Thanks for your messages RosieRo, Worcester Warrior and See See. Hope you all have a great Christmas as well. XXX
Old Dawn that is really fantastic news and has made my day brighter!!!
This is the kind of news that a lot of people are hoping for and makes all this treatment seem justifiable. The medical team must have been delighted for you and your family must be thrilled.
I am on day 12 of Cycle 5 T. I have got over the worst now and expect to feel a bit better every day for the next 9 days. I have had fingertips and hands giving me bother on cycle 4 and this one. It gets worse about day 5 and eases off bit by bit. I feel as though I have been scrubbing floors. My hands feel swollen and tender (they are not swollen) and I can’t even touch hot water or anything hot. Everyone says its a normal SE and to take Paracetamol. My heels are sore so I wear trainers - can’t stick boots or shoes. Some have told me your big toenails may fall off and the skin on the soles of your feet may peel off but it is not sore!!! I don’t think this will happen to me.
So don’t worry it is normal and will ease off.
I asked my Consultant should I reduce the Docetaxyl to 80% and she said if the soreness had eased off by the end of each cycle then no.
Also …i got codeine this time for the aches and pains and it worked brilliantly. I recommend it. Only thing is that it causes constipation so I only took it for 24 hours for the worst day.
For those of you on the same time scale as me…I consider this to be my last cycle. Cycle 6 on Jan 3rd is the last one really but I am going to drink prosecco every night…and don’t care how bad my SE’s are…everyday is a step into the future and getting back to a normal life. I really forget what it was like to have a life and not to feel nauseous and tired.
The last point I am going to make is very important…check out your life insurance policy against your mortgage and you might find you are entitled to a sum of money. I did and got good news!!!
Wishing you all a very pain-free and relaxing Christmas break. Carpe diem
Aine
That’s fabulous news Dawn, you must be thrilled to bits.
I am on day 10 of cycle 5 out of 6 of chemo and starting to feel a bit more like. I have been quite poorly this cycle, I had to go back into hospital on day 1 because I couldn’t stop vomiting, I couldn’t even keep fluids down. Luckily a stronger anti emetic did the trick and I wasn’t dehydrated enough for an overnight stay. It has taken longer than usual to pull round and I still randomly vomit but I think that’s more caused by the excess mucus that is bothering me still.
I have managed to get everything ready for Christmas though. My sister, BiL and 7 yr old niece arrived today but they have booked a cottage to stay in so I’m not woken at 4am Christmas morning! Luckily my niece thought it was hilarious that Auntie Nanna has no hair “like a baby” and my sister was relieved that my eyebrows looked quite natural and not like a 15 yr old’s slug brows, lol. She is also jealous that I don’t have to shave my legs - as I said such horrible treatment needs some perks!
I saw my radiotherapy consultant today, just an initial appointment to explain what happens next, SE’s, to answer my questions etc. I found out that I will have a booster week of rads, purely at the site of the tumour, after the standard 3 weeks because I’m under 40 (or at least I was when I was diagnosed, I’ve had a birthday since then) which was news to me. If I find the rads less bothersome than chemo it will be a necessary evil and it does reduce the chance of recurrence in 20 years or more to 1-2%. I just can’t wait for all this to be over and to stop feeling nauseous and tired all the time!
Anyway I hope you all keep well over Christmas and enjoy your celebrations, however and whoever you celebrate with. Merry Christmas ??
Thanks Aine and Auntienanna. Aine - sorry to hear of your problems with feet and hands and hope this does ease off soon. Auntinanna - sorry you are still being sick occasionally, but at least they seem to have got the nausea under control in time for Christmas. My sore throat is gradually easing now and the cough hasn’t been so bad, but (perfect timing for Christmas!) I have an ulcer on my tongue so I’m applying the Bonjela and hoping it will soon go! I saw the surgeon yesterday and he confirmed that the tumour is still there and visible on the MRI close up, but is now very small. I have therefore been booked in for a WLE (lumpectomy) on 19 January. Now that is sorted out we can focus on Christmas! We did the food shopping yesterday after we got back from the hospital. Unfortunately, this wore me out, but I slept late this morning and feel a lot better now. There’s just the two of us having Christmas dinner at home tomorrow, so it doesn’t matter if I feel a bit rubbish. We are planning to see friends and family next week, by which time I should feel more myself. Have a great Christmas. XXX
Had my penultimate chemo today with the last one scheduled for fourth January ???
Got through Christmas ok but didn’t quite realise how tiring having visitors is! Also we had to put one of our two dogs to sleep on 23rd Dec. She was my first pet so that didn’t help. ???
