Pain 'attacks'

Hello Jen

How was your night?  I hope very much that you were able to get some sleep, I have been thinking about you.

Irene xx

Hey....

Sad to report, not much improvement at all. Still taking painkillers around every 2/3 hours and awake inbetween. Have located the zomorph tho, so will try that tonight. It's the lowest dose at 10mg slow release, so I'm not sure how effective it will be. Will see how it goes. 

How are you doing? Up to much with the Easter weekend? Xx

Aww JenW , I’m really sorry that after all of that back & forth that you’ve not felt much improvement where your pain is concerned. Here’s to hoping the Zomorph will help somewhat (pleased that you managed to find a pharmacy that had stock). Let us know how it goes. 

Nicola 

Hello Sarah

My GP practice are so reactive when I go with anything - the GP I saw last time for a urine infection asked me lots of questions and said they had a very low threshold for referring me to a consultant in view of my history and to let them know if I had difficulty passing urine.  I just can't imagine visiting in a wheelchair and not to be even asked about it or how you are.  Would it be a great upheaval to change doctors?  

My GP has followed up my hip pain and 'lead legs' from every angle, and it turns out that I have degenerative osteoarthritis in both hips.  All this is since having radiotherapy, and as you have had it too you may well have the same.

I am so sorry that you have to deal with (or don't visit) a disinterested practise as it sounds as though you could really do with some help.

Big hug, Sarah

Irene xx

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You are really fortunate Irene, and I