Strange Life

New to Carers Connect
1

I’m a 33 year old British Indian guy currently caring for his mum.

My mum (an immeasurable part of my life, my bestie yes I say that…) was diagnosed with Pancreatic Cancer on August 30th. Life was obviously turned upside down at that moment…

Despite this and the present situation isn’t as bad as those initial dark days- though I feel some struggle…

The range of emotions I have experienced in the past couple months I didn’t think I ever would experience, despite a rollercoaster life in general to some degree…

My mums condition is rather stable… unlike my mind at times. No pain, no vomitting, etc.

Something which was the opposite upon diagnosis.

Also given the incredible drama that has folded in the past couple of months, I can finally share relatively openly…that it appears cannabis oil is the reason for her condition improving so dramatically

I’ll leave this at this point for now, this story warrants and needs much more…nice to meet you all.

Feels like a burden has been lifted :blush:

M

2

Hi - I’m not sure why no one has answered you yet.

I suspect, sadly, that it MIGHT be because of the mention of cannabis oil?

I hate to say this, but sometimes this forum is used by those who want to push or promote something, and they ‘disguise’ that in a post that sounds genuine, but isn’t.

So, perhaps I should start by saying that if that is entirely erroneous, do please say, and then you can be here ‘properly’, rather than ‘improperly’, if you see what I mean.

Either way, I expect the moderators will deal with it.

Pancreatic Cancer is one of the VERY worst cancers, simply because it is nearly always diagnosed far, far too late for effective treatment.

However, I can’t really think that cannabis oil can do anything other than contribute to palliative care?? It certainly can’t be curative/therapeutic (ie, ‘anti-cancer’), but of course, when cancer is terminal, as PC so often, often is, alas, then anything that can give a better quality of life for what remains of it, must surely be considered??

As I say, ‘over to the moderators’ at this point??

(Sorry to be ‘sceptical’ but sadly we DO attract the ‘non-genuine’ here sometimes sadly.)

3

Jenny, you may be right, but I read that as meaning ‘cannabis oil = no pain, no vomiting’, and I think that is quite likely.

4

Ah, yes, so clearly NOT being suggested it is ‘therapeutic’ (again, alas, so many ‘bogus’ treatments for cancer are ‘pushed’ at the vulnerable and desparate and fearful - sometimes, if they are simply cheap, might well be justified simply on the grounds that the give comfort and perhaps hope? But if the ‘cures’ are making money for someone, then that is despicable) (I can’t see cannabis oil falling into that category anyway).

Hopefully cannabis is always good as an analgesic and of course a ‘soother’ (ie, its ‘calming’ effect) (both invaluable for cancer patients).

5

Thank you for your responses.

Not pushing anything unless it would help someone here (though ofcourse not yet).

Though the oils themselves do seem to have helped incredibly (Me and my brother researched upon diagnosis, and a series of incidents led us to oil maker who has a proven record of sorts).

Even the doctors are surprised at my mums dramatic improvement- it seems. We/Me are much less panicked despite what will happen on Monday.

It’s such a tricky situation. My mum I love so dearly…and have detached somewhat from the situation today, have to be strong. I mean I really love her so much…she was very upset at times today. No huge upsets today on a personal level thus far. I do need to look after myself. Mum was pretty clingy today bless her :blush::blush::heart:

Today was another interesting day. The domestic situation in our house remains a situation which is well- just messed up at times.

In summary, the house remains incomplete/unfurnished in parts my dad (possible narcissist- has issues, though retains some amazing traits) despite the situation at hand refused to hire help and finally get it complete and has nowhere near completed the decoration at hand- as he promised he would on countless occasions.

And his priorities are getting the living room to his ‘perfectionist standards’. Very hurtful and frustrating for mum in particular at times. The promises were very different…


On the same note, I also believe this has been a long time coming to a degree- something had to give, given the poor relations in our household. P

The situation at home has been the case on and off for years. My dad can be seen as being a possible narcissist and was emotionally abusive for sustained periods. This resulted in a self imposed silence between him v myself/mum for long periods…also this resulted in me and mum taking numerous holidays without him. And myself travelling solo for large periods.

I believe given how bad the abuse, control had got by dad at times towards mum and myself…I honestly believe the universe/god wanted to see some change. Without sounding like the victim.

I feel things are still improving…some of the scenes where we started behaving as a family again would simply not have emerged without the diagnosis.

Rambling :blush:

Back to today.

