I am really struggling to cope at the moment as I have no idea what what is going to happen and I think that’s the hardest thing,
Im Autistic and ADHD and at the moment my mum seems great, healthy and even but I know it’s just a mask she uses to protect me aswell as the pain meds, but everything feels almost like it’s back to normal pre diagnosis, but it’s not. My mum had away weeks ok combi chemo and it made her really really ill. It’s dose of 100% sent her to hospital for about 4/5 days and then back again for another 4 as her first stint she caught covid.
after that she was ready to quit, but she decided to give it another go on 50% and managed that and then after a few cycles they upped it to 70% and after 1/2 she was lucky if she had one day in the 14 day cycle she felt well enough to leave the house besides going for hospital stuff, and was miserable but stuck with it hoping for the best.
but after the 1st round the scan showed 1cm of growth with dr said could of been between the last scan and starting chemo but they is no sign of shrinkage and is wrapped around a main blood vessel so cannot resect without a good amount of shrinkage and mum decided she could not deal with another 3 months of chemo not being able to move, as she wants quality over quantity, and I want both.
was really really horrible when she was feeling so ill, I have never seen her like that and was scary, seeing her crying and upset and scared because they wanted to put yet another cannula in, and her veins suck and is really hard to get one in and a few times has been hurt a lot by it.
the doctor said she could have radiotherapy which should stop the tumour growing to much but then it tends to pop up in other areas.
this was said over a month ago, and mums pain has been getting worse, it pushes into her back, but has been managed with mst and oramorph, but besides that she’s back to herself. But this increasing pains and increasing meds worries me whether it’s growing exponentially, and she wants to go to Iceland, and we need a scan to get the most up to date info for the travel insurance and the plan is that the 4 of us go, mum, me, my husband and my 12 year old daughter, so make memories, but this probably means taking my daughter out of school for it, which is stressful, and she’s only just started secondary.
and me and my husband getting time off work, and in the last 10 months worrieng about mum have let the pets jabs laps, which I need to get sorted else they can’t go into kennels, and I can’t bloody find my passport, the 3 of us only got new ones in the last 6 months and the other 2 are right where they are supposed to be, but I think I took mine out as I had to put details in for Id for something and know it’s in my house somewhere but…. ??
also I’m low on funds as I have been off with my mental health and doctors stuff with mum due to this and mum has been helping me, but I only ask for help from her when I’m desperate and the bare minimum, but it’s getting harder and harder.
and what if she just suddenly gets worse and I’m not ready, I have already started falling apart, I’m 33 and have a daughter of my own and a husband, but I have always been reliant on my mum for support mentally, domestically and financially, as in keeping track of what needs to be paid ect.
but she is also my best friend she is the only one I can TrueType talk to about anything and know she will be real with me but always love me and support me, and I don’t believe in afterlife shit, I wish I did, that may be easier but I don’t, so when she’s gone she is gone,
I don’t know how I am going to live without her, breathe without her, but also I don’t know what’s going to happen, maybe that would be easier, if I knew, ok she is going to be good for 2 months and then deteriorate suddenly and be bed ridden and in lots of pain, but can be managed with meds and will be locked after and before Christmas she will pass.
or she will be fine for the next 4 months have the radio and be more comfortable and then it will pop up somewhere else and have a slow decline at home, more and more being less mobile before being in a hospice and then will pass.
but no one seems to have any idea, which I know no one knows. But my brain cannot process, are we going to get another Christmas? Mother day? My birthday? Her birthday? Is it going to be prolonged? I don’t think either of us could deal with that.
sorry for the long rambling of thoughts just running out my brain.
Hello Lanamer
I am so sorry to hear of your Mum's diagnosis of pancreatic cancer. It is totally understandable to feel overwhelmed and like you are struggling to cope.
If you feel able to then perhaps consider calling the Support Line and speaking to one of the nurses on there. The number is below and they are lovely on there.
It is good that you have your family around you and I hope that you have had support yourself from your GP for your mental health.
It must have been hard to see Mum going through the chemotherapy and to be in pain and upset. Are Mum's medical team supporting you as a family as well? It is natural to feel worried, wonder what is going to happen and have lots of questions. It is sometimes hard for the doctors to know what will happen and when as cancer can be unpredictable.
We have a forum on here for people that are supporting someone with an incurable cancer and I wonder if it might be somewhere that you would find more support. I will pop a link below in case you feel it would help.
Supporting someone with incurable cancer forum - Macmillan Online Community
It sounds good that Mum is thinking of a family holiday to Iceland to make memories and it's perhaps something to look forward to as a family. I realise that it can be hard financially for people at the moment. You could perhaps call the Support Line and speak with one of the Financial advisors. They would be able to look for you to see if there was anything that you would be entitled to claim to help out. I did this myself and they were very helpful.
With taking your daughter out of school I am sure that if you explained why there would be some sort of special circumstances that would be allowed.
With your passport have you been able to contact the Passport office to ask about a replacement ?- maybe they could also offer you some sort of fast track replacement in the circumstances.
With the pets- am not sure what type you have but have you any neighbours or friends who could help for a short time? Sometimes also there are animal charities that can offer support. My GP surgery also has a Village Agent attached that you can contact and ask for help/community support. There maybe someone who could help. I have pets myself and I know it can be a worry to leave them.
The other thing I thought of is that is there anything available in your own area for support for you as a family. You could ask at the hospital but there are places such as Maggie's centres that can make a real difference. One of the advisors on the Support Line would be able to do a search on your local area to find out what is near to you.
I hope this helps a bit and I am really sorry that you as a family are going through this all. It must be overwhelming to have so much to cope with. Macmillan is here for you so do not be afraid to pick up the phone and speak to someone. Alternatively you can use the online chat feature or email.
If there is anything else you need, please do ask
Jane
