Morning Everyone - how are you all today?
Amanda - amazing transformation of your garden. You must have used at least a week's worth of calories digging that over. Re the T - yes I think you have a good idea of what to expect, days 4 and 5 were the worst for me. If you plan for sofa days then you may be pleasantly surprised, or at least ready for it. I think it's a good idea trying the cold mitts - that way hopefully you will also avoid the nail problems, sore fingers/toes and peeling skin. I didn't have any nausea with T so hope you will avoid that too. Everyone complains of the horrible issues with taste buds.
Rooner - hope the bone pain is easing. I love your attitude towards lack of hair, good for you. Haven't heard any funny stories from you recently so maybe that means chemo brain is also disappearing?! I am still asking people the same question twice in one conversation.
If all goes to plan I should have FEC 3 on Friday. I'm trying not to think about it too much but at the same time I just want to get it done and behind me. I hope the new anti nausea will work this time.
Love to all, Evie xx
The weather back to overcast and dull today after such a glorious weekend.
I attached my pictures!! I had a lovely morning yesterday buying new plants.
I am going to a bit of travelling this week to visit friends and colleagues, as after the 6th (T1) I wont know how I am going to be. I am re reading everyones posts to get a good idea. Thinking should be ok for 3-4 days then pain! I am used to quite a lot as I have a two knackered vertebrae. Am hoping that sickness will be a minimum. I am planning doing the frozen mits/gloves - even though my new Cons says so few people suffer with this neuopathy (sp) in hands and feet that it will probably be a waste of time....
Only 5 days GCFs this time.
i havent been too bothered about my hair, but always worry about my weight. As someone who has been obese for years then finally lost 3 stone in the last year or so, it is really difficult for my chemo team to understand why I do not want to put weight on when not necessary. I have put on a stone and that is with minumum Dex! But no exercise. I have to do exercise regularly because of my back, but all this is a vicious circle and I can't do anything.
Take care All!
HI ladies. Things ok here, I was feeling ok after my last T on Friday but my first GCSF injection seems to have given me a bit of bone pain today (more than usual) but all still manageable. After the 3 day steroid fog I had an amazing lie in this morning.
I feel your pain Jacquie about your hair but I have gone the other way. I wore my wig only a couple fo times and the same for head scarves; for me it was a case of this is me, I am bald, tough! I now only wear a hat if its cold outside and then take it off when I get into Tesco or whereaver I am going. I was a little self conscious at first but it didnt last long. I also feel that letting the fresh air get to my head is helping in some 'hair growing speeding up process' way. I am also still using Alpecin shampoo and I have a good coverage all over, although I seem to have lost my ginger and its either white or blond!!!!!
For me losing my hair was the worst prospect at the start of this journey, however it turns out that it hasnt been that bad. For me losing my taste buds each time has been awful. I walked around Tesco today trying to find something that I thought my taste good but reverted back to the usual pineapple.
Hope everything is ok. Claire xx
Jacquie - glad to hear that you don't have lymphoedema and good to hear that the problem should resolve itself. I think Fiddlercrab has summarised feelings re hair loss really well. In order for us to feel "normal" again and fit in we want and need our hair back, so it's an important part of the mental side of all this.
Amanda - loved your "boo" start of your email, made me smile! How is the border? All finished?
I'm OK thanks Jacquie, I think it's the cognitive dissonance of 'finishing chemo yay!' combined with 'cr*ppy chemo side effects'. My brain doesn't like it. Currently watching Homes Under the Hammer with a heat pack on my knees but will try and get outside for a very short, very gentle walk after.
Have they suggested Hirudoid cream for your veins? Have a read up and see if you think it might help. I had very painful arms after FEC and used it, it seemed to ease them up and after a week or so I could stretch my arms out properly. I did ask the oncologist first, and he basically said he didn't believe it really worked, but also didn't tell me not to, so I bought some OTC, but you can get it prescribed. It either worked or was a very effective placebo!
