Feeling morbid!

[Michaela1]

Hi people,

I don't know if everybody goes through this? But I'm feeling kind of morbid, for example wondering how I can work out how much time I have left (which in reality I know we cant). I keep thinking will the end be quick, will all of a sudden I will go downhill really fast, or is not a slow process, like an illness where it's a progressive slow ending. I know this sounds really morbid, but i keep thinking theses things, googling them (with no success) etc etc. I cannot talk to my family or friends about this, so I am asking my forum friends!? Do you have these thoughts?How can I answer my questions. I think I'm going through a depressed state of 'what's the point' kind of thing too..

[PCUK Nurse Jeni]

Hi Michaela,

Thanks for your honest post - I am sorry to hear that you are feeling this way, and feeling quite low.

Michaela, you would not be alone in these thoughts - we do speak to folk quite often who feel like they have "hit a wall", so to speak. Its not uncommon at all when you are going through treatment to have these thoughts - some would say its inevitable that the mind will wander to these thoughts at some stage.

Just wondering, how long have you been feeling like this? Is it something quite sudden, or do you think its something which might have been there for a while, and is getting more prominent? Are these thoughts affecting your everyday life in terms of going out, eating, your interest in things?

I ask this because depression (clinical depression), is common in pancreatic cancer, and if this is something which has been going on for a while, or lingers for a while (ie: its not an "off" day or short period), then perhaps you might ask to see your gp to discuss this with them? They should be able to refer you for some counselling, +/- try some medications if this is something you want to try.

Are you still on chemo? Sometimes, the steroids used after chemo can alter the mood a little - so, if you are still on chemo, then maybe mention this to your oncologist - especially if you feel its worse when you are taking or just stopped the steroids.

Do you have a Macmillan Nurse who you can speak to/confide in, if you don't want to speak to your family and friends? You should be able to avail of this service - another question for your gp if you don't have a Macmillan nurse.

You are right Michaela in that its difficult to predict what the future holds - however, as long as you are on active treatment, or being followed up, then something is being done to control the cancer. And if it is responding, that is also positive. I know this may not help you in terms of your thoughts.

Michaela, have you tried any relaxation? Or any mindfulness? These can be really helpful techniques - and they should be available at your local cancer or Macmillan Centre, or at any Maggies centre if you live near to one. ( https://www.maggiescentres.org/our-centres/ )

Michaela, you can also call us if you wish to have a chat. The details are in the signature below.

I hope you can find some support locally.

Best wishes,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[kate2101]

Hi Michaela

You wouldn’t be human if you didn’t feel this way! Nurse Jeni has posted some good advice if you feel it’s too much for you.

I get really down when I get home after chemo. I go for my treatment feeling quite well then it all becomes real again and I come home feeling a wreck. I just wish it would all go away but the reality is it won’t and I just have to make the most of it.

You’ve had a really rough time recently, being in hospital etc and it’s no wonder things get you down. Try and stay positive, no one can tell us what the future may bring, you could be the healthiest person on the planet and be hit by a bus tomorrow. Keep yourself as fit as possible, it’s much easier to push dark thoughts away if you are feeling well and living life as normally as you can.

Get out as much as you can. It’s so easy just to stay in every day but makes such a difference to my mood if I get out. I try and visit a friend for coffee every week, hearing about someone else’s life can take your mind off your own problems for a while.

I totally understand your feelings, I must practice my own advice but not easy!

Look after yourself.

Kate x

[toodotty]

Michaela1,

We are all human and believe you me we all have bad thoughts as well as good. I have thrown the toys out of the pram on more than one occasion and done many of the "why me?" stomps through the woods. I have parked my cancer in an imaginary box and I try not to let it out too often. None of us know how much time we have, we just need to make the most of what we have got but also recognise when our time comes that there will be the best support that we and our families can have. This we get right in the UK.

I recently attended a couple of the support days put on by Pancreatic Cancer and met up with some truly wonderful people (including Di and Sarah from Pancreatic Cancer Org). My husband found it particularly helpful as he could see people living normal lives beyond the requisite 4 months, so it gave hope to him too. As one inspirational lady I met recently on the cancer ward said, "When the doctor told me I had about 6 months to live I politely corrected him and said the only person who knows is the good Lord himself. I will go when he is ready and not you. That was 2 years ago she said". I am not religious myself but how true.

Keep fighting girl, cancer treatment is on the verge of major break throughs we have to hope to survive long enough to get a chance at these.

And finally, it's winter the dark nights are enough to make anyone feel down.

toodotty

xxx

PS Kate, did you have chemo today? I did, Round 10 and no sleep expected tonight

[kate2101]

Hi Toodotty

Chemo delayed till next Thursday (number , low platelets again. Quite nice to have a week off, admit I have been more tired than usual which is probably why.

[Michaela1]

All taken on board and digested. I do have a Macmillan nurse and I think she has picked up on my low mood and is maybe going to recommend I see their counsellor/psychologist. She has also put me down for yoga. My ca19 levels went back up the 1000 they had lost from my last chemo so that was a punch in the stomach! Plus my CT scan was cancelled due to machine break down! But hey ho what can you do!

