Dealing with a limited prognosis.

Sorry about your situation Eliie. I'm glad your chemo has some chance of working. Your priority will be to keep rested and healthy and give it a chance to succeed. You dont have to undertake anything like my frenetic reaction, but it you have people around you, maybe you could do the planning and get them to do some of the leg work.

I have leukaemia, treated successfully in 2017 but relapsed Sept 2019 with 'months' to live. That was 4 months ago. I'm better if I keep busy. I had revised my will after first illness but I needed to make decisions about my smaller effects. I was keeper of the family collection of ancestor photographs and with no immediate family, had to track down a cousin to take them on. Also finished some write ups of the family tree and did a compilation of my poems and short stories. You will of course have your own set of interests, but it is a great relief to me that I have tried my best that my work of many years will be preserved, not thrown in the bin. But I did also have a clear out and throw much in the bin - I was a bit of a hoarder.

I have planned and pre-paid for my funeral and made very detailed plan from what colour willow casket to have to flowers and readings for the service. If you have family you probably dont need to go into so much detail, though it is still good to make your wishes known, so your bereaved relatives are not left floundering. I have no close family so had to register my plan with the funeral director.

Then there may be things you want to do while you still can. You'll need to judge your energy levels and pace yourself. I am amazed at what some people plan to achieve, I am tied by twice weekly blood tests, and as my condition deteriorates, I seem to spend most days sleeping or dozing. I don't have the strength to do any more clearing out, I'm wary of even short trips out. This leaves room for ruminating on my situation and feeling depressed. I want to go into a hospice before I am on my knees. Feel it will be soon. Fortunately I have stayed clear of infection so far. I really do not want to end my days in hospital or alone at home.

I haven't been doing very well lately at 'keeping going' . Went into melt down last week at hospital, just exhausted by it all. Seen a counsellor this week which has helped me but the reality of the situation is still there. So I'm no expert on advising on a good path. Try to do something each day which makes you happy, however simple. It doesn't have to be  a 'grand plan'. But if you have got things left you always wanted to achieve then maybe try to do them - or a cut down version, while you still can.

Wishing you well for your treatment.

Tessa

Dear

i see you’ve had a lovely reply from tessa with some great advice. I was diagnosed 18 months ago with primary plasma cell leukemia and have already gone well past my sell by date, like tessa I’m quite fatigued at this point but still have a good quality of life and receive tremendous support from my palliative care doctor at the hospital and my very swanky local hospice. I also have dialysis dependant kidney failure so it’s a full time job for me. I also have no children due to infertility problems so understand the heartache you will have experienced. In terms of planning, I did my advanced care plan, gave my husband lasting power of attorney, redid my will and signed a DNR, I’m not having a funeral as I’ve donated my body to my local medical school as my disease is very rare and also because I’m a cheap skate. I cope by living very much in the present which I actually find quite liberating and it has loosened my tongue and I am much more forward than before. Overall with the right support network you can, medical problems allowing have a relatively normal life if you face up to the reality of your individual circumstances. You can say anything you like in the end of life forum and you won’t be judged we are all here to lean on each other in the good and bad times.

Hi Ellie, I am sorry to hear about your diagnosis.

Firstly, if I am wrong for posting, I am sorry, let me know and it will be deleted. I am like you, about to start a new treatment which may or may not have a chance of working. It is to be I believe the final thing they can offer and I believe with my type and grade with brain mets diagnosed in April 2019 am nearing where they expect my life expectancy to be. Though of course it will depend if this treatment works or not.

I am quite close to your age too so your post struck a chord (I'm 36 now) diagnosed stage 3 b at 34. Mets at 35.

I hope the infection clears quickly for you. Hopefully they can tweak it for the next dose. I kept having to have dose reductions.

I am pleased you bought this question up, as I have been wanting to for sometime. However I rarely post in the incurable group, the other's I belong to are quite small and quiet and my primary one is lovely, but often posts are from the sons/daughters on their parent's behalf, so this question didn't seem the place to put it as they are looking more for reassurance and support etc.

