Well, if it's not one thing it's another!!
on my way home this afternoon a truck in the outside lane clipped my drivers side, flinging me round to face the oncoming fast lane traffic - who, thank god had slowed down. Traffic was busy but not fast moving. He claimed he didn't see me (I have a little A1), as he was 'attempting to change lanes'. The police said that I was in his blind spot. He acknowledged that it was his fault. Anyway, I am fine despite being bit shaky. - paramedics were warning me o fheadaches etc. But I am loathe to do anything to jeopardise my Chemo on Tuesday🤕🤕 I've just had a nice bath and my husband is cooking dinner. My poor little car is I think a right off, so I am considering myself very lucky and praying that nothing else happens!!
back on to Chemo - sorry about the rant...I will be using a Paxman cap, and have been told that it will be on for 30mins before Chemo and ' a while' after!
elisan - and anyone else who would like to read it - the link to my son's blog is:
I hope it works and makes you smile.
have a good weekend everyone.
with fec you need to have cold cap on for 1 hour past too, i decided not to go for it, why put yourself through it when there is no gareantee. i have cut my hair shorter and will again next week before it starts to fall out the week after, i have got a few weeks ans scarfs so hopefully wont be too bad.
had to get more meds today, acid has been a nightmare, anyone else had this? also emend runs out and sterids run out today, so seeing if it hits me tomorrow, hoping not.
anyone got a sore mouth yet/
Hi Sarah- sorry but another question!
How long do you wear the cold cap for during chemo?
I am sure the nurse told me it adds approx 1 hour to my treatment but was just reading an article that recommends wearing it between 3 -8 hours for best effect!
Hi Sarah, Hope the benefit of cold cap continues for you. Do you find it painful?
was thinking about popping into Maggies soon to find out about courses available.
Hi to you all. Just thought I would share my chemo experience so far. Had my first FEC on Wednesday 12th. So far so good. I am taking my medication as told to. I never slept much Wednesday night and was hyper yesterday (not like me at all!). Today a bit more tired and some constipation but hoping things stay good.
thanks for your post and again so sorry to hear you are in the same situation.
I am interested to hear that after 2 chemo no hair loss. What type of chemo are you having? Does it make a difference to hair loss or is it purely down to the cold cap?
I can understand why you frequently have a wee tug at your hair, glad none coming out at present.
Just back from hairdresser and had a few inches chopped off mine in the hope that less weight will sustain it longer. Not brave enough to go short yet.
Your experience to date has given me a bit of optimism. Thank you
Thanks for your post. Sorry to hear you are going through the same thing- it sounds like you have had a time of it with surgery and infection.
Hope your 1st chemo was not too bad.
I will certainly keep posting as the support is great as must you
thanks for your post and sorry to hear you are starting the same journey as myself.
I haven't arranged a wig yet and haven't looked at hats or scarves. I will start looking over weekend.
Good luck to your son with his fund raising, do you have a link to his blog?Reading about others experiences and ways of coping has helped already and I am starting to feel more positive.
Let me know how things go on Tuesday
When you are going through BC and all that it entails - it is very difficult sometimes to cope. I too struggled at the beginning with sleep. My Doctor was really good and probably would rather have put me on anti-depressants and counselling but to me felt like overkill. I have always been a half glass full kind of person and just wanted at the time to be more normal while I was still at work. She prescribed sleeping tablets but I have only taken three in July but it got me back into a normal sleep routine. But it will be interesting to see what happens now I have had my first FEC. Had the nausea, fuzzy fingers and gums, been incontinent (tmi! sorry) now constipated (a rabbit would have been proud of me this morning lol!) But I woke up last night starving so had to have a bowl of weetabix and a brew at 2.30am!!
As for the hair loss I can well understand where you are coming from (because I wear hearing aids) so am cold capping. I have my wig ready and actually had my hairdresser cut my hair last night. She was really quite excited by the prospect and did a fab job - so hopefully not too many shocks if my hair does go awol and I end up wearing the wig. I will have a look at the cancerhaircare.com site because I'm looking around for sleep caps and the odd hat or whatever but I do have a Head session booked with our local hospice next week so it will be interesting to see what comes of that. So chin up folks - we will crack this!!
thanks for your support. Good luck with chemo on 17th.
I don't yet understand the difference between the different chemo regimes. Is it oncologist personal preference or are some indicated dependent on pathology?
