Hi all, I've finally plucked myself some courage up to join the chat page and vent my mind so this may be abit long winded, apologies...
So the C word all kicked off in February when my dad was diagnosed with a brain tumor after terrible headaches and after weeks off work and going too and from the doctors, they finally referred him to the hospital with suspected meningitis symptoms at first and kept him in. An mri scan the next day revealed the marble size tumor on the back of the brain. Medication kept the pain down and this was successfully removed in March. A CT scan after then showed 3 shadow clusters on his lungs.
He had 4 months of chemo which shrunk 2 of the clusters but the 3rd has actually grown 5mm so is now 20mm in size. He has just finished 12 days of radiotherapy and should have had his results last week but when he went to the hospital his face to face appointment was delayed by 2 hours so he went home and wanted the doctor to call him.. Which he hasn't and has rearranged for another face to face appointment in 2 weeks.. Which this gets me thinking this isn't good news? My dad asked if I wanted to attend the appointment with him but understood if I didn't want to. I said sure course i will but deep down I really don't want to. I don't want to hear it. I'm not strong enough and I know I'll be a blubbering wreck. I feel anxious and sick when I think about the appointment and what is going to be said.
He is now suffering with terrible back pains and was referred to a bone specialist on Friday for a scan in fears that's its now spread to the bones. Results will be back next week.
Me and my dad have never really been close. I am 32 but since the diagnosis we have been in contact everyday. He is single, lives alone and I can't help but feel guilty for our weak relationship over the years and that he's all alone, not many friends. He has terrible anger issues and a short fuse and i feel my anxiety going crazy when i am out in public with him if something annoys him he'll just flip out, even more so now since this all started. I am self employed and doing my best to take him to hospital appointments and see him when I can as I live 40 minutes away. And when I do my own things I feel guilty and cannot fully enjoy myself as it is always there in the back of my mind.
I am also angry that he hasn't really done much to help himself either. He's been a smoker all his life and still is smoking now , he's an addict. His poor diet, mc donalds, take aways, his appetite is poor but when he does eat its all crap. I tried taking him cooked meals down but he's not bothered. Doesn't want to do anything or go anywhere, like he's gave up or in denial this is actually happening
He only really has me and my nan that is helping him out. My poor nan is 77 this year and is currently going through cancer screening herself as we believe her cancer has returned after having a kidney removed 4 years ago. She cares for my grandad who is starting with dementia and her 60yr old daughter who has learning disabilities and has lived with them her whole life and does not understand what is happening around her. My nan is the 1 steering this ship and god forbid anything happens to her now I don't know what will happen or where to turn to for help? She is doing too much and making herself ill. It's all just a mess. And like I said me and my husband are self employed and I cannot afford to have anytime off work with this crazy cost of living and mortgage rises.
My dad still looks really well. He smashed chemo and to see him you wouldn't think anything was wrong considering all he's been through. It's the what happens next I'm having sleepless nights over. The palletive care, where will he be, how long before this is put in place, how do we make the arrangements, what will he look like, will he feel it, will he slip away peacefully, what to do with his belongings, his phone, his bank account, funeral arrangements.. I can't ask him I just can't.
Hello Ewol09. I am sorry to see you have not had any reply to your post above. I wish I could answer it myself, however I am from the Prostate Cancer forum, however by me replying it will "bump" your post back to the top of the forum and you should hopefully have some response.
Best wishes - Brian..
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Hello Ewol09
Welcome to the Online Community. I am glad that you have plucked up the courage to join us. I hope you fee a bit better for being able to express how you feel. I find just writing it all down can help at times. If you feel that talking things through with someone would help, then please do consider giving the Support Line a call. They are lovely on there and will just listen if that is what you need but they may also be able to offer advice and also find out if there is any local support for your Dad or yourself and for other family members. The number is at the bottom of this.
I am so sorry that Dad has been diagnosed with a brain tumour/ lung cancer and I understand it must have been hard to see him going through chemo and radiotherapy. Even though you feel you are not close it is still hard and I can understand you worrying about your Nan as well. It is a lot to cope with.
With regard to Dad attending the hospital for an appointment and the delays. I understand it is an additional worry that the doctor did not phone back but wants to see him in person- this does not necessarily mean that it is bad news- some consultants prefer to see you face to face and he might also need routine blood tests etc. If it has spread to the bones then the appointment may be to discuss possible treatments. It might be worth Dad (or yourself) contacting his CNS and mentioning how anxious he is feeling about the appointment so he can be given some extra support from the nurse team. Even if it means he has a little extra time with them or support after the appointment.
Regarding supporting Dad it is good that you have been there to support him so far, despite having a strained relationship with him- but you must not feel guilty- you are not responsible for some of the life style decisions he has made. I can understand how frustrating it must feel that he is not helping himself. He may also be struggling and feel it's too late for change? Taking him meals is a thoughtful idea. With his anger- is it possible that this is caused by the cancer? or a reaction to the cancer and treatments. When first being diagnosed with cancer myself I went through a lot of different emotions- anger, fear, anxiety, feeling up and down. All is normal but hard for the person who has had the diagnosis but also hard for the family. Cancer puts strain on the whole family and can amplify any existing stresses and strains.
Regarding not wanting to go to the hospital- I can understand that and if it is making you feel anxious and sick already and you are worried about your own emotions then maybe this is something that you need to say to him. That you want to be there for him but can not cope with the appointment? Explain that you are worried about how you are feeling will affect him? Maybe if you felt able you could suggest that you see him/support him once he is at home from the appointment as a mid way thing? Maybe also just explain that you can not afford to take time off work.
I am sorry that your Nan is also having problems of her own. It sounds like your whole family is in needing of some support. Do consider contacting the Support Line to see what is available in your own area. Also the hospital might also be able to sign post you to anything local. For example at my hospital there were Macmillan Support workers who were able to sort out Red Cross transport for my radiotherapy appointments. It's worth asking as anything may take the pressure off a bit.
I understand you are worrying about what might happen next with Dad but my advice is to try to take one step at a time. You do not yet know what they will be saying to Dad at his appointment. Dad will have a CNS and I don't know whether he has given permission for you to speak with them but this might be something that could be done. They would then be able to talk to you about what may or may not be happening.
There are a couple more forums on here that you may want to have a look at. They are both safe places where you can share how you are feeling and get support for yourself. You are important in all of this and need to make sure you are ok.
(+) Carers only forum - Macmillan Online Community
(+) Family and friends forum - Macmillan Online Community
I hope that this has helped a bit- there are no easy answers but sometimes just sharing how you feel can help. If there is anything further you need, please just ask.
Jane
Hi, what a fabulous reply thank you so much  
my dad has actually gone into the hospital this morning with chronic chest and back pains. His white blood cells are a little high and they want to do another scan. This is all new to me and I don't understand the ins and outs of the progression of terminal cancer. Google isn't the best place to look as there is so much mixed information. Hopefully we'll know more later today
I am glad it has helped. I am sorry Dad has gone into hospital today with pains. Hopefully they will be able to get him more comfortable. Blood tests and scans are all normal and to be expected. I had so many but it is a good thing as they can find out what is going on and treat it. Google is to be avoided- it has so much outdated info. Hopefully Dad will get some answers to what is going on and then you will all be offered some support.
Let us know how Dad gets on and if you need anything else.
Jane
Hello Ewol09
That is awful- am so sorry to hear this. Call his GP this am perhaps?
Jane
Support Line 0808 808 0000 8am-8pm 7 days a week
