Diagnosed end of Feb. Had the surgery, more because the margins weren’t clear, then chemo then rads. Been on the tamoxifen for 6 weeks now.
I’ve been back at work two weeks now, but I am so tired and I ache all over the top half of my body. I am fed up with people asking me if I’ve had the all clear and telling me that they know exactly how I feel because their mother / grandmother / friend had breast cancer.
To be honest I don’t think they can know what is like to spend your 38th birthday in hospital on a antibiotic drip in isolation because you have no white blood cells, having diahorrea and not being allowed to use the toilets and having to use a commode instead.
I know that I am aching because of going back to work and that, as exercise is the best way to deal with the fatigue so I keep being told, I have been going swimming and to the gym. But I still get moments of panic when I think it could be something else which I can’t quite suppress.
Everyone who sees my hair says really short hair looks great - but I hate it. I had long hair before this started and it’s going to take a good four years to get back to where I was and I want it now.
Is it normal to feel like this? I get told that I should be booking celebratory holidays etc when I still can’t think about Christmas in case something happens before then and I end up back to square one again with more surgery, chemo etc.
Or is it just the tamoxifen mood swings & I can’t see the wood for the trees?
Honey you are only 9 months from dx.Of course what you are feeling is totally normal.Your body has [as they say]been 'butchered burnt and poisoned’of course you are exhausted.No one understands unless they have done what you have done.Anyone who asks if you have 'the all-clear’knows nothing about bc.
All the best,
Valxx
Welwyn, you need to be kind to yourself, you have been through so much and I think once the treatment stops, all the emotions come up that you have held on to. You need to listen to your body and if you need to rest, do that. Its early days and it all takes time to come to terms with the whole dx, treatment and the emotional effect that cancer brings.
Best wishes
Leadie
It does get better but it takes a long time. Like Val says your body has had poison pumped into it, major surgery and been fried and these events would be traumatic enough if you ‘only’ had one of them to cope with and recover from never mind all 3.
It probably won’t be much consolation to you but it’s only been in the last 6 weeks that I’ve felt more like my old self and I finished rads in March 08. I tried to go back to work in summer last year but it was too much for me and I’m now retired at the grand old age of 44 !! My retirement came through in Feb and it’s taken me this long to feel comfortable with it and not guilty.
The doctors and nurses looking after me have been fab and have always warned me that getting back to normal (or as near as poss) would take a long, long time and that I was to try not too stress myself about it. It’s me that’s put pressure on myself up til recently.
Incidentally, my mum also took about 18 months after treatment to get back as near as poss to her normal self.
Please don’t be afraid to mention it to your doctors - my oncologist said the after effects are so underestimated and that everyone assumes that once the treatment is basically over with, you’re fine and expected to just get on with it, but it’s not that easy.
Just don’t expect instant miracles and be easy on yourself ! Words of experience from someone who didn’t do that herself !
I think it’s the accumulation of little things which I think I should be able to cope with when I’m still struggling with the whole cancer thing.
On reflection going back four mornings a week was a bit ambitious when I was doing three days a week before all this and I’ve still got a six year old to look after.
On the hair front I’ve booked an appt with the hairdresser to have a tidy up and I think even though it’s only four months since chemo I will have it coloured. Losing the grey I seem to have gained will help how I feel.
The hairdresser seemed to think it would be OK and she is one of the Trevor Sorbie my new hair thing. They’ve done a patch test thing on my skin so as long as I don’t react to that I can’t see there would be a problem.
The other recent thing that is bugging me is that I know I was luckly in only having the lump removed and it could have been much worse but now I can’t wear underwired bras for more than a couple of hours before it starts to hurt.
I’ve been wearing sports bras through treatment but wanted something with a better shape for being back to work and normal. But I can’t find anything other than one or two hideous white granny bras (apologies to grannies but you know what I mean). The issue seems to be that as a 30F nothing seems to have either a large enough cup or a small enough back.
Triumph have quite a pretty bra with lacey straps in a 30F I needed a 32 F, sorry can’t remember the name so probably no use posting at all, however found the ladies there brill. They’re specially trained to help ladies like us and measured me properly and spent over an hour getting styles for me to try! Good luck
oh i,m in the same place as you are…diagnosed in jan 09…ops, chemo, radiotherapy, and now tamoxifen and condescending patronising comments…!!!
i agree until you,ve been there yourself they cant know…so dont tell me …
hair??..i,ve just last week used
a semi permanent on mine…it took great and just makes me feel better…like you people have said i suit short hair…well i dont like it either…it wasnt my choice and i liked my long hair…
and i need a t shirt to say…yes i,ve had chemo and rads but i,m still recovering ok!..cos people just think you,re 100% and i aint…yet…i have worked all the way through my treatment just taking the odd day off now and then…and have stayed really up beat…but it makes me wonder whether i,ve been too upbeat and people think i,m all better…oh i dont know…
i,ve replied to you cos you sound like me…
as for the bra…i,m a 36c and just buy any without underwires for daily use…
good luck and big hugs…x
It does get better gradually - give it time. Having BC really does change us and other people don’t understand. People asking about ‘the all clear’ doesn’t help at all either. I’ve had people arguing with me - when I said to one friend ‘they don’t ever do that - they can’t’ - I got the inevitable ‘oh yes they do - my friend’s mother has been given the all clear’ … etc.
