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

Hi 

https://www.macmillan.org.uk/cancer-information-and-support/advanced-cancer

Big welcome to the forum . I am so glad you reached out . I have added a booklet which you might find a helpful read . I need to pop out so will be back to reply properly to you but wanted to welcome and support you . 
Take care ,

Court 

Hi , (((hugs))) firstly.

Would your employer be flexible on hours? I think from your current actions, you would prefer to be off work with your mum, understandable. But I have a slight niggle that you might be better taking a few hours out , maybe just a couple of half days per week going into work. The reasons being, in no particular order, are: you get a break, your mum does (she might need a small me time space occasionally), you are keeping your options open re work, and (unfortunately) future proofing yourself, work can support you and know you are coming back. 

There will be no right answer, but you need to be able to look back and think I did ok, and not wish you'd done something else. 

Take care

Hi ,

Really sorry to hear about your  mum’s situation .

She sounds as though she is taking the lead in her care pathway and giving everyone a sense of the direction she wishes . That does give you the opportunity to plan for the future . I included the leaflet as the second part of it addressed symptom / pain management and how to access resources. 
I am going to suggest you contact the Macmillan helpline as they may be able to talk you through the end of life timescales better than I could particularly if there is two primary cancers involved . Did they say what other primary it might be ? They will also be able to chat through the balance of keeping your own life manageable whilst attending to your mum . In my previous job I was an occupational therapist and I am a big believer in addressing the needs of the carer also . You very much matter , not just in terms of the care you will continue to give your mum but also because your health and well-being is important. Including the roof over your head . Keeping some work going whilst assessing your mum’s needs can be achievable for some . Is your work supportive ? Would they allow you to assess as required? If your mum is well just now it is very acceptable to have time away from her . I have wrestled with these issues at the start of my mum’s diagnosis. She selected treatment which took her on a different path but at the beginning we had to consider all that you are doing and I moved her in with me . After six months she then went home and we adjusted my input as required . 

I did have plans in my head of the support she would potentially need and how to access that . I wanted to be there but also acknowledge that it was ok to allow some more independent living when she was in a better place .

The staff may be able to give you signs of when she is reaching a tipping point and when you need to escalate her care needs . 
The helpline number is 0808 808 0000. 
Please feel free to ask anything or even just to have a safe place to off load . That’s what we are here for .

Take care ,

Court 

Hi Pansy 82 I can only say I really feel for you. I have been o this site with my cancer diognoised which has had a good response. What I might I’ve said I have someone close that is really bad and it is my sister. This is. Why my anxiety has and is still bad. Like your mum my sister has been calm and excepting. I’m finding every day an absolute struggle. The hospital phoned me a couple of days after my scans to say I was a very good response to treatment. When my sister asked I felt awful telling her. She will not let extended family know, so when cousins phone to ask how I am I have to be on my guard not to trip up. I have to respect her choice. We both received our diognoises  through 2 weeks apart, she had bowel cancer but after her scans they found it on her pancreas and kidney it has spread to her liver. So when I had my consultation I’m March because she my letter for furthe4 to ets was two w elks after my siste r told me about herself, I had to wait until June because of COVID. I only told my husband about he future 5est letter. Then because not many people were attending hospital  scans and everything was done quick and I had stage 2 m/o N/o. Op cancellehad chemoradiation for 5 weeks. . Sorry I meant to say that we both got diugnoised from the bowel test, my sister or myself had no symptoms. So thank yo everyone who has replied to me on this site. I I hope you can understand why I  am so anxious. So .Pancy it’s words cannot expess the feelings. It’s the shock and just utter disbelief. My heart goes out to you and your brother, and I send has much love and kindness has I can. Love Nelly 55

Sorry for spelling mistakes I left my glasses down stairs. I admire you moving in with your mum, is your work understanding?  We are from London but my sister lives in Hastings, her daughter still live in London. She goes down has often has she can but COVID restrictions make things so hard. I speak to her most day by phone. Her daughter has two children 9 and 7 and she thinks she needs to tell them.  My sister has got weaker. In the last couple of weeks. You said your head is a mess have you got close people to confide in? Are you able to work from home? I saw that Court gave you of the Macmillan number, if you haven’t already please use them. I have regularly. My sister never lets on her feeling which is hard unlike me I blab and cry all over the place. Would your speak to a Macmillian nurse.? All I can say is take care.

