Desperate and feel like walking away

Hi Libuse,
sorry you have been suffering so badly.
While not as horrid as your experience, my first tax was extremely unpleasant to say the least. the next 2 have been amazingly …ok… i think there is a bit of trend of finding the first the worst, and subsequent taxes being slightly kinder. Obviously that is simply something i’ve picked up on, not the words of a doc!!
I have nothing but praise for the medical team who look after me, but i still echo other posts in that you must be firm with your onc. I asked 3 times (in 1 meeting) for stronger painkillers for a migraine type headache on FEC and only on the 3rd did he agree.
The very best of look and wishing you drastically diminished side effects from now on!!
Cannoliwings X

Hello everyone,

I’ve had a better day today. I got a sound sleep last night and woke up with less pain, I do still have lots of discomfort in my hands, feet and lower legs but I can cope with that. Last night I slept wearing gloves and thick socks and they definitely helped.

The state of my mind is better too, I had no tears today. Congratulate yourselves ladies as your comments and support were a massive factor in helping me. The most positive thing I’ve done since being diagnosed is to join this forum where the understanding and support is wonderful. Thank you everyone.

My younger daughter has arranged the day off work for my next adjuvant clinic appointment, usually my husband attends all my hospital appointments but his memory isn’t great (think like me he’s a bit stressed out with all that’s happened), my daughter I’m sure will remember everything, she’ll ask relevant quetions and will be assertive, so I’m expecting to get more out of this appoinment. What is the adjuvant clinic please? Will it be a discussion with my Chemo nurse?

I am now feeling more hopeful and expecting to improve daily - hope I’m not being over optimistic!

My husband bought some adult Bonjela and using that in conjuncion with my prescribed mouthwash has helped, I still find eating painful but tomorrow my husband is making a soup so that should be easier to swallow.

Again ladies, thanks so much for your help, you probably won’t realise just how much your support and comments have been a comfort to me, both practically and mentally.

Well done, Libsue

Remember - a trouble shared is a trouble halved.

Hope that you sleep well tonight and enjoy the soup!

Libsue so glad you are feeling slightly better and more positive. The girls have all said everything I would. The first was interesting!!! but the second much better. I have my last tomorrow thus the steroidal lack of sleep.
Best wishes
Cackles

Bless you both, thanks.

Good luck for tomorrow Cackles. I can’t wait for the day I’m able to say ‘my last chemo is tomorrow’ better still, my last chemo was last month/year.

Best wishes everyone, and good health and happiness to you all.

Libsue

Adjuvant refers to a treatment that is given alongside another treatment e.g. chemo and zometa for bone mets. Neo-adjuvant which is a term you might also come across is when you have treatment e.g. chemo to shrink the tumour, before the main treatment e.g. mastectomy.

Good to hear you are feeling better in your mind and body. Hang on in there.

Laurie x

Libsue. Other adjuvant treatments are hormone therapy eg Tamoxifen, arimadex,femara, zoladex etc and the targeted therapies like Herceptin. Not everybody needs these? But many do. Did you ring the helpline ? they would answer any queries you might have. They are very good at supporting us through this c…p journey. They can put you in touch with trained volunteers that have been through that which you have. There is also Peer suport for husbands, mine finds it very useful to talk to a man whose wife had similar treatment to me. If your husband would like to chat things over the Helpline is there for the whole family.
I so hope you have got that Tax train off your chest-- it is too heavy!!! Tax does have a sting in the tail and bites when you ,east expect it…but it does what it is given to us for and that is so important.
Sleep well .I am awake because of the steroids or as I prefer to call them St. Eroids because they protect us from allergic reactions.
Cackles xx

Ahh, reading your post Laurie I’ve obviously got my adjuvants and neo-adjuvants mixed up, I should have said neo adjuvant. Do you think my neo adjuvant clinic appointment will be with my cancer nurse? The appointment is 30th Nov, the day before my next chemo, and I know I’ll be having a blood test but I also have a clinic appointment. I last saw my Oncologist just before my last chemo, so don’t think it’s with him/her. Infact I know it isn’t as I was told my next Onc appointment would be 19th Dec. I must sound so under informed and perhaps a little naive, you all appear to know so much more than I do. When I’ve had past appointments the news has been so shattering I’ve not been able to stay fully composed, and therefore haven’t thought to ask important questions. BUT, that won’t be happening again oh no no no, which is why my daughter is accompanying me to my next appointment.

Cackles, I didn’t ring the helpline but it’s good to know the back-up is there should I need it, I’m hoping now it won’t be necessary for this cycle, however if I’m feeling desperate after my next Tax I shall not hesitate in ringing. I have read so many very sad stories on these forums, and they made me realise there’s people far worse off than me, people without family to support them. I read one lady’s thread which was extremely sad, the poor lady has recently lost her husband who had a brain tumour, and she has now been diagnosed with BC, had a traumatic ride so far and hasn’t even started chemo yet, in fact she’s not decided whether to have chemo or have a mastectomy. Ass I’m now feeling able to cope with my own aches, pains and tiredness I would feel guilty taking the time of the helpline which could be given to those in more need.

