Secondary BC spread to bones and liver.

Welcome to the group, happy_rattlie we are all in the same boat. It is such a shock to get our awful diagnosis. You'll find friendy  supportive people on here and also a good dose of humour. I'm sure someone on here will be on the same treatment. Vent your feelings here, cry when you feel like or kick the pillow when the anger hits. You have a plan so that's good. Sending big hugs xx

Thank you Moi2, even tho I have a loving supportive family, I feel so alone. bit like am dangling on a piece of string and the world is still moving past me. 

Oh H+R, it's a horrible feeling. You feel like nobody can help you. Or no what your going through, I wanted to run away, but it wouldn't change anything. Try phoning the Macmilan Support Team they are very good. You not on your own. Things will settle down when you get use to your new normal and treatment just slots into your routine. Press on Moi2 and read my profile. Keep  posting we are all here for you. Hugs and positive vibes to you XX

Happie Rattie,

It’s absolute pants isn’t it. 

I had been nagging my GP about shoulder pain that had migrated to my shoulder blade. Saw 2 different doctors, one openly said she had no idea and it may be a strain, the other sent me for bloods, xay and a muskoskelatol referral, still waiting for that one.  

Both of them seemed to miss the 5.6 litres of fluid I was carrying around in my right lung. 

My breathing got so bad I had to go to A and E. After a 10 hour wait I saw a triage nurse who said I needed observation as my oxygen levels were very low, mid 80s.

I had an X-ray that night and a CT scan the following day.

Then this very young, very nice doctor came to see me and said they had found a mass on my lung. A mass, what the * does that mean?  

I then had half the fluid drained off on the ward, big needle in the back what a relief, I could breathe again. They left the rest of the fluid in there for a couple of days so I could have a thorososcopy operation so they could have a look around and take biopsies.

I had to go back a week later for all the results. What a messed up week that was. I really struggled with how much to tell my long term partner of 17 years, soon to be my wife this Saturday,  and how much to tell the kids.

I went back for my results knowing I was Sick but I was expecting stage 1 or 2 maybe.

Turned to be a bit worse that that . Stage 4 and it’s already moved from my lung to my vertebrae, liver, kidney. 
Quite frankly I stopped listening then. What was the point. Within 4 weeks I’d gone from being normal to S4.

What struck me with your words was that we both went in with backache and have come out like this. Stage bloody 4 and on the march around my body. I too am devastated and feel helpless.

My best advice would be get on top of the pain, especially in the bones. Once you can manage the pain, it is so much easier to think straight. When you can do that you can take back control. Away from the disease bouncing you around all over the place.

And that’s what so important, you need to be in control so you can plan, set out your day and find ways of making this work.

I’ve got on top of my finances, sorted out my Will, sorted out my pensions for the kids. Can’t change anything but I feel so much better that I’m driving the agenda, not this poxy disease.

Make sure you talk to McMillan teams in the hospital or your local support team . From my experience they are all so helpful and really do know how to help you. 

Good luck and keep us updated. 

Thank you Ramses,

Am sorry to hear about your diagnose. Your getting married Saturday! Something to look forward to. 

How old are your children if you don't mind me asking?

Sorting finances out is a good idea, I just haven't been able to think stright.  Have you been able to get any financial help. I am off work now on ssp as already used my 8 weeks sick leave earlier in the year when I was off as the back pain was so bad. 

I do worry how my partner and kids are coping with the news, it's a lot to take in.

Moi2 am really sorry you have been through a lot. How do you stay so positive?

Hi - we're all in the same position I think.  I'm stage 4 kidney cancer spread to lungs but it's under control from immunotherapy.  I would suggest that how you feel now about it, is likely to be the lowest ebb.  You need to give yourself a couple of months to come to terms with it with the support of your family.  The shock will subside.  Treatment plans help and so does following the routine.  It's the friggin' waiting for appointments and the unknown we all hate.  But we all find ways of coping with the uncertainty and framing our activities into life.  Keep talking to your family, let the tears and emotion flow and in a bit it will get easier.  We're here for you.  

If you haven't already, I'm sure people in the breast cancer group will have experience of those drugs.  

