My Dad, so scared

[Sqweege]

Hi everyone My darling Dad has lung and prostate cancer. He had radiotherapy for the prostate cancer and his PSA is right down so all is well there, thank goodness. He had half of his left lung removed in February 09. The lung cancer has now returned, he's been told it's not curable and is starting chemo in 2 weeks. He's having one 3hr chemo every 3 weeks x 3, then they will review how he's going and then the same again. He was told he has (statistically) 8 - 18 months. I've watched my Dad go downhill pretty rapidly. He returned from a 2 month trip looking really tired and thin, and assured us he was fine just tired. I knew something wasn't right, my gut instinct was screaming as well. When he had his next tests they said he had fluid on the lung (left side, what's left of it) and he then had the talc procedure (Pluerodesis?) and that's knocked him for a 6 BIG time 😞 They then did more tests, said the biopsy was inconclusive and a lot of "dicking around" (in my & other family members opinion) went on. FINALLY he was told on Tuesday that he didn't have the right gene for the 'latest and greatest' chemo and was given 3 options. He took option 1 as described above. My beautiful Dad is sooo thin and in a fair amount of discomfort as a result of the operation and I'm so concerned the chemo is going to make things a lot worse but then I also want him to do the chemo as the Specialist said it will give Dad some relief. I'm really trying to focus on the NOW, on the PRESENT and not look too far forward because when I do I bawl my eyes out and cannot imagine life without my Dad. It still feels kind of surreal, you know? I do disassociate a bit I've noticed and maybe that's not a bad thing as long as it's not all the time. It's a coping mechanism for me. When Dad was telling me "I have 8 - 18mth to live" I felt like I was in a nightmare, I knew this day would probably come, I knew I would hear something like this as some stage but there really is no way to prepare yourself for that is there!? I was upset of course but me getting emotional isn't going to help my Dad so I "suck it up" when I'm with/talking to him and be practical and maintain normality with him, including joking around at times. I got off the phone from Dad and vacuumed the house bawling my eyes out the whole time, then did the same in the backyard wit the whipper snipper. Then my Mum rang and I howled "I'm NOT READY to lose my Dad" .... urrrrggghhh. I don't want to focus on how I feel, I want to focus on my darling Dad but at the same time I know I need to take care of myself physically and emotionally otherwise I won't be any help to my Dad. I'm sorry, this post is all over the place (just like my head is at the moment!!) I guess I'm hoping to be able to talk to others who understand what it's like. Thanks for listening.

[diannep52]

Hi Sqweege, Just reading your post has brought back a lot of memories from when my dear dad was dying of cancer - 16 years ago. I too watched him fade away over a 10 month period, from a big man who weighed 18 stone, down to a skinny little man weighing no more than 6 stone. It broke my heart to see the man I absolutely adored going downhill so fast. My dad and I used to talk about everything and anything. My mum and sister, on the other hand, had the attitude that if I dont talk about it, it will just go away. My dad wanted to be at home, so I helped my mum care for him. Dad and I would talk for hours, about everything, and one of those was his fear of dying! I was the only one dad had to talk to, that would actually acknowledge that his time was coming to an end. I know it is extremely hard for you (what daughter doesnt idolise her dad!), but I wonder if you talk about your dad's fears with him. Maybe he wants someone to actually acknowledge what is happening to him, and to share his fears. I found that being open and honest with dad, not only helped him, but it helped me too. It is very easy to say 'look after yourself', 'you are no use to your dad if you fall apart' - believe me, these were things that were said to me. But hang on a minute, of course we will fall apart, thats what losing a loved one means!!! Crying is good for you, as it will help release all your pent up emotions. You will never prepare yourself for losing your dad, but trust me, the memories you have left of all the good times, and the times you spent with him helping him through his crisis, will live with you long after your dad has gone! Treasure him while he is still with you, but also dont be afraid to let him see how much this is hurting you too. Be there for him, and let him talk about whatever he wants too with you. My heart goes out to you and your family, especially your dad. Good luck.

[Sqweege]

Thank you SO much for your response Dianne. I've actually just returned from my Dads. He's had his 1st lot of chemo and is doing 'ok' ... he had really really bad constipation from it and I ended up taking him to the doc when nothing would work then it finally kicked in and he was sooo ill, was coming out both ends :( He's not coping with noise and having us (myself and my brother/SIL) with him is irritating him so we're trying to work out the best way around us spending time with him and caring for him without irritating him. He's extremely grumpy and snappy with us, it's awful and we're trying really hard to not react to it, I'd probably be grumpy in his position as well! Is this part of the process? Dad won't talk to a Counselor about how he's feeling or emotionally dealing with things, he's not talking to anyone, and perhaps that's why he's snappy? What can I do to help him? The only person he seems to be happy spending time with is his g/f ... which is hurtful really but what do you do? We have to accept what makes him happy. My Dad and I have always been very close but I just don't know how to talk to him about this, about his fears, I suppose if I could get him alone I might be able to. I've been crying A LOT, soo much, just when I think I have no more tears .... more come. I haven't cried in front of Dad, I try to remain upbeat around him and keep things as 'normal' as I can. I feel like he's pushing me away and all I want to do is spend as much time with him as possible .... but if he needs time alone (or at least without me there) then I have to give him that. There's so so so many emotions and thoughts going around and around. (((Dianne))) I'm so sorry you lost your darling Dad, my heart aches for you and I'm so grateful for you responding and empathising with me.

