Mum diagnosed with two primary cancers that have metastasised to other places

Hi Pansy

Very sorry to have to meet you like this and very sorry to hear of your & your Mum’s situation.

I can only tell you what I have decided and my own reasoning behind it – I don’t know if it will be of any use to you but…

From the very beginning I was very quickly aware of what would happen to me and the probable timescale – also, having smoked until three years prior to diagnosis, I kind of knew that this cancer was likely in my future from some time ago…

And so, I was over the “Why me?” & all of the anger etc.. within a few minutes of being told and right there & then I decided that it would only change me in so much as I would get fully on board with my treatment and also keep myself as fit as poss, eat as healthily as poss and make my oncs aware that I would be prepared to try ANY treatment they thought would prolong my life.

That approach is currently working (touchwood…) for me and long(ish) may it continue… 9 month scans in Jan ’21 which is not bad from an initial prognosis of 2-4 weeks.

So I understand how your Mum has come to terms with her situation so quickly, whatever her own reasons may be…

As you have been watching in the wings for some time you will know that there will be others coming along with sage and relevant advice soon enough but have you been referred to a specialist Cancer Nurse or spoken to MacMillan direct? They will have a wealth of relevant knowledge, experience and advice for excellent care for both of you and anyone else that needs it.

In terms of prognosis, I suspect that the medics would want to investigate quite a bit more which sounds like something your Mum will probably not countenance. In any case, you must already be aware that progs are incredibly imprecise and there are many, many souls on this very website that have far outlived their “Sell-by date”…

And so we come to my point which is that your Mum appears to have decided to carry on as normal so maybe you should at least try to do so as well bringing a semblance of normality (which is what a lot of us crave I suspect)… Maybe you could work part-time or from home?

I really hope you find some answers, in the meantime…

Stay Strong

SiT

Hi Pansy82,

Such a horrible & heartbreaking time for you watching your mum go through this. She sounds head strong to refuse treatment and for you & your brother to support her wishes is admirable. She obviously means the world to you if you’ve already taken so much time off work to be with her! My one huge regret was I wasn’t there for my mum when she died, she was the same age as your mum, as I had just returned to work after having a long time off with my  surgery & recovery. Had I known she was near the end my priorities would have been different. I put my job before my mum but the reality is I didn’t know or see the signs. We don’t have crystal balls and we still have to live. I’m sure your mum appreciates everything you’re doing for her now. Has she been assigned a nurse you can speak to?

My mum always tried to play things down and didn’t let on how unwell she actually was & she knew she was near the end and confided in her friend and not us. I think I was also in denial believing she could carry on as she was. Sorry I’m not being very helpful but it’s a tough one to call. Looking back the tale tale signs were she had stopped eating but would fib & tell me she was eating.I did her shopping and the last few weeks noticed I was throwing food away that had gone out of date. Her appetite decreased. She was adamant that she wouldn’t go into hospital or have carers in the house. 
Does your mum need you to prepare her meals and do chores or can she manage this herself at the moment? Are you able to share looking after her with other family members so you can return to work?

I think you need to speak to someone from her team to help you move forward with planning the coming months.

I wish you and your mum all the very best. 

Keep strong. 
Fi xx

Hi  and welcome to the group, but so sorry to hear of your mums diagnoses. I think SIT and little-fi have already given some good advice, but I’d like to give my thoughts too. Some people don’t want to know a time scale, some that have asked wish that they hadn’t, because they say that becomes the only thing they can think about. I personally wouldn’t want to know either, as I would want to live each day as best as I could.  I think that as the MDT nurse said that it may not be too long is a good indication. My mum passed away from ovarian cancer at the age of 65, so I do know how anguished you feel right now. My mum tried to stay home, but went into the hospice the day before she passed away. I,like little-fi have regret. I wanted to stay with her that night, but the nurse told me to go home and get some rest, there would ample opportunity to stay later in the week. My mum passed away at 630 the next morning. You see, we never really know when that time will come, but you will never get this time back.  Have you looked to see what benefits you would be entitled too if you stayed home. Carers allowance for instance. I would advice you to call the Macmillan help line and speak to a financial advisor. They will be able to tell you about all the benefits you may be entitled too. You can call 0808 808 00 00.  They really are extremely helpful. 

