Feeling very low :(

Hi ladies

I am feeling so low at the moment. I finished my chemo in April, but still have a number of problems resulting from my cancer. I tried talking to the breast nurses but they have told me I am now discharged by the oncologist so go and see my gp. Every time I see the gp he says see the oncologist.

I feel completely lost and exhausted. From the moment I found the lump getting treatment has been an uphill battle. I am feeling really beaten at the moment.

Emxx

 

Hi Em…it is so hard after treatment ends, and it is quite natural to feel ‘dumped’ as for months you life/body was taken over by the hospital.  The article in the link below, although quite a long read, may be of some help?  I certainly dip in and out (finished my treatment over 3 years ago) when I have wobbles.  Thankfully very rare nowadays :slight_smile:

 

cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf

 

I thought that post-cancer support was shared care between the hospital and your GP and you really shouldn’t be fobbed off or bounced around!  Do you have a MacMillan service or similar locally…if so it might be worth talking to them to see what they suggest to get the support you need.

 

Hopefully the article may reassure you that it is OK to feel as you do, as you have been through a lot both physically and emotionally. 

 

Please persevere with your medics to get what you need.  

 

Be kind to yourself and take care, J x

Oh em, I feel for you. I finished chemo in April too but went on to have recon and rads so treatment ended July. My onc told me I should be seen by him or the surgeon every 4 months for the first year. So you need to push if you have any concerns.

I’ve just started a 6 week HOPE course run Macmillan to help cancer patients move forward. They run them nationwide like the bcc moving forward course, perhaps it would help you to join up and talk to others? X

Hi Em

 

I am very sorry to hear that you are feeling low but it is good that you have been discharged. It is a bit difficult to advise you what to do without knowing exactly what the problems you mention are. Sometimes it is necessary to be a bit more assertive so when you next visit your surgery ask to see a different doctor and do mention your exhaustion and that you are feeling down as the GP may be able to prescribe something to help. Are you certain that you are eating properly and getting enough rest? I think we all tend to assume that once treatment is finished we can skip happily out of the hospital and just pick up exactly where we left off but it takes time to fully recover and I bet quite a few of us felt a bit ‘lost’ after being discharged. No doubt other forum members will soon be along with their own suggestions but in the meantime try to take things easy and don’t be hard on yourself!  Thank goodness for this forum eh?  PS If you want to PM me you can.

 

Big hugs to you (((xxx)))

 

 

Thank you for the replies.

I have downloaded the piece you posted, thank you sameoldme, and wil give it a read (its very long! :slight_smile: ). I’m glad to hear your wobbles are rare these days.

I have looked at the Moving Forward courses, Riversidedawn, but I’m not very good at going places by myself, especially as the nearest one to me is still quite a way away. I hope your recon and rads went well and you are doing ok.

I think a big part of the problem is that I’m not skipping anywhere at the moment, Feistyflora. I have lymphedema from my surgery that can’t be treated at the moment because I have a blood clot from my picc line that won’t go, even after 8 months of heparin. And I am waiting to see a cardiologist as my heart has been enlarged and causing problems since the chemo. On top of that I have quite bad side effects from exemestane - very frequent hot flushes are making my palpitaions worse, my joints are painful and swollen and I don’t sleep more than 3 hours a night.

I have been treated at 4 different hospitals (cardiologist will make 5), and seen a total of 7 breast surgeons and 6 oncologists. Not exactly continuity of care. I think you are right and I’m just exhausted and probably expecting too much too soon. 

All the times I was at the hospital I saw so many really poorly people and I always felt like a fraud, like I wasn’t really sick like them. I don’t think I know if I’m coming or going at the moment.

Thank you again for your replies. Big hugs.

Emxx

 

Hi Em,
Big hugs for you, what a stinker of a time you have had.
As my active treatment finished i was placed ina self care group for 5 years with open access to my onc via the breast care nurses. I have nit had the extent of treatment and complications you have had, but i have seen my onc since as my GP felt unable to manage the medication adjustment i was requesting. I was horribly fatigued post surgeries and rads, and have sryggled with anastrazole. Thru these times my team was a constant, though my surgeon has now moved on.
When so challenged it is so hard to stand up for your needs. Do you have a partner or good friend who goes to appts with you ? if you are in Berkshire, there is a fabulous closed facebook group, offering support.
Given you tiredness and other complications i would make regular appts with your GP, ask about NICE guidelines for managing fatigue, and if your GP says you need to see your onc ask the GP to formally refer you back as you feel like a ping ping ball.
Sending more hugs and best wishes,
LL xx

Thanks for all your replies.

I saw the breast surgeon last week and he doesn’t want to see me for a year as I cannot have any reconstruction at the moment with the way things are. So I saw my gp yesterday and he couldn’t see that any plan has been made for any follow up care, so he has written to the oncologist to ask him to see me again. Hopefully I will get an appointment soon.

One or other of my daughters always come with me, but they are only in their early twenties and aren’t much better than me at being forceful! I might ask about some counselling as I feel that that might help.

Thank you for all the support ladies.

Emxx

Counselling is a really good idea em. Unfortunately waiting lists are ridiculous. I saw my gp in February, got antidepressants and sleeping tablets then it was June before I got an assessment from the GPS mental health person, and only yesterday I got a call from the mental health service for another assessment to decide what sort of treatment I need - now another long wait to see someone!! It’s crazy!

Do you do any sort of relaxation, deep breathing or meditation? That might help you balance your exhaustion and make you feel more in control x

Hi Riversidedawn
I’m sorry that you are having such a long wait to get help :frowning: So much for improving access to talking therapies.
I don’t really do anything to relax! We are about to move house again for the second time in a year and sometimes I think it is only the fact I am so tense that holds me together at all :slight_smile: I will work on that - might help me sleep too.
I’m sorry you are still up at this time too and hope you get some rest.
Take care.
Emxx

Hi Em,

I saw this and just wanted to respond it is perfectly natural to feel this way, why don’t you try mcmillian nurses telephone line and speak there they listen and can give some pointers this helped me.

Also there is a service called someone like me where you have a buddy either by email or call run by breast cancer.

Hope this helps a little , it will take I just recently finished and experienced a dip last week…

K ? x

Feeling really rubbish just now. But no helplines open except Samaritan’s.

Really busy day with kids from 6.30am, qui k catch up with a friend after school run then Macmillan Hope course 10-12/30 (very food but tiring).

Home for lunch, washing, quick rest before after school careers evening, back to make dinner. By now but totally exhausted and ready for bed;

Kids sit down for dinner whilst I sort laundry, come back into kitchen to find husband home from work tucking in to dinner “you not eating darling?”, " no, I was waiting for you!;/)

I Just don’t know why I bother. So fed up with being housemaid and nanny!;;!;

The samaritans will listen and soothe, i have in terrible times rung them.
Big hugs for you, can you find a quiet area for yourself and a book, or some wine, or a lovely bath ?
Thinking of you doing a great job in difficult times x x
LL xx

Hi Guys

Thank you so much for all the replies. Whilst it is horrible to know there are others out there who are also feeling low, it does help to know that I am not alone and that maybe it is pretty common to feel like this after treatment.

Riversidedawn, I hope you are feeling better (and more appreciated!) today. Take care.

Emxx