Worried about Mum

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1

Hi,

I’ve posted on here several times before. My Mum (who is 79) has mets in liver & lungs & hotspot in the rib. She’s been on Arimidex for 7 months, having had chemo first, followed by Tamoxifen. The onc says there is minimal progression, although there were some changes in some enzymes in her last blood test.

Mum has just been put on bio phos, which has helped to relieve some strange aches she had in the leg. She had a knee transplant 3 years ago but now says that the “good” knee is in real trouble.

What’s happening now is a combination of worrying things. She sleeps an awful lot during the day - she always used to nap a lot in the afternoons, from the age of about 55 onwards but now it’s a lot more. Is that old age or the result of medication or her condition? We don’t know.

Also, she has had lots of aches & pains in her neck, shoulders, ribs etc. WE don’t know if it’s due to Arimidex, arthritis or something else.

She has been going through some very depressed days. She has lost interest in everything. My parents have a lovely garden but she now says she can’t do anything in it as her bad knee hurts too much & she gets so tired so quickly. Now she doesn’t even go out to sit in the garden. She doesn’t even want to phone up her many brothers & sisters as she can’t seem to muster the effort to do so, though she speaks to them if they phone.

The onc said that her GP could refer her to a MacMillan nurse (1st time it was ever mentioned was last month). Dad contacted the GP who said he would set it up - and nothing! He called the surgery again to see if there was any progress & the GP said they had called a routine meeting with the nurse at the surgery & she had failed to turn up & hadn’t been seen since.

I think Mum would benefit from speaking to somebody who is not family, not a doctor & who understands what she is going through, preferably face to face as she’s too hard of hearing to do it over the phone & isn’t computer literate.

Is there any organisation out there that can help?

Also, if you have any ideas about what all these physical symptoms could be, please could you share them with me as the whole family is having sleepless nights and stressed days.

Thanks,

Psyche

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Hi Psyche

Could I suggest that you give the helpline her a ring and have a chat with one of the breast care nurses who I am sure will be able to support you through this. Calls to the helpline are free,
0808 800 6000 lines open Mon-Fri 9am - 5pm and Sat 9am - 2pm.

Hope this helps. Kind regards,
Jo, Facilitator

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Hi, back again. I didn’t phone the helpline, as it’s my Mum who needs the support & she would never ring, unfortunately.

Mum is not doing too well at the moment. Her arthritis in the knee has got a lot worse over this past fortnight. We don’t know whether it’s due to the bone phos she is taking or just normal wear & tear. To our knowledge, she has a BC hotspot in a rib, not anywhere else.

Saw her yesterday & since a fortnight ago, she seems to have become a tiny, bent old person, hobbling around on a stick.

Her state of mind is very worrying. She is definitely depressed & doesn’t see the point in living any more. Says she has no interest in anything & no enjoyment in anything either because of her “condition” as she calls BC & because of the continuous pain in her knees.

It upset me this morning when she said, because she believes she is going to die very soon “I deon’t want anybody to cry at my funeral because I’m so fed up with life that I want to go”.

This is really hard because although she has secondaries, they are not advanced, so potentially, she has life left in her.

It didn’t help that she had her first visit ever from a McMillan nurse on monday, who was accompanied by the District Nurse. We were inspired with confidence in them (not) when we read the DN notes afterwards & discovered that she had written that mum is taking Arimidex “for early onset dementia” - I ask you! As we know Arimidex isn’t for dementia & Mum hasn’t got dementia in any way, shape or form!!

Although physical symptoms & medication were discussed, emotional & psychological states were not & Mum would never have mentioned it. I wasn’t there during the meeting or I would have asked for some advice.

Anyway, I know there are telephone counselling services etc but Mum would never use them a) cos she’s quite deaf & has trouble hearing b) cos she’s of that generation who mends the body not the mind - you know, you just “get on with it”.

Trouble is, for the first time ever, she isn’t getting on with it. She’s turned her back on life when she needn’t.

Any advice at all would be most welcome.

Psyche