You are most welcome to come here anytime to off load, or brain dump as you call it. There is always someone hear to talk too. You may also want to look at joining the Supporting someone with incurable cancer forum as there are many people there in a similar situation to yourself.  

Take care x 

Hi SiT,

Thank you for your message and being happy to share your experience. I am sorry to hear what you are going through but what great news that you are awaiting 9 month scans after receiving such a short original prognosis. Your positive, healthy outlook must certainly have something to do with it.

My little mum has a very interesting view of the world and feels like her time is done so that is why she doesn't want to be poorly or scared of treatment to prolong her life, she said she would just like  nature to take it's course. She is 72 going on 202.....very old fashioned. At first I was upset that she didn't want to try everything to live as long as possible and be with us, but now I absolutely respect her decision and understand her many reasons for being at peace with what will happen in the months ahead.

You are absolutely right that whilst mum wants things to be as normal as possible then i should do that. I feel embarrassed and weak that I am struggling to carry on as 'normal' when I know what is to come with mum. With the help and advice from lovely people like yourself in this community I am thinking of a little plan to at least do some work, some how. I am a school leader so it is very difficult to consider going back to such a full time full pressured job, on top of all the pandemic pressures. I will see in the new year if I can suggest a new role and possibly part time so I can not be under the same pressures but be there as much as possible for my mum. 

Thank you so much again for your message. You stay strong and positive too xx

Hi Fi,

I am so sorry to hear that you have lost your lovely mum and that you have also had your own illness to cope with. 

I am sorry you feel regret at not being there at the end for your mum. I believe the world works in mysterious ways and there are always reasons for why things turn out the way they do. My mum is already planting seeds for whether we end up being by her side or not when she passes. She says "just in case you are not there at my side at the end, don't be upset because I would find it too difficult to let go if you were next to me so it was the right thing or I don't want that to be your final memory" or "if you are meant to be by my side and if it is comforting to us both then it will happen that way". She is a wise woman and her comments and outlook do make me laugh at times, despite how blunt and upsetting they can sometimes be.

What makes me worry is that it is hard to notice changes. Reason being is because she has suffered for over 10 year with arthritis and has never really been out and about. Her life routine is to wake up, sit reading her papers, little bit of house work followed by an afternoon nap. Wake up, do some puzzles then watch her soaps in the evening. So that type of routine still seems pretty much the same even if she is becoming more poorly. Her appetite is lessening but she eats at least one substantial meal per day, she is achy (but she says thats arthritis), she is very breathless and and coughs up a lot of mucus. A district nurse comes to check on her but as mum is telling her there are no changes in how she feels they are coming about once every 3 weeks. I worry that mum is playing things down.....or I am just worrying too much and need to be more positive. She can do things for herself but more and more she says she can't be bothered. I am her main carer (with my wife) and mums wish is to remain at home until the end.

I will take everyone's advice and give the specialist nurse a call. I haven't done it since September because I worry my mum won't be happy if she finds out. 

I think we will aim to have a lovely Christmas and I will address whatever my work needs may be in the new year. the one thing I think I am 100% sure of is that I will not be able to cope with teaching full time whilst caring for mum so maybe I will negotiate a change of role or go part time.

I really do appreciate you reaching out to me to share your experience and hope you are doing ok. Thanks so much xx

Hi Chelle,

Thanks for your message and sharing some of your experience. I am so sorry for your loss of your lovely mum. See my reply to Fi with regards to regret at not being there at the end. I hope it offers support rather than further upset. It is the advice I am currently getting from my mum, like she is trying to prepare me for all eventualities. 

You are so right about it probably being best not knowing timescales, if it was me who had the diagnosis I would not want to know so I am very supportive of mums decision and right to not want to know. I guess its my brother and I who feel differently just so we can plan ahead to be off work and plan financially for that. Even whilst typing this I feel awful feeling the need to plan ahead for something so awful. I guess it is just wanting to try and make sure we are here and don't run out of sick leave to be with her. But Chelle, you are so right when you say we can just never really know from both your experience and that of Fi's.

I am really grateful to you and others who have taken the time to message. This really is a wonderfully supportive community.

Take care xx