Its been a while since I posted but I still want to keep in touch to see how you’re all doing. I finished my chemo 5 weeks ago and could not believe how tired I was towards the end and for a good few weeks afterwards, but am glad to see I am starting to feel more human again.
I do still have to inject myself every night with fragmin for blood clots - i’ve got another 2 months of doing that. My tummy looks like a bruised & lumpy pin cushion and it’s getting harder to find a space to inject that’s not battered n bruised. BUT you do well not to let your OH anywhere near. Mine was very keen to help out but I end up with more bruises cause he’s none too gentle.
I had my sore & swollen ribs looked at last week - nothing sinister happening and apparently all normal after a double mastectomy, so hopefully will ease in time.
Next week is my 1st meeting with oncologist since the end of chemo followed by my 1st bisphosphonates infusion. Feeling little nervous because it’s a new drug again, but can’t be as bad as chemo.
Thinking of you all - stay well.
Glad to hear you managed to give yourself the injections, that's encouraging. I think mine are supposed to increase the production of neutrophils through the bone marrow.
I was so useless this afternoon, that after I had posted my last message here, I decided to close my eyes for a few minutes - and woke up 90 minutes later! I felt much better after that unplanned nap
We're getting a female and male kitten, both beautiful little tabbies. Thanks for the tip about letting them out of the basket one at a time when we get home - I shall be on the alert! We all miss our old cat and are really looking forward to having the kittens. I agree that cats can be fantastic company, when they choose to. I have always found that they are particularly good at knowing instinctively, who needs a little cheering up and often used to encourage our cat to distract or comfort our children. Our daughter is sitting her A Levels this summer, so I think the kittens will have their work cut out to cheer her up and provide comfort when things get a bit tense.
I've got chemo/EC tomorrow - really not looking forward to the SEs and am assuming that I will be out of action for a week at least. I am feeling increasingly tired and less robust anyway, i.e. less able to cope with the SEs. Walked to the hospital for Picc Line and bloods today and felt completely shattered when I got home, and that's without having actually had any chemo yet. Spoke to one of the lovely chemo ward nurses today, who told me that increasing weakness/tiredness is very common and that I will need to rebuild my energy and strength slowly when all this is over. Can't wait!
Gaby, glad you had such a lovely time with the kittens yesterday! What have you chosen? I know dogs are good company,but cats can be too! (I'm trying to type this with Oscar making a fuss of me because I've been out for a few hours! ) One word of advice, don't let them both out of the cat basket at the same time! We did, but one of them had done a poo on the way home, so as you can imagine it went everywhere with them both running around!
I'll get in touch with Angela-if they haven't advertised it there should still be places! xx
We had a lovely time with the kittens yesterday - nothing like little furry balls rushing about and mewing to put a smile on teenage faces! We will be able to take them home in 3 weeks, so I'm getting ready for mayhem!
Pulapula: glad your surgery went well (I'm impressed you managed an evening out the following day, well done!) and fingers crossed for the results.
Jencat: I'm a nursery teacher (and manager). Your advice about a phased return and the potential for getting bumped by children is very sensible. We have babies and children up to the age of 4 at nursery and I will definitively need to consider energy levels and my physical strength when planning my return. I will probably just do 2-3 days, then gradually up it, though I will not be returning fulltime - I had already cut back my hours before cancer due to exhaustion/stress. About the Moving Forward course, do email Angela. I'm sure she can book you in for the June course at Guy's. Not sure why they haven't advertised it online yet.
Lisa: hope you enjoyed your walk. OH and I went to the park this morning. No interest at all from our two kids though our son did actually end up going there with his friends to play table tennis - going for a walk with your parents is "boring" and probably not very cool!
Hi Lisa, I'm an infant teacher and I'd planned to go back before the school broke up for the Summer holiday.It was either then or wait until the children went back in September. When I told the rads staff that I intended to go back in July, they did keep telling me that I might not be ready and they were right as I felt tired and also emotional after I finished treatment. I also had to be careful that the children didn't knock me, some of the Yr 2 children are boob level! If you work in an office, you might be ready to return earlier than me. Also I was 58 when I finished treatment, so quite a bit older than you, plus I don't know how many weeks of radiotherapy you're having, but I had six, so that might make a difference too xx
Ps Gaby, I'm a teacher and working part-time. When you do return make sure you go back on a Phased Return. I'd been off for 11mths when I went back in September, but didn't return properly until nearly half-term x
Gaby, thank you so much for the M F course details, I'd looked on the website and couldn't find it. They have got M F courses near me, but unfortunately they're either on a day I work or include school holidays and the one I could attend isn't until November and that seems too far away! It would be lovely to meet you too!