Hi Gemmary,

Thanks for your message. I think your suggestion of doing a couple of days here and there may be the best option whilst my mum is quite stable. I am a teacher with quite a few responsibilities so there are many work pressures too. I went to work in September to ensure school was ready for the covid bubbles, systems and procedures. What was vey difficult is once you are in work/school you are deemed fit for work if you go in and there isn't much room for flexibility, if you're in, you're in type of approach. I went off near the end of September and practically had a break down. I just needed to be off with mum and for my own mental health as I just don't think it is possible to be there full time for mum and do a full time serious job. My current employers have basically left me alone, just one or two catch up phonecalls. I think in January I may negotiate a change of role and maybe part time work whilst things and timings are so uncertain with mum. Who knows if it is the right thing to do but hopefully I will always be content that I made decisions with mums best interests at heart.

Thanks again for your message and hugs right back at you x

Hi Court,

Thank you for reaching out to me, it's much appreciated. I am sorry to read what you have also been experiencing.

I am in a leadership position within a school so it is very difficult. I have been supported in the sense of I've been left alone whilst I am off at the moment but I do not know their thoughts of my return. I don't think I am in the sort of position that allows for me to just come and go on a part time basis really. It is an all in or all out sort of role, plus children need consistency too on top of everything else schools are dealing with. The wider organisation I am employed by are looking into helping me in the new year by offering me a position that would be three days per week. This would be more consultative work and take me away from the day to day pressures of school. So that could be a very sensible option in the short term. I just don't trust any decisions I am potentially about to make in the near future.

Mum's two primary's are lung and bowel. Plus there are mets on liver and adrenal glands. Who knows the true extent of it as she won't allow the medics to investigate. Her mantra is "don't poke a sleeping tiger". We do have our moments of laughter about how head strong she is. What worries me is that I might be missing key symptoms because mum has always lived with significant arthritis pain anyway. I worry she is not telling us the truth about how she feels and what is going on with her body (even though she says she is telling us the truth). It is like she is in denial, she coughs up a lot of mucus and is always breathless (she says this is her bad sinuses), she has more whole body pain (she insists its her arthritis), her appetite isn't what it was (she says that natural with old age). I love that she is positive and not linking anything to cancer but naturally it just all has me on edge. She doesn't really want to speak to anyone about cancer support as she says ignorance is bliss and she doesn't want to know anything. She really doesn't know a thing because she doesn't know how to use the internet so doesn't read up on anything.

The macmillan lung nurse who liaised with me during diagnosis did leave me her number so I should give her a call. I just haven't because I know my mum won't be happy if I am speaking to medics behind her back.

Thank you for your kind words, advice and sharing the booklet too, I'll take a read now. 

I hope I can offer help and advice the same way you and other lovely people have offered it to me xx

Hi Nelly,

I am so sorry to read your news of what you are going through yourself but also how serious it is with your sister. Sending you many hugs!! 

I absolutely empathise with you when you say every day is a struggle at the moment. I don't know how to function other than to be practical and strong around my mum. When I am away from her or even think of the possibility of returning to work at some point, I just don't know how I would concentrate and be there for other people and basically put on an act that I am happy in front of children I teach or adults I support.

I've spoken about my mum being head strong and very accepting of her decisions. Whilst that was difficult at the beginning, I am managing to find comfort now.....with her help and reasoning of course. I guess when prognosis isn't good then the one thing my mum has total control over is her decisions over who should know what, what she does and does not want to happen to her etc etc. She keeps reminding me that in future I can always look back and know that she did it her way and she was very happy and content with that.

I certainly feel like since posting on here and receiving lovely messages that I have my own little plan of action of what to do this week in terms of contacting macmillan, the helpline and possibly organising future part time work (if i can even face that).

I will certainly aim to keep in touch with people in the community now. Please do keep in touch so you also have extra support with what you are going through. Sending you lots of love. Take care xx