No mention of vascular involvement when pathology discussed, something I will ask at my next appointment.
Not one for screaming or ranting but I have done a lot of crying, now hopefully passed. Just seems so surreal. I was always Breast aware and therefore believed if there was any changes I would notice them quick. Unfortunately doesn't seem to be the case with lobular type- quite scared knowing that you can have such a large tumour and feel perfectly healthy.
your right -hair will grow back.
Hope everything goes well on Monday- big hugs
i too am starting FEC next week - on the 18th. 6 lots - just want the first one over with now so that I can start to count them down.
i am going to try the cold cap, and have a wig on standby in case I need one, but I am hoping - lots of positive thoughts - that I may get away without needing one. Also have a few hats, and am quite pleased that winter is coming and I quite like hats in winter. I love my hair too, and my 28 year old son has offered to shave his hair off in support! He is fundraising for Macmillan now. Was laughing and crying at the same time when I read his blog.
i had a tumour removed from my left breast early September along with 4 lymph nodes, one of which came back positive - hence the chemo.
getting your head around everything is part of the fight - and I for one, have found this forum a great help. Listening to other ladies in similar positions, and learning about how to cope with all the side effects that are 'the unknown' until we've gone through our first cycle.
keep posting, and stay positive.
I too was diagnosed with Lobular Cancer ER+ HER2 - in July, initially 1cm then MRI showed 4 cm and no lymph nodes involved advised to have Mastectomy which took place on the 1st Sept, when I woke the lump was actually 7cm and i had a axcilla clearance as the sentinal node showed cancer, my surgeon placed a chest expander behind my chest wall which is gradually being filled with saline.
When I recieved the full biopsy results 2 weeks after surgery it showed no vascular involvement but 3 of the 14 nodes removed were positive, I have my first of six chemo sessions EC -T on Monday 17/10 which will be followed by radiotherapy and tablets.
Like you the two parts of my body I was really comfortable with were my boobs and my hair and I am struggling more with the thought of losing my hair, but it will grow back and I will have reconstruction towards the end of next year.
You will find lots of support on here the way I did, feel free to rant and scream if you want, we are all on the same journey and we can be there for each other, sending best wishes and hugs
Well another sleepless night.... Had my ct scan yesterday and start my chemo FECT today hence being awake at stupid o'clock on here!!
I'm just a bit worried about the tiredness, I'm already exhausted with stress and anxiety. Every time I think I've got my head around this I get more bad news, but us women are survivors and this forum is an amazing support.
After much thought I have told my son & daughter (15 & 16) exactly what is happening now, including the the fact that I now have to wait for ct scan results. Obviously lots of tears involved but they now have a better understanding of why I'm so forgetful and having lots of " the lights on but no ones in" moments!!
Although im gonna try the cold cap I have also been and tried some wigs on, it all feels so surreal.
i too am still on full pay, then half pay for 3 months, then 2 weeks SSP. Have no idea how I'm going to manage my bills and mortgage so if anyone does actually get PIP would be grateful for any information to help claiming this.
love to all
this is my first time posting on the forum.
I was diagnosed with lobular breast cancer in August. Initial ultrasound placed tumour in R breast at around 3 cm and WLI was discussed.
Following MRI, tumour in R breast was found to be 7 cm and further suspicious areas identified in same breast, also 1cm suspicious area in L breast.
Had R mastectomy and WLI of L breast 3 weeks ago, I was advised not to have reconstruction at this point due to concerns that wound healing may delay further treatment, I have a BMI of 37 and was advised that this could complicate surgery and healing.
Pathology results confirm 7cm tumour E+. Tumour also in sentinel lymph node although nothing had been identified by ultrasound or MRI.
Starting chemo next week -19th Oct -FEC.
Initialy distraught at loosing my breast and now my hair -if anyone had to describe my appearance they are the 2 things they would probably comment on. Getting my head round it now and hoping I can offer and receive support by being part of this group.
I am going to try the cold cap.
Despite sentinel lymph node involvement I have been advised that no further nodes will be removed- radiotherapy after chemo they say will deal with this? anyone else in the same position?
Sending out a group hug x
Ladies, is there anyway i can find a cold cap to be shipped to my country in reasonable rates?? I am living in Pakistan and there are no cold caps available here. Any guiadance will be helpful, thankyou.