I like your term for steroids, St Eroids, makes me realise they are our friends dishing out tough love. I hope you manage a good nights sleep. I’m still here as I’ve slept most of the day. I hope all goes well tomorrow.

Thank you to you both.

Take good care.

Libby

Libby, you sound so much better than when you first posted! Which is so good - you will gradually get your head round all of this and come to terms with what is happening.

My OH came with me to all my appointments and took notes so that I could read them afterwards - there is such a lot to take in!

Stay away from the sad stories - they won’t help you. You will soon find threads (like this one) that you feel comfortable with posting in.

If you can’t sleep take a look at the thread that is called “standing outside the dark dark woods”

I am going to bed soon - hope to read more of your posts when I get up.

Debs

Hi Debs,

Yes, I am feeling much better, in particular my mental approach is stronger. Sunday/Monday/Tuesday I felt almost suicidal and didn’t know where to turn, you know the score - chronic pain, exhaustion, feeling ugly and the rest, well thankfully I decided to turn to you ladies and I have never made such a great decision, feeling really pleased with myself for my fortitude, but feeling much more pleased and grateful to you ladies for pulling me out of the doldrums, you super people you. I hope in the future I can give back to others what I have been given here by you all.

Debs my husband is Italian, and although his command of English is brilliant he wouldn’t be able to write things down at the speed necessary to keep up with what’s being said, but as I mentioned my daughter will be accompanying me to my next appointment, so all will be well so far as remembering just what was discussed.

I think you are right re the sad stories, my cancer nurse told me not to focus on others as I need all my energy for myself, she said I have to believe my needs are as important as anyone elses no matter what their situation. I find it difficult though to reason like that, as I think I’m being a bit selfish focusing on myself, but you know that’s another thing these wonderful forums have taught me - we all have a right to feel down, cross, bitter, fear, or whatever, but to benefit ourselves we should try to overcome these feelings. Well, for now I’ve overcome them and that’s thanks to you all. Gosh, don’t I go on!

Haven’t looked at “standing outside the dark dark woods” yet, but I will.

Must go now and get some beauty sleep, that’s a funny thought! How can I look beautiful with my bald head, dry cracked lips, eyelids which resemble a lizard, itchy spots on my arms and walking like a 100 year old woman? I’ll tell you how, the first day I feel OK to go out I’ll cover my arms, put vaseline on my lips (should look like lip gloss) pull on my gorgeous wig, haven’t thought yet what I’ll do with my eyes, though maybe cream eyeshadow, whatever I’ll knock em dead - oh if only! But dreams cost nothing, and I hope I have a lovely dream, and you too.

Catch you all tomorrow, and all you ladies who are having treatment tomorrow I wish you well.

Libby

Hi libsue, I just found your post whilst I’m wide awake after Tax #3. I had 2 x FEC to start of which my first one was horrendous and I was violently sick for 24 hours.- the second one was a lot easier. They changed me to Tax on my 3rd chemo and did warn of aches but didn’t warn how bad they were - again it was pretty horrendous so I called them the day after and I was advised to take ibuprofen 400 which helped a lot. I have to say that on my second and third Tax (third was just yesterday) the side effects have been much less with just a loss of taste and an upset tummy. My conclusion. Is that it’s just the first lot of a new drug that your body just doesn’t like - I could be wrong!
I hope you’re next one isn’t as bad but definitely speak to your onc nurse if you have bad SE’s as guaranteed someone else will have had them and the docs will know how to ease it.
Caroline x

Morning Supertrouper see you were trawling like me into the dark hours… Your neo adjuvant means use of treatment agent before the main treatment. Strange because it IS the first treatment but it is no doubt it is a by blow from Surgery being the be all and end all…your chemo is given to shrink things pre surgery. I waffle it is the tax I take it all back for you but it might help others!!!

New girls I agree with everything Supertrooper says. Less people post if they are doing well than the minority that have problems. Peer support and the helpline are there for YOU when you are ready to use them . I did on many kccasions and Wlii call again happily because each call has been so useful and comforting… I really mean that.

I am about to have my last Tax and I really don’t feel worried. The unknown is the worst part of all of this… The first step into an area out of your control. I have ice lollies to keep my mouth cold plus Iced drinks . Wine coolers to keep the finger and toe nails cool. So far I have had no mouth ulcers and I have lost no nails The lollies were a trick a Helpliner suggested who herself had chemo nine years ago… Another Helpliner over twenty years post surgery for a large lump advised me to get my husband to ring and he now has chats with a gentleman from Wales who’s wife had the same chemo as me. I needed a bit of research info and again they helped asking one of the Senoir Nurse Specialist for me. You don’t feel rushed Just listened to.
Big Hugs
Cackles

Libby

Agree with Cackles about the helpline. I used it once when I was really distressed and the woman on the line was fab and spoke and listened for over an hour.