I am getting used to the sight of my head in the mirror but I wouldn't be brave enough to go out without a hat. I just ordered two more... Like Snail it is the weight gain that is getting to me more. I need to get a grip once I am through this week! I think the hair loss is hard thought because our hair is such a part of who we are. It's the one part of our body that we can really do something with and it is on display almost all the time, so we invest quite a lot in getting it how we like. And then it gets ripped away and we don't know what it is going to come back like or how long it is going to take. It's also a really important part of how we recognise each other. When I was a little kid my teacher got her hair cut and I spent the whole day hiding behind the biggest boy in my class because I didn't believe it was the same person. So yes, it doesn't matter compared to everything else, but that doesn't mean it doesn't matter. It's something else we have lost control over, but the one thing that we really had control over before.
I have read about the R creams and it seems some people get them prescribed and others don't. Weirdly, my iPad keyboard is no longer allowing me to change to the number keyboard. You can buy them yourself but they are expensive. I don't know what is happening with radiotherapy yet but they are on my radar as something to ask for!
Boo!! to all,
Just wanted to say what a beautiful day it was today, and I did NORMAL day (for me that is) !!
I have been meaning to get going on this one border, for 2 years! Today I started it....
I have a starting pic, so hopefully will have an ending one tomorrow.
I know when I start T, these sorts of things may not happening...
Take care all
Am trying WMJ's idea of having 2 tabs open so I can reply to the various posts! Lots of lovely positive stories to read.
Glad to hear from those of you who have had your final chemos - hope the SEs are as few as possible. But sorry though Fiddlercrab to hear that you are feeling rough and fed up - yes you do have to keep hanging onto the idea that this is the last time and that in a week, or probably less, you will be over it. I am happy to keep telling you that if you promise to do the same for me next weekend as I know it is so hard when you are feeling so rubbish. Big hugs.
Jacquie - very kind to offer to share experiences of radiotherapy. I know I would love to pick your brains in due course as I haven't really looked at that yet, my oncologist keeps telling me to take one day at a time which is right (especially for someone like me!). Really appreciate your tips - sorry though to hear about the pain you had to go through. I heard from someone somewhere about something called R1 and R2 cream for radiotherapy - I just made a note of it, but don't know more than that. Have you been given it? And what happened about your arm - was it lymphodema?
WMJ - hope you have had a lovely day out.
Rooner and SALowery - thanks for the tips on hair regrowth.
Cookiepuss - I saw my surgeon yesterday and have confirmed that I am going ahead with the prepectoral implant. There is still some risk of capsular contraction, but far less I believe. I would be interested to hear what your surgeon says about the options and what you decide. Thanks for the tips on hair loss and moisturiser, I'll get some of that, my scalp is very dry. Have a lovely weekend with your dad - like Jacquie, I'll be thinking of you tomorrow.
Lovely day here too and a nice walk in the sun, trying to get back at least some fitness. So much easier than in the depths of winter.
Love to all, Evie xx
Oh, hello aching bones, indigestion and terrible wind. I won't miss you...
Feeling pretty fed up, keep telling myself that by this time next week the worst side effects will be gone and will not be back, but it's a bit of a struggle. Maybe because it's such a beautiful day and I don't feel up to going outside and appreciating it (I had a wander round the garden earlier, but I'd love to be walking along the coast or over some fields, you know?)
Morning all, lovely to hear all the positive news, especially the silver linings. I had my refund through recently for our 'once in a lifetime' holiday we should have gone on 3 weeks before diagnosis. Although you know you are entitled to something you just never know with insurance companies. Fantastic news you are getting money on your insurance to help with mortgage, it is something nobody wants to have to apply for but it will certainly help going forward. 🙂 Looks to be a beautiful morning here, we are going to go out for the day, OH just making the sandwiches....OMG how life changes? Have to say he has been truly amazing, as before all this he did very little at home, now it is me who does very little. I am still feeling fairly fatigued but hopefully get a little walk done. I was pleased my bloods remained constant and I now just have two Thursdays of chemo to go..then a week after that some freedom. Looks as though I am having my lymph node clearance on 10th May, which gives me a month to do some 'normal' things. LIght at the end of this tunnel ☀️Xx
Good luck to everyone who is on the home run this week with their last chemo sessions.
