Not doing great

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Hi all,

my brother has just started chemo for stage 4 rectal cancer. He is having Folfiri and panitumubab. His infusion finished on Friday and he is so down and depressed yesterday and today. He has not slept properly for about 6 weeks now and it’s really catching up with him. He is normally very active and fit but he is very very tired. I have tried to reassure him that this is to be expected and to just rest when he has to. He’s not got out of his dressing gown today, which I think is fine, but it’s so unlike him. I don’t know what to do to help. A well meaning person told him that he must avoid infections at all costs, which is true of course but now he is obsessing about cleaning and checking his temperature etc. Sorry for this long winded post, I guess I just needed to tell someone. Feeling useless and pretty helpless at the minute. I have not gone to a party tonight for my nieces birthday because I don’t want him to be anxious about me exposing him to the risk of infection. I don’t mind doing this at all but I think that we are in this for the long haul, my question to the group is how can we achieve a healthy and realistic way to live a life while going through this experience. Our aim is obviously to improve things for him physically but it would be a pointless exercise if this was at the expense of his mental health.

court over 3 years ago

Yes you definitely can find a balance on the infection front ! The first year my mum had chemo someone did the same to her ! I could swear if she could have fumigated me at the front door she would have ! I kind of let it go for a few cycles till she got fed up with it herself then we introduced a better balance !

If we went out we were first in the coffee shop so less people , cups that had not been handled too much ( could take your own ) and common sense ! Asked people to stay away if they had a cold . The second year she had a much better balance ! The steroids can be a bit rough on their moods too ! So that might be still impacting this cycle !

I would chat through with him what would make him feel safe like coming to your home with the reassurance you will anti bac everything ! Just to feel if there is a way to make him feel more comfortable!

It is also a good one to get the nurses to take the lead on ! There is a period of the cycle when your more at risk . I think a booklet I read recently said days 7-14 ( please check it out ) but that might reassure him . If his bloods changed obviously time to be more cautious but if they hold up then that’s something to feeL better about ! My mum had no infections over the two years ! It was her platelets that nosedived !

Using face masks , well ventilated rooms and all the other covid rules are quite compatible with infection control ! I would let it run a little . Maybe encourage some walks first ! I wished I had done more of that the first year and the other one I did not get a finger on quickly enough was dehydration . The problems that caused . After that I kept a water bottle handy and made sure she had small frequent sips !

My mum had a sleep most days!

It’s hard to watch at times isn’t it ? But keep doing what your doing ! It’s the pulling through it !

Take care ,

Court

Helpline Number 0808 808 0000

court over 3 years ago in reply to court

https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/cancer-and-fatigue-when-do-you-start-feeling-less-tired

Wee blog for you to read ! Not read it all but popped up at the bottom of the page !

Helpline Number 0808 808 0000

Lozberry over 3 years ago in reply to court

Thank you again for your very valuable support and words of common sense. I am so worried about this brother of mine. I am his only support through this, he has shut everyone else out. There’s no talking to him about it, he’s firm that he doesn’t want anyone interfering. He’s a bloody pain in the backside sometimes and I’m sorry to say I have felt very cross with him on one or two occasions this week. The guilt about that is killing me, I feel terrible. I have only FaceTimed him today, I feel like I need to regroup, get some strength and carry on tomorrow. I am also so very tired. It’s not about me though, I will be okay when he is more settled. It’s been a rough time for him, he lives alone and really only has a small circle of close friends that he refuses to see. He will come to my house, he’s not anxious about that at all, and I am doing daily lateral flow tests to reassure him. He is a stubborn person and wants to do things his way. I will of course do what I can for him but jeez he needs to look at this as a marathon not a sprint and start to think about LIVING with this disease. Thanks for listening, I really apprecIate it.

court over 3 years ago in reply to Lozberry

All sounds very healthy to me ! My mum became very insistent that she knew what her body needed and that was in her mind very little fluids ! We had a few cross words about that !
I remember feeling so guilty but trying so hard at the same time as I knew the implications!

You are an amazing support to your brother and keeping it real at the same time ! You love him Deeply and that includes being truthful with him !

Taking time for yourself now and again is essential in the long run !

Take care ,

Courtv

Helpline Number 0808 808 0000

Lozberry over 3 years ago in reply to court

Thanks again,

Todays a new day, let’s see what it brings. The balance between his physical and mental health is going to be a challenge, his expectations and hopes for this chemo are very high, so he wants to do things by the letter. He doesn’t realise that he can’t separate the chemo from everything else and I am a firm believer in treating the person as a whole, not reducing them to a series of body systems that need to be fixed. His whole person needs to be well to get through this. He’s getting his clothes on today and getting out of the house. He can decide what time that happens but that’s the only bit that’s negotiable. Haha I’m an intensive care nurse and I’m very persuasive when I have to be. God give me strength today, I feel like screaming at him sometimes.