I also did one of their “Living with secondary BC” days in Birmingham earlier this year (they run all over the country) which was run by one of their nurse specialist and she was really great and answered a load of what I though were ‘silly’ questions in one of the breaks. I learned more from her in 15 minutes than in 4 months with my breast nurses and I learned that there are no such things as silly questions!

Stay informed and involved in your care. Good that your daughter is going with you. My husband always comes with me and takes notes. I have a little notebook and whenever I think of a question, I write it down to take to my appointment.

Laurie x

Just wanted to empathize with all the previous posts. I am now day 8 after my last Tax round of neo-adjuvant chemo and starting to feel like the Alien has packed his bags and is about to leave my body (probably via the toilet ha ha over the next few days - and good riddance!). I didn’t have any injections with the Tax but have managed to get through despite feeling, during the first round, that I wouldn’t be able to. What has really helped with reading the posts on this forum is that it made me realize that I wasn’t such a total wimp after all. I felt so pathetic and felt that I must be making a mountain out of a molehill until I came on here. I feel that one of the worst side effects of Tax is the effect it has on your spirit. It really brings you down emotionally which makes dealing with the physical manifestations so much harder. Everyone I’m sure is careful not to frighten people but at the same time we need to acknowledge the reality of some of the horrible side effects because we know then that we are not alone. It has certainly made me feel better for knowing that. BBB

Evening all,

I’ve had less pain today, still feeling exhausted but I’ve slept for most of the day, maybe I’ll be standing outside the dark dark woods later! Hope I have company.

I’ve been thinking about all who had treatment today and hope you are all doing OK, and congratulations to those whose last treatment was today - it must be such a relief to know no more chemo.

Caroline is your avatar a picture of yourself? If so you look beautiful, surely the hair is yours not a wig? Wishing you all the best now chemo is over for you. Take care.

Cackles, thanks so much for clarifying a few things, a real help. Good to hear how much the helpline comforted you, I’ll definitely call it next time I feel in need of professional support. Hope your treatment went well and the next few weeks are without nasty side effects. Look after yourself.

Alesta, I love your picture, it’s loud and proud and good for you. I too am a baldy, in the house I go without headwear as it’s more comfortable. Thanks for your tips. Take care.

BBB, thanks for sharing your experiences, helps me understand I’m not being over dramatic. You’re now day 9 post last chemo, congratulations and all the best for a healthy future.

Has anyone heard of, or tried, Castor Oil treatment? My daughter advised me to try it; it’s supposed to encourage your hair to grow back faster and thicker. I’ve been rubbing it into my scalp, eyebrows and eyelashes nightly, I’ll let you know if it works! It’s so cheap I thought it definitely worth trying afterall nothing to lose.

Take care everyone, and keep smiling. Hope you all have a good weekend.

Libby

Hi Libby

Sounds like you are in a better place today.

I had my last TAX today and managed to cram in some Haagen-Dasz this afternoon before the chemo mouth re-appeared.

Mostly I don’t bother with headwear. I have a wig but don’t really think it suits me and can be a bit itchy at times. I live in a small village and everyone here knows I have BC so generally go out with the full Kojak (or Harry Hill, depending on your era!) Now that winter is coming, I generally wear hats but am going back to work on the 5th Dec and not sure my patients are ready for the bald look so it will be back to scarves.

Still tanked up on stroids but given that I only got 3 hours last night, think I might head to bed now.

Hope you have a good weekend.

Laurie x

Evening all . My last taxingTax dripped it’s way in today so that is it. Poisoning over., wine distributed and a large shop in Sainsbury’s with 86 yr old mother and husband over and done with. Stocks of non healthy chocolate, cakes, biscuits, crisps, and carbohydrates of every shape and description bought . I an ready for the cornflour paste moth…or so I thought. Horrors. My lamb steak cooked with garlic, rosemary, red wine, onions, carrot and parsnip mash, green beans,broccoli and sauté potatoes tasted of NOTHING…only five hours and taste Gone…so unfair, my husband loved his.D…m chemo!!! Do now in bed unable to sleep because of St. Eriod’s and the missing sleep fairy he hires to disappear.
Instant Grumpy mood has fallen where there should be joy…Why? What a strange drug. Husbands driving well criticised and then to find the Central Heating boiler had broken down and was oozing oil… Greerrrr Heated blanket on and bed. To sleep perchance to dream of a better mood and the insertion of gcsf tomorrow .
Sorry ladies zi did say Tax bites in odd ways.
Cackles