Are you a teacher btw?
Hope you had fun with the kittens yesterday! After our cat died we went to a Rescue Centre and got two kittens, a brother and sister. They're 4 years old now and have been great company when I didn't feel up to seeing people! Actually my daughter's think Oscar has got attachment issues, where I am he usually is too! xx
Lisa, I don't want to put a downer on your going back to work plans, but you might find you need/want a little longer after rads to recover-I finished mine in the middle of June last year and had intended to go back to work in July,but found I was too tired. Mind you, I think I'm older than you, so it could be an age thing and you'll be fine x
Pulapula, hope everything goes well when you start T on Thursday and you get good results from your surgery x
I've been pretty quiet on the forums, as I'm a bit deflated about my extended treatment.
My last surgery (10 Jan) was very short and went well and I even managed a night out on the 11th!. It was a school reunion so I hadn't seen most of the people for 28 years! I don't have a wig and went with my head fluff. Got lots of compliments for being brave etc etc.
I'm booked in to start 4 cycles of T on Thursday, which will take me through to the end of March/early April. Then I'll have rads after that. Hopefully I'll have the results from my last surgery this week too, if there is any remaining DCIS they're talking about a mastectomy after chemo, or losing the nipple...fingers crossed for the all-clear.
Hope you're all doing ok - it's been a bit quiet here lately
Lisa: How many radiotherapy sessions are you having? It is a bit of a pain having to travel so far every day. Will you be ok driving back on your own? I've been told that the main SE of rads is tiredness, though I don't know how quickly that kicks in. Do be careful driving - I sound like my mother !
I think that if and when I go back to work, it will definitively be part-time, at least to start with. I am slightly worried that a part-time return is not what my employer wants and I haven't spoken to them about it yet. Am delaying that conversation for a few more weeks/months, as I am really not sure about what i want to do. I won't be going back until September at any rate, i.e. start of the new school year. By then I should have more energy and be physically fit to return. It will be a bit of a shock to the system though. And I just hope that my brain will be a bit more switched on by then - at the moment I can't see myself multi-tasking and rushing around as I used to!
Have a good weekend everyone. We're off to see some little kittens this afternoon. Our lovely cat died last summer (in fact the day before I was diagnosed - that was a lovely week!) and we are keen to take in a couple of rescue kittens now. Should be fun!
They don't seem to have listed this course on the website yet, but here's the info I was emailed:
Venue: Guy's Hospital, Cancer Centre, Guy's Hospital, Great Maze Pond, London, SE1 9RT - Dimbleby Drop in Centre, Group Room 2.
Week 1: Tuesday, 4 June 2019
Week 2: Tuesday, 11 June 2019
Week 3: Tuesday, 18 June 2019
Week 4: Tuesday, 25 June 2019
Session Timings: 1:30pm to 4:45pm
The person I've been in touch with is called Angela and her email is firstname.lastname@example.org. Maybe just email her and ask if she can book you on to the course. It would be lovely to have someone else from our bit of the forum there and to meet you! Let me know how you get on.
Hi Gaby, is the M F course at Guy's a new date, I don't remember seeing it? Also is it am or pm? I'm in Kent and there is a couple of M F courses at my local hospital but they're on a Friday, a day I work x
Someone from Breast Cancer Care just emailed me with the details of the Moving Forward course beginning 4 June at Guy's - the details should also now be on this website, if anyone is interested. I've just booked myself on to that one, instead of in March. I should be done with everything by then, yipee!!!
I think we all have good and bad days. It's particularly hard, when I'm tired and/or feeling lousy, but I try to look forward and to think of all the rubbish we have to go through as part of my recovery. Having the children to chat to also helps - even if I'm low they will often help to distract me by just chatting away about their day/problems. Can't remember if you have any kids (sorry), but if not, then meeting up with friends, fresh air, exercise etc have all helped me (to a point ) The other thing that helped me was to book a holiday for the summer - something lovely to look forward to once all this is finished! If you're really low, it's worth talking to your BCN, as there is professional help available for us.
