I -was- coping with my cancer, then my brother was diagnosed

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The past 24 hours have been tough, very tough.  I'm about to have a stem cell transplant, I have advanced myeloma. I have lesions throughout my skeleton and fractures. I can't stand for more than a couple of minutes and rely on help getting to my appointments, have to be wheeled about a lot of the time.  My older brother has been helping me a lot with getting to my appointments that are an hour and a half away. He is the driver of the car and the wheelchair. 

Yesterday, after years of him trying to get the doctors to recognise his pain, he was told it is highly likely he has kidney cancer.  Back in 2012 he complained about pain in his side, and a hospital visit showed that there was a possibility of a kidney stone.  He eventually got to see urology, who detected what they called a cyst. Over a few visits this cyst had grown, but the consultant wasn't concerned and said he no longer needed to go to clinic but they would discuss his case in future meetings.  Years passed, the pain persisted and it got to the point where he got a private MRI.  The "cyst" is now 4x4x6 cm on last measurement. He spoke to his GP who ordered a CT scan.  When the hospital had recently been contacted about the MRI results, it was then discovered that my brother had been placed on a do not contact list for years. They admitted they didn't know why and now he is getting care again.  I want to add here, my brother has Asperger's, so he doesn't effectively communicate his pain always, and isn't as proactive as maybe a neurotypical person can be. Yesterday was very difficult for him. 

My relationship with my brother is close, though I act more like the big sister than the little one.  When he was told of my cancer, he found it upsetting.  When I found out about his, I was upset yes, but also very angry. Angry at how he has been treated as a patient, and angry that cancer has not only hit me, but him, and my aunt who passed away a couple of weeks ago.  I am trying to be very strong, I'm not doing a great job right now.  I don't know how we are going to manage over the next few weeks.

We have a little family that take care of one another. My mum is 77 and not in good health, my daughter has just turned 18 and is autistic, has tourettes, hypermobility and a few other things I wont go into.  We're like the not so fantastic four.  The way our appointments are falling is that he will probably be in hospital when I am, just I will be in Cardiff and he will be in our local one.  He should be out in four days, I'll be in for 2-6 weeks.  So homelife is going to be very, very difficult for my daughter and mum.

Thankfully, I have nice neighbours, but social services here aren't the greatest.  He has been given info about Macmillan, so although I don't have a nurse, they might help him in some way, so I know it isn't all doom and gloom.   I am just hitting rock bottom emotionally and needing to express it.  He has a pre op appointment coming up and I don't know how, but I want to be there for him. I'm not really allowed to go anywhere though right now due to my upcoming transplant.  I thought I could perhaps be on the phone during it for him, but the signal in that hospital is awful, then again the wi-fi isn't so bad so perhaps he can have me on a video call, like a portable floating head supporting him, I don't know.

It's all very, very crap right now.

  • Hi again  so sorry to hear about your brother....... this is especially challenging as you are about to go for Stem Cell Transplant (SCT)......... please remember that our dedicated Stem Cell Transplant support group is there for you as you will connect with others who have navigated the SCT journey...... as a slight encouragement I was 'only' in my SCT unit for 28 days for my first Allo SCT then 29 days for me second Allo SCT.

    As for your brother, this is a challenging time for you all. If he is diagnosed with Kidney Cancer then do connect in with our dedicated Kidney cancer Support Group as this is a safe place to get support.

    You may also find our Family and Friends and Carers only Support Groups helpful.

    As always the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    All the best with the SCT roller coaster and if you want to chat during your time in the unit you will always find me in the Stem Cell Transplant support group.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike, I'll see you in the SCT group!  Hugs back at you :)

  • Hi GroguLove,

    I've seen lots of your responses to others on line and you are always so very positive! (I love your 'We're like the not so fantastic four'.......humour definitely helps!!)

    You really have had a very hard 24hrs and I'm so sorry to hear about what you have going on right now, but you will cope and get through it. Please take all the help that is out there (I know sometimes its hard to find and just sometimes you may have to be a bit pushy) but there is help.

    I'm sure yesterday was a huge shock with your brothers possible diagnosis (and yes, I'd be fuming this wasn't picked up earlier and he has been left) but don't waste precious energy on anger (that can be dealt with later). You strike me as very much of a can and will do person so I'm sure once the initial shock, anger and panic have eased you will be able to sort out the next few weeks and make sure all the appointments and surgeries happen. You will find a way of being at the pre-op appt with your brother, one way or another....even if it is as a floating head on a phone! You said you have good neighbours, and I'm sure they would be more than happy to help out in anyway they can. It's at times like these you know who your friends really are and I'm sure they are very fond of your 'Not so fantastic four' and will do whatever they can to help.

    I'm really sending strength to you all, please keep us updated. 

    Take care xxx

  • Hi TheBoys and GrogULove

    Can I add a little bit?

    Just a thought about your brother's appointment....it's a great idea for you to be there in a 'virtual' way, if it can be managed somehow. Is there anyone else who might be able to go with him? A friend of yours, or his, someone he trusts? 

    As you say he has Aspergers, does he have any contacts with support groups or an Aspergers charity, who could help with providing an advocate? or a befriending service?

    Even if this isn't possible for his next appointment, it could be useful to build up a wider support network of some sort for him, if this is acceptable to him of course, going forward.

    I hope everything goes well for you with your SCT. I will look out for your brother if he joins the kidney cancer forum, as that is my 'home' base.

    Keeping everything crossed for you and your brother

    hugs

    Kate

  • Thanks all of you.  I think he does need some kind of advocate, at least for the duration I can't accompany him anywhere. I've found this site to be a godsend from the moment of my diagnosis, so I'll have to sit beside him when I log on and see if it's something he'd like to take part in.  Right now he is just trying to ignore what was said at the appointment, which I can understand.  At least this morning he got a call with a date for pre op assessment stuff, so they are moving on it, and we'll know where he stands soon. I do try to keep a positive outlook, but life has thrown too much at me lately and it's getting harder. It would be nice to have some good luck thrown our way.  Thanks again :)