I will continue posting as I too have surgery and radiotherapy as well as the three weekly Herceptin injections.
Evie - I am still considering the options for surgery and think I have narrowed it down but have a lot of questions. I am going to ask the surgeon about the one you messaged me about - I am not sure if that option is available in the UK as all the info on the internet was from US websites. However, my surgeon is very up to date with latest treatments etc so it is worth me asking the question particularly if it is something you have been offered. Certainly if I opt for an immediate reconstruction with an implant, I don't want to risk the capsular contraction from having radiotherapy afterwards, but the one you suggested seemed to mitigate that risk.
I have also been given the details of a couple of patients who have already had surgery who are happy to talk to me about what they had done so I am going to have a chat with both of them at some point in the next few days.
Evie - in terms of losing your hair, just go for it when it starts to come out as I found it much easier than watching it wash down the plughole in huge handfuls. I used Aveeno Oat moisturiser on my scalp too which has really helped keep it moisturised particularly when wearing hats/wigs.
Rooner - did your hairdresser friend recommend any products to help hair growth once it starts to come back? If not would you mind asking her please if it's not too much of a bother. Also did you shave yours again, or have you left it?
I am not sure whether to shave mine or not - I also have a 5 o'clock shadow but it is very fine and wispy so part of me thinks "noooooo, leave it as it's the first time I've had hair in months and hopefully it will thicken up" but the other part of me wonders if it would be best to shave it again and hope that the new stuff comes through stronger/thicker.
Dragonlady - very sorry to hear that this is your third battle with cancer in a very short space of time; life is very unfair at times. I'm not sure how you would stay so positive in such circumstances.
Agarside - I am so pleased to hear you feel more comfortable with your new team. For what it's worth my chemo nurses always give me a big hug after each chemo.
Finally (sorry, this is a really long post) I am hoping my port wound/infection is now healing. I popped into the hospital yesterday for them to take a look at it as there was a big hole at one end where my husband said he could see the port (yeuwww). It is where the glue that they used to seal me up popped open with the infection. Anyway I got some different dressings which have allowed a bit more air and this morning it looked like it was closing up. Hooray.
Gorgeous day here. My Dad is coming up for a long weekend and it will be nice to have him here and also for him to have a change of scenery particularly as he had been full on with looking after my Mum for the last six months.
Wow Fiddlercrab... yes silver linings...
I was in one of those "Holiday Clubs" points (timeshare) which was getting very expensive for the yearly managemnet fees. At the time 15 years ago it was great, and when we use it we have a great time but we have a motorhome and a caravan in Talybont so just dont need it. So I rang them to ask for a "break" in membership fees for the year whilst I "fight" this cancer, and sadly I know long meet the criteria of membership and I am thrown out.... Silver lining.
Added to this, when I get bill, I just mention BC and they tell me not to worry and pay when I can... Silver Lining..
I have had my surgeries, but will be thinking of all of you who now have to plan for this. I have radiotherapy which I think will be quite straightforward compared to chemo - I hope!
A glorious day here in Shropshire!!
That all sounds much more positive, Amanda, glad you are feeling much happier.
Just heard that my life/critical illness insurance is going to pay out 50% of my mortgage, with a view to reviewing it once the pathology from surgery is in, to see if they can upgrade the payout. Silver linings and all that!
Hi Fiddlercrab - I think I'm looking at surgery at a similar time to you. I'd also heard about the 4 to 6 week window, and yes I checked and it is from when you get the drugs, not the end of the cycle. xx
Amanda - really happy to hear how well your appointment went and how much better the team is. That's just how it should be, listening to you and discussing. Now get out there and enjoy the next 2 weeks! xx
We are having a brief glimpse of spring today!! But cold mind!