[diannep52]

Dear Sqweege If only I could give you some 'magic words' that would make this whole process easier for you. I suppose what 'worked' for me and my dad, will not necessarily be OK for you. All I can suggest with your dad not wanting to discuss anything with you is:- Give him a hug (if he will let you) and just tell him that you will be there for him whenever HE wants to talk about his fears and concerns. The thought crossed my mind that maybe he is seeking solace with his g/f and appears to pushing you away, because he just cant stand to see the pain in you and your brothers eyes! I'm sure he realises what a devastating effect this is having on everyone. Rest assured that if he love you both BEFORE cancer, then he still loves you both now! I can actually look at the whole cancer experience 'from both sides' - from losing parents to cancer and now, from ME being the patient!! My mum and dad were given no treatment options, so thank god I didnt have to watch them suffer through chemo! I, on the other hand, have had IV chemo and now undergoing a course of oral chemo as we speak. I DO know what your dad is going through, the unbelievable tiredness that swamps our bodies, the grumpiness, the feeling of being hit by a MAC truck!!! Apparently I too was grumpy with my partner (so he says, haha!). I would have my chemo on a Monday, then every Wednesday morning, I would be in the middle of my morning coffee and just burst into tears FOR NO REASON! He tried to take really good care of me, repeatedly asking me what I wanted to eat, if I wanted coffee, etc but I just felt so crap that after saying 'I dont want anything' for the 3rd time, I would get grumpy, tell him to leave me alone - then HE would get upset 'cause he was only trying to help, then I would get upset 'cause I upset him! And so, the vicious circle just went 'round and round'. I will say though, this only lasted a couple of days, but then would be repeated after each cycle of chemo. There is an old saying - 'we only hurt the ones we love' and I found this to be so true whilst undergoing chemo (speaking from my OWN experience of course!) I guess Sqweege, what I am trying to say amongst all of the above ramblings is - dont be afraid to show your dad that YOU are hurting. Dont be afraid to cry in front of him, or with him. You are not letting you or him down by crying in front of him, you are just being a normal, loving daughter, who cares deeply for her dad. If he 'pushes you away', dont stay away - just tell him that you are 'here for the long haul!'. Remember that he loves you, but this is just his way of trying to deal with what is happening to him. He knows he is dying and now he has had a taste of the medicine that will try to prolong his life, but unfortunately, whilst doing 'its job' - is going to make him sicker! Life is a 'real b..ch' at times, but you will get through this. There is a light at the end of the tunnel. It is all so overwhelming at the start of the 'whole cancer' process, but you will have good days ahead. Treasure you dad while you have him, be prepared for him to be a bit grumpy - CRY AS MUCH AS YOU WANT, and look forward to the 'good days' that WILL surface soon. My heart is with you. Take care and dont be afraid to be normal, I just cant emphasise this enough. Dont try to be 'the macho' someone that you're obviously not! Di xoxo (big hugs to you) (always here if you want to 'chat'!)

[#5]

Hiya Sqweege, Sorry to read about your Dad he really has been through the mill. Di has some good advice in her above message,as a Dad myself and a fellow cancer sufferer I can relate to the things he is going through, I have a low tolerance of noise these days and get quite grumpy quite often, I explain to my kids and Gkids that this will happen and no I can't help it, I put my mood down to still adjusting to my new life after treatment, I didn't have chemo,only surgery and rad treatment but have had some quite overwhelming challenges to overcome(: As Di said tell him how you feel and see if he will open up, I actually went to see a therapist ..ok ok a shrink, on my own doing and it helped me heaps, but thats me. Hope things work out well for you and your Dad..positive thoughts. Dave

[Sqweege]

Wow Di, you're an amazing person, I'm so sorry you're struggling with cancer yourself (!!) and yet you take the time to support others in this way, thank you, you're a beautiful soul. I ended up having a great chat on the phone with my darling Dad last night and I feel I now "get" where he's 'at' with needing time alone to heal and cope with all that he's body is fighting. He said he needs to go into his "cave" right now and that he can't cope with having people around. So yes he needs someone there to prepare meals etc but apart from that he just wants to zone out, watch the tennis or cricket on tv, nap, read and that's it. I totally understand that need, as a sufferer of migraines and depression I get the same way (not that I'm suggesting it's in ANYWAY near similar to what my Dad is going through!!) I talked to my bro and tried to explain it to him but he insisted they still go down so I think really it's up to my Dad to talk to my brother so he can hear it straight from Dad, ya know? I asked Dad about bub (my 5mth old nephew) and that he feels its too much to cope with. Dads in an awful situation there because Dads cancer came back just as bub was born 😞 so he hasn't been able to really enjoy bub very much and he just hasn't got the energy to react to bub the way bubs parents want him to. Again, hopefully Dad can explain that to them one on one. It's SO good to understand it from a cancer patient's point of view Di so thank you SO much for that. I now realise that a change in mood etc is all part of it, god no wonder when you're fighting pain and feeling like you've been hit with a Mack truck!! I cannot thank you enough for your care and support and advice, you're an angel on earth xx

