Broken

Was about to type wow regarding how long ago since I updated this but I think I’ve started the last two that way and although it’s always good to be consistent, this isn’t one of those moments!

It has been two months since my last update. Most weeks I think I will write on here but then I remember I have a hospital appointment coming up so I’ll wait for that and then update you all with what they have said – but it’s been nothing worth mentioning!

12 weeks after radiotherapy is the ‘normal’ time to go for your ‘what happens next’ appointment with oncology.  My oncologist wanted to see me before then because of the ongoing pain in my hip (still ongoing). So six weeks after my radiotherapy finished I went to see my oncologist.

Sorry if I jump about, this all makes sense in my head.  Just before I went to see my oncologist I received my referral for rheumatology.  My oncologist wanted me to see him because of said pain.  He thought my pain was bursitis.  From my understanding (that covers me if I get this completely wrong), we have fluid filled sacks which cushion our joints (bursas) but sometimes these get inflamed which leads to bursitis. He was very confident and gave me a steroid injection in my hip and said I would be pain free by the weekend. Wrong.

So off I went to see my oncologist.  As I was still in so much pain I was hoping he would refer me for the MRI which he was hoping my rheumatologist would send me for – although why he didn’t just send me in January when he suggested it I don’t know.  We walked in and it wasn’t him, it was his registrar.  I because all dizzy inside and my legs were wobbling.  I was aware my oncologist was leaving any day.  I knew him, we had a good relationship especially during my time in hospital over Christmas.  He was so caring.  The registrar did her job, she was nice too but she told me I would be referred into the care of the breast care nurse specialist.  This is protocol.  I just burst into tears.  Didn’t have a clue where they came from!  She said she didn’t have to and I could see them anytime but I wanted to see my oncologist, he knew me, understood me, had time for me.  I couldn’t stop sobbing, was feeling really pathetic as I hadn’t really cried up until that time.  She examined my breast, said it looked good and I’m to come back in three months to see the breast care nurse.  No mention of my hip.  I know I should have said something but I was still numb.

A few weeks later I went back to rheumatology.  Another stronger steroid injection given into my hip.  I will be pain free within a couple of days. Wrong again.

I went to my doctor after and explained it all to her.  She referred me for the MRI, or so I thought.  It was an urgent referral so I was seen within four weeks.  The results came through within 24 hours.  I was so impressed with the service I received and the speed at which my results came back.  My heart was racing when I saw my doctors number come up on the display.  I’ll finally know what the problem is.  Apparently there is nothing wrong with my lumbar spine.  I have a herniated disc but most people do.  Obviously there is nothing wrong with my lumbar spine as it isn’t there that I have the problem!  I was so angry my doctor had written lumbar spine on the form and not hip.

Three weeks ago I went back to rheumatology.  I took a copy of the MRI of my lumbar spine.  He doesn’t think the slipped disc is causing the pain in my hip and now agrees with my oncologist and has sent me for an MRI of my hip to rule out that the cancer hasn’t spread there.  He prescribed me some slow-release morphine tablets to take in the meantime.  I’ve never had to show ID before when collecting a prescription, this must be the hard stuff!

I also went back to my GP who referred me for physio.  A few weeks ago I received a letter saying my GP had referred me for physio but they’ve triaged my referral and want me to see an orthopaedic specialist first.  I did this yesterday.  He too has said the herniated disc isn’t causing my pain and I really need the MRI to rule out it isn’t cancer.

So here we are today.  I am in so much pain still.  I need to phone my occupational health lady to see about getting the bathroom converted into a wet room.  I’ve been putting this off but after getting stuck in the bath last night I think it’s time to admit defeat.  I walk with a stick.  I need help to put my underwear on.  I’m desperate to return to work but I’m unable to stand up for very long so that’s a non-starter.  I feel like I’m trying to move forward but keep being pinged back.

It’s so hard to remain positive all the time when you are hurting so much.  I feel like I am broken and even though the light at the end is starting to shine, it feels a long way off.  I have the niggly pain back in my breast which lead me to getting the mammogram ten months ago.  I hate to admit it, but I am now thinking I haven’t got as long left as I originally thought.  I’m very tearful at the moment too.  All those months of being positive – some may even say in denial, have finally caught up on me.

I have my MRI on Saturday morning.  I will not get the results until my pain clinic on 22nd May but I’m hoping my next blog will be more positive than this one but I did promise you all I would be honest.