Me and mum have spent all day together like most days. Mainly upstairs in my room given the mess downstairs - my dad and uncle attempt to get the living room in order for Monday. Still not sure where me, we will end up. Her chemo will be administered initially at the Christie and then a pump taken home,-whereby on the district nurse will come remove it on the 3rd day.

Still feels so surreal…

Mum has taken the oils like a boss as she has been doing (I take about 30-45mins to prepare all pills in morning). A combination of the cannabis rso oil and CBD oil, I put into a vegan shell capsules. 3 times a day.


Out of the prescribed pills from the Hospital, the pancreatin enzyme and omniprazole are the ones I prepare. Yes no sickness, no major digestion issues, this wasn’t the case upon diagnosis, she was in dire pain, constantly sick, huge digestion issues…hence my faith in the oils…



Currently at my brothers, my mum started feeling really chlostrophobic at times. We nipped out earlier but only briefly.

A hectic but lovely environment…mum gets to spend some time with her grandchildren. And me with my dear brother and his family.

Thanks for reading, I know a bit all over the place :blush:

6

So so glad that you have found something to relieve the suffering for your Mum.

Sounds like a difficult situation. Glad you have plenty of family around you.

I care for my Mother who is housebound and my brother (disabled and also house bound) has been an immense emotional support to us both. He phones every day, bless him.

7

My brother died of pancreatic cancer a couple of years ago. He was with his wife in Uruguay where she lived at the time. They tried all sorts of things, frankly with a diagnosis like that surely ANYTHING that makes the last few months more bearable is worth trying. He told me he had some good stuff called the Brompton Cocktail, developed at the Brompton Hospital in London.

“Brompton cocktail A mixture of alcohol, morphine and cocaine given for intractable pain in terminally ill people, especially those dying of cancer. The mixture was evolved at the Brompton Hospital, London. Brompton, name of a hospital in London.”

At the time the doctors were telling him he would be well enough to return to work shortly, he was an aircraft engineer who signed planes off as fit to fly!!

We only realised he was terminally ill after reading this, and I had to suggest to him that maybe the doctors were not being as honest as they should be, as I’d had a kidney removed and it took me a very long time to recover from the surgery…

8

Lovely :heart::heart::heart: This is awesome

Indian culture-huge huge emphasis on family.

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I’m sorry to hear this. Big hug :kissing_heart:

Yeah it is an awful illness. However i do feel in my mums case we have been given the absolute worse case scenario. And I stand by that beyond pain management, the cannabis oil/CBD oil has stopped the growth at the minimum (a growth that would be expanding very very quickly that according to the consultants biopsy and an expert opinion from abroad). I insist other factors are at work…

Dad’s behaviour has considerably improves since chemo begin…



I guess it’s my personal beliefs (maybe controversial) but i do feel for all diseases there’s more than meets the eye- I honestly do not believe this is purely a physical ailment…


I honestly felt she was scared into starting it chemo given the typical life expectancy of pancreatic cancer patients…


Upon diagnosis the initial consultant was ridiculously tactless all those months ago…

Even beyond what is considered alternative treatment, hundreds of stories exist of even cancers that spraed going into remission-we are optimistic with very good reason…


So mum started chemo on Monday and up until then was absolutely fantastic. Appetite, everything else…well apart from the tiredness seemingly caused.by the oils. But up until then had gone from bed ridden and in pain…to up and about, eating, drinking, etc…with little of the prescribed medication necessary. And chemo seems to have harmed all that (though hopefully soon we’ll have positive). 4kg weight lose what not.

But yeah a bit tense at that this minute given the tiredness caused by chemo, as well the vomitting, lack of appetite, etc.

On a personal front, extremely exhausted myself. Been a long few days. Yeah I do struggle a bit at times…alot. I’m a son :heart::heart::kissing_heart:

And have been blessed with the most loving mum ever. More tears…as i type this from bed… I keep phoning my dad every half hour to make sure all is ok.

Mums fine, but hard work getting her to take.the pills-especially this one (hates the smell at present and pills in general, pre chemo was getting used to it)…plus admittedly one of the few times I’ve been away from her for so a relatively long period.

Got back from the hospital at 4am thanks to dad’s lift :blush:, myself-my dad has soldiered it and returned early. Bless him. He’s trying.

My mums aunty has gone straight to the hospital instead of coming here at home.

The visit to the hospital itself was precautionary…given her raised temperature. But looks like she’s soldiered the hard part. She should subject to everything staying the same be discharged. Just hoping the chemo is worth it.

A scan will follow after 2 more cycles, a response would make it operable.

Hopefully there is some light at the end of the tunnel.

