Worried about my Mum

Hi there,

So sorry to hear about your mum and that she can't have the surgery. My wife (48) did have surgery in July last year and then radio and chemotherapy. The radiotherapy and chemotherapy, whilst not curative, can be very effective but obviously have more to do if the tumour is still intact.

The radiotherapy can be pretty tiring. Just the toing and froing to the hospital and the emotion of it all really fatigued my wife.

The chemotherapy has gone pretty smoothly. There was some initial nausea but we changed anti-sickness meds and that was fixed. Other than that it's just been more fatigue which isn't great but could be worse.

In your mum's case and given her age and current situation I think you'll need to stay in regular contact with the Clinical Nurse Specialist so you can report any worsening symptoms and decide with the oncologist whether further treatment is beneficial.

Sorry to not be more help. It's just awful what it does to our loved ones.

It’s always good to talk so you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Take care of yourself through all this. 

Chris 

Hi and thank you Chris for replying. 

Yes its been really tough going and i feel completely heart broken seeing my poor Mum going through what she's going through. Ive been with her today as she's in hospital and has been in bed for 6 weeks now since she was first taken in as she hasn't got the strength to walk so can't be at home as she is way to weak. 

I have been asked to meet with a clinical nurse and an oncologist tomorrow as they want to discuss her treatment plan with me, so hopefully now things will start to move forward a little. Its just seeing my Mum so weak i really think that chemo and radiotherapy is going to make her feel a whole lot worse than she does at the moment. I will be asking lots of questions. 

Im sorry that your wife is going through similar to my Mum, so i hope that she is getting on okay with her chemo and radiotherapy and feeling some benefits from it as ive read it can be very tiring and make you quite sick. 

Take care of yourself too and thanks again - its nice to connect with people that i can talk to. 

Pat 

HI CatNutt

a warm welcome to the group. So sorry to hear about all that your mum is going through.

As Chris has already said, the doctors wouldn't have suggested the radiotherapy and chemo if they didn't think it would help. Yes it's tiring but the other symptoms can be managed. 

In our case, my husband had 6 weeks of oral chemo/radiotherapy in combination. He was given strong anti-sickness pills to take for the first few days but after that he didn't need any anti-sickness medication for the remainder of the time. The routine for us was blood work on a Monday to confirm he was ok to have the chemo drugs then the prescription was issued weekly on a Tuesday. He was also given steroids to help reduce any swelling in the brain. The fatigue lasted for about a month after the treatment finished but it was enough to keep things stable, in our case for about two years. He was offered additional chemo only but he declined that option.

The treatment might also alter her sense of taste. He went off creamy and cheesy things for a while but that sorted itself after a few weeks,

This group is a safe and supportive space so please reach out anytime. As you've already seen there's always someone about to listen who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone.

Please also make sure you take care of yourself. Taking some "me time" isn't selfish, its essential to help you keep your wee batteries charged. I'll not lie, this is a gruelling emotional roller coaster ride but you will get through it. 

For now though I'm sending you a huge virtual hug. Stay strong. Remember to breathe.

love n hugs

Wee Me xx

Hi and thank you Wee Me for replying. 

I just feel lost and its so sad to see my Mum so weak and unable to do anything for herself, its heartbreaking. 

Im just worried that the chemo and radiotherapy will be to much for her and make her feel even worse than she is now. 
I know that she will remain in hospital for the foreseeable and this is really affecting her mental health as she tells me she 'just wants to die'

Im hoping i will get some positive news tomorrow as to where we go from here and be told of her treatment plan. 

Im sorry that you and your husband have been going through the same distressing times - im happy that your husband seems to be coping okay tho which is the main thing and he is doing okay within himself. 

Its just the not knowing what is going to happen which is affecting me the most, i love my Mum dearly and have been trying to keep very strong and positive but it is also emotionally draining as you must know all to well. 

You sound like a very lovely person with a lot of love and kindness in your heart. 

Thank you again - im just living day by day at the moment - and hoping that things will improve a bit for my Mum. 

