Not coping with uncertainty

[SarahLost]

Hi,

So my Mom was diagnosed with pancreatic cancer around Christmas after having symptoms (which were constantly put down to indigestion or blood sugar/ diabetic issues) since August. We have now been told it is t3, n1 and that it is inoperable. She is starting chemo in next two weeks.

I have two small children and a partner but he is very little support practically or emotionally. I have my step-dad and brother but no other close family.

From day one I have understood in myself that my Mom is not going to get through this, I have been distraught for a number of weeks but seem to have levelled off a little and now shift between everything being ‘normal’ or bad days where I feel so low and just cry.

My Mom just seems to be in denial and doesn’t talk much. I did not realise how she was thinking until she mentioned within the past few days about when she would be able to go back to work. I do not want to show her how I feel or talk about it all too much as I want her to stay positive.

I am lost, I have no idea how long she has. I do not know how to cope with this all now let alone when she is gone. I don’t want her to suffer but I don’t want to lose her. I am broken by what she may be thinking and feeling herself and I don’t know how to support her if she doesn’t want to talk/ acknowledge this.

I’m not sure what I’m asking for here, I just don’t know what to do anymore.

[Vasil]

Dear Sarah, my name is Vasil and I come from Bulgaria. I am so sorry that you are going through this. The worst thing is this uncertainty that you are talking about. Various sources speak of 6-11 months median survival but this is average. Some people manage with years. We seem to be in a similar position - my Dad was diagnosed with stage 4 also inoperable six months ago but somehow he managed to endure 12 rounds of chemo. Our biggest concern is weight loss.

How old is your Mum? Do you know what sort of chemo she is about to start, Folfirinox or Gemcitabine? Kindest regards.

[SarahLost]

Hello,

I too am sorry about your Dad. How did he cope with the chemo? Was weight loss during the chemo an issue?

My Mom is 55, she is having folfitinox I think. She has been told it’s for 12 weeks.

I have seen quite a quick deterioration over the last month to 6 weeks, she is struggling with tiredness and just sleeps most days. I also worry about the weight loss.

Thank you for the reply

[Vasil]

Dear Sarah, I think weight loss is a major issue but in my father's case it has been very conspicuous to say the least, from 80 kg to 50 kg. I am not used to seeing him like this. The first five rounds of chemo, also Folfirinox, were tolerable but then it knocked him down making him sleep all the time. He also developed gastric outlet obstruction but due to disease progression. Despite continuing weight loss my Dad took the whole cycle of treatment, 12 rounds in six months. I truly hope your Mum will be doing OK. The doctors will be monitoring her closely, especially blood counts and haemoglobin. My father had once blood transfusion and it helped a lot to normalise blood levels.

Best, Vasil.

[SarahLost]

Thank you for the reply.

I hope that your Dad keeps as well as possible

[Essee11]

Hello

My dad aged 63 was diagnosed in sept and also given 12 weeks of chemo. Also terminal and not able to operate. He has chemo every other week and has just had round 6.

I know how you feel when I first heard about my dad, I couldn’t function and didn’t know what to say or how to act around my dad. We are all so close and totally gutted but it seems to have sunk in now and is our new normal.

I have bad days but I try each day to be positive and I know there’s always someone worse off than me and my dad.

I go off my dads vibe, he doesn’t talk much about the end or his wishes. Instead he talks about making it through the chemo and what he would like to do with his time and I roll with that and encourage him all the way. Hope this helps x

[Borobi]

Hi Sarah

So sorry to hear about your Mom. They’re such an important part of our lives. My husband was diagnosed with a T3 N1 M0 inoperable tumour 2 years ago. He had 12 rounds of Folfirinox which shrank the tumour. He didn’t have much in the way of side effects. Later chemo radiotherapy and Gemcap chemo didn’t work and he died in October. So he had 21 months from diagnosis and most of the time he was well. He was retired, but was well enough to have worked for a lot of the time.

He never wanted to know how long he had. I understand that, but it makes it hard for family as you don’t really know what you’re dealing with. But once his health started to fail it was obvious he didn’t have long left.

It might be that thinking about going back to work is your Mom’s way of being positive. Just take your lead from her and if she wants to talk about things, let her. Make the most of whatever time you have left and create some memories for you all - I know that’s pretty difficult at the moment.

Sending good wishes.

[Skippy]

My 75 yrs old brother was diagnosed with PC July 2018 and lucky enough to have a Whipple Op by 17th Aug. He was in hospital for a few months recovering. He lost a lot of weight. In Dec 2019 he begun chemo (not firenfox) for a planned 6 months which he coped with very well. Tailored to his bloods and health condition. His Only symptoms were 48 hrs of tiredness. No sickness. No drastic symptoms at all. We were very surprised how well he received it. Unfortunately Covid halted his Chemo by 3 months of that treatment. We won't know what problem that has caused. If he'd finished chemo would he have had longer before this spread ?