You are right, my brother consuted an Oncologist in AUSTRALIA for my case and they also suggested 3 dose of Herceptin will be fine. Even in my country Pakistan, my oncologist suggested 3 dozes and i was doubtful but now after reading this, it seems like it's happening in many countries.
If you read some of the old Herceptin threads on here some people are trialling a 6 month course. I think the threads are from 2011.
Thanks for the advise, will get some of the tablets as suggested and will try and eat more fibre I am my own worst enemy as I tend to go most of the day without eating and just have a main meal in the evening, I do drink a lot of water though.
Hugs and Best Wishes
such good news re your CT! Brilliant and one worry less...
As you are due to start your chemo and you may have hemorroids you need to be especially careful.
One of the side effects of chemo is either diarrhoea or constipation. To avoid constipation, if I may suggest, start taking Senna tablets on each of the first day of your chemo treatment days for perhaps 4-5 days. It may be an idea to start of with a smaller dose, than recommended though. Once all works more properly again you may wish to stop taking them. Consider also to increase your fibre intake with vegetables or vegetable juices.
It would also be wise to have some moist wipes to hand, so you can ensure you are as squeaky clean as possible post a 'loo session'.
Our red and white blood cell count is affected by chemo treatment. Hence out platelet count, the bits that stop bleeding, will also become reduced. The white blood cells make sure we do not pick up an infection, hence a bursting blood vessel can cause some issues.
It is a subject, which may be worth discussing with your chemo team, when you meet them, so they can also advise you accordingly and ensure you have relevant accompanying medication, should it be necessary.
Hope all goes well.
CT results finally back and show no spread, good news at last, it did pick up a nodule on my Thyroid and I will have a scan soon but told not to worry as it's quite common apparantly.
Picc line was put in yesterday and will have first chemo on Monday, had another 100mls in my chest expander and thats it until chemo is over due to the risk of infection.
Freaked out this morning as passed blood and quite a lot of it luckily had an appointment at the clinic today so spoke to BCN and Oncologist who seem to think it's hemeroids (what next) shouldn't effect chemo going ahead so long as it doesn't get worse over the weekend, fingers crossed.
Hope all goes well for you all will let you know what happens Monday, Hugs Mary
Hi again swampy1901,
yes, you are right - unless we are on benefits, we do not get much help with costs, apart from the free prescriptions.
Re PIP - here are links, which may be worth exploring
Re Blue Badge
Hope they may be of help.
Thank you Sue H-S for all the helpful tips. I do get free prescriptions -in fact it was one of the things that actually hammered it into my head that I had cancer when the nurse filling in the form ticked the box for cancer/related etc!! Until that time I had been in denial - I went home and actually cried for england after that episode!!
At the moment because I'm still on full pay from work I don't seem to be able to apply for anything. It's even confusing when under PIP that cancer is considered a disability but then don't make it clear how you can apply even for a blue badge which would be really handy right now for hospital visits. But I have been told to apply for PIP forms as I had my op back in August after being diagnosed in July and and still unable to drive due to issues with my tummy wound which will be impacted by chemo treatment now.
I spoke to my Doctors Surgery who rang me back and said prescription already sorted - so I'd better get over my soap box complex!! lol!!
I am on the FEC-T regime of chemo and the chemo nurse didn't seem too concerned but did say that one of the drugs can cause irritation to the bladder so to drink more to try flush it through sooner. She also said that some of my side effects will be caused by the steroids which I'm on at the moment so to try and bear with it.
Thank heavens for these boards - just to see what others who have gone through offers so much more peace of mind and relief.
We're STRONG ladies. We CAN get through this regardless of what this disease and treatment throws at us.
strengh and best wishes to everyone.
no I'm not on herceptin or any other drugs or tablets (yet!!). Must be that they wanted a baseline reading??
Phew - that is a long trip around!
You are now entitled to be exempt from prescription charges, as you may already know. The chemo department should have given you a relevant form to complete. If not, please ask. Do not feel guilty to have prescribed what you need to help you through this time. As you rightly say - cancer is an expensive business. Depending on your income,etc - you might also get help with your travel costs.
This link may be of help - http://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support
If you keep feeling nauseous please talk to your treatment team, they may be able to adjust your accompanying medication. Heartburn - I had Lansoprazole prescribed for me and it helped enourmously.