I have heard that once all the treatment is complete and we're discharged, things can actually get more difficult, so I have provisionally booked myself on to a "Moving Forward" course that Breast Cancer Care offers. However, the London one is in March, which is a bit early for me and I am hoping that they might put on one in the summer. This course apparently deals with everything, including diet, exercise and, perhaps most importantly, our mental health post-treatment. One of my biggest headaches, and one which I am currently trying not to think about too much, is whether and when I return to work. Hopefully, talking to other people on that course might help me a bit in making my decision.
Hi Aley / Little Pixie,
Looking in the mirror is not always easy at the moment, I agree. I've also put on weight over the past few months (not to mention Christmas), plus I've got virtually no hair, stubbles instead of eye lashes, thinning eye brows, and despite extra daytime naps - dark rings under my eyes. Just lovely The other day I came across a photo of myself on holiday a couple of years ago: I had beautiful, long hair and looked "normal", hey-ho. I try to tell myself that it's only for a few more weeks and then hopefully my hair will start to grow back and I can try to rebuild the old me, if that's possible, although I've still got surgery and rads to contend with. I suppose in some ways there will always be the "me" pre- and post cancer. It's not going to be a worse version of myself or my life (I hope ), but a different one it certainly will be.
I treated myself to a facial today and rather weirdly my skin is actually better than it was pre-cancer. Either my skin likes the chemo (?????) or it's the lack of work-related stress.
Little Pixie: I'm sorry your treatment has been postponed. It's so frustrating when that happens, but I suppose it's better they don't give us chemo if our bodies aren't up to it.
Pulapula: Hope everything went well today
Take care, everyone.
Pulapula I am so sorry to hear your news. That’s just awful after everything you’ve already been through and you have every right to feel sorry for yourself. Best wishes for your surgery on Friday. Sending lots of love ❤️
Well, I wasn't expecting the results I got today! And not in a good way....Turns out I also have pre-cancerous cells (DCIS) which didn't show up on scans previously. So I am booked in for more surgery this Friday. Hopefully I can keep my nipple but I might loose it depending how widespread the cells are...I was also very happy with the cosmetic results from my surgery on 21 Dec so it's disappointing. Oh well, another scar to add to my collection. I'm also now a bit worried that these things can avoid detection - apparently it's because my breast tissue is very dense...
And I am also back with my oncologist next Friday to start chemo again - 4 x T cycles this time, so that takes me through to early April. And then I'll have a course of rads too :-(. Feeling sorry for myself - can you tell...
My main achievement today was to walk to the bus, get on the right one , collapse into the chair in the chemo ward and, after a visit to my oncologist, get home again, slowly! Then lunch and a nap - lovely
My oncologist told me that I should have surgery within 4-6 weeks of finishing chemo, which is great - can't wait to get the rest of that bugger out of my system! Rads apparently start after a similar gap, but I may need 3-5 weeks of daily doses, depending on what they find during surgery. And for those treatments I will need to go in to Guy's every day! Well, at least I know what I will be doing in April/May, how exciting NOT. Still, it will probably feel like a walk in the park compared with chemo.
Pulapula: I'm so pleased that you are recovering well from surgery and hopefully you won't need to have any more chemo now.
CarGarland: I agree, one way or another you need to know, so be brave and do the test.
The last few days have been a bit rubbish, hence my silence. The EC last Wednesday proved rather tough - I've not been sick, but have felt very weak (very wobbly legs and feeble hands) and have not been able to do anything much at all. Brain fog seems to be clearing a bit today and I have been able to make a few useful phonecalls, read a book, empty the bins and a few other equally exciting things.Am seeing my oncologist tomorrow and will ask for some general blood tests, just so I can check there aren't any supplements etc I could take to ease me through this a little.
Those of you who are now mowing on to surgery and/or radiotherapy: how long is the gap between the end of chemo and the start of the next lot of lovely treatments? My oncologist originally told me I'd have to wait 6 weeks before having surgery and then another 6 weeks after that for radiotherapy, but from what I can see on the forum, the timespan seems to vary quite significantly, depending on hospital etc.
Jacqs: I hope they managed to sort out that swelling for you. I do find that every chemo session seems to throw up another unexpected/unpleasant SE And yeah, sod the exercise - it's an achievement for me at the moment to get up and down the stairs to the loo!
Hope everyone is having a reasonable start to this week.
Hi Keeno72 - congratulations on your last T 🎉🎉🎉. It’s a great feeling even if you do still have to suffer SE’s. It can only get better now.
