Breast cancer spread. a quick post.

Hello Busycaz

Thank you for taking the time to reach out, and share your Mum's cancer journey so far, she has has been through a lot!

I am sorry to hear that in 2019 she was given a stage 4 diagnosis, being told that your loved one has an incurable cancer is so scary 

There are other areas on this site that are specific for tips, advice and emotional support for you, such as The Carers Only forum or Supporting someone with incurable cancer 

There is also a couple of blogs that have been put together by our Macmillan team here Supporting yourself blog and Part Two which wil offer you other links and ideas to ensure that you are taking care of you whilst helping you Mum in every way you can.

Mum may wish to discuss how things are for her, outside of family and in a safe environment, the Macmillan Support Line  is somewhere that you or she can go to chat, off-load to people who do understand - available everyday 8am-8pm on 0808 808 00 00, there are various ways to get in touch, if you follow the link it will explain more.

I hear that you are saying that the support of your brothers is limited for various reasons, but I think it is important that you remember that you are one person, you will continue to do whatever you can to support Mum, and as long as you continue to have the valued support from your husband, everything you do will be good enough.

I am really sorry that Mum is now struggling, if she has been allocated a support nurse, she could reach out to that person as they may be able to offer some coping ideas, based on knowledge and experience. There are as I am sure your aware, toileting pads which can protect Mum from unexpected movements. I hope that some of the links above will provide you with the support you are looking for.

Good Luck.

Lowe'

Thank you so much for your reply.  It means a great deal.

Mum is struggling with losing control in all aspects, she is a lively woman who enjoys doing a lot, visiting friends, going shopping, walking her dog.

Shes angry and struggling with the thought covid guidelines are stopping her enjoying whatever time she has left.

She also has a real issue with being incontinent, and the thought people may need to help her with bodily functions.

She has had a few calls from the breast care team, and breast care nurses, which hopefully she will call as and when.

I feel like im on a cliff edge waiting to be pushed off, and im in no doubt others who are unwell and their loved ones feel exactly the same :/

In the meantime i am being a nagging daughter trying to get her to limit her activity so she is well for her mri.  And also im self isolating to make sure i am well enough to take her.

Everything is as clear as mud at the moment.

Hi Busycat,

It's a difficult time isn't it, there is definitely a need to be vigilant and ensure that you both keep safe, but hopefully Mum can still take her dog for a walk and get some exercise, there is nothing worse than being locked-down

Try to visualise turning yourself around, it is much too dangerous being on the cliff edge and if you fall, at least you will fall safely...tough as it is, we have to keep ourselves safe for ourselves and our loved ones.

I hope the MRI goes well. 

Stay safe

Lowe'

MRI showed cancer in her sacrum, left bony pelvis, lumber and thoracic. Its been a couple of months and my mum is getting so much more pain in her left hip bone.  I keep trying to tell her to get her pain relief sorted, but she has convinced herself the pain is down to a bad hip and is wanting a hip replacement....

She has a new oven she wont use as she doesnt want to get it dirty, and is trying to cut down sugar as she doesnt want to get diabetes.  

I am so frustrated, i tell her use her oven, eat the cake.  

I know she is probably burying her head in the sand and trying to focus on things she has control over.  

I know she is coping in her own way, but im so sad she will miss out on what she can do while focusing on things that may not help.

Its so hard to keep my mouth shut and just be there for her, everything i say is ignored.

I try not to get frustrated, but i so want her to get the most she can out of the time she has left.

I guess it isnt my choice :/

Hi Busycaz

Your Mum sounds absolutely lovely, and I smiled when you mentioned that she won't use her oven as she doesn't want to get it dirty, and she won't eat her cake because she doesn't want to get diabetes, I know it is in no way funny but it does show that she is a very determined character. 