I miss my underwired bras too but find them too uncomfortable even now three years after WLE. But I’ve found some lovely bras from M & S. They’re non-wired and made almost entirely of elasticated stretchy lace so they’re quite pretty and very comfortable. I don’t know if they would be available in your size but the non-wired section is better than it used to be so it’s worth having a look.
Very best wishes. Anthi x
just a quick word on the bra issue. I am a 30FF and always go to Bravissimo. They have a good range of styles in our size range with a 30 back. I always get fitted and the assistant does all the running round. I have 3 different styles underwired but they do non wired as well. Hope that helps.
Sorry about how you are feeling. It is a very difficult time. Sending you best wishes.
Oh Welwyn I do feel for you - it does get better but SO slowly. I am 18 months post diagnosis and still struggling but not as much as 3 months, 6 months, 1 year ago.
I too was told by EVERYBODY that my hair looked great short but that wasn’t the point - I didn’t WANT it short! It was a question of choice and someone/something else had forced me to have short hair.
all any of us can do is keep on keeping on - the support you get from this forum is amazing so loots of good vibes coming your way.
Welwyn dont feel like that…it normal who have that kind of feeling in case of cancer…but i advice you to find people who really support you…helping you to cope up with effect of cancer treatment…
Just to say that after a week of getting more and more anxious about the ache in my surgery side arm, I telephoned and managed to bring my appointment which was in two weeks time forward.
Been seen & examined & everything is OK. So while it’s irritating that my arm aches I know that it is not the cancer spreading.
Been Christmas shopping and noticed that I keep carrying shopping on the surgery side without thinking. I suspect that it adding to the general aching.
Hair has been coloured & cut so is an improvement. I gave the hairdresser free rein with the colour so has a slight ginger edge to the brown in some lights (live and learn) but I feel a lot happier with the grey gone. Went and collected my son from school without a hat or headscarf for the first time which felt good.
Having read your first post it could almost have been me writing it!! Diagnosed Feb also and turned 39 in may… I returned to work in mid Oct so as not to lose my working tax credit…I realise this was too soon but I’ve been trying to work as little as possible to get me back on my feet… Glad to hear your arm is ok, mine has been aching a lot also but as I’m a hairdresser I put it down to that. I have two boys and am trying to get organised for Christmas…I could see it far enough and don’t want to seem a bah humbug!! everybody now assumes that I’m going to be so glad to be alive I should be jumping from the roof!! I am grateful but also completely knackered…
My hair is still too short…still wearing the wig and probably will for a while yet. I was on herceptin up till 6 weeks ago and I think that slowed the hair down… like you I had it long which I liked and it took 4 years to grow… so here we go again.
I am seeing a councelor at my local Maggies centre, who is helping me to come to terms with my new life. I have found it very helpful and I am now accepting that things will get better. Hope all goes well with you and that you have a nice Christmas.
Welwyn,I’m exactly a year ahead of you in treatment.The way you’re feeling is perfectly normal.Some folk do think you’re “all better” and expect you to carry on with things as you did before BC.Others treat you as though you’re totally disabled and can be very patronising, so it can be difficult re-adjusting when you get back to work and you’re knackered.There seems to be quite a crowd of us who had lovely long hair and get really fed up being told how great the short hair looks.Unfortunately for me I have hair like a poodle now.Again,I get pretty annoyed when folk tell me it would cost a fortune to get a head of hair like this.I would never have chosen it even for free!
Did you have a bone scan at any point in treatment.The reason I ask is because I broke my arm and have now been diagnosed with osteoporosis.I had no scan before treatment and have never smoked,always exercised,eaten sensibly etc.If you have any aches and pains get them seen to ASAP.
Well done getting back to work,and don’t be too hard on yourself.
No bone scan but I’m 38 and my lymph nodes were clear.
Achey and tired again today but then I did 20 lengths in the swimming pool last night & I’m still not sleeping.
Talked to my husband last night & he thinks I’m doing fine - considering. Agreed that although I don’t want to take any more drugs (chemo was horrific) I will talk to the doctor to see if he thinks that anti depressants or something to help me sleep would improve my quality of life.
Concerned that (1) I would end up addicted to them so swapping one problem for another and (2) just starting to feel I’ve got my mental alertness and agility back after chemo and I don’t want to lose that.
On the other hand maybe I just need some help to get through the next few months.
Welwyn.
It does take time to get back to feeling somewhat normal.I know from experience that I expected too much too soon.I’ve been horribly impatient.I used to spend an hour in the gym followedby 100 lengths in the pool and got really upset when I could see pensioners doing more in the gym and lapping me in the pool.My GP is great and said I should take it slowly and spend no more than 10mins in the gym and 10mins inthe pool.It hardly seemed worth getting changed for that,but was probably te best advice.Like you, I hate the idea of taking any drugs,so just take what is absolutely essential.
Be patient and take is slowly.
Tricia
Hello Welwyn, Do you think you perhaps went back to work too soon? As others have said it takes a long time to get over all the treatment you have been through this year. You also have a family to care for, although your husband sounds very understanding. Could you cut back your hours a little if you do not want to stop work? Perhaps you just need a little more time to build up your strength and have a little time to reflect and to realise just how much you have had to cope with recently. Things will improve and they will get better. I have just finished a long spell of chemo so I understand the feelings you have expressed so well. Take care…one day at a time…and be kind to yourself. Love Val ( another Val this time). X