More bullets in this battle arrived in the form of wheatgrass juice and broccoli sprout juice arrived a couple days ago…

However the problem getting much to take them…

Sorry I babble :kissing_heart::blush:

Much love xxx

10

We had a friend who was told to pack up and move into a hospice, but survived for YEARS in good enough health to take his steam engine to rallies! He was incredibly courageous and determined, the doctors were stunned at his survival.

I agree entirely that there is some unknown factor that means some people manage to overcome health issues that others succumb to, we certainly don’t know everything yet. There is always hope.

11

Lovely message thanks for your positivity. Helps.

Yeah certainly not unfounded faith…have come across a number of people indirectly across the family who between them know a number of people who have cured this … admittedly in most of these cases conventional treatment did play a role in the healing process.

Thanks so much for all the replies.

12

Been a while since I posted and remembered the forum. Hope all is well.

I feel completely lost. I’ve lost myself at times. I attempt gratitude daily but im not sure where life is heading.

In some senses I worry about my well being (I had a private ultrasound on my abdomen a couple weeks ago funded by mum bless her, my mums love)

I feel exhausted most days. My Personal finances are a mess. My life revolves around mum. I have very little contact with too many people outside family. My speech seems to have suffered and I frequently am verbally abused by dad, adding

Whining over :blush: the positives, after two delays my mum finally had another round of chemo yesterday. Great aunt is visiting. My dad’s ways despite prominent are limited recently (though he threatened not to take us to chemo yesterday :open_mouth:) my views change a lot on everything life is weird…

Chemo was delayed cause of low white blood cell count initially, then thankfully a viral infection. They felt it was related initially to mums condition. Thankfully not. Progress continues. The other fantastic news is the house is moving in the right direction along with mums tumor markers. Blood test on Thursday confirmed it had halved :blush:

Is this life? It’s funny 5 years ago life was a dream…I was traveling south east Asia…

Very contradictory posting for my mind

13

Quality of life is so important, as well as quantity. It sounds like you are “drowning” amongst all this. What outside help is mum getting, so you can have time off?

14

No outside help to be honest. Occasional visits from great aunt. My dad prevents outside help, since it goes above his authority.

However, I finally called social services last eeek and got a carers assessment yesterday. Visit by the social worker, initially spoke to mum and then myself. Occupational therapist suggested a bath lift to mum (precautionary) which she has said yes.

Against dad’s wishes ofcourse and was very worried I’d grass him (his past behaviour has been awful as mentioned and no doubt he’d be in trouble). The arguments still happen when his control is questioned, I guess I’m a punchbag at times.

Yeah it’s tough. I have had suicidal thoughts at times.

Exhausted as I write this. But also grateful. The situation could always always be worse (such as a few months ago when things looked dire).

Yeah personal desires don’t exist so much at moment. However hopefully I’ll arrange a coffee with friends later.

15

"Against dad’s wishes ofcourse and was very worried I’d grass him (his past behaviour has been awful as mentioned and no doubt he’d be in trouble). The arguments still happen when his control is questioned, I guess I’m a punchbag at times.

Yeah it’s tough. I have had suicidal thoughts at times."

Grass him! The only power he has is psychological intimidation. Even if you come from a culture which insists on ‘deference’ to the head of the house, ignore that. Your first duty is to your mother. Your dad can shift for yourself.

This is ‘horrible’ but your dad truly is ‘irrelevant’ in this respect. If he were a GOOD ‘head of the family’ he would want the BEST for his wife, and his son. That he refuses to let help arrive, shows he is NOT a good ‘head of the family’.

With power comes responsibility. He wants the power of being ‘head of the family’ but refuses to take the responsibility that comes with that position.

The fault is not in you, but in him. He is not worthy of any respect if he wants his wife and son to suffer. Despicable.

That’s why I say ‘grass him’. You owe him nothing - he doesn’t deserve your honour, duty, love or, least of all, obedience.

16

A good husband would want his wife to have everything she needs, and vice versa.
Accepting help is NOT a sign of weakness, but a sign of caring, and loving.

17

Merry Christmas X thanks for wise words.

I keep excusing his behaviour. When he is on his behaviour and helping with regards to mum it’s still some contribution that I simply couldn’t do at times. I feel so tight on him… sympathetic. That’s the way I am. I owe him nothing, it’s not the way it’s seen by him. I owe him everything according to him, fed and sheltered all these years is the usual basis for these arguments. And still technically true. What to do sigh.

