Mum diagnosed with terminal cancer

Terminal illness
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Just a brief background - I am originally from Germany but moved to the UK 20 years ago. Two weeks ago my Mum has been diagnosed with cancer, and we have been told it’s terminal - chemo will just be done to prolong life. Since then they are doing a million tests to find the source of the cancer - next Monday she has an appointment with her team to discuss treatment options, and I am hoping to get at least a rough idea about life expectancy. But as the cancer has spread already it doesn’t sound good.

Obviously with both countries being in Covid lockdown there is no way I can be with her right now until restrictions are (maybe?) eased in December. Any visit will have to be two weeks because the first week will have to be quarantine in an airbnb (the logistics are horrible). In normal times I would fly home every three weeks and spend a week with her, as I fully understand that every day is precious now - but being stuck here is so hard. On the other hand I am so scared to see her and my stepdad (who has fallen to pieces) and I just don’t know how I am going to cope with what’s coming the next few months.

Partly I am still in denial I think - pushing things aside and getting on with work and daily life, as we don’t have all facts yet - but I also know the head in the sand approach is not healthy and sustainable.

The hardest thing is that all I can literally do is wait - for lockdown to be lifted, to find out if I can go and see her in December, if I will have to wait for January, what the time span is she has left…and it’s ripping me apart.

I just needed to get it all out, and would appreciate any support on how to deal with this feeling of being totally helpless and out of control…

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Dear @Romily, I am so sorry to read that your lovely mum is sick and might not have much time to live. It must be so difficult for you to not be able to be with her at this moment. I have no idea on how you can cope in such a situation, just wanted to say that I am thinking of you and your family. Please take care.

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Dear Romily,
You are finding yourself in a very difficult position, being stuck here because of Covid when you really want to be with your mum at this time. I understand, because like you, I am not British but moved here from Holland in 1996. When first my dad and a year later my mum had serious health problems, I tried to get over as much as possible. There were times when I could not be there, and that was always very hard, but we always stayed in touch as much as posible.
At the moment I think the best thing you can do is keep in touch via technology, maybe have daily Skype calls or chats via WhatsApp to support your mum. If possible, find out if you can speak directly with her doctor(s) to ask for their advice as to if and when you should come over. I was able to do this when my dad was in hospital with heart problems once and the ward sister was very understanding and helpful. At that time I stayed in England. My parents’ GP was also very helpful when I needed advice if I should stay or go back home when my dad had heart problems again. At that time he advised me to stay and I am glad I did because he passed away a few days later.
I think much will also depend on he time scale your mum may get from her doctors. If you do want or need to go over urgently, would it be helpful to contact your embassy to find out what exceptions there are for travel and quarantine in cases of terminal illness? Surely, if people can travel for work, you should be allowed to travel in situations like this.
There are no easy answers, but I hope you will find a way to deal with this situation the best you can. It is good that you have come to this site. You can post as often as you like. Please feel free also to private message me if you want to. We are all on here trying to support each other as best we can.
Jo

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Thank you for your kind words. My sister lives 4 hours away, but will accompany Mum to her big appointment on Monday to support her and also ask the questions Mum might not think about - I am very grateful for that. It’s just the waiting until then - and then I can make tentative plans - do I try to go over in December in the hope the lockdown in both countries will be lifted (I still need to quarantine - 5 days with negative test- in Germany) but at least I can go. Or if not it would be January - which I would prefer for many reasons, but who knows if they lock down again after Christmas… Exemptions in Germany are possible but only with imminent death of family member - not right now yet, I looked into it. Thank you - I feel I can’t speak too much about it with people, and I don’t want people at work to know (can’t deal with kindness then I fall apart), and need to keep my professional persona to help me through the day, even if it’s homeoffice, if that makes sense.

Thanks Jo for the offer of contacting you directly, I might take you up on it when needed…

I also find it very hard to speak to my stepdad (who is crying all the time because he will be left behind) and my sister who is just grieving ahead of time - it feels I need to carry everything. And the day will come soon, when I crack and crash, and it won’t be pretty (I usually keep emotions in a lot).

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What you write makes perfect sense.
Your stepdad, your sister and you will all deal with things in a different way, some are better at expressing or controlling their emotions than others and it is important to allow each other the space to be themselves. But I think it is also important to work together as a team, and even though your mum has been told her illness is terminal, she is still very much alive today, and however short or long she may have, you will all want to give her the best time possible.
My mother in law was given a terminal diagnosis 3 months ago and according to some research I did she could well have died within days or weeks, but she is still with us. I am with her at the moment. She is in her own home, a room overlooking the garden has been made into a bedroom, family members have taken turns so that she is never on her own, and she has carers come in 4 times a day. Her pain is under control and she is enjoying whatever time she may have left. The best thing we can do for our loved onesm I think, is to keep telling (and showing them) how much we love them even if we can only do that from a distance.
Jo

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Thanks very much, I am feeling a bit more stable after a weekend of resting, and walking. Although we still are waiting for the Dr appointment tomorrow, the way it looks as one of them said as Mum asked after life expectancy - make the most of this Christmas, it probably will be the last. Whatever that means…

But it brought reality home, my sister and her family are looking into self isolating before Christmas and then spend it with Mum, and if (hopefully!) the total lockdowns will be eased by then I will fly over mid December, stay at a local airbnb and quarantine there (and work from there, my boss is very flexible and supportive), so we have one potentially last Christmas altogether. Having the airbnb close by will also give me the chance to escape if it all gets too much and I need some alone time to process things.And then quarantine on return to the UK…

Of course no plan can be set in stone with Corona virus restrictions changing daily, but I very much hope this will be possible.

