Hello, I’m not really the forum type but then who voluntarily wants to be on a breast cancer forum I guess!
So I was diagnosed in March this year, had surgery and weekly paitaxel and three weekly herceptin. Paclitaxel finished 4 weeks ago tomorrow. I was told all my hair would go within 7 - 10 days, now, no shedding until over 3 weeks in. I was ok about it, I didn’t cold cap. Then it slowed and stopped. Now I’ve financed my eye lashes have nearly gone and my hair is falling out faster than before. No nose hair, that’s long gone. So why is this?
The breast cancer nurses have been pretty useless and the whole experience has been pretty dire in terms of care received.
Now it’s nearly all over I feel like crying all the time, during the chemotherapy I felt physically not to bad. Now I’ve been hit with fatigue which is unbelievable. I looked on during the treatment which didn’t do me any favours as I think people forgot I was ill and thougt I was ok. Now they expect me to be my old self and that person just isn’t there any more.
So will my hair all go now? I’m actually not too bothered about losing it just wish it would go or stay.
Will I get less tired?
Should I see a gp about feeling awful. As I said I have no faith in the breast care team, can barely bring myself to go into the unit for the herceptin, did ask about transferring car to another hospital in the trust but it’d be a half hour drive plus by for one injection so I’m trying to get over myself.
Sorry this is long,
Thank you for sharing…I am also a new member of Forums…and have got some really good insight into what I am to face…I have had Fibromyalgia for over 15 years, so fatigue has become a constant to me…then a month ago, I was diagnosed with Breast Cancer…, and I have jumped through so many hoops of scans…and hopefully I am near a plan to tackle this…but the surgeon is suggesting I have chemo first before surgery…and have an oncology appointment tomorrow night…I am at the age where I just want the surgery, take it all away, and get it over with…
@katkin1 and @lamia I am a mixture of the 2 of you!! I was diagnosed in April/May this year and had chemotherapy before surgery as there was a very large lymph gland in the axilla and the surgeon felt it was better to shrink it with chemo first to reduce the risk of lymphoedema. I also felt ‘just get it out’ but could see that his way was the best for me in the long run. Ask your surgeon his reasoning for chemo first.
Hair - I had many hair traumas and found the uncertainty of whether it would fall out or not very difficult. Many people find that shaving it all off ends that and are happy with wigs/hats etc. I decided not to shave so I could keep my fringe poking out under a hat. I also have a wig that I’m happy with. I mainly decided not to shave because I wasn’t sure I could cope with seeing myself bald but only you can decide what’s best for you. Most of my bottom eyelashes have disappeared and quite alot of the top ones I did this workshop which was good fun and helped in lots of ways as I was a non makeup wearer
I finished chemotherapy 8 days ago and feel beyond tired. Tiredness like I’ve never felt before. Also, having not cried at all throughout the whole chemotherapy I spent 5 hours yesterday crying at everything- puppies, babies, kittens, even the M and S food magazine I think it’s a mixture of exhaustion,
relief at finishing and, for me, the thought that in 6 weeks I have the surgery to face. I don’t think the fatigue will lift quickly unfortunately. If you had major surgery, open heart surgery or something, then you wouldn’t expect to be bouncing around in full health within 4 weeks, and your friends shouldn’t expect you to either. I have read that it can take 6 months or more for energy levels to normalise. Please don’t be depressed by this. You won’t feel as fatigued as you are now all that time but you have to be kind to yourself and give yourself time. Tell people - I’m not up to doing such and such at the moment but I’d love a quick coffee. - I’m still recovering from chemo so i can’t walk far but a sit in the park would be great etc…
Love to you both
Thank you for the link, it is so appreciated…hugs and thank you for sharing your journey…it just proves we are not alone…which means the world…
Thank you both. I’m not bothered by the hair loss as such, it’s more that I thought I was at the end of it so for it to go now is a bit depressing. My eyebrows are hanging on though which I am pleased about as I have very distinctive, very dark eyebrows, with nearly white hair .
Yes I get what you mean about crying at everything, I am the same. I think it’s the combination of holding everything together and saying “I’m fine, I’m doing OK”, that’s ended and my tank is empty. Good point about other surgeries, takes at least 12 weeks to recover from a partial knee replacement.
I had surgery first, my choice as the tumour was bang on 2cm, so under the surgeon said surgery first, over would be chemotherapy first. So I opted for surgery as I was “get rid of it” mode. By surgery it had grown to 2.5 cm, so was aggressive
I’m sorry you’re having such a tough time and really sorry you’re not getting support from the breast care nurses.
I am on my last session of chemo before starting on radiotherapy etc (one step at a time). I spend all my time on the settee or in bed, no hair, eyebrows or eye lashes, 2 stone heavier and feeling very down so I feel your pain. But we will get there. It will get better and one day we will look back and see how far we’ve come!
I strongly recommend that you go to a Maggie’s Centre. They are brilliant and can help you regarding diagnosis, treatment, side effects, emotions etc. Even if there isn’t a Maggie’s at your hospital, I think it would be worth going to the closest one. They are there to help anyone living with cancer or anyone supporting a cancer patient. My friend took me and we received a very warm welcome and useful information. Even though I am too fatigued to go there at the moment, I still feel supported and I will go back when I can.
Thank you, I’ve never heard of Maggies centre, there is something similar near me but I think it is a local charity, I haven’t been there either.
Off to radiotherapy planning next week for me.
I have spoken to the macmillan help line and they have been very good.
I honestly haven’t been to bad through the chemotherapy, I do get covid half way through which was a nuisance. But no sickness, nails on. I was and am incredibly grumpy and totally intolerant of anybody I think is being an idiot. They did half my steroids dose as it was thought the mood swings and lack of sleep, total insomnia could be down to that. Nope, was as bad as ever so I am probably just a cow . I do have some energy but it runs out quickly
@katkin1 I think you are me!! I am very grumpy and intolerant, even with my lovely husband who has been totally wonderful throughout all this - he’s in the kitchen at the moment cooking my tea and I’m in here crying
I’ve heard really good things about the Maggies Centres though there isn’t one near me
I saw this tshirt the other day and thought it was very appropriate for those of us towards the end of chemotherapy
It’s true I have a lovely man who, even when I want to stab him, I have to acknowledge is a very nice man. I would divorce me if I had the chance . Though i don’t let him cook:grin:, he has been great. But I’m still most grumpy. I will continue to blame the steroids for years to come
I so wish you well on your long journey to recovery, some of our features be it hair, eyebrows or eyelashes…are something we feel makes up our personality…ie …like eyes can speak more often than our words…this is one of the things that I so wished to hang on to…but have had to think and which is more important…
I so wish you well again…hugs so hope you have a better day