This is how I stay positive: (apart from the times when I feel negative, when the treatment goes awry (is withheld) , or there is uncertainty about what we're doing next): 

1/ I can't change the situation.  It's happened, through no fault of my own.  I have a pragmatic outlook. 

2/ I know we are doing blah for my cancer, it's working right now, and when/if that situation changes there'll be more options for me; new drugs probably.  I know what TKI drug my oncologist is likely to recommend next, we 've discussed it.  There is a Plan.  

3/ I'm thankful for the time I've had with my family (kids are 18 & 21).  Experiences from this point are a bonus.  I don't beat myself up about what I might miss in their lives.  Some mums are unfortunate and have cancer with under 10s.  I've seen my 2 grow up to be fine adults and I'm proud of both of them.  Cancer does NOT change that.  

4/ I have a silly (entertaining) game going on with my oncologist/cancer which started when my treatment went awry in April/May.  It's not personal, just fun, but I'm 3-2 up. 

5/ I've set myself some targets.  One is to see my daughter graduate in 2027 and another to get to 60.  Also to go for the immunotherapy record.  Why not?!!  I've got little influence over these targets, but it helps to have them.  

6/ There's always a blood test, a CT scan, treatment or a meeting with my oncologist to look forward to.  

7/ Re-evaluating my work/life balance.  I'm taking the summer off and I'm going back in Sept on 3 days a week.  I would never have contemplated this without the cancer.  

8/ Keep myself busy.  Trying to get back to all the activities I did, and looking for replacements (in the meantime) eg running club is a bit of a problem at the moment!

Happy Rattie

Thanks for coming back to me. It’s so nice to be able to speak to people in the same position as we understand each other. 

I made a cancer buddy in the same ward as me. He found out his diagnosis the day before I did. We help each other and call each other. He called me yesterday and within a few seconds asked “are you coughing up blood”. Clearly he was and was frightened and needed someone to talk to, so yes, it’s great to be able to cut through that and just speak to someone. 

Sorry, I digress. 

I met my other half 17 years ago. I have 2 kids from my first marriage, 2 from my second marriage and my partner had 2 of her own. So 6 kids between us, and now 7 grandkids. 2 lockdown girls from different daughters and twin boys from another. 

I always said I wouldn’t get married again although deep down inside I knew I would and was just putting it off. 

Now this crap has come song I’ve just thought why not, what am I waiting for? So we’ve organised it very quick, special licence, all arrangements in a week. Keeping it to just close family and 4 friends. 35 people in all and that includes all the kids. Just the people who mean the world to me. No random relatives you never see year on year.

Like I said, get your pain managment under control, then you can think straight. Get yourself a notebook and just jot down plans and think of things to do. Sort out pensions, bills etc, anything just to make sure you are driving the agenda. 

In terms of financial help, again Macmillan can give some great advice. 

If you haven’t already done so, get your support team to issue a DS1500 certificate to the Dept of work and pensions. Then call them to organise your PIP. There is a fast track number you can ring and do the application over the phone. Takes about 15 minutes.  You get circa £98.00 a week from the date of your claim if approved. 

When your sick pay at work runs out you can get SSP again circa £90.00 a week. 

Also apply for your Blue Badge for parking. Again there is a fast track option for people at our stage, normally flakes 12 weeks, they will process and issue badge in 10 days if you go the fast rack route. 

• It’s a lot for the family to take in, but if they see you’re  in control, they will take the lead off you. You will be helping them and yourself. But try and balance that by not worrying about being a bit selfish, you’re entitled to be fed up too. 
  
  Hope that helps. Stay strong.

Hi 

It sounds like you've had a really hard time and happening so quickly must have been a real shock. When I was first diagnosed I was told I'd go through a grieving process and I did! As time went on I turned from grief to facing up to battling the disease both through treatments and my own changes at home with diet and lifestyle. Once engaged in treatment I was able to look forward somewhat. All i can say is dont give up hope. Many cancers are found at a late stage but there are lots of treatments these days that support people to live with cancer. Lots of people find stability with hormone blockers and you will probably learn more on the breast cancer forum.