I came down with a cold on Christmas Eve just a few days after my last session and it’s only just getting better now.
I’ve got another worrying thing happening. I was experiencing some aching in my rib cage whilst having chemo. Discussed with onc but she said to leave it & hopefully it would ease. I’ve now got a swelling on my left hand rib cage just underneath where my left breast surgery was. Am waiting for bc nurse to call me back today to see if someone can check it out. 🙁
Thanks for the tips on hair growth - just googled the Grow Gorgeous serum & am going to try it out. Would be great to see real hair instead of candy floss style fluff.
Gaby - hope you’re feeling brighter today. Daily Pilates sounds very ambitious - some days, rest is needed & sod the exercise 🤪.
Hope everyone one else is doing well. Xxx
Did I say daily Pilates? What a load of rubbish! Defintiively not doing any today, as I had a bit of a rough evening and night. For the first time I actually felt sick last night and went to bed feeling very ropey. Had loads of hot flushes in the night, but still managed to get some sleep. Am feeling a bit wobbly this morning, so Pilates is off! Also noticed that some of my finger nails have started to go slightly yellow I really can't wait for all this bloddy chemo to be over...
Hope you all have a reasonable day.
Happy New Year everyone! We're all slowly reaching the end of this rather lousy road and 2019 should gradually turn into a much happier year for all of us.
We also had a nice, relatively quiet Christmas. Loads of food (I had to be weighed today, as it was chemo day - oh dear!), lots of chatting with family and too little movement, so pretty much just the usual
I have two EC sessions left, but as I have a 3-week gap between each, I won't finish chemo until 13 Feb. Then I get 6 weeks "off" before surgery and eventually radiotherapy. Should all be done by mid/late May. Roll on the summer!
Am feeling very dopey right now after chemo, but am trying not to go to sleep, as that tends to mess up my night. As for eye lashes, mine look like they might be trying to regrow, but I suppose the EC session today will stop that pretty quickly How lovely, Jacqs, that your hair is starting to regrow, even it's a bit flimsy. I'm sure it will take a bit of time for our hair to regain strength - maybe ask your hairdresser about shaving it again, or check the other treads to see if anyone has posted anything useful on this?
Aley, I really hope you're starting to feel a bit better.
MamaTony, good luck with the surgery - I'll be thinking of you. It will definitively be a good feeling to get rid of whatever is left of that blasted tumour. And you get a flat tummy as well - I'm jealous! My surgery will apparently be very minor, basically just scraping out dead cancer cells. No tummy tuck on offer so I am starting a new regime of daily Pilates to get that under control, or at least, that's the aim. Let's see whether I stick to this!
Lots of love to you all
Happy New Year to all you lovely ladies. I hope it finds us all on our way to better health and a positive & fresh new start.
We’ve had a very quiet and relaxing week recharging batteries. Now just waiting for my appointment for surgery to have my rejected implant re-done.
Mama Tony - like you there’s no signs of eyebrow or eyelash regrow. My hair however is starting to grow, although it’s more like white fluff! Not sure if best option would be to shave it off again & see if it comes through any thicker? Any suggestions welcome.
WOOHOO! Last chemo session completed🍾🍾🍾🎉🎉🎉
Although only just. Had bloods taken on Tue & they called yesterday to say neutrophils were low again ( as per last week) & asked if I was happy to postpone. I said no & asked if I could have them re-done today. After having them done, ward sister confessed she made a mistake yesterday & they had been fine all along. Anyway, was so happy 😁 did not complain.
I also got got the results to my BRACA testing last night. NEGATIVE! So despite the fact that I have a strong family history of bc, looks like i’m just unlucky. I need to do more research to find out if other members of the family could still have faulty genes though!
Bee & Millie - congratulations to you both too 🎉🎉🎉
Mama Tony - congratulations on your last chemo too 🎉🎉🎉. Sorry to hear your tumour growth has slowed. We’ll all be hoping & praying that it turns out to be scar tissue. Will be thinking of you on 16th Jan ❤️❤️
A Little Pixie - i’m so happy that you’re coping better with the weekly. 4 weeks will fly ❤️❤️
Kath - again you’ll be there in no time. For me, the weekly sessions seemed to go so quickly. Possibly because I didn’t have the more extreme SE’s that you get with 3 weekly FEC etc. ❤️❤️
Sending you all big hugs xxx