STOPPED IN OUR TRACKS - FOR NOW !

Hi Hillsider,

I just read your other post minutes ago and so reading this is like having the box set! Lol

…so happy you went to Africa and had a ball! I’m sure Colin loves having you at home but what a crap thing to happen with his hip. 

Im so heartbroken and reading your posts has made me more positive. Getting the diary out to plan a few more trips now….but like you we love our life locally .. Bonny Scotland is so beautiful. BTW you are a wonderful nurse!!

love from Louli xxx

Oh Louli thank you.  I sometimes feel if you write things down it helps to deal with them.  I know in times of stress years ago i kept a journal and this helped me. Every day Colin is getting a little bit better and the doctors have talked to his consultant to sort out his steroid medication so he takes it everyday now, the same dose.  We will see if that helps.

I am glad i have inspired you to plan some trips, i got a lot of inspiration from others on here and it is such a help to read hope others are coping.  I know that there are many people on here who have no more treatment like Colin and have as they say "passed their sell by date" and get on with life while they can.  I think a good positive attitude helps but i know that it isnt easy to be like that all the time so it is so nice to be able to come on here and get things into perspective as there is always someone who is in a worse situation as yourself who amazes you with their attiture and outlook. t gives you a wee kick up the jaxy and brings you back to concentrate on the today.

I look forward to hearing your news and lets all keep insiring each other.

Take Care 

Liz xx

Well, we are just back from a beautiful mini break in Perthshire.. it was much loved and much needed… we are closer than ever! 
when we came back we found out we are going to be grandparents for the first time!

We have some good news to celebrate and a new focus…,

All the very best!

Louli xx

Hi. I loved hearing your positivity and getting up and going to Africa. Amazing people. Jyst quick question   how do steroids help Colin?. My partner has terminal liver cancer. Wonder if help him. He is not very positive as gets tired so easily znd I find difficult to be upbeat and positive and get him to do things like go away,  as feel he has to want to do it, otherwise it would be a nightmare.  

The last time we spoke to Colin's consultant he suggested trying steroids to increase his appetite and give him a bit more energy. From the previous consultant visit he had lost around 4 1/2 kilos and had no appetite so it was worth a try. They dont work for everyone and have side effects but as far as we are concerned there is nothing else that they can offer so it was worth a try.

Colin has a better appetite definately and his weight is more stable for now.  He does also have a bit more energy too but sometimes has trouble sleeping at night which is a side effect. All in all it is worth it for him to be able to have a better quality of life. 

I have always been the one to plan things and Colin would probably just stay at home more if i didnt push him a bit but to be fair it was the same before he got cancer. I just want him to get the most out of the time he has left and i know that one of these days he wont have the energy to get up and go which i do understand but i suppose havent accepted yet. 

I suppose we have to respect the other half's wishes and some people are just happy with the simple things and we have to accept that. Someone wrote on one of the chats that when someone you love has terminal cancer you start to grieve when you find out, i thought this was a load of rubbish when i first read it but living through it i agree you do grieve, for the life you wanted to have for the future with them and for what you are losing and not going to be able to do.  Its hard not to punish yourself and stop being angry with the why him ? why us ? but then you think why not him? why not us ? 

We all have our coping stratagies i guess and sometimes they work and sometimes we just crumble for a while and then get back up and be strong for a while.

We are all on a journey, it isnt the same for us all but we cross paths and help each other along the way.

It might be worth an ask about the steroids. I dont have much knowlege of them but maybe ask on another thread as there may be others using them who can give feedback.

Wishing you and your partner all the best.

Liz x

Oh that is wonderful news, being a grandparent is fantastic and when it all gets too much you just hand them back 

Having a new focus is great and i am so glad you enjoyed your break.  Just a wee change of scenery does wonders for the soul.

Take Care and keep us updated please.

Liz x

Love the positivity! We’ve had the most awful eight years which started with my husband having a breakdown and taking two years to recover, but was quickly followed with a motorbike accident where he ended up with an open book fracture on his pelvis and ten days in a coma. Two months later he came home from hospital and spent two years getting back to relatively good health (apart from brain injury which affects his memory, mood and concentration etc). To top it all, he was diagnosed with very advanced MM a year and a half ago, so we spent all of last year in treatment and recovery.

BUT…… we have now decided we are going to get out and about. Myeloma is not going to completely fill our lives! We’ve always been active and very sociable people, determined to enjoy life no matter what….. soooooo….. we had a tow bar fitted to our car and bought a caravan which will become our sanctuary, our place of happiness. After being ‘locked away’ for over a year we are going to create more happy memories to hold onto when things get tough again. I’ve booked three trips away (all working within the ongoing appointments) and for the first time in many months we are excited and feeling happy! My husband has something else to focus on and his confidence has lifted. Life is good and we are going to enjoy it!

Love, love, love your wonderful posts, so uplifting and bright. Thank you soooooo much. Love and hugs Marion xx  

Marion

My you have been through the mill.... my heart goes out to you and your hubby. Now i love the BUT - thats the way to do it.  I liove your attitude and i hope you have great caravan trips.  We have been buying bits and pieces for our Motorhome and Colin is getting about a bit better after his hip replacement and only using one crutch now and managing to get in and out of the motorhome now so he is determined to get it ready for our first trip which hoipefully will be by the end of May.The cancer is still there but it does help to have another focus and we havent talked about the Cancer much lately to be honest.

We have better things to talk about.

Keep us posted on your adventures please. 

Hugs back

Liz xx

Sooooo….. we came back from our first four night trip away! Had the most beautifully warm weather and found some amazing walks, one of them being the Stockbridge Downs in Hampshire. We walked up the top of this hill, sat down together and looked across and enjoyed the most most spectacular views! It was stunning and so relaxing. We just chatted and chatted (Myeloma was not mentioned once) and felt incredibly close together before heading down again and walking back to our caravan. 

In the mornings I was up early and walking our dog, Harry, before anyone else was awake, the air was chilly but bright and fresh, not a cloud in the sky, the birds were full of song and the quietness was amazing. Partridges were scampering around and sheep were in the distant fields….. it was heaven…..

Can’t wait for our next trip in two weeks to Wimborne in Dorset, which is only for three nights but have already checked out the area and am looking forward to more of the same again. Woohoo! Life is good and we are smiling again……

Oh Marion how your post has made me sooo happy . There is an appreciation of all the small things that makes the Cancer take a back seat ! I’m so glad you got your caravan trip and many more trips to come .

colin is seeing his surgeon about his hip on Wednesday and we hope to get away in the Motorhome soon as he is doing amazing and not using any crutches at all now. 

it is good having a trip to look forward to and keep us focused on cheery thoughts.

great to hear your news.

keep smiling

Liz x