I too, even when initially diagnosed put a lot of my affairs in order. I cleared out a lot of 'junk' or gave a lot of things like clothes to charity. I put a will in place and drafted a letter of wishes with my funeral plans (though not planned it entirely) and sought homes for my animals for when it happens. This helped a lot and gave me some control back.

Before my first major surgery almost a year later, I left a 'Just in case' letter for my family of what to do/who to let know/ where my important documentation is and who to contact for will, letter of wishes etc. I found this extremely hard to do but knew I had too. Luckily I came out of the surgery and also the two following major surgeries to remove the Mets after that.

I haven't been to a funeral since my diagnosis, though I have lost a couple of people I would have liked to go to their's. I thought it would be far too upsetting and didn't want to upset anyone or take the attention away from the person's who's funeral it was. So I haven't had much experience of funerals. So was unsure on how many songs to have, how many readings etc.

For me, I have decided I would like to be cremated, ideally arrive on a carriage and have chosen 'Lost without you' by Freya Ridings to enter the church.

I love the reading "Funeral Blues" or "Stop all the clocks" by W. H. Auden since I read it at school (long before it became more famous after being read during Four Weddings And A Funeral) but as I have no partner or anything, not sure it is quite appropriate for me.

I believe some people have a more uplifting song to leave by. I haven't found 'The one' yet but I like 'Waiting for a star to fall' by Boy Meets Girl.

I may need a third song, I am not sure.

For coping when time may be short, I split down life into smaller goals. In July when I was already recurring I thought well I would like to get to my 36 birthday, still be here for my brother's birthday in September, then I would like to see if we would leave the EU on 31 October, see a niece get a year older in November, then I found I would have a new niece/nephew in February this year. To see Xmas and the new year/decade.

I have ticked off almost all of those now so am looking at the next six months so my plans are now:

See if the UK do leave as planned on 31st January, welcome my new Niece/nephew in February (also a couple of close family birthdays then two). See how this new treatment treats me and a very tentative possible return to work. More niece's birthdays in May, June and July too. And so on.

So I do both in some ways, I am preparing for worst case and getting ready but also preparing to live longer than anticipated too as I think we all need to feel some hope, no matter what.

Hi , 

Lovely to meet you. I'm sorry about your diagnosis. I too have womb cancer, I was diagnosed at 37 with stage 3 (I'm 40 now). I too had 6 cycles of chemo which reduced everything but didn't clear it and then I had spread to lungs and then it spread further. In September 2018 I was given 3 months to live. I'm now well past my sell by date and I'm fairly well. I was initially offered chemo but decided to research alternatives. Got a second opinion. 

I have had immunotherapy since Oct 18 and it has worked very well for me. I'm aware there are some trials with it for womb cancer so investigating that might be an option for you. I realise it's complicated finding treatment  that works and we're all different but I can't be the only one it works for... womb cancer at our age is unusual so please do ask lots of questions about options. 

I'm not sure there's an easy answer to living with this kind of news. At our age it feels so cruel when I guess we really think we're only just hitting middle age and we just want to get on with life and making plans. Doing the death admin gave me a sense of control too. I also had a couple of nice holidays. I had a massive 40th birthday party too (way before my actual birthday which I didn't think I'd get to do I'm now considered a fraud!) I joined a choir and started piano lessons.. nice things for me after years of running around the rat race of work, kids and home. I'm sure you'll find a way of still being you through all this, try and be kind to yourself. 

Again, I'm sad to find you here but please know you're not alone.  

Aww, guys. Thanks so much for the replies. There’s so much I want to say in reply to you all, but I might wait til tomorrow. I’m in hospital with an infection but I’m home tomorrow and can use my computer to type a longer reply. For now, I can’t tell you how much of a relief it is to hear from people who understand what it’s like, like really a weight off,  and people who are a similar age with my type of cancer as well. My friends and family are great, but they can’t really understand what it’s like unfortunately. I’m so glad I posted. Love to you all. Xxx

Dear I’m so glad to hear that you think you are already benefiting from joining our little group. Although I have never met any of our members I get so much comfort from their kind words and unconditional understanding, it’s priceless. I’m off to the hospice this morning for my crafting class and to have a good old gossip about the events of the past week, there will be free sandwiches and some homemade cakes from one of the volunteers, what more could a girl want. I’m 56 so a little bit older than you, but ladies birthdays stop at 40 anyway L.O.L I hope you get discharged tomorrow as planned and look forward to hearing your thoughts on any subject you wish to raise.

