The last few months start.

3 minute read time.

FormerMember

2 Jul 2013

I'm not quite sure where to start. The history may not even be relevant. All I know is that my mum is heading home from an almost 3 month stint in hospital with the decision made that we're not going to pursue any further treatment - palliative chemo made her so poorly and being in hospital added to her ailments. I guess that means she is terminal now? Nobody seems to have said that to me, but that's what I guess it means.

It's been a tough year. Chemotherapy followed by Radiotherapy - according to the doctors and consultants it was a radical amount of treatment intended to be curative - unfortunately the tumour in her tongue is going nowhere. An operation is out of the question, so we're kind of all out of options.

In the middle of her radiotherapy we lost dad in September 2012. Complete surprise. No warning - nothing. I sometimes wonder how we got through it but a nurse at the hospital with dad once told me 'The world keeps turning my love - what are you going to do? Stand still and let everything pass you by? Or power on and taking on the world'. It's a very simple thing to think about but incredibly powerful.

Mum has not been right since dad died. She lost her best friend and soulmate - they had been together for 35 years or so, and had been through everything together. Horrendous family situations, raising three kids, having no money, making sure we were all able to live our lives the way we want to. I see her broken heart all over her face whenever we talk about dad. It breaks my heart too.

Now mum is coming home - essentially to die. It's as black and white as that. I feel so incredibly useless in all this. Geography is against me being 250 miles away. My sister lives closer - still almost two hours drive away. And my other sister in Australia. I don't know how they both do it. One of them in the thick of it with mum, day in day out. Speaking like a doctor / pharmacist / carer (depending on which day it is) with her own family to look after. The other sister miles away and totally removed from the situation but feeling so rotten for the distance and not being here. I feel utterly useless. I have come to terms with the fact that I am unable to do anything to stop / beat the cancer. Im not a scientist, a researcher etc - I am not a doctor, a nurse or anything like that. All I feel I can do is be there for people. Be there for my mum when I can. Be there for my sisters when I can.

I'm scared about her coming home. I'm scared of how this is all going to play out - what will happen to her physically? What will happen to her emotionally? How can I get her to talk to me about how she is feeling (she seems to have us all on lockdown at the moment, protecting us from everything as usual). How can I not lose my job and still be there for her (in fairness my boss is AMAZING and has not been anything but supportive - I am just always worried about letting him down and my team).

I cannot wait to get home this weekend and see her. I know half the situation is anxiety as I have not actually seen her for a couple of weeks. I know once I see her and assess the situation, I will know what needs to be done and can get it done. I am just starting to feel very all over the place with everything.

Has anyone else been in a similar situation? Any advice would be hugely appreciated.

FormerMember over 11 years ago

Hi Matt,

Welcome to the Online Community. I'm so sorry to hear that you've lost your dad, and that your mum is not able to have any further treatment. Feeling scared and helpless is completely normal under the circumstances, and it sounds as though you are doing a lot to support your mum and your sisters.

If you are looking for other people in similar situations, I'd really recommend joining some relevant groups on this site, as well as blogging. For example, we have groups called being a relative and supporting someone with incurable cancer.

You mention various questions about what will happen to your mum over the next few months. You might find it helpful to have a look at the end of life information over on the main Macmillan website.

You can also speak to one of our specialist nurses on the free Macmillan Support Line (0808 808 0000, Mon-Fri, 9am-8pm). They can provide support and information to answer your questions, help you make sure your mum is getting the support she needs at home, and they can also just be there if you need to talk.
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FormerMember over 11 years ago

Hi Matt,

I'm so sorry for your situation and where you find yourself. I have been there and it is just awful.

We found that no-one uses the word terminal, not unless you ask anyway. They only answered our questions, never volunteered information. We did know though that things were not good with dad and he would die very soon, so we were on a fast track programme to get him home. They were amazing at sorting everything out, even though it was Christmas week.

What happens next? When treatment finishes and the cancer really gets hold it will be quick. The key things now are to keep your mum comfortable and out of pain. There should be lots of help offered, district nurses or macmillan nurses, all the equipment/drugs you will need. You won't be alone. They are also very good at telling you when the end is near, I know it is a very sad time, but there is a certain level of control in her passing and you will be a huge part of that. Your mum will be comfortable and she'll have you all around her - she is a very lucky to leave in that way. I feel blessed to have been there with dad, it wasn't a horrible, scary experience like in the films, it was calm and really surreal experience, a chance to hold hands and say good bye - not many people get that chance.

With regards to work, I would use your holidays and take time off - you cannot afford to not be there. I'm sure your employer will continue to understand, particularly if they do not think it will be long.

It's very sad that your father has died during your mum's journey. I suspect she will be waiting to go, she will be pleased when the time comes I'm sure, and that will give you comfort. They say they see things toward the end, people waiting for them. If you read the 'end of life' section on here it is amazingly accurate, don't fear the end, try and embrace it because then your mum and dad are reunited and your mum isn't suffering anymore. My thoughts are with you xx
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FormerMember over 11 years ago

Thank you both for your replies - that page on end of life information is really helpful. It's exactly what I think I need to know - as scary as it all sounds.

I'm home with mum this weekend for a few days. She is sleeping a lot. But she seems comfortable and I am happy she has had some visitors despite struggling to speak really badly at the moment. Being home is the right place for her.

Thank you both again.
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