Had a lovely walk yesterday and it was freezing!
So I met my new oncology team today, and to be honest just hoped they were bit more human than the last lot, was all I wanted. Appt was at 9am, got to see Cons at 10am. After an hour, I had missed my train to London so had to cancel ( grr ) but I now in the system and T1 is on 6th April. So now, 2 weeks to have a nice time, go visiting and generally enjoy life. Cons has said the break should not cause too many problems. What was interesting, was his concern for my "Gall Stone" the one my previous hospital refused to acknowledge. He felt that knowing I have one in situ is very important because of the potential risk of infection, especially with T, as there is a greater risk of neutropenic sepsis. He wants me to be extra vigilant.
We had far more of a "discussion" and he said it was up to me, what I accepted or declined and we were able to negotiate and compromise. But it was a discussion, not a lecture. The treatment is a little different to what was on offer at previous trust, such as 5 x GCSF instead of 7, and different need for Dex, much smaller (so I am happy).
It does mean a 40 minute drive, but I trained here and it was a bit like "coming home".
I am feeling much happier and got a hug from the nurses. That's all I needed really.
Love to all
Evie - they said initially 4-6 weeks after chemo for surgery. I think they meant after the infusion rather than after the cycle is complete but not sure. I have an appointment with the surgeon on 10 April when I will find out what my options are, after or during which I will make a decision. I'm expecting/hoping for a surgery date in early may but I guess it depends on waiting lists and such!
Fiddlercrab - great that the final chemo is done! Do you know when your surgery will be?
WMJ - sorry for having a rubbish memory, I did know that you are having a node op soon. I'm so glad that this chat will continue.
Dragonlady - really hope the new meds sort out your fluid retention. Good idea about the port - I know what you mean about going off stuff! I want to reply to your final sentence, but not sure what to say, except that I hope this is your final bout of cancer and you have got rid of it this time. Sending hugs to you.
Hope everyone else is doing well today. xx
Thanks so much everyone for the birthday wishes. I spent most of it in bed but at least it was my bed and not a hospital one! xox
About the PICC line coming out, you don't feel a thing! If you are squeamish like me then don't look but honesly you don't even know that that have done it. Nothing sharp, no tugging, nothing at all so don't worry about it.
Final chemo: Done! But I don't really consider it over until the end of the 3 week cycle. And the fact I have to go back every three weeks for Herceptin makes it all feel very ongoing.
They booked me in for bloods and an appointment with the oncologist, on a date I can't do. So I have cancelled that because I don't need bloods before Herceptin, but they are going to speak to the oncologist and see whether he really needs to see me, then try to find a time when I am free. It's a busy week that week.
Next appointment is on the 10th to discuss surgery options. I for one would be happy to keep posting away as we move on to the next stages in our treatment 🙂
Thanks for info re "cold" mitts. Unfortunately no one mentioned it at the beginning and I have had the last doxetaxcel now. My oncologist cancelled the last session because of the bad reactions to hands and feet. He said if they continued with the chemo, the problems with my fingers could be permanent!
Re fluid retention - now have a much stronger dose of medication from GP so I hope it will solve the problem soon. I have had an ultra sound and a chest Xray which rulled out DVT and Pulmonary Embolism - but the swelling has got worse since.
I have long been told off for not drinking enough water so I am making a big effort to drink more to flush it out. Am looking longingly at the bottle of port but manage to resist it as i know my taste buds are not right and I dont want to spoil something I really like!
Have an "urgent" CT scan booked for 3 April to see if the cancer has gone. Then a discussion on what comes next..
This is my 3rd bout of cancer [2nd lot of chemo ] in 4 years . It has been a long winter and I will be glad when this is over.
