then if I still react afterwards … she said I’ll either stop it there or definitely be stopping on the 6 month mark … I’m not happy but I’m definitely not tolerating the herceptin
@shannon27 -Oh that’s good - one more to go and the mini break will do you the world of good x I’m quite envious as we can’t go on holiday for a long time now as husband starts a new job on the 1st April so can’t take holiday for af long time and we can’t go away before hand as I’ve a school age child … we really need a break too and I’m disappointed that we can’t go away in the summer now but our business has suffered from me not working.
I had my. Last chemo four weeks ago but am still having Herceptin every three weeks , it comes with side effects for me and also Herceptin can damage the heart so regular heart scans are given . I’m basically allergic to it so. Rather than a five min jab , bloods every few weeks etc… I’m pre meds via a cannula and now told herceptin will be by infusion too so I still need pre treatment bloods and a follow up after every treatment … but they are stopping it at nine infusions rather than 18 dye. To me being allergic to it .
Aw when you do get your wee break it will feel amazing, ive not got any dates for surgery just had to roughly guess and boked somethjng for 3 weeks post last chemo as it may be 4-6weeks after last cheno for surgery. Im trying not to think aboutvit to mich as im doing a dmx with diep flap reconstruction.
Aw did you have reactions during chemo on it ? Or was that the phesgo and herceptin jags xx
@shannon27 You get either herceptin or phesgo … I’m not sure what the criteria is for the choice though …possibly phesgo is used when there is lymph node involvement… but it’s just a guess x
The first injection I had before chemo , I reacted, so I’ve had pre meds ever since … I also have a hideous rash everywhere like measles afterwards
I think it’s a good idea to have a break before the surgery … I suspect they like to give you a few weeks to recover after chemo . I had surgery first back in September and chemo was started 7 weeks later . Before surgery I went away on some mini breaks and then squeezed in going to see Kasabian before my chemo !
I’m envious of those if you having DIEP reconstruction as sadly my hospital don’t offer it and I was refused an implant as I’d only just given up smoking … so ended up with single mx with no reconstruction…
I recommend getting a good front opening bra for post surgery and also a v shaped pillow for sleeping afterwards as they like you to sleep upright and on your back for a while. A couple of little cushions for under each arm too if you having a double mx … x
No reason for the length of time, but the nurse was going to query it for me. The timetable she sent me suggested treatment starts four weeks after the initial consultation so that’s still eight weeks away and ten weeks plus since chemo ended - really hoping it won’t be so long.
That’s a bummer about the Herceptin. Is there anything else they can give you instead if you can’t carry on with it? X
Not sure if it’s been posted already but this article by Dr Peter Harvey ‘When the treatment finishes… what next? is a brilliant read for anyone near the end.
Also the BCN moving forward course, can be face to face or online
Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.
MacMillan and Maggie’s do their own version of moving forward. Also don’t forget you may want counselling also available at both of these charities.
Hi there November team, it feels relentless all this stuff at times eh?
I’m just checking in and cautiously optimistic that tomorrow I’ll have my final chemo. (#16, EC). It’s been a long haul as I ha three operations before starting chemo. I’ll have a few weeks before starting letrozole and time to get my teeth fixed before having the osteoporosis infusions.
I feel like I’ve been parachuted out of an airplane and have to work out where I am and what I’m doing. I’ll be starting work again in May but part time to begin with.
I asked my oncologist about whether a reduced dose would affect efficacy. I’ve had to have a reduction due to liver issues and throwing up! She said that they tend to start with a one size fits all and then adjust to what people can tolerate. She didn’t view it would affect how well it works. Fingers crossed.
I have a LgFB course booked on the 20th and am hoping to be able to make some sense of this unwanted extreme makeover. Then I’ll look at going to the moving forward course.
Good luck for tomorrow! The chemo nurse said to me that lots of people worry about the reduced dose, but it is ok and doesn’t affect your overall outlook, so hopefully that is the case.
I’m nearly three weeks since my last round, with Letrozole starting this Friday and radiotherapy next month. It’s started to hit me a bit this week and trying to work out what life is all about now. I feel a bit overwhelmed by everything and a bit scared. I think it is just going to take time. But I certainly don’t feel like the same person or want the same things out of life any more. I’ve worked through treatment and am seriously contemplating how much longer I want to do my job. So it’s given me the kick up the backside I needed in that respect.
Fingers crossed for tomorrow - and that the side effects are not too bad. Let us know how you get on! xx
Just howled my eyes out to the breast cancer now ad on the telly. Really well done and I hope will spread awareness to people about the sorts of things they say.
I had chemo on a reduced dose from the start due to allergies and family history of heart disease, then another reduction after and allergic attack to the chemo on week 3 and a final reduction after week 8 after being hospitalised for a temperature and unknown infection. With the allergic attack happening within 20 minutes they stopped the drip and didn’t continue as I was in a satellite unit with no doctor cover.
I was told by a professor oncologist that they would love to give everyone a bespoke dose of chemo to kill the cancer and reduce side effects but they are not there yet. So everyone gets a standard dose and like mine can be reduced to overcome side effects. I was informed that the chemo would still be effective.
Best wishes for your final chemo tomorrow. You have done great. Be kind to yourself and take time to recover, your body has been hit by some strong medication.
The LGFB courses and Moving Forward were both wonderful. I hope you get as much out of them as I did.
unfortunately I didn’t get round 6 done on Tuesday, they were concerned about the side effects on my digestive system, so after waiting in the chemo unit for an hour for a doctor to appear, they sent me to A&E where I waited 6 hours for somebody to stick a finger up my bum and proclaim that it was okay to continue with the chemo as planned worst of all was that after 6 chemo sessions where I never even opened the book I took along I decided to not bring a book
So now I am waiting to hear what happens next. The digestive issues are apparently also down to the steroids. Really really hate the stuff
That’s not good @couchpotato . I’m sat here with my overnight oats with a 1/3 can of prunes in to help me deal with a massive dose of anti emetics. Dates and figs to snack on during the day
Did my last chemo yesterday. 16 done. Now a few weeks off before I start the letrozole and get on with the osteoporosis infusions.
so looking forward to that.
worst of all was that after 6 chemo sessions where I never even opened the book I took along I decided to not bring a book 