Mums pain is manageable (she says) with Tramadol, but they are talking about draining some of the liquid build up around her spleen (which is now clearly the place the cancer started, we will find out about what chemo, and how, and all that hopefully tomorrow.

Noting has changed since Friday, but somehow just today I feel more at ease with the situation, I am sure this will change a lot over the coming months.

I am glad I found this site as an outlet, and thanks for your support in advance…

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It is good to read that you are feeling more on top of things now and that you and your family have a provisional plan in place for the Christmas period. Having the cooperation of your employer is so important too and it is great that you are supported in working away from home. I remember how thankful I was for technology so that even when I was in Holland I could continue to do some work. Having a space you can retreat to is a good idea too. Are you making a provisional booking for your flight and accommodation? (I used to travel by boat, rather than plane, because I could change my bookings without extra charges as many times as needed.)
It must be a relief to know that your mum’s pain is under control. Tramadol is not the strongest painkiller, so even if her pain got worse, there are other alternatives. I am sure her doctors will discuss that with her.
I am glad you are finding this site helpful.

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As soon as I spoke to my sister to greet her exact plans in the next few weeks I’ll make provisional bookings - flights can be changed, and airbnb had a 24 hour cancellation policy.

Then I can just wait and hope that lockdown in both countries will be released over Christmas!

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Hello,

I’m so sorry to hear about your Mums diagnosis. My mum had a terminal cancer diagnosis in July and sadly passed away at the end of August. However she had been unwell for a very long time so in my circumstances it was more expected.

I would urge you to get home as soon as you possibly can and be there with her. I won’t sugar coat it as it will be incredibly difficult. Seeing someone you love suffering and trying to come to terms with the fact they don’t have the rest of their life to live makes you feel completely numb. Make sure you say and do everything you could possibly want to. When you are given a time frame try not to constantly check a calendar and ‘count down’ almost (that sounds so awful to say sorry). When my mum was given two months to live it’s as if her brains way of coping was that she became really unaware and forgetful (this might not happen to everyone I’m really not sure). This made it easier as she wasn’t afraid but it doesn’t make it any easier for you! Try to live everyday to the fullest and fit in as much as you can so when you look back at the time you’ve had you can look back with as many fond memories as possible and no regrets!

Sending you all the strength and support x

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Thanks - the diagnosis is now " If you make it to Easter you are lucky". So we don’t have much time left. Lots of discussions about chemo / no chemo, pallative care - Mum wants to try one round of chemo to see how she gets on, but her Dr team agreed to stop if side effects are too bad. Besides that all I can do is to hope I can get to be with her in December - my sister is also coming with her family so we can have one last Christmas together. Further visits afterwards will depend on lockdown restrictions, but I will do my best to spend as much time with her as I can. And I’ll be there at the end, and if I need to swim across the channel and walk through Europe!

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I’m so sorry to hear this. Sending you a virtual hug :heart:. You’ve done the right thing to post on here, everyone is very supportive.

You are in the cycle of pre grief, it is very normal to go through the denial phase. I started pre grieving in June 2019, and sadly lost my mum to cancer in August this year. There are 5 stages of grief and you will go through them all:

Denial,anger,bargaining,depression and finally, acceptance. I didn’t experience the denial, but experienced the rest. My sister went thru major denial, which was very frustrating for me at the beginning, as I was my mum’s support along with my dad while my sister got her head around it. It’s only now looking back that I realised she was in the denial phase of grief.

Do you have good support around you? I also used the Macmillan helpline a couple of times. It helped me speaking to nurses on there and especially once mum had her terminal diagnosis in Nov 2019. That was such a hard month. It actually affected my marriage. My husband didn’t really understand what I was going thru at the time and he just carried on his life, even going on holiday with his friend a few days after me getting the news mum was terminal. It resulted in 7 weeks of marriage counselling, things got so bad.

I really hope you’ll be able to travel soon, it looks good in terms of the vaccine possibly changing things for the better in that respect.

If I can share any advice and help, it would be, to cry when you need to, stay as strong as possible, take care of yourself )although your priority will be your lovely mum). And please don’t feel guilty for not being able to be with her, these circumstances are horrendous, and non of this is within your control. Just tell your mum over and over how much you love her, and how much she means to you, how brave she is etc. All of this will help you process the grief in the future.

Post on here as much as you need to, someone will always respond. I can’t tell you how much it had helped me through my despair of pre grief over the past year.

Thinking of you, keep strong and remember, no matter how tough it gets, somehow, someway, you WILL get through it x

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It’s been a while but I just wanted to update you - I made it home to Germany over Christmas, and although it was hard (practically and emotionally) it was so worth it. We could talk, laugh, cry, share memories, but also discuss practical things - funeral and inheritance stuff. Mum on her good days was nearly normal, on her bad days nauseous and weak - but mentally totally clear. I was totally emotionally/mentally exhausted after coming back home though! The best news is that the palliative chemo seems to work as the CT scan yesterday showed no growth of the cancer - that might buy us time, hopefully enough time that I can travel easier again and spend more time with her. she is determined to die in summer :slight_smile:
I’m just taking day by day, being locked in my flat with the cats here in the UK - but work is keeping me busy, and I try to talk to one friend or family member every evening, stick to my (indoor) exercise routine - and hope for time! Thanks again for your support - I am sure I will need it the following months xxx

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Hello,

Thank you so much for the update. I’m so glad you could go home and spend time with her. Especially that you could have lovely moments of happiness together but also the important conversations and get them out of the way. It’s great to hear the chemo is controlling the tumour and I pray it continues to do so.
If you need any help or support or have any questions don’t hesitate to ask! X