[jgjaneParticipant]

My dad has just been diagnosed and due to start treatment next week, a 6 week cycle, it’s v overwhelming all the info and the treatment regime looks a lot to take in. He is 78 my mum is 83, I was thinking to sit down and go through the treatment plan and write it in diaries first then look what do we read next or find info on, there seems so much, do we look at side effects so we are aware and ready? Thank you

[rebeccaRParticipant]

Hi sorry to hear your news and I know how overwhelming this is but there is no big rush to know everything now as you are in this for the long haul. My advise is for you to read all the info etc found on this site re treatments, MM etc but only share the info when your parents ask – it is a huge shock and often you only want to know things when you feel ready so go at their pace not yours. Have some good news snippets of info when appropriate to encourage them.The hospital will go through side effects and you can read up so if your father experiences things you can inform and reassure. Personally I was never told of side effects to things (small hospital) but I think it was better as I was not waiting for them or worrying over them. Just take each day as it comes and be ready to lift spirits, encourage, inform, as appropriate. If you go into consults with them write down any questions they want answering beforehand – do not ask anything you want to know but your parents haven’t expressed a desire for. This is very important as it takes a long time to feel comfortable with it all so it must be at your fathers pace. Some people just want to hear “they are doing ok” others want to analyse all lab results etc – whatever works for them. You can, of course, request copies of results and check trends etc yourself if it helps you and then when they want to know something you may have the encouraging news they need to hear. Whilst it affects all the family profoundly the person who has it must be able to steer/navigate the journey – we have very little control in the scheme of it all but this is one thing we can control. MM is a very complex and very unique cancer and no 2 people react the same – it is important to remember this when looking at statistics/treatments/side effects. Over the coming months you will no doubt learn/understand a lot about this disease but the important thing to recognise now is that you have the time to do it slowly- it is a marathon not a sprint – you must be the cheerleader on the sidelines spurring them on. What I found useful was planning little treats/outings etc something that took my mind off it all and put a smile on my face.
Take care
Rebecca

[jgjaneParticipant]

Wow I can’t thank you enough for your reply, it has really reassured me, and helped me so much, this makes so much sense to me, I have already read some examples of people living with this and what has helped them and good stories so I will have them at hand if needed, but really take your point about letting him steer this, and being a cheerleader, I can do that, again many thanks, and all the best to you, 😊

[peterlParticipant]

Hello JGJ,  really sorry to hear about your dad, and yes it’s a complete shock for everyone, including all his nearest and dearest who are close and take an active part in his care. I was diagnosed back in the summer of 2015, and my lovely specialist nurse gave me a Macmillan organiser. It’s a fairly thick diary type book (free) with lots of useful info in. I used it to track the side effects of the chemo and support drugs. It’s a bit of a chore, and in my cases, initially there seemed to be little pattern in the number of “good days” when I could actively do lots of exercise and frankly enjoy life. But overtime it became an invaluable aid and I used it every week!  I don’t say to use this in the presence of your dad, because as said above, this may not be the best approach at all. But it might be for you?  Also if you dad has a treatment cycle, and he doesn’t feel quite right, you might say to him that it’s because of the treatment and nothing to do with the disease getting worse. I know this sounds obvious, but I know several people, early diagnosed, that thought it was MM getting worse.   Yes, it’s a long haul, but there are some amazing posts on this www, regarding the effectiveness of the treatments and long (very long) periods of remission.  The very best wishes to your dad and all the family, and the very best of luck with his treatments. Peter

[jgjaneParticipant]

Another Thank you 😊 , your reply is invaluable to me as you have been there at the beginning of this journey, I’m noting this and the diary sounds great idea, my dad has already said to me. , shall I get a wall planner” he wants to go through all the info the nurse gave him today of what he has to do when over the next 6 weeks, I’m so grateful for your words, all the best Peter 😊

[ethanscottParticipant]

Exactly. Gather all information and try to be informed about the procedure so that you are prepared for everything. You are in this for the long haul and you should stay positive.

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