I don't want to feel the way I do, which is probably just like the rest of you, we all most have these down moments at times right? I guess this is why this site is so useful to us all. A lot of people just come on to read others post but never reply, and others get the cathartic reward from writing down their feelings. I think I am a bit of both!

Anyway less of me, how is everybody else feeling?

Michaela x

[toodotty]

Hi Michaela1,

Yoga seems like a good idea to help and will strengthen the body and help sooth the mind. It is a pretty S**T trip that we have hitched ourselves onto isn't it?

I find it hard to try and be cheerful and support the rest of the family and I do get snappy and angry which isn't fair on them either. None of us is perfect and we just have to go the best we can. And when things go wrong, like the scanner breaking down, then it can feel like a real kick in the teeth and as though someone is deliberately putting obstacles in our way. When you do have your scan find out how quickly the report will be ready, it was the biggest kick in the teeth for me to turn up for my scan review appointment to discover that they hadn't got it. I really threw the toys out of the pram, I was so upset I cried for the rest of the day, which meant that so did my husband. It wasn't deliberate on their part, just thoughtless but this was too big a milestone for me/us not to be upset.loo

Kate, I too have falling platelets, I can see from my 2 weekly blood tests that I am losing about 10% each test. I am still within range but it won't be long before I drop into the red. The rest of the bloods are fine, but this is something I want to stop, particularly as I am planning Nanoknife for December. Are you being given anything to boost platelets or are they hoping it will just improve? I has just started taking vitamin B12 in a hope to head this trend off.

Apart from that, I am feeling fine but have a bit of a stinky cold at the moment. Off to make breakfast, poached egg (only concession to veganism, they are my own pampered pets that provide the golden eggs!), fried tomatoes and mushrooms on sourdough toast. I have just discovered my craving for this breakfast packs a hearty 30g of protein into my diet, so clearly my body knows what it wants. I never knew that sourdough bread is protein rich.

Are either of you going to the talk at the XX on the 15th November, or are you too far away?

Erika (aka toodotty)

[kate2101]

Hi Michaela and Erika

Hope you are both ok today, and Michaela .... hope your mood has lifted.

Re platelets... they don’t seem too worried at the moment as my levels rise again but my last few ‘Dr Doom’ appointments have been with the registrar, I am booked for an extra appointment with the oncologist on Wednesday who will decided what to do, I’ll keep you posted. I also have an added problem that I have broken some vertebrae when I foolishly fell downstairs a few weeks ago. I’m waiting for doc to decide what to do about that too. Another complication!

Your sourdough breakfast sounds great, I’ll give it a go!

All being well I will be at the xx. It was going to clash with chemo but as last Thursday was postponed, 15th should be an ‘off’ week. I look forward to meeting you, should be an interesting evening.

Kate

[toodotty]

Fab, it would be great to meet up at the xx , at least you will recognise me! Though my hair seems to be thickening up which is against the run of expectations.

Erika (toodotty)

[Michaela1]

Unfortunately XX is a little to far for me as I live near Hull, childcare would be an issue too!

Would of been great to meet you.

I am feeling a little better, I too find my self snappy at the family, but not only that, I seem to have little patience for anybody at the moment! But I am trying to bite my tongue and turn the frown upside down so to speak!

That's a bit rubbish that both of you seem to be having the lowering platelet thing, I don't really know what that means as I am only really looking at the ca19 marker thing as everybody seems to go on about that!? I only ever had one chemo stopped due to be being to ill and in hospital. They know now to have a blood print out thing ready for me to look at each time I come for my chemo, so maybe I am annoying them too!

Need to give my self a slap around the chops and get on with this rollercoaster ride, as we can't just yt? Off can we!

I feel I am rabbiting on again!

I do love this space just to be able to say all the things you want to but know it will just upset family and friends.

Going to give the sour bread a try and the yoga!

Much love

Michaela x

[toodotty]

Hi Michaela,

I went to a Pancreatic Cancer Survivors Group in Nottingham recently and it was really helpful. The next one is next year I it is likely to be further north, Leeds or Manchester which might be possible for you.

It was originally set up for Whipple survivors but they have expanded the group now and there are other Stage IV people, or Whipple survivors who have then become Stage IV. There is even a "super-responder" who had Whipple's, then Stage IV and then it all disappeared! Many of the people have been alive for 5, 7 , 9 years and are living reasonably normal lives. My husband found it very helpful to talk to some of the other carers, he certainly is a lot more optimistic since the visit. He has admitted that he is worried that he is going to wake up and I will be dead next to him in bed. I have said that this is extremely unlikely, but not impossible for anyone!

I will send you some details if you are interested?

Erika

[Michaela1]

That would be great Erika, my e mail is (post edited).....thought that might be easier just having my email address? I read on here yesterday about somebody going to Germany to have the whipple and whom is doing good, did You read it?

Michaela x

Edited November 9, 2018 by PCUK Nurse Rachel R
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