After Treatment

Hello lgt,

I felt exactly like that....and there are still days when people say ,' you're looking so well now' that I want to scream. So yes, I think how you feel is totally normal.

The tiredness does improve but slowly. We made a terrible mistake by taking a holiday to Italy...something I'd always wanted. .....just after radiotherapy finished. Disaster....I was always needing to sit down or go back to the accommodation  and sleep. Luckily my husband, who has been an insulin dependent diabetic  for over 35 years, is really understanding. Then I developed some feet and leg problems ( probably related to the chemo) which resulted in another operation and I have a lot of pain so that's when I'd love to say to people ' no....I'm not ok' but you're  so right...we don't , do we? We just get on with things the best we can!

It will get better. Some people do improve rapidly but everyone is different.Everything since the day of your diagnosis has been a shock to your system and a step into unknown territory.  It isn't really any wonder that sometimes the fatigue takes over. 

Don't despair....you are not alone. Hopefully you will soon feel much stronger and more like yourself but don't feel guilty if you don't.  This is a long road to recovery.

Love Karen

Thanks for your reply Karen it does help to know that someone understands.My family are very supportive its just my own pride that gives me the guilty feeling x 

I think sometimes people may say you look really well because they are relieved and pleased that you have come through treatment and are still here!  It takes a long time to recover but it’s impossible for people to understand how you are feeling unless they’ve been through it.  I sometimes joke that I may look ok but I feel 20 years older - actually it’s not really a joke.  Best wishes.

i'm really sorry to hear of your struggle.  When treatment is over it doesn't mean the impact is, everyone else can move on but you are left with all the physical, emotional and psychological impact. No way are you letting anyone down, you have been through a traumatic time so be kind to yourself and maybe when people say you look really well you could try telling them how you feel. 

Have you spoken to your breast care nurse about how you feel?  I have just been diagnosed for the second time so am at the beginning of the treatment journey and am thinking it may be a year out of my life before i have any sense of normality.

I wish you all the very best and hope you will be back to yourself very soon. Take care.

I’m sorry you are finding life in general hard. I get it, I really do. I finished treatment at the end of March and it has taken me til now to feel relatively fit. I have been tired, exhausted when trying so desperately to go out and about. I now am starting to do the stuff I want to....but....and it’s a really big but....I look okay, healthy even, my weight is now under control, my eyelashes are growing back as is my hair....but ... I’m am different, physically and mentally. I struggle each day to try and find myself....I’m scared....I’m high risk of recurrence...there is no way at the moment that I feel I can manage those emotions. I look normal....want to be normal but fundamentally am a little lost and quite scared....

The one thing I take from all of my friends here is.....that’s normal....I am not a freak just a worrier...I need to learn to take each day as it comes and be happy. It’s not easy but I have come to learn that it’s essential.....as I tell myself often ...deep breath....and keep dreaming! 

Hi Lgt

I'd like to start with a gentle hug

Please remember there is lots and lots going on and there has been from the moment you suspected all was not well or were faced unexpectedly with medical staff concerns.

So far on the roller coaster you have been getting on with the  doing of it and its only now when your not in acute crises that your body and mind can  draw breath as it were, and register lots of effects of the trauma and treatment.

Sometimes it's only a fair way down the track and when we are doing well, that our inner resources that have been stretched and strrrrretched...finally ping back and we feel exhausted and fragile and confused and weepy and short tempered etc etc.

It can be very unsettling when our calendars are no longer full of appointments and check ups and reviews, when our names were on many lists as a patient...now we are supposed to get on with normal stuff, but we are not 'just like everyone else'.

Its hard to hear ' you are looking well' as even if we are, it can feel like our experiences are being minimised or even erased, as if we have had our time in the spotlight and its over. 

Sometimes we don't know what's going on in our heads and bodies and and are not sure what we need to hear...and we are on the inside looking out...so maybe we can make some  allowances for those on the outside looking in. Maybe take from 'looking well' as 'you are amazing, I don't know how to say it or how you are doing it and I know it must still be really hard but I'm glad you're still around'.

Yeah...that's more credit than some deserve but the law of averages says we must all suffer some prats in our day 

Fatigue alone is huge to deal with so remember to congratulate yourself if you are out of bed  and wearing your own knickers 

Take care

Hi

I had cancer 12 years ago. There was care then for five years. Starting at appointments every three month, gradually reducing to nothing.I expected at that appointment to be normal except for two scars. How wrong I was. It was normal but a very different normal.

This time two weeks after surgery I'm told" ring if you need anything but we don't do follow up appointments"

How are you supposed to cope with that? I get the week in hospital is better in many ways, but the emotional support you get from those in your ward really can't be replaced by an iPad.

This stuff we are dealing with is massive, however old or however grounded or loved you are. 

Last time I felt like I was important and in need of care. This time I feel like a piece of meat on a conveyer belt. The routine is SO efficient. 

I'm a boldly,confident, intelligent woman and this leaves me at times like a quivering vegetable. 

So none of us should ever feel bad about asking for and expecting help. The help should be there from the NHS 24/7 and not just " Wednesday and Friday cos that's when I work"

Oh Silverberg .......I could have written your letter. We are so similar. I had breast cancer 18 years ago...just a mastectomy and Tamoxifen...but five days in hospital being looked after. Before we went home we already had the full results from Pathology. As you say very frequent clinic appointments for ages. This time aggressive tumour , in overnight and out. I had a wound infection so I went to clinic two or three times.  Saw Oncologist regularly as I had Chemo followed by Herceptin. This damaged my heart so I stopped after no 14 in May. Then referred to Cardiology. But my referral seems to have gone missing. I have been signed off by Oncology, we only have one bc nurse who is rushed off her feet so I’m on my own really trying to find out what’s going on. By the way I am 75 which doesn’t help.

The staff were all all lovely but understaffed and overworked.

Good Luck from another shivering vegetable.....a cabbage perhaps !

Hi Llottie

I'm 62 and just retired.

Hi little

And increasingly frustrated by this website. God knows I'm not the best with IT but the spell checker and the fact that the whole letter disappears if I move my tablet slightly off vertical do my head in.

Not sure I should say this but perhaps if we gave less to McMillan and spent more on NHS it might all be a bit more personal and less corperate. Personally I'd rather have a person to speak to and less shiny p.c. little booklets in fancy folders that are irrelevant 75 percent of the time.

To be told not to ring at the weekend because there's noone here isn't really what you want, especially when your boob is like a boulder, the alternative 4 hours in A and E in two different hospitals. Then to be sent home with codine to take with paracetamol. Or you can wait another three hours for morphine, but we can't drain it we don't have the skills. Can you wait till your appointment on Tuesday.