It is frightening though, and I can see from what you have written that you are extremely saddened, but as you say, she is coping in her own way, and that is a good thing, because whilst she is coping, whilst she is soldering on as people within her generation do, she will not dwell to much on that which you are consumed by. 

My husband always says that he thinks it is harder for those without the diagnosis, and in some instances he is possibly right. But I do hope you can continue to contain your frustration, maybe try to see that for Mum, she is getting the most of the time she has, by pottering around and doing Her Thing?

It tough, but if Mum is smiling, smile with her, 

Take care x

Lowe'

Thank you Lowedal,

My mum makes me chuckle as well at times.  Her focus is on things she can change, which is fair tbh.

But mum isn't smiling :( And I am her go to person, the one she calls daily about pain etc, the one who has all her medical letters as she cant bare to have them, the one she relies on the make her appointments, find out info for.

This would be ok, but sadly i have a lot of things going on that i am being relied on by my children and grandchildren.  All very important situations as well.  (mental health/neglect to grand daughter/son in prison)

I am just struggling now, i keep asking mum to call macmillan so she has another outlet but she hasnt!  My advice is not going be perfect as im not medical/cancer specialist etc.

I am overwhelmed at the moment with so many people relying on me.  Im so sorry to vent, it makes me feel selfish!  This forum isnt a sounding board for frustrations. 

I'll try not to sound off to people who are in the same situation or worst.

Sending healing thoughts to you and Dal xx

Busycaz

Sorry that Mum is not smiling and there are demands on you that you are finding overwhelming, I understand that type of pressure.. I too have loads going on, and I know that at times it feels as if I might explode, maybe you feel somewhat similar.

I think this forum is for whatever it is you need it to be, sounding off is sometimes a good thing for all of us, as if we don't tip from our jug we have no room left for the more that will follow.

Please feel free to vent, even if you want to do that via PM, you are certainly not selfish.

What do you think Mum would say if you told her you have called Macmillan for help, if you told her that you want to ensure she gets the very best support and to do that, occasionally you need help with the helping? is that a conversation that is possible?

Thank you for your healing thoughts, we are sending out to you and Mum also, times like these we can use all the help there is.

You are not alone Caz, we may only be communicating virtually, but we are here.

Take Care

Lowe'

Just a small update....mum has just had a ct and bone scan as she is willing to have a palliative dose of radiotherapy in her sacrum, the pain is bad, and she is willing to have stomach upsets versus pain.  She was told at bone scan it also looks like she has a leg fracture....(she did fall a few weeks ago but it hasn't hurt?!?!?)

She has been feeling really ill in the morning the last couple of months. And I know this is playing on her mind.

Her personality is slowly changing, the day of the bone scan she refused to hang about for any results as she had been there a few hours.  She said to me that if anything was broke she wouldnt have anything done as that part wasn't in pain.

I have noticed she is becoming more stubborn and aggressive.  All part and parcel of how she feels as well as her illness.  Maybe also the only things she feels she has control over?  I now look after her paperwork as she finds it to much.  

I do have support from my husband and my eldest daughter, but even so I feel so alone.  The foreseeable future looms over me.

The closest hospice have now been in touch, so hopefully I can chat to them and get ways of coping going forward.

On top of this my mother in law has been making issues, and refusing to buy small birthday gifts for the great grandchildren due to no thanks from their parents. (Who have had a lot going on) and with covid things have been more difficult.

Thinking of everyone here, and wishing everyone all the best that can happen xxx

Weird limbo stage.......mum is finally trying all pain meds as she is really struggling.  Her appetite and capability to eat are both very poor so she isnt eating much at all.  Energy wise, after getting up, having a quick wash and feeding her dog she needs to rest.

To look at her, if you didn't know she was terminal you would never guess.  

In the past two weeks things seem to have escalated, but even so she still seems so well, given her illness.

I am so emotionally tired.  Selfishly I am scared this part of the journey seems never ending

And while that makes me feel selfish, I know my mum is no longer living her life as she wants....