I found out today that I’m having 3 weeks off after chemo and then 5 weeks of rads (spreading the dose as I’ve already had my reconstruction). I’m also starting zoledronate injections on Friday to protect my bones as I’m post menopause because of a hysterectomy some years ago and to stop the cancer spreading to the bones. I will be starting hormone therapy when rads start as my cancer was very heavily oestrogen receptive.
SO LADIES AND GENTS, LIGHT IS VISIBLE AT THE END OF THE TUNNEL. ??♀️???
I hope you all get to see the light of the end of the chemo train / tunnel soon. Surgery was easy compared to this and everyone tells me rads are much easier than chemo. The hormone therapy may be a challenge but I’m hoping that a return to work will be on the horizon soon and that will take my mind off things.
I’m also planning to do the HOPE course run by MacMillan which comes highly recommended. It’s a weekly course for six weeks (two and a half hours a week). It’s group based and helps you refocus once treatment is ending.
Sorry this his was a long post - it’s the energy from steroids …
Cathy
7oanne - I’ve had all three of my T (today is Day 17 of the final cycle), and each one has been slightly different, although they all followed a similar pattern. I don’t think it is possible to know whether your second T will be worse than your first, as everyone is different. I would say that on balance my T cycles got progressively a bit worse each time, and this last one has definitely been worse than the previous two in terms of fatigue, neuropathy, mouth/ throat problems and skin problems, but this is probably because of the cumulative effects. However, some SEs have not been as bad this time, in particular the cough, the ‘Tax Trots’ and the bleeding when going to the loo has not been anything like as bad as on the previous two cycles. At least I didn’t end up in hospital at any time after having T, which I did after two out of the three FEC infusions! All you can do is prepare for the worst as best you can Having had one, you will know roughly what to expect next time, although like me you may find the SEs kick in a bit earlier and last a bit longer. Sorry I can’t offer any better advice, and hope your next T is not as bad as you fear. Sending you best wishes. ???
Jo - can’t claim to have invented ‘Tax Trots’ nickname. It is a term used by other ladies on earlier monthly threads, so I don’t know who first invented it. Having experienced it though, I thought it was a good way of describing the effects! I never had it immediately after the infusion, it waited a few days before making its presence felt. I did have a close shave once while out shopping, only just got to the loo in Sainsbury’s in time!
Hi all!
Hi 7oanne
Just to add my info about the second T cyle.
Am glad to say it was no worse than the first. The aches from day 4 to 7 were no worse and didnt last as many days. They gave me codeine to take and it was fantastic. I took 2 on the worst day and I felt a warm glow for hours and no pain! I took only 1 at a time the next day (total 2) during the day and it got me through. I took no more cos was afraid of constipation - never became a problem.
I had the usual bad nausea for 14 days then it lifted and I have had a great few days. Same as last time.
When you get a couple of ‘normal’ days it gives you such an emotional boost doesn’t it???
Numb tongue a bit of a nuisance and had numb lips for 2 days too unlike last time.
Fingers are very sensitive to heat since the start of first T. I find it very hard to shower, cook and wash up.
This has not eased off and I am going to speak to them about it next Tuesday…my last T and last chemo.
Fatigue was no worse either. When you know what to expect then it is easier to cope I feel.
I was terrified of the T cycles and they turned out to be no worse and much easier to endure than the FEC.
I am not worried about next Tuesday…I never thought I would be able to say those two words LAST CHEMO!!!
To all you who are about to do the same …GO US!!!
Aine
Sorry 7oanne forgot to say…
first T cycle I had the trots for 4 days from day 10 on.
Was expecting same on cycle two…never happened - I was fine…so you might be the same:)
A
Aine, I have my last chemo next Wednesday and while I’m not exactly looking forward to it I’m not dreading it as much as usual. I know a couple of months ago it seemed as if I would never see light at the end of the tunnel.
Here’s hoping rads are as easy to get through as most people find them.
Lisad aren’t you just back from a lovely holiday?
To all of you due last chemo next week …Auntienanna, Lisad, etc…yes we thought it would never get to this stage didn’t we!!! I hated people saying to me in September sure it will be over in no time!!!
Enjoy New Year’s Eve everyone and kick 2016 goodbye. 2017 will be great…let’s promise ourselves that:)
It will be so strange to say goodbye to all the hospital staff next Tuesday won’t it? They are fantastic. I can’t wait to get the PICC line out.
Every day of the next nausea session will be the last one of the cycle. Yippee!! I am going to drink Prosecco if I can stomach it!!!
Be positive :) A
It looks like most of us have either finished now or are about to, so the end is in sight…so Happy New Year everyone! ??? Like Lisad I hope 2017 is a better year for all of us.
7oanne
I was told I would get my PICC line out on Tuesday (last chemo) and the nurses would do it. It does not hurt and I won’t feel a thing.
