hello everyone,
I am 15 months post diagnosis, have had 3 FEC, 3 Tax, 25 rads, 13 of 18 Herceptin and am on Tamoxifen! Whew!
When diagnosed I had a 13mm grade 2 lump with DCIS and 4 positive lymph nodes. This triggered scans. My lung scan showed I had a 5mm nodule. My team didnt think it was typical of a secondary but they didnt really know, I was recommended to have it repeated after 6 months. However, they forgot and I didnt remind them, Im a coward really. So now I am having this scan in 2 weeks time. I would say that so far Ive been a coper, I am surprised at my ability to push bad thoughts away, i have hardly had any really bad days, lucky me, This past few days though I feel worse than I have ever felt. Im tired of it all now, I feel really tearful and sorry for myself, theres noone I can talk to as I get worried about other people being worried about me, how soft is that! Its just that I dont know what Id do if this proved to be something significant, I think the floodgates might just open and that frightens me so much.
Know theres lots of people in the same boat and worse boats, I am really very sorry for that. At least here I can voice my concerns and stop bottling it all being so bloody “brave”!
Polly x
Hi Polly
I’m sorry that you’re having a rough time with this right now. You’ve had an impressive amount of treatment in such a short space of time and it can’t help matters if you’re worrying about other people’s worries, but this is certainly the place where you can vent. I don’t think I can be much help to you as I’m relatively new to all this - dx in March 08 with primary and liver & lung mets - but I’m sure there are plenty of women here who will offer sound advice. What I do know is that a nodule doesn’t have to be malignant and there are many perfectly adequate explanations for them. I also am inclined to think that it’s better to have CT scan so that IF there is anything dodgy then its known about and can be dealt with.
I hate it when people talk about being positive and it riles me to be described as “brave” because I haven’t willingly chosen this. If I were going to try and climb Everest or go and do voluntary work in the Congo and knowingly put my life at risk, then I think that’s brave. But the thing that had most amazed me is how quickly we adapt to all the crapola that is thrown at us and how we digest it, adjust to it and put a different spin on things as a coping mechanism. Admittedly this isn’t a process that happens overnight. But I loved the post earlier about the three hairs and it really rung true. You have done amazingly well throughout all your treatment Polly and of course you feel tired of it all. You’ve gone through so much and then it’s like being sent back to GO and start testing and waiting again. Grrrr!
I’m not going to tell you not to worry cos I know how infuriating that is, but let it all out and I’m sure these lovely ladies will help get you through this time and will share some positive stories with you.
Much love & hugs
xxx
Ripley,
Thanks for that, it doesnt help that Im living in Portugal sort of half of the time so when Im here I miss all my support network. They really keep me going or come to think of it maybe I keep them going! Youre so right about being “brave”, I dont think we have any choice about how we cope, its the luck of the draw. My mum went through terrible times in her life, and she dealt with it all, but it still takes its toll on her. Im sorry youve had to face so much in such a short space of time, what a shock it must have been for you. Have you started treatment yet? xxxx
I’d like to be in Portugal right now eating some of those yellow lupin seeds they serve with beer and scoffing some pasteis de nata - mmmm. What are you doing out there? I can imagine it must be harder to get the support whilst you’re away from home, but if you’re supporting them it might be a welcome break! My closest friend lives in Spain in the middle of nowhere in a decrepit farmhouse which was unlived in for 40 years and has no roof. Obviously I have no intention of visiting her until she makes it a bit more habitable (especially the bathroom) but she is coming over next month to stay, so that will be good. Is there any kind of support for you in Portugal? Is your Portuguese any good? I guess we should be thankful we have internet, web & text otherwise we’d have been so isolated twenty years ago.
I am having my third chemo tomorrow (TCH - Taxotere, Carboplatin & Herceptin) and am being productive here today (must be the steroids!). When I stop and think about it I can’t believe that on 5 March my world imploded and I thought that I would rather be dead. I started chemo the week after, on week 2 was admitted with neutopenic sepsis for a six day hospital “spa” break, have shaved my hair off (and it still seems to be growing - hmmm, perhaps I was too hasty) and my half-way mark chemo is upon me already. A quick digression - I have just received Lance Armstrong’s inspirational stories in the post, with a jar of homemade marmalade. Interesting choice of reading as I am not aware of having testicles (yet!), but anyway… So, yes, I am surpised when I find myself laughing and still finding pleasure in silly things like experimenting with heavy eyeshadow or finding 100 ways of tying a long scarf (turbans are my fave look). Perhaps you could try BCC’s Peer Support service - I have found it really helpful to speak to a volunteer with a similar dx who calls me at regular intervals to see how I’m doing. I’ve seen a counsellor at my GP’s a few times but it’s hard to co-ordinate his availability around the chemo three weekly existance. But it’s great to hav someone you can say things to that you know would freak your family and friends out. It’s the same with the peer support - you don’t have to hold back.
