Dad just started chemo, finding it so hard

[Thisisverytricky]

My dad who I am very close to has just started chemotherapy for a non curable, but hopefully treatable cancer. Outwardly I hear myself being all positive but inside I'm crumbling. I never expected it to be so hard. He's not good at remembering meds so I have set alarms on his phone for when he has to take them all. I can't stop googling, and thinking about how long he has left and what the side effects of the drugs are. How do I calm down?

Are there any Macmillan nurse on your dads ward or Marie curie nurses? They can support the patient and families of those affected by cancer.

Please, please try not to google. Just concentrate on what is happening to him.

I googled a lot when I had cancer and chemo and it did no good. I realised only my results counted.

Thank you both. The hospital gave my dad a McMillan pack so I'll look at that today and ring them. He's already struggling to remember what to take when (apart from fortnightly infusion meds are all at home) so I have made him a list with times of what to take and when. I just couldn't sleep because it's all going through my head constantly

How you feel right now is totally normal but Google is not your friend. .

Setting alarms and doing a list are great for your Dad. His brain is probably over run with his diagnosis the whirlwind of appointments, tests and the side effects of chemo. From personal experience I know it is hard to keep on top of everything.

Try and arrange to have a chat with Macmillan or his specialist nurse if he has one. They will be able to support you.
Sending gentle hugs

Thank you Minxmumma, I phoned McMillan and have an appointment with them. They have also suggested that I apply for a blue badge for him because mobility is an issue and we are struggling to park at the hospital because the car park is always so busy! Practical help like a blue badge so that we could park for appointments would be so useful.

I found keeping a list of contacts on me was a big help. Then always have what I need for any situation.

Macmillan benefits helpline local office can do the blue badge application for you, it makes life much easier. They literally send it to you to sign and post. They can also sort out anything else your Dad is entitled to and help to navigate the process.

Never google! Are you nearby?

Try to be there at appointments and take notes - write down questions and take them too. It’s impossible to remember all that’s going on.

Did they give you a debrief before the treatment started?

He might loose his appetite and feel wobbly after treatment and he must take good care of his teeth (send him to the dentist). I suppose he is on anti nausea medication too. No flowers or plants around and try to keep everything as clean as possible.

Maybe do a wall chart for the medication with ‘tick off when taken’ written across the top - it’s so easy to forget what’s been taken.

Try to keep him busy - he won’t feel like getting up to much probably and you don’t want him thinking too much about illness etc

Sorry you are going through this - you need to be practical and organised right now though for him.

Thankfully I am local and able to go to most appointments. I have been armed with a notebook! Sometimes I find it hard to ask when I have questions that my dad isn't ready to be asked... He is ticking meds off the chart I made as he takes them and thankfully hasn't had too much in the way of side effects yet. I'm glad to be in touch with McMillan, they were helpful on the phone and I have my appointment with them next week.

Oh - thermometer! Did they tell you to get one to keep an eye on his temp?

Thank you Lordfrontpoor, they even provided him with one at the hospital! Told him to take his temp twice a day and so far it's been exactly the same each time
The support on here is so reassuring, thanks everyone

I'm also trying to persuade mum to get a cleaner, fighting a looking battle there though. The house isn't as clean as I'd like and a few months ago I took a day off work and spent a day thoroughly cleaning for her but I can't do that again, especially with the time I'm having off for appointments. I think she's emotionally exhausted and just hasn't the energy to clean, I'll have to keep chipping away at her with that one I think!

Looking battle?! Loosing battle ...

Sorry you're going through this.

If you find you can't sleep or focus because there's so much swirling through your head sometimes it can help to just scribble it all down in a notepad to worry about in the morning. It's almost like the brain then relaxes and lets go of the worries and fears so you can sleep because it knows how you've written them all down it doesn't need to keep going over them to make sure they aren't forgotten.

Keeping a notepad and pen ready by your bed can help.

Sorry for what you are going through, I went through the same it my Dad.

With my Dad the meds from the hospital pharmacy all came in plain white boxes with labels with tiny writing on them so we colour coded the boxes and made a daily chart with those colours on at the right times to make it easier take the right things at the right time.

To your mum getting a cleaner might feel like surrendering control, when this diagnosis has already ripped lots of control away. Us humans need to feel we have some control over our lives.

Is their home a health hazard or just not at the standard you're used to/prefer? If it's safe, habitable and not depressing to live in I would save your energy for something else.

No, it really isn't a health hazard- she just seems to be finding it hard to keep on top of things. Today there were piles of washing everywhere because she felt that she didn't have enough for a full load! I brought that home and have done it with mine which is no problem. Maybe if I do their washing she can do other things. I think you're right and it's a control thing, she thinks she should be able to do everything

If there is a Maggie's Centre near by, get in touch with them too if you haven't already. They got my df's blue badge sorted and he really enjoyed going to some of their groups. They have loads of different things available.

Just been to see him and he is ok so far which is a huge relief. Nothing much in the way of side effects, the nurse had warned that the antibiotic he is now to take 3 times a week could cause a rash/ diarrhoea and he is allergic to several antibiotics so I was worried but so far so good

I am glad he is doing okay so far @Thisisverytricky - I hope it continues to go smoothly.

@Thisisverytricky, when you talk to Macmillan ask them about attendance allowance, as your dad may qualify for this and it could help out with any extra bills - heating, travelling to hospital, or even that cleaner.

Thank you for your good wishes, the support on here is lovely! I will ask about attendance allowance, thanks. The hospital travel and parking costs do add up and maybe they would be more willing to have a cleaner if they felt they had an allowance for it! I have just looked at the form online but it's rather daunting so will ask the McMillan support worker when I see her. He's very tired and emotional today but I think it's a combination of steroids and he's had a busy day going out with friends for a meal. All he has tomorrow is a blood test so hopefully he can rest a bit then.

Been a hard day today he’s not feeling good. I’ve persuaded him to ring the hospital tomorrow if things are no better ... although I may end up ringing myself because I’m not sure he will !!

Sorry to hear it, in what way is he not feeling good?

I don't know if it is the same everywhere but we had a 24h chemo unit phone number we could call any time for advice, if you have the same it might be worth talking to them just to sound out his symptoms. We left it a bit late at one point and it could have gone very wrong so I might be being over cautious though.

Thank you StormGerda, he refused to ring saying I'm fussing about nothing however he let me ring. He's exhausted (but not sleeping so that's understandable), has a bad headache and temperature was raised, still always less than 38 though which the nurse said was a good sign. The nurse I spoke to checked other symptoms which he doesn't have and feels that this could be a normal response to the drugs. He is now having a telephone consultation tomorrow and has to keep checking his temperature.

However I'm getting wound up and anxious about so many little things, I wonder if I need to talk to someone (am seeing McMillan person on Thursday) I know that I am irrationally anxious about everything and am wondering if I need to see a doctor for myself. I need to keep strong to support him and at the moment I'm dissolving into tears every time I'm alone which isn't like me. I'm also finding making decisions so hard, decisions about any little thing, nothing relating to dad!

I am glad you called, I know you will still worry but hopefully having talked things through with a specialist nurse you know his symptoms aren't a significant concern at this time.

What you are feeling is entirely normal and tears are to be expected, it's a huge thing to go through. It's certainly worth seeing the doctor yourself, any support you can get is a good thing.