Does anyone know how soon your hair starts to grow back? I am dying for it to start. I can’t even look at my boiled egg head in the mirror.
I got my new wig last week and it is really good. I went for the lightest weave so you can see a bit of scalp at the parting (there are 3 thicknesses I am told) and the hairline at my forehead is light as well. I have to pay £200 for it because I ordered a second one (first one was toooo bright) and I am entitled to another free one 6 months from the first one. Just for everyone’s info in case you also don’t like yours.
A
Hi Joanne, I have my last chemo tomorrow and start radiotherapy on 1st Feb. I’m having 3 weeks of regular rads and an extra week where they target the tumour bed.
Hi everyone! I know I haven’t posted for a while as my chemo is now finished, but I have been looking in from time to time to see how everyone else on this thread is getting on.
Congratulations to Auntienanna, SeeSee, Lisad and Aine on reaching your final cycle at last (at times we all thought we’d never get there!), and hope the worst of the SEs will soon be over.
I’m afraid the fatigue will probably be plaguing us all for a long time after the last cycle ends, from what Sue H-S and others have said. I remember Madmac22 saying at the end of her chemo that she felt a bit deflated, and that it was something of an anti-climax because of it, and I now know what she meant! I am still sleeping a lot, although I was kept awake last night by howling wind (outside I hasten to add!). It’s doing it again now, but hopefully I will sleep better tonight because I am tired!
I also can’t seem to motivate myself to get out and have a walk every day as I used to, even though I know it will do me good and help to fight the fatigue. I don’t think the fatigue is entirely to blame for this though - I’ve just got too used to staying in and vegetating over Christmas!
Aine - I can understand your reluctance to go out at the moment, but I hope you manage to overcome it and feel more comfortable about being seen in your wig. Provided it fits well and suits you, nobody will notice - they are too busy wrapped up in what they are doing themselves to be looking for people wearing wigs! I responded to your post about hair regrowth on the October thread (03.01.17), and - for others’ benefit - Blueash also posted a link to a website with information on the likely timescale for hair regrowth. I hope you will soon start to see the signs of new growth (though hopefully not ‘green shoots’ lol!) - look out for a ‘five o’ clock shadow’ on your head, which is the first sign that the hairs are starting to come through. It is now a month since my last chemo infusion, and my head hair has started to re-grow (so have some of the missing eyebrows), although it is still sparse, patchy and uneven in length. Early days.
And if you’re worried about people staring at your boobs, you can always get one of these (I certainly intend to for when I go back to work, as the lumpectomy and radiotherapy are likely to leave me with odd ones): notonthehighstreet.com/aliceshieldsceramics/product/earthenware-stop-looking-at-my-tits-badge
Whenever I venture out, I am usually shattered by the time I get home, and it’s that which gets me down rather than what I look like. I am probably being too ambitious, when I should be doing a short walk every day instead to build myself up and get back into the habit of regular gentle exercise. I’m a bit worried about my lack of fitness, because my operation is next Thursday (and pre-op assessment is on Monday!), so I really must make a bit more effort in the short time left. I’ll let you know how it goes, once I am in a fit condition to post.
Meanwhile, best wishes to anyone still battling the SEs - and goodnight ladies!
I’m just starting to feel better after my final round of chemo. It seemed to have hit me harder than previously, although I think some of that is my subconscious expecting me to feel better straight away! I shall go and look at the hair regrowth link, I’m rather fed up of looking like Humpty Dumpty and I have to confess to buying a lash growth serum. My lashes were my one vanity, being long, black and curling upwards and although I still have lashes they are short and thin and I want my old ones back!
Aine, I’m sorry you have been feeling so down. I agree, most folk are too busy to notice but if you feel self conscious then following the good advice on here is a must. I am naturally lazy but I have to admit to feeling better if I get out for a bit each day, even if its a walk to the shop for milk.
Dawn, I love the badge! I will have to get one to go with the toy blue tit my sister bought me from our RSPB reserve (It’s a joke that I am now Mrs Blue Tit as I still have the dye on my skin from my surgery in August, lol) Good luck with your surgery on Thursday, the pre assessment is just weight, bp, an ECG and a discussion so nothing to worry about.
My wig supplier told me to use dry shampoo on shiny wigs. Very easy to use!