My current crisis is not bc related, thankfully - I am waiting for a sofa to be delivered and am petrified it won’t fit through the door. I forgot to measure before I ordered it (was on a steroid shopping frenzy) and then the chemo brain kicked in and I kept forgetting to measure it, until last night. Infact I had a bit of a surprise cos I checked the order and it’s a 3 seater and I thought it was 2.5. This is going to be fun!
xxx
Hi Ripley,
yes the pasteis de nata are gorgeous arent they! It should have been a good day really, our van was actually ready having been in the garage for 4 weeks and I had a lovely milky coffee (galao) and buttery toast (torrada) for breakfast in a local cafe. We too live in the middle of nowhere and our house had no roof when we first bought it! Now its habitable and we just need the sun to come out a bit more!
Your message made me smile, some of the lovely posts people write put me to shame, I just feel so uneloquent if thats even a word, think the chemo has frazzled my brain! Must say your chemo sounds immense, hope its not going too badly. My friends daughter had carboplatin for a brain tumour and I believe its very good, cant believe Ive written that, it sounds like Im describing a film rather than chemotherapy.
Im usually such a bright and breezy person, I have suffered depression in the past though and dont want to go down that road again ever. Im going to see how I feel tomorrow and if I still feel down I will phone the peer support service as I do feel I need someone to talk to who Im not going to worry about afterwards.
Hope the settee gets in!!
Thanks for your support
Polly xx
Hi Polly
I am not surprised that you feel low - you have had so much to put up with. I think we all feel terribly low during our lives, never mind having to contend with breast cancer. I think it is worse if you are normally upbeat because everyone expects you to remain like that and it is simply not possible to keep up the appearance all the time. You say your mum managed to cope but it took its toll as it does with us all. Also, please don’t panic about depression emerging again. If you have had depression before, you will know the warning signs and get help before it got to the stage it did before, so it never hits as bad the next time round as the first time - does that make sense? Also, you have already come out the other side of depression, so you know it is curable. Be kind to yourself.
Hi Polly
My sofa fits! So now I am going to throw myself on it and plump up the cushions. Will post in a few days or so to see how you’re doing (depending on chemo effects). And Cathy59 is right about the depression being treatable.
xxx
Hi Polly
Just to say I know what you are going through. Sounds like you have are having the treatment lined up for me. I was diagnosed with grade 2 lobular 5cm and 2cm tumours HER2 pos & oestrogen pos with positive lymph nodes. Like you say scans of everything were then ordered an ultrasound showed something suspicious on liver which then triggered a CT. That was last week. I was told CT couldnt identify any disease on liver. But they could say what the something suspicious was. The CT has now shown something on spine I believe and they now want an MRI. I am a coward too. As I feel well I really do not want to know anymore. Just take treatment and hope!
When I thought I had liver problem I couldnt handle it at all. Blew a load of money on credit card & ate everything I loved. What the heck I thought! Now I have bills to pay and put on the half stone I originally lost through the stress of having bc.
Hopefully your scan will be good news too. As far as I can see they are scan mad. And one leads to another. Others think it is good to have all these scans. We are all different. Some want to know everything I do not. At least not if it doesnt effect my treatment plan anyway.
There are loads of people on here experiencing every type of bc and able to offer great support.
Starfish x
Hi Starfish and Cathy, Ripley,
Thanks for taking time out to reply to me. Sorry Ive only just replied but just not felt up to it. Feeling tearful a lot today but felt better yesterday, so maybe good days and bad days. I dont know whether its the worry of the scans or not because Im also trying to settle in another country and since I went home a couple of weeks ago am finding it difficult to settle. Also just taken in a poor malnourished puppy belonging to our neighbours, Im so upset about it and couldnt sleep last night worrying about it, its such a huge responsibility and I dont think Im up to it! My 8 year old daughter is thrilled though as she is the only one at home and she has been really looking forward to having a dog, hey ho, will no doubt soon be used to it!
Starfish I know exactly what you mean about the scans and I purposefully forgot to remind my team that I was supposed to have a 6 monthly check as I just couldnt bear all the buildup and waiting. It made no difference to my treatment they said so I thought well why bother finding out. However, feel Ive put it off long enough and as Im nearing the end of treatment would like to be able to draw a line, however, feint, under BC for now.
Take care everyone,
Polly xx