[Sqweege]

Hi Dave Thank you so much for your reply! I'm so sorry to hear you're a cancer sufferer and my heart goes out to you as well. As I said to Di, it's so good to be able to understand things from a cancer patient's P.O.V. My Dads personality has changed quite noticeably since the cancer returned and he's had more surgery and now the chemo etc ... so it is a shock to us to have this different Dad (in a way) but understandable also. We do have a bit of a joke about it and I've had a running joke with Dad for years now about the "Grumpy Old Men" movie and how well Dad would be able to relate to it lol .... so I will say "geesh ya grumpy old bugger" and wink at him and he will laugh. Positive thoughts for sure, thanks again Dave.

[diannep52]

Hi again Sqweege, firstly thank you for your lovely response to my last post - but rest assured I'm not amazing. I just read your post, and felt your hurt and just wanted to send kind words your way. I'm so glad you had a chat with your dad, I just knew he would talk to you about this when he was ready. I cant imagine what it must be like for sufferers who thought they had beaten this horrendous disease first time around, then be hit again with the news that it had returned - these are the truly amazing people! My initial diagnosis was advanced cancer, having already spread to my bones before it was found, so I figure that I am luckier than the 'second time round' sufferers. Your dad and others like him, must have a million thoughts running through their minds. I was also going to mention to you in my last post that I personally think it is much harder on the family and loved ones, (the ones who ultimately will be 'left behind') than on the actual patient. I remember the hurt for me when mum and dad were ill, but now I see that same hurt in the eyes of my children, grandchildren, partner and family. When I am facing a 'new problem' I dont know whether I should tell them all, or whether I should keep it to myself (and partner). I want to spare them the extra worry - but then common sense kicks in, and I decide they have a right to know. This 'journey' is really hard going, for everyone concerned. What your dad says about Bub is so true. My daughter has 5 children. One is 3 (born 12 months after my diagnosis) and the baby who is 18 months. I had a lot to do with the minding, visiting, etc of the 3 older kids (14, 13, 12) when they were younger, but I find I just cant do that anymore with the 2 littlies. They absolutely drain me. Dont get me wrong, I love them very much, but they are just so loud and active. Like your dad, sometimes I just cant handle this. I will have the 3 older kids up to visit on school holidays, as they amuse themselves, but I just cannot have the younger two without my daughter here. Thankfully she understands this, but I often think I am missing out on them. Just remember, Sqweege - we do what we gotta do - to get through this journey - and that includes you! Take care. Di (big hugs) 🙂

[Sqweege]

Thanks Di. My bro and sis in law were with Dad this week and he's been better this week thank goodness. I'm with him next week and taking him to his next chemo. They gave Dad more space this week like he asked for and it worked well so I will do the same. I guess I've been hyper vigilant in a way. I try to make everything 'perfect', the house sparkling (Dad is very fussy like that!), making sure Dad has everything he needs every minute of every day etc, I think I've probably been giving Dad the shits to a degree heh. I've been feeling rather ordinary for a few days, glands swollen, throat a little irritated and sore so I'm laying low and praying I don't get sick!!! Can't be anywhere near Dad if I do :( My Dad is so sweet, he just rang to check on me saying he thought I sounded a bit yuk yesterday ... I'm so lucky to have such a beautiful Dad. Di, how are YOU travelling? (((hugs)))

[diannep52]

Hi Sqweege Glad to hear your dad is doing a little better. I think he just needs time to digest all the bad news he has had. It's lovely to know you are taking him to chemo, that will be a great show of your support to him. It is a very boring day for both the patient and the 'loved one'. My partner drives me to my treatments, but has never come into the treatment room with me, as he dislikes all the needles and chemo drips. It can be quite confronting when our loved ones see the fluid actually going in and then realising what it is doing to our bodies. It used to bother me that he wouldnt come, but then I used to sleep most of the time anyway, so I guess in hindsight, I didnt/doesnt matter. Try not to overdue things when you are with your dad, I'm sure he wont mind if something is not done immediately. I'm sure you havent been giving him the shits, he is prob just worried that you are doing too much. As my g/kids say to me - 'take a chill pill' (cheeky little devils)! Sorry your not feeling very well, this is prob due to all the stress with your dad and you trying to do too much. This has all been a big shock to your system too. I'm doing OK - day 3 of no drugs today (1 week off) and I must say I feel much better. I didnt realise the oral IV had as many side effects but after how I have felt for the last 2 weeks, compared to how I feel today, they were doing more than I thought. I'll see what happens next cycle. My daughter, SIL and 5 g/kids came up tonight. Daughter/sil will go home on Sun and I will have the 3 older g/kids until Wednes - that should be a test of my strength, haha. I may not be online much while they are here, 3 teenagers all want to use the computer, so I may not 'get a look in'. Hope you have a great weekend, and enjoy next week with your dad! Hope you start to improve shortly - get a lot of rest. Take care, talk soon Di:)