Yes, one could buy over the counter remedies, but having prescribed drugs seems to be, not only cheaper, but also more effective, rather than experimenting with over the counter solutions. Chemotherapy does affect our mucus membrane, which includes our mouth (mouth ulcers, sore mouth, oral thrush) and our digestive tract.
If you purchase post surgery bras, you should be able to get the 20% VAT off, which is worth remembering.
M&S have little tags on theirs, which can be filled in at the till and you pay 20% less than the price ticket.
Flushed cheeks, yes that certainly can happen, but usually dissappears within about 10 days.
Incontinence - please do not be embarrassed. I do not know what your chemo regime is, however, especially on FEC or EC the kidneys, bladder and urinary tract can suffer causing the need for frequent visits to the loo - also during the night, or even incontinence. Once you are through that treatment things should, however, improve again. They certainly did with me.
Despite the challenge - please keep up with your fluids - it will help to support your kidneys and urinary tract, as well as flushing rthrough the 'chemical cocktail' quicker.
Had first chemo yesterday, so far not too bad, i am not cold capping as on fec-t the chances of it working i have been told are slim, so hopeing that once treatment is over i will get nice thick hair again, wigs and scarfs all ready.
re free scripts, like you say we have so many more expenses and when having chemo you can get all medication free so go for it, you need it.
hugs to everyone else xxx
I too went for a heart scan in the nuclear medicine unit yesterday - it took two attempts to get a butterfly cannula in because the veins on my right side are just not helpful. But the tea helped and the radiographers explanation of what happens, why and what the results will show was really interesting - this was a guy who loves his job.
I had my first chemo the previous day so now am trying to work out what is actually a side effect or what is hypochondria Things like nausea and heartburn are easy, my flushed cheeks? always been a pale face! and when I woke this morning it appears I have been incontinent:?
I will phone my chemo nurse today and see what she can suggest. I seem to have lots of little niggly bits like heartburn but feel guilty for asking for a free prescriptions even though I could pay for some over the counter things. But since finding out I have BC - expenses have risen shockingly - travel to two different hospitals for treatment, one of which involves a 98 mile round trip, new bras, compression pants, all sorts that you never even think about.
I used to be one of those who complained about people having prescriptions for every little thing even when it was cheaper to buy it over the counter and now needs must - I am embarrassed about it That'll teach me to get off my soap box lolxxx
Sue are you on Herceptin? I am and I have to have a scan on my heart every 12 weeks or after every 4th Herceptin injection. That is because it can be toxic to your heart and if your percentage of whatever it is they are measuring drops too much they cannot give it to you.
If anyone else is on Herceptin and worried about that then don't be because in New Zealand you only get 3 injections and that is it! Seriously they have stats which show that you don't need it for a year.
Went for what I assumed was an ECG yesterday (where you see the graph of your heart rate), but had a full heart scan instead - fascinating really. When we saw the Oncologist later she said that everything was very good with my heart and explained but that if a certain reading was too low they wouldn't be able to give Chemo. Why it was a scan and not a 'graph' I don't know, have not had any heart problems and my parents are well despite being 90 and 80.
have appointment to see her again just before my second treatment, and have blood test on Monday followed by my first Chemo on Tuesday. Just want it to start now. Counting down....
Oh dear - you certainly did not have a good experience and I do hope they have sorted this out by now.
As to nasea and being sick - It will help to have lots of little snacks, even if it is only water biscuits. Keeping your fluid uptake up is also very important.
If you are still vomiting after day 3 post treatment - you should really contact your bc nurse or ttreatment team, as they may have to adjust your anti sickness drugs. The drugs initially prescribed for us, may not always be the right ones straight off.
The pins and needles in the nether regions is caused by the iv steroids. Some have this side effect, lol - like me - thankfully it does not last long.
The 'drunken' feeling was also something I experienced, but it got better as I went through my chemo treatments.
Hoping you feel much better now.
Hi again . Was due to starts chemo today but was cancelled yesterday as no one had made an appointment for having Hickman line put in . Had new patient meeting and blood tests yesterday and was told that I have been booked in to have line put in Friday am and chemo pm , just fed up with being messed around all the time . I had surgery in July . Can't wait to get started and get on with things . It's nice to hear that people have had holidays during chemo as had to cancel ours in August and would love to just get away but don't know where or when .