I won’t lie something in me tells me that if he carries on the way he is going he won’t last beyond 63. I don’t want him to die.
He’s still my dad despite behaviour. Am I silly?

Yes I’ve gradually come under control again.

My mum alternatively despite her motherly worries, allowed us to dream a little throughout life. And many a dream came true. This is actually why I’m actually grateful to dad. I was definitely heading down the 9-5 path, traditional path after my degrees had his behaviour not got unimaginably bad all those years ago- it was his behaviour that proved a trigger in me discovering traveling solo. Which became a lifestyle to a degree for many years. Too much reminiscing…too many good times. Sorry drifted off topic.

I wish I could elaborate on all this. Mum literally doesn’t like me leaving for 10 minutes, sleeping next to me at minute. Sigh. Random type ups. 24 hours a day I remain with mum.

I insist mum is on the mend. I was regularly bursting into tears not too long ago. Chemo or the oils, likely a combination. Plus more supplements into her protocol.

Oh on the note of dad, I’ve never seen mum stand up to him so much since diagnosis. Yes despite the situation at hand.

Mum wholeheartedly credits his abuse as the core reason for her condition.

This all sounds like a pity fest when in reality the situation isn’t that bad… And away from the house and certain issues I’m actually grateful for life and the things we are doing.

Me and mum are out and about alot since Friday, little physical side effects of chemo since thank god. She got to take in the Christmas atmosphere in town on Friday, then a visit to the temple and later a movie on Saturday, followed by a trip to Trafford centre on Sunday (thanks to her dear friend) and some shopping in town on Christmas Eve.

And all three of us (dad included) went to brothers house for family Christmas meal. Mum the soldier did the vast majority of cooking.

So away from all that actually a pleasant few days.

Random talk but all helps.

18

Still about- felt some desire to unload more. Hope everyone is well :sunglasses:

So much has happened since last post. Trips to Leicester and London with mum, and great aunty. Many a day out as well…in between, as well as nephews birthday and meals outs.

And greatest news of all- mums tumor has shrunk significantly :open_mouth:.

I’ll give myself massive credit here, whether doctors say it’s the chemo or not…it isn’t frankly, well not solo atleast. Palliative folfirnox chemo is unlikely to shrink pancreatic cancer in 4 cycles (the timing of the scan, well on her 5th cycle) alone. But yeah doctors will never think outside of the box.

The Rick Simpson oil no doubt, plus CBD oil plus 3+ carrot juices, plus hypnotherapy, plus mannose, plus coenzyme Q10, plus Curcumin, plus vitamins B12, Vitamin C, Vitamin D3, plus a largely organic diet- are what’s shrunk the tumour. I also like to think my mums mind set shift has helped no doubt…

6 more cycles was the recommendation, and she’s done one :sunglasses: I would have considered a delay if I was mum …


Mum still hurting from dads past abuse and wwhave regularly spent periods in a hotel over the past couple of months at mums request. The house is a still a mess, more so in fact as dad ventures into something else (lighting adjustments and just non stop obsessive sanding of the walls in the living room). Just looking at dad prompts her to recall his past behaviour…and some of his behaviour isn’t that great at present.

Also almost agreed a lease a few weeks ago but backed out at the last minute (due to location, fear, this remains mums house, plus the fact is the tumor shrank while in this house). Also amidst another row I kindly asked dad to take a period of leave from the house at mums request and for her benefit, but he fired the most hurtful insults at me per usual. And ofcourse declined. Council remain little use since mum remains a homeowner so not a priority :disappointed_relieved:

A council house would be perfect given mum doesn’t want a long-term future in Bolton. And given the hoops we have to jump for a private because of my poor credit rating, it would be perfect. In moments of clarity/thinking I would want my parents to stay together, but I guess it simply won’t be possible.


My mum soldiering on… incredible bravery. Took her to a theatre production yesterday (she’s desperately keen to leave the house as soon as possible).


My mindset hasn’t been so good last week or so…though still loving spending time with her. My own life I’m trying to mend simultaneously but very difficult. I do need to look after myself a bit more…

Thanks for reading hope all is well.

19

Hi Monsta,

Great news about mum’s tumour.

Your father’s behaviour is terrible, and I doubt if anyone you are dealing with really appreciates how serious it has become.

An increasing number of people on the forum in fairly similar situations have used their mobile phones to record what was said or done, and once the GP has seen the film, action has been taken.

You could certainly take photos of the house and dad’s DIY. This, as I’m sure you appreciate, is the very worst thing for mum right now.

You say it is MUM’S house. Is it entirely hers?