Take care - Pat. 

hope you get some answers tomorrow and  at the very least a plan to work to. I find that "not knowing" is a 1000 times worse than "knowing".

Stay strong.

love n hugs

Wee Me xx

Thank you again and yes its the not knowing which is definitely the worse thing so im hoping there will be at least a glimmer of hope tomorrow when i speak with the Oncologist as ive noticed her symptoms are getting much worse even from day to day, some days are good and some aren't so great. 

Stay strong too 

love and hugs xx 

Pat 

Hi there i just thought id let you know how the meeting went with the Oncologist this morning.

They are going to do some rehabilitation with my Mum starting next week so to get her strength back up and get her out of bed learning to walk again etc as they feel she's to weak at present to have any chemo or radiotherapy as it will do her more harm than good in her current condition. 

They are going to see how this goes then we have another meeting in 2 weeks to discuss possible treatment or if they feel she hasn't improved sadly it will be palliative care and with that her outlook isn't looking to great. 

I know they are doing everything possible for my Mum and i do really feel grateful as she's in the best hands. 

Its such a sad journey tho and i still cant quite get my head around it all. 

Take care - love and hugs.

Pat xx

Hey Pat,

I'm sorry to read all that you are going through. It sounds like your mum is getting really good care. I hope the physio is effective. My wife saw a neurophysio for a while and she was incredibly helpful. She really helped us to understand the challenges Fi was having and give us strategies to maintain her independence as long as possible.

I'm sure you feel like you are in a proper whirlwind at the moment. I hope things settle down for a bit. Keep us posted.

Don't forget to take care of you. 

Pete

Hi Pete 

Thank you so much, i was encouraged at what you said about your wife seeing a neurophysio it sounded like it was really helpful for your wife and yes it must have been very challenging for her but also beneficial to help her gain some independence. 

My Mum unfortunately has been in bed now for around 6 weeks since her admittance to hospital, she had a biopsy around 3 weeks ago so has not been able to do much due to recovering from her op.

She was offered physio however before her op but declined saying that she couldn't stand up and it was to much, so were now in the position where she is a lot weaker and sleeps a lot of the time. 

I really do hope that she will be able to gain some strength back in her legs and even just walking from her bed to a chair with encouragement would be a help but i fear she has been in bed to long so for that to happen as it will take a lot of her energy. 

Hearing today tho that they might have to consider palliative care was very crushing as from the outset we've always hoped that there was some sort of light at the end of this awfully dark tunnel. 

Im keeping it together tho and trying to put on a brave face (as you do) and trying to keep happy for my Mum. 

I will keep you posted and its nice to chat with someone that understands. 

Take care of yourself too. 

Pat x 

Hey Pat,

I suspect you are reading the situation quite well.  It will be hard for your mum to regain much from where she is, at her age and with all the challenges she has, but sometimes something quite small can make a really big difference... so who knows?  

I hear what you are saying about palliative care.  Every change feels huge - but that one especially.  Are you looking after her at home or is she in hospital still?  I was looking after Fi at home and really struggling.  The referral to the local hospice was a game changer for me.  I continued to look after her at home, but I had a number to call if I needed advice, or a doctor or nurse visit, or just reassurance.  They also helped me with paperwork and sorted out carers when I needed them (we were a bit stubborn and slow on that one).  Oh - and sorted out counselling for us.  So... upsetting as it is, try not to resist the transition - you need all the help you can get.

It feels awful - you are going to need strength you didn't know you had to get through this.  There's no sugar coating it.  But you will get through it.  The palliative care specialists know what they are doing and, when she needs them, they (with you) will make sure that she is kept pain-free and peaceful.  

So you keep doing what you are doing.  Put on a brave face for mum - keep her as happy as you can.  Find friends  and family you can talk to about how you are really feeling.  Make sure that you have as much support as you can get to help you get through the bumps.  Make sure you have opportunities to get away from the situation.  And please keep talking on here.

Big hug...

Pete