All the best to those with final chemo this week - Fiddlercrab great to hear that you have the green light to go ahead today. Rooner - I know what you mean about being oddly excited, I think we are all desperate to cross that finishing line and put this behind us.
Running Girl - very sorry to hear about the family funeral. Sending strength to you.
Cookiepuss - really hope the infection is on its way out so you can go ahead with T3 next week. Re surgery - I still plan to go ahead with the recon option I chatted about on PM. What are your thoughts at the moment?
It's really encouraging to read all about everyone's hair. Mine is sadly still falling out but I'm really interested to hear any tips about shaving it etc for when mine hopefully starts to grow.
I've still got surgery and radiotherapy to go after this (as I think has Cookiepuss and Fiddlercrab) so I would love it if this group could keep going, whether once a week or whatever.
Hope weather were you are is better than here in Salisbury as it raining and grotty! I am strangely excited today for bloods tomorrow and chemo Friday; I now next week could be grotty but I am trying to stay positive and see this as the beginning of the end. Radio therapy isnt bothering me and I am hoping to combine that with being back at work.
In terms of hair. I have a lovely fuzz (quite grey!!) all over. I have quite a few hairdresser friends and have just asked them on facebook if they have any advise regarding shaving it off or not. I am so happy that I have fuzz that I don't want to part with it, however if shaving it will help it grow better then I will do it...I will keep you posted with any response I get.
Also hoping they will remove my PICC line on Friday, I cant say it has been a hassle having it in but its another sign that this is nearly over! I have to say I am dreading it coming out, the thought of it being pulled out makes me want to throw up, but looking at some previous posts on here I am probably worrying over nothing.
Good luck to everyone on the last dose of rubbish this week, and love and thoughts to those of you in our little family whos journey is continuing....we are in this together. Claire xx
My hair is also growing back, It is grey and like baby hair. Is it best to shave this off?
Best of luck to all of you having your last one on Thursday. It will be a weird feeling to finally get out jail, even though most of us have further treatment and ops to come. I have 2 more weekly treatments after Thursday and I am so looking forward to a month or so of freedom before my lymph node clearance.
It is my intention to read through the forum and continue to support those who are still having chemo. Maybe those who have finished could just do a weekly update on how they are doing etc?
After a beautiful spring day yesterday, back to heavy rain and darkness here 😞
wishing you all a good day. X
Oo, hair. The first regrowth fluffy stuff seems to be shedding but some very short and denser feeling second regrowth is coming through underneath. Still looks very pale though, I think the hats will be staying for a good long while yet.
Saw the oncologist today, bloods are good so we are go for the final chemo tomorrow! Feels really weird although I will be back in the unit for 14ish more Herceptin jabs over the next year.
Off to the opticians first tomorrow since my annual check was due in December. I specifically requested the most experienced person because I know chemo can affect your eyesight (although haven't noticed any problems) but also because I have other ongoing eye issues and last year got the newest person, who, after an hour, called in the boss for a second opinion...
Wide awake from the steroids. I'll be manic (for me) tomorrow.
Happy belated birthday LennyGK, and sorry to hear about the funeral RunningGirl
Running Girl - you are on the home straight now with one more to go.
Sorry to hear about the family funeral though - it's certainly tough enough at the best of times but even worse if you are feeling unwell.
I was wondering whether to shave off the fluffy stuff that has appeared in the hope that it might encourage some better growth - has anyone else shaved off the first growth and found that the new hairs are coming through stronger/thicker?
Oh running girl we are on the same cycle and can not wait to have just 1 more bad week....
i also have have the fluffy grey stuff and an going to shave mine too...
sorry you you have the funeral to attend on weds let's hope your strength fights through..
I'll defo stay around to help anyone else get to their last chemo and any advice needed...
good luck all and wishing you well
Agarside - I'll be hanging around for a while yet as I've still got 2 cycles of T to go. I really must start reading up on the surgery options and making a shortlist of what I would like for discussion with the surgeon.
