Worried it's all about to get even worse!!

User

Posted 16 Sep 2014 at 10:28

Hi,

(Dad has advance prostate cancer stage 4 with secondary bone cancer - since 2010)

It's been a while since I wrote, everything seemed to be going so well for Dad he was on a drugs trial that was really helping but then it started to not be working properly so Chemo was the next step. Everyone was so worried but actually after the first few sessions of Chemo Dad felt great - he looked better, felt better - seemed to be doing more - totally different from how we expected him to feel.

My parents decided to book a holiday to the USA & was advised that Dad was fit enough to travel & the consultants thought a trip to the USA would be great for him.

Since then my Nan has passed away & my parents have been looking after my Grandfather, and all their personal affairs, my Mum has been made redundant and a new grand child was born - basically this holiday to the USA has been longed for & is much needed.

After 7/10 Chemo sessions my parents were advised that Dad was fit enough to start a new french drugs trial (sorry I don't know the name), anyway since this drug was given to him Dad has gone down hill & four weeks ago he was getting such bad back pain that he was complaining allot & not sleeping & he looked awful, sweating all the time & feeling boiling hot then freezing cold - My Dad never ever complains so I knew he wasn't right. The family annoyed Dad on a daily basis encouraging him to go to the GP or his specialists, I spent hours researching what the pains he described cold be, I even tried ringing cancer advise lines but they were closed over the weekend. I even wondered if it was spinal cord compression! but the GP said is was a trapped nerve, or passing of kidney stones.

Anyway yesterday Dad went for his 4 week check & was told he is now not well enough to go on their holiday (due to fly out on Sunday 21st September) and the advise given from the consultants was to cancel it as the USA is terrible for medical treatment & Dad needs to come of the drugs trial now & going away while coming of a drug is also not advisable, plus they said Dads pain is too severe!!! Both my parents are so upset about not being able to go away but are even more concerned about what could be wrong with Dad.

They have to go back to the hospital in 2 weeks once the drugs are out of Dads system & have been told there are other drugs they can try & that they think the pain it the bone cancer not the prostate cancer - so we assume more scans will be taken in 2 weeks. His PSA has gone up 210 to 450 in the last month too.

I'm so gutted for them, their last big holiday which was a cruse is when Dad was so ill the cancer was diagnosed & now this big holiday they can't go. In the grand scheme of things the holiday or losing the money from the holiday doesn't matter - I'm just really worried about my Dad..

just needed to air my feelings - thanks for listening.

Cat

User

Posted 16 Sep 2014 at 18:12

Sorry to hear that Cat but as you say getting the pain etc under control is the main thing. I take it they didn't have holiday insurance they can claim?

Bri

User

Posted 16 Sep 2014 at 21:08

Hi Bri, Nope they really struggled to find insurance which would cover Dad & in the end the insurance they found covered him unless it was something to do with the cancer & as this is cancer related they aren't covered for anything & it was a 3 week trip. Mum is trying to see if she can get anything back. Thanx

User

Posted 16 Sep 2014 at 21:44

Poor things. Can they try and transfer it or at least get a credit note? Maybe then they could use it at a later date or family could use it.

Hope things get sorted with your Dad.

Good luck!

Alison

User

Posted 17 Sep 2014 at 00:33

Very upsetting for them. Priority is to alleviate pain and try alternative possibilities. Maybe if this leads to some stability they will be able to go to the US later. Although the US has excellent treatment facilities it's not the place to be if treatment is needed and you don't have the requisite insurance cover or very deep pockets.

Barry

User

Posted 22 Sep 2014 at 16:19

Hi,

Things seem to have gotten worse since my last post.

Dad had the pain in his back which as previously mentioned lead to tests & found the drugs were no longer working. One week off of the drugs now, but mid last week Dad had tremendous pain in his leg & bottom (the leg which has the metal rod inside due to the cancer having worn away the bone) so after a few days of really suffering he was advised to call for an ambulance & was taken to hospital as there were concerns he may have a fracture in his leg & the earlier back pain had seemed to have disappeared. The Xray came back clear & Dad was told he could stay in for stronger pain relief or go home - he chose to go home.

The pain became so bad that Dad found it unbearable and couldn't even move - after upsetting visits with myself, brother & Sister we all shared our concerns with my Mum & the Cancer Care Team were called & yesterday he was taken by ambulance again to hospital & he has been kept in. He is now on Morphine every 2 hours, the pain is more manageable & so many tests are being carried out to find out what is causing Dad to be so poorly. At the moment they doctors are saying it could be problems with nerve endings due to Dad having Shingles earlier this year, and yesterday they said he may have groin infection. It has been suggested that he will more than likely be transferred to Guys so that he can be treated by the team who normally give Dad his care.

My Sister & I are worrying that it's actually the cancer which has spread & is causing this pain, but so far this has not been mentioned, I did ask my Mum if the PSA had risen since it's rise last week but she hasn't been given this information. It's an emotional roller coaster the worst I've seen my Dad since he was diagnosed 4 years ago. Fingers crossed it is just an infection rather than the cancer spreading - but can an infection really cause someone to be in that much pain??

Cat

User

Posted 22 Sep 2014 at 21:29

Hi Cat,

Yes infection can be very painful , whatever the cause one thing for sure is your Dad is in the best place at least he will be monitored and hopefully they can bring his pain under control. This disease has many twists and turns. I hope things can be sorted soon for your Dad.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Sep 2014 at 23:06

I went to visit Dad in hospital last night & was so pleased to see him smiling & joking, although he was still in enormous pain, he seemed so much better than last week.

Today we got some sad news that the cancer has spread to his groin & pelvis.

Feeling numb, and worried how this will affect Dad, will he be able to walk again?, as he's really struggling to move at the moment. The Team looking after him want to get him on medication to try & slow down the cancer. Can drugs take the pain away & get him back to how he was or is life about to get tougher for my poor Dad? I have too many questions which I know I can't get the answer's too but it's good to just put these thoughts out there.

Cat

User

Posted 24 Sep 2014 at 01:05

Cat, did anyone at the hospital mention spinal cord compression or SCC? I think you need to take a nurse to one side (or try to see one of the doctors) to ask them your questions and get as many answers as they can give you. If the pain and immobility is down to spread, then it is maybe possible that they will try him on a different drug but if it is SCC then he may not get his mobility back fully.

Don't be frightened of asking questions; there are things you need to know so that you can prepare yourselves for whatever comes next.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Sep 2014 at 20:56

Thanks Lyn,
When Dad first started getting the pain weeks ago I did question Spinal Cord Compression (after hours on the internet his symptoms seemed similar to me so I discussed it with both of my parents) but Mum said that the consultants had already asked Dad questions about how he was feeling and she thinks it was because of concerns of SSC, as they were doing thorough checks I don't think she thought any more about it.

Today however my Sister was there when the Doctor was with Dad & she mentioned that Dad does also have cancer in his spin & without the MRI they can't see the nerve's properly to establish if he has SSC. Dad won't have the MRI, he has a complete melt down just thinking about it, the last one he had was in an open one in Hendon (we live in Kent). My Sister thinks he might change his mind as the doctor said she can give him a pill to relax him - apparently they also spoke to him about a chair lift or moving his bed downstairs once he gets home.

Thank you for your advice, it's so appreciated. x

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