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Dont know where to start

Sassyj66
Posted by

Hi everyone 

I don't really know where to start?

Forgive me if it's a long post. My sister had skin cancer 6 years ago and after 5 years was given the all clear. 4 months later she had a seizure and was rushed to hospital. Whilst in there they told her she had a brain met and Mets in both lungs (very shocked and angry) told she had braf gene and was put on braf inhibitor immunotherapy . Brain tumour was removed. A year later and she has been in and out of hospital diagnosed with acute colitis .

She has lost so much weight and is quite weak but still trying to fight and do as much as possible 

Me and my mum are with her as much as possible as she has quite severe depression and anxiety. I'm not sure what more to do I have a form of blood disorder for which I take chemo drugs and get tired. My mum is in her 70s so also gets tired. 

My niece just got engaged and my daughter is getting married next year and I'm frightened my sister won't be here for it or she will be too ill to attend.

Thank you for reading my post. 

rily
Posted by

Hi Sassyj66. Sorry to hear about your sister. It sounds as though she has a really hard time of it, and it must be hard for you and your family. We have a very friendly and supportive group here which you may find helpful to join, Family and Friends . There you can share and get help and advice from others with loved ones affected with cancer. Best wishes.

Sassyj66
Posted by

Thank you Riley I will l take a look at the group.

ShimmeringUnicorn
Posted by

Hi, you have an awful lot going on and are to seek support for yourself. 

This is a great place for advice and info but also a place to scream, shout, stamp your feet, cry, get and give hugs, laugh, get reassurance that you are not going crazy or to state that you are : )

Are there any groups locally that could offer practical and emotional support? Son groups like Fibromyalgia for etc are fab re living with fatigue etc.

Good luck and take care

Sassyj66
Posted by

Hi Thank you  for your kind words

I am very lucky we have a close knit family who are very supportive of each other. It has been lovely to talk to other people that are all going through it themselves .this forum has been a real benefit to me.

I'm so glad I found it.

I'm definitely a little crazy but I don't like normal lol

Thanks again 

Sarah x

Thehighlander
Posted by

Hi Sarah, just dropping in past from along the corridor as I hang out in the NHL forum and one of the first things that caught my eye was your Tag Line:

Don't forget to laugh and dance in the rain.

Take the time and opportunities to do some crazy things as a family as it does reduce the stress and helps build hope, hope is the main thing we all can still control. 

All the best to your sister and lets all hope that she will do far more than just be able to get to the wedding next year.

A big Highland ((hug))

Sassyj66
Posted by

Thank you Mike.

We all trundle along in this strange world and it is only when we are confronted  with such devastating reality that we stop take stock and realise what is missing . It's taking time to enjoy every magical moment . We all complain it's grey its windy it's raining. But we forget to dance in the rain and let the wind spin us round and above those grey clouds is a beautiful blue sky .

Take care Sarah x

Thehighlander
Posted by

Sarah, rily has given you a good place to connect in with those who are supporting family in the cancer journey - worth a check out. You can lurk and get a feel for the forum and when you are ready hit the 'Start a Discussion" tab and put a post out.

My NHL journey is now 18 years old so we took all our family and friends with us on the journey and were so grateful for their support. When I was in hospital 9 -10 hrs round trip away from home. Some did the journey just to support my wife as I was in ICU. But to be honest, over time, even these memories start to get rather blurry at the edges.

Its rather a grey and overcast day up in Inverness today but as you say - when times get hard and they do, we always need to find our happy places where we can unpack and unwinded, just like the place below that is 10min drive from our house.

Please take care and care for the carers is so important. - a second ((hug)) full of hope x

ShimmeringUnicorn
Posted by

Ooh truly beeeeeautiful...a place to absorb however we are feeling...places that were here before us and go on after us...putting our existences into perspective.

Scream, cry, smile...such places can take it all...any one else got a pic of their place?

It could be the cupboard under the stairs, the bath,...somewhere local or faraway... Somewhere you have been, would like to go or just virtual...as we can see...images are mighty powerful : )

Thanks for sharing, take care

Sassyj66
Posted by

Wow that is beautiful.

Thankyou

I don't know how to add pictures x

Thehighlander
Posted by

Hi Sarah, you have enough on your hands at the moment but once your head comes up above the water give me a post and I will show you how to post a picture ;)

What type of blood condition you have?

Always look for the happy things in life as life is journey of little steps each one a memory.

.....and another picture to brighten your day :)

Sassyj66
Posted by

Lovely picture Mike Thank you

I have polycythemia vera jack2 they started me with venesections when that didn't work they put me on hydroxycarbamide and aspirin .I'm on 9 meds a day but don't ask many questions as I like living in ignorance x