Evie - the FEC made my hair fall out within 3 weeks of the first treatment so be prepared! Thanks also for the endorsement re the Philadelphus plant.
I am taking the opportunity to buy a few plants for the garden so am making a list of the ones I would like - but it's distracting me from the surgery reading. Have you decided what you are going to do?
DragonLady - I take my hat (or wig) off to you getting through 5 cycles of the T; I have found the T to be the hardest in terms of the side effects and the impact it has had overall, and thought the FEC was much manageable.
OldDawn - ha, yes, I blame the chemo on everything I forget even when I know it hasn't necessarily been the chemo that has been at fault.
Lenny - Happy Belated Birthday for Sunday. I had my chemo delayed last time too and although it's a pain it was nice to have a week when I felt pretty much back to normal.
I saw my oncologist yesterday - all being well Cycle 3 of T going ahead a week tomorrow but he said that he definitely wants me to have the four cycles of T given that he has reduced the dose.
He and the nurse checked my infection over the port area as I said it was still red and sore and had been leaking fluid. Took the dressing off and loads of watery gunk came flooding out so they took another swab to send off for testing. He thinks the infection is on its way out but I've got another week's worth of AB's to be on the safe side.
I'm willing these to knock it on the head as unless the infection goes they can't do the chemo as it is right over where the port has been inserted. I guess the best case scenario is that it gets delayed again (which I hope is not the case) but I am trying not to think worst case which is presumably that they may have to remove the port - but given that I have no veins left to use that really is not an option.
Fed up of all this now!
dragolady, they did not give me any tablets for my water retention, I did ask but my doctor said to see how I got on without. It made me very fragile mentally, but I think that was because I did not feel bad when I was diagnosed. It seemed as if they had made a mistake because I felt very well and only started to feel ill and begin to suffer because of what they were doing to me.
In the end my blood counts went too low to safely continue and I stopped early. I had to have all docetaxel (with carboplatin and Herceptin) because I take tablets for high blood pressure and statins. Herceptin is toxic to the heart (you have heart monitoring every 12 weeks) and they could not give another drug which could damage the heart.
I developed neuoropathy, water retention, low blood counts, anemia, dreadful fatigue plus I felt like I was going mad because it was all counter-intuitive.
On the plus side I kept loads of hair thanks to the cold cap and I did not get ant tummy troubles, thrush or cold sores.
Most of the water retention is gone now but I still don't wear rings. I could not wear them at all due to swelling and now they do go on but are still tight and uncomfortable. I had my last chemo in October.
Amanda - sorry for forgetting who suggested frozen mitts, I am ok if I write things down but hopeless if not! Great news that you will be using them for your next chemo, hope that means you will avoid any hand and foot issues.
It's tough for you re-living your full journey, but hope the PALs advisor will help and support you with your complaint.
Will be thinking of you on Thursday. I hope the new consultant is good - then you have your day in London to look forward to. Make sure you let us know how things go.
Tomorrow I have been invited into my local hospital, to go through all my complaints with a PALs advisor.
Because I have now moved my care, she has advised I now put in a more official complaint rather than PALs just investigating. I have spent a good few days writing my full journey, I have been keeping a blog for my own personal reading and to be honest it makes for sombre reading.
I am getting nervous for Thursday and didnt sleep well last night. Tonight have taken a nice big cocodamol to try and knock me out!!
It was me, who talked about "frozen mits and socks" yes, believe it is the same principle as cold capping!
I will be doing this. I just want to get going now.
I was hoping to be finised by my 50th to have a nice celebration.... but impossible now.. 3rd May.
Hope tomorrow begins a new a better day
love to all
Old Dawn - I can't expect you to remember who is having which treatment - but I do agree with you that we have a good excuse for forgetting everything!! Thanks for the reassurance about the hair growth. xx
Lenny - glad to hear that you were out of hospital for your birthday and that the infection is under control. Pain about chemo being delayed, but hope you can have it asap. xx