He had gained weight, was well but always had the symptoms of " bloated tummy". And feeling full.

In Nov 2019 he began to exp slight back pain in bed at night and diarrhoea and lost about a stone in weight over a few weeks. His pain at night was managed by two paracetamol. After a CT scan in Dec 2019 he was inf his cancer "had spread around pancreas and there is two tiny lesions to his liver

This news obv caused a deep depression and fear.

Palliative chemo is offered (Firenfox). I'm informed that only 40% manage to ext life by 3/8 months. It won't eradicate the disease. No other surgery is possible.

He decided to aim for a different approach - a veg dietary input consisting of several glasses of carrot juice per day. A regime of raw vegetable pureed juices extracted by blender. A half carton of cream cheese with 6 tablespoons of flaxseed oil with banana/slices of lemon to taste. Also a body building protein drink made with almond milk. In addition he has blended fresh fruit juices. Daily. He has a Dr prescribed steroid tablet per day. This is in addition to a few normal snack per day of fish and/or chicken. His weight has actually increased from 13st 13 lbs to 14st 4lbs (he is 6'3 ). The weight gain has inspired us. In addition, the diarrhoea has been less noticeable. His back pain has decreased. He has no sugar or dairy products, no red meat. His only symptom is now still the continued feeling of " bloated tummy" plus extreme fatique. But he has no pain. He does have a reasonable moderate appetite.

We just don't know for how long it will be before we see changes again. If anyone wants this diet in full. I'm here to talk about it. But for us thats all we have, together with a Palliative Care Team at hand.

Our hardest task is to reassure him. In this covid lockdown it is hard to distract him from this awful disease.

No friends allowed etc. Nowhere open to go. We drive him out in the car sight seeing -just briefly -even tho he may rather sit in his chair. I try and assure him I'm there for him. That he has to try for us. He complains so little.

I feel his power foods have helped so much. His surgery even provided protein shakes.

He hasn't decided on this next burst of Firenfox as he has gained weight and is currently comfortable. We are afraid to rock the boat with the possibility that Firenfox may rob him of his immunity that he's hanging onto for the advantage it may bring. It's got to be patient's personal choice.

On reading on the extreme fatigue due to cancer there doesn't seem to be any solution, but at long as pain can be kept to a minimum that's all I'm hoping for right now for him.

[Vasil]

Dear Skippy, I read your story but simply cannot believe that since December 2019 your brother has been on carrot juice only with no chemo. Metastatic PC develops so fast .... Maybe it's December 2020 that you had in mind?

[Support Team]

Dear Sarah,

My name is Lynne and I am one of the nurses working on the support line.

I am so sorry to hear about your Mum, I am pleased you felt able to reach out the forum community and its great to see the support & advice from members; it is often so useful to chat with people who have been through similar things.

You might also want to chat through things with one of the nursing team here on the support line. You can do this by dropping us an email nurse@pancreaticcancer.org.uk or you call call our support line on 0808 801 0707; this is open 9-4 Mon, Tues, Thurs & Friday and 10-6 on a Wed.

Please don't hesitate to get in touch if you need to

With kindest regards

Lynne

Pancreatic Cancer Nurse Specialist

[Skippy]

Vasil it's felt like a lifetime. He had Whipple op Aug 2019. Dec 5th 2019 he was considered fit for his first of the 6 months rounds of chemo " to mop up any stray cells" but chemo all stopped middle of March 2020 half way through due to the Covid outbreak. Hes been doing so well, until Dec 2020 when he received a ct scan and the news it has spread. So yes since Dec 20th 2020 hes been on this pure veg diet, proteins and as ive listed above.Hes maintaining his weight currently. His appetite remains too at present. My apologies, its been an anxious few weeks since his ct scan.

He has constant fatigue.

[Vasil]

Dear Skippy, i am so sorry. It appears it's not easy for you at all. My father is about the same age as your brother, 73, but he can't have surgery so it's chemo being the only option. You mention that your brother gained back some weight. Is it because of the carrot juice? I bought some protein drinks for my Dad and he tolerates them well but he still looks like a skeleton. Of you need to talk to someone, please write to me. I come from Bulgaria. Kindest regards.

[Skippy]

Vasil for 3 weeks now my bro 75 is being mentored on the Budwig diet. We thought it may assist in helping to maintain his weight. This diet info is found on line.

3 weeks on this regime now his heath has remained stable. No decline. He has maintained an appetite and mportantly an interest to eat. He has gained 5lbs. We do wonder if this is "water retention" as his legs " feel heavy" but we can just try it and see.

His personal toileting are all working as they should. (If anything he did have a month prior to this diet of loose stools continually, but has seen good improvements on this now. Diarrhoea is not happening now). Some days he's so very weak to raise himself, but today he has got up and "put his bins out for collection" and it's a day at a time.