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Hello, I’m new to the forum

11 Jan 2018 23:59

Hello Everyone

I just wanted to say ‘hi’ and to get some advice.

Tomorrow, I'm driving a 240 miles round trip to collect my younger brother to come and live with us. He has a very rare form of cancer and sadly it’s terminal, he is 41. I live with my blind partner, our autistic son (12) and our daughter (10) so I have my hands pretty full already. We don't have a spare room and only a downstairs toilet so I’m going to make a bed up in our lounge. I could really do with some advice on what my brother will need to make it comfortable for him living here and to get the right support. I live in Wiltshire. We lost our mum when we were teenagers and our older brother died 8 years ago so it’s only me left (Dad left when we were small and we’re estranged). As you can imagine I’m pretty devastated to be going through it again but i want to get as much help and information that I can to try and stay as strong as I can. 

Any help much appreciated. X

Re: Hello, I’m new to the forum

12 Jan 2018 08:16 in response to Celbelle

Dear Celbelle.  You sound to be an amazing and loving wife/mother/sister and heaven knows what else.  So much love.  I seem to be always advising people to ring MacMillan Cancer Support (Freefone 080 808 0000) and have to reiterate I have no connection with them other than one experience when a friend was dying (I was not his primary carer but from what I saw and others told told me they were so helpful).  But I think in your case they could give you a lot of help and save you worry.  They will support you as well; as you say your hands are pretty full already and you could do with the best advice and support you can get.  This is going to be a difficult time for you and although you seem to have lots of love to go round you need to care for yourself too.   Other people on this forum will probably be able to give you good advice from their own experiences too.

Re: Hello, I’m new to the forum

12 Jan 2018 09:52 in response to Annieliz

Hi Celbelle,

One thing I can add to what Annieliz has said is to try and act as normal as possible . Cancer patients like to try and live as near normal a  life as possible as far as their condition allows. Otherwise it feelslike the  cancer is dominating every aspect of theis life.i found when I had cancer, Iallthough I talked openly about it to my wife, I tried to keep life as normal as possible for it made it feel as if I had some control over things. It was only as small thing but it made a big differnce.to me.

What a caring person you are but as Annieliz has said, you do need to look after yourself too. Looking after someone with cancer plus all the others in your life will be very hard. For its so hard seeing someone you love suffering from cancer as Iknowall too well having lost twelve members of our families to cancer oiver the years. You will need to make some me time for yourself to help you cope. 

Sending kind thoughts your way, Brian.

 

 

Re: Hello, I’m new to the forum

12 Jan 2018 20:15 in response to woodworm

Thank you both for your lovely responses, the day has gone very smoothly and my brother’s now getting some much needed rest after a long day. Thankfully I have some wonderful friends who are only too happy to help where they can and a great mother-in-law too!

Monday, we’re going to the Dr’s to get Justin registered and we’ll contact the local hospice to try and get him a suitable bed to protect his pressure points and help him to get in and out easier. He was unfortunately diagnosed with MS 8 years ago too, so he’s quite wobbly on his pins, (just as his first wife was dying of cancer, he really has been dealt a terrible deal) but despite it all he still has his sense of humour and we’re planning to do as much fun stuff as we can!

I’m sorry to hear about your own experiences with cancer Brian and wish you all the best.

Many thanks again to you both x

Re: Hello, I’m new to the forum

13 Jan 2018 08:29 in response to Celbelle

Hi Celebelle,

Glao you have good support from your friends. Your poor brother does seem to have had a bad deal from life. But his sense of humour will help enormously. When I was diagnosed with prostate cance a few years ago, one or two people found it hard to understand that I was still laughing and joking. But I told them it was my way of coping with the news and I wasnt going to let it get me down as I was going to beat it.

Hope you are able to get the help you need re the bed and other items.

Sending best wishes and kind thoughts your way, Brian/. 

Re: Hello, I’m new to the forum

13 Jan 2018 08:50 in response to woodworm

Dear Celbelle and Brian.  Just a little anecdote I have told before in connection with maintaining normality.  When a neighbour of mine was terminally ill he was moaning (I have to admit he was a bit of a moaner at the best of times!) that everyone was tiptoeing around him and treating him as though he might shatter at any moment.  He wanted to be treated as the person he had always been.  When a council carer was a bit abrupt with him one day my neighbour was ever so pleased as it meant he wasn't getting special treatment from at least one person.  Takes all sorts but he had a good point.