Jo xx
How have you been getting on with the wig Aine? I thought it was funny that your wig is too shiny, because I have had the opposite problem! The first time I washed mine it seemed dull and lifeless. So I ordered some detangling conditioning cream, and used that next time after shampooing it. Result: wig much improved, softer, shinier (but not too shiny!), more natural looking, and easier to comb. I now use the conditioner every time. If it gets too shiny I can always give the conditioner a miss next time, or use less of it. My top tips for wig care: don’t wash it too often (my hairdresser said about every 3 weeks is enough if you are not wearing it every day), follow the washing instructions that came with it, don’t rub it dry but pat dry with a towel and then allow it to finish drying naturally (I hang mine in the shower!), don’t comb it until it is completely dry, and once it is, use a detangling comb, but be very careful not to damage the cap. Hope your wig is looking better now and you feel happier wearing it.
Glad you are both feeling better Aine and SeeSee, now you’re halfway through the last T cycle. I am pleased to report that nothing serious was found in the sigmoidoscopy I had yesterday afternoon (just a few small piles - sorry, too much information!). I have now been discharged from the Endoscopy department of the hospital, as the surgeon is satisfied that the bleeding during the T cycles was caused by the chemotherapy. This is a huge relief, and means I can now focus on the rest of the BC treatment plan. I spent most of the rest of yesterday tackling the cleaning and ironing backlog, as today I will be going to the theatre in a revealing gown (it’s lumpectomy day!), and I don’t know when I will be capable of doing these things again. I’m posting ridiculously early this morning because I have to be at the hospital by 7.00 a.m. (we’re on our way there). Fortunately, it only takes us about half an hour to get there so it could be worse. I’ve noticed some posts on another thread from others who have suffered fatigue and nausea after a lumpectomy because of the anaesthetic. I’m only just starting to get over the fatigue from the chemotherapy, and it looks like the operation will set me back again (so will the radiotherapy). I’m also worried about nausea, because of the bad experience I had with FEC. I hope they can give me an anaesthetic that doesn’t cause nausea, because I’d rather not have to rely on anti-sickness medication that either doesn’t work, or combined with the lingering effects of the chemo and the other effects of the anaesthetic, will send me to sleep for the rest of the year (i.e. Cyclizine). Wish me luck - I’ll let you know how I get on when I am able to post again.
Thanks for all your good wishes SeeSee, Auntienanna and Aine!
I’m now back home (was discharged in the afternoon following surgery) and it has been nowhere near as bad as I feared. Apart from some pain and soreness from the wound and general tiredness, which is only to be expected, I have been fine. I have been given a follow up appointment with the surgeon on 3 February by which time the biopsy results should be available - fingers crossed no need for more surgery.
Meanwhile, I have been advised to take things easy for the next 24 hours until the anaesthetic is completely out of my system, and to start doing arm exercises from today until further notice, but not do anything too strenuous, no heavy lifting or vacuuming (fortunately OH does that so I don’t need to!). Also advised to take Paracetamol and/ or Ibuprofen to control the pain (was offered Cocodamol but declined).
The wound can’t be all that big because it isn’t a huge dressing (it was WLE and SNB only and no axillary nodes were taken). It is a waterproof dressing so I can also use the shower as long as I try and avoid getting the dressing too wet. I am to keep it on for 10 days if possible, and to watch out for infections - I am slapping on the Dermol as a precaution! They gave me a number to ring if any problems.
By far the worst things yesterday were the preliminaries - hanging around in the ‘Arrivals Lounge’ waiting to see various nurses, the anaesthetist and the surgeon, and traipsing around the hospital after that to have the injection for tracing the sentinel nodes, and to have the guide wire put in. The guide wire installation was a right pain and took ages, because the clip was difficult to see on the ultrasound and mammogram once they had put in the local anaesthetic. The nurse had to get the consultant in to help. They were running a bit late anyway because they had to fit an extra patient in, so I must have been quite late getting to the theatre after all the messing about with the guide wire.
I’m glad I saw the anaesthetist first though, because he was able to reassure me that the anaesthetic doesn’t work the same way as chemo, and that bad effects were very unlikely given the short time I would be under (about three quarters of an hour). The surgeon must have worked really quickly, so it looks like all the palaver with the guide wire was worth it.
When I came round and they established I was OK, I was given some water (very welcome after being ‘nil by mouth’ since 3.00 am), and I was moved onto a ward to recover. There the nurses brought me tea, biscuits and sandwiches, and did observations at regular intervals until they were satisfied I was fit to go home. Then the nurse telephoned OH to come and get me.
I got home about 5.30 in the afternoon and I was eating my tea before Auntienanna posted - in a chair at the table, not in bed! Had to have a good wash first though, to try and get rid of the red stuff they had plastered all over me during the operation (what on earth is it?). Then watched the telly for a bit before going to bed and managed not to fall asleep in front of Death in Paradise (just the sort of mindless stuff I needed, rubbish plots but nice scenery!).
Got up late this morning at 11.00 - but if you can’t have a lie in after an operation when can you?