Dear I can’t see any problem with you posting in this group, i think the line between the incurables group and end of life group is nebulous, it’s really more about the subject matter I think, here you can talk more freely about the “ D “ word and it’s an alert really to incurables who aren’t really in that space yet. I think you have contributed some excellent advice and your thoughts are very much welcomed here in our little comfy corner. I hope you are a stable Mabel at the moment and getting all the support you need, you are a very courageous young lady who despite everything you have been through still wants to help others, so keep up the good work.

Hi

I am another wombie - diagnosed grade 3, stage 3c2 in March 2014, recurred in 2015, spread and incurable in March 2016.  I was 50 when I was diagnosed and it’s my 56th birthday today. I didn’t think I’d see this day. 

On the medical front, my fantastic consultant has been able to get me on to new treatment not licensed in womb cancer and then onto clinical trials. These have kept the cancer under control so it’s spread slowly and never yet got to the run away stage where nothing can be done. I’m on my third clinical trial now and although much of my life revolves around hospital appointments, there’s a good deal that doesn’t and a good deal that’s a good life. 

I think my fellow incurables have talked about some of the important stuff. Doing the death admin (will, power of attorney, claiming under the mortgage life insurance, tidying up the finances, funeral planning) gave me a sense of control and allowed me to put to rest some things that worried me. I’m in touch with the hospice and the nurses there have helped me with things like pain control. I had counselling at the hospice and found it invaluable. 

On a day to day basis, I’ve learned to live in the present. People often talk about the importance of living in the day but rarely about how to do it. There is a danger attached to it - what if today is a rubbish day and you feel ill, hopeless and unable to see the joy in life? Who wants to be in that day? I certainly don’t. 

For me, the key has been meditation. I learned through meditation to examine my feelings with a spirit of curiosity but no judgement. So for example “Oh look, I feel anxious. That’s interesting” and not “I feel anxious and I should be feeling positive because everyone tells me I must be positive”. Once I replaced the judgement with curiosity, I was able to stop getting caught up in the difficult feelings and notice other feelings such as optimism, joy, love and focus on them instead. It gave me the choice and helped me learn to live with cancer. 

Having things to look forward to is important for me. I make plans to see friends and go to the theatre or cinema or exhibitions. Holiday plans are really important. Yes, they sometimes get cancelled but that’s just life.

The other thing that’s helped me is crafting. It keeps both hands and enough of my brain busy during long sofa days when my energy is low. I mainly knit and crochet and I’ve made some beautiful things for friends and family.   

I think things like funeral planning and so on are important to attend to but actually they place you in the future. Please don’t get so caught up in them that you forget about living this day, today. There is joy in every day whether it’s something small like a text from a friend or noticing a snowdrop coming into flower. 

I hope some of this resonates with you. It’s a pleasure to meet you although I’m sorry about the circumstances that have brought us together 

xx

Dear, happy birthday to you, you don’t look a day over 39 ! ! ! I hope you have a lovely day and have some treats lined up, you deserve it.

Hi welcome to the group (sorry to see you here etc).

i can see everyone has given you absolutely fantastic advice, so I won’t add the same, I am on a very similar timetable to you and just had my second Carbo/caelyx (really struggling I won’t lie, never felt so sick in my life).  I got my bad news in July and did all my death admin then, as i am also a planner.

the only other thing I would mention was I arranged for some counselling, I have good support from family and friends but there is some stuff I just can’t talk about for fear of upsetting them.  It’s been a huge benefit to me.

im not sure I will ever come to terms with things - I wait for acceptance/peace but mostly I am still grieving for the things I won’t have (sorry, gloomy) but that’s ok I think. But there are also good days and happy times with family etc, and I saw a snowdrop this week!

hope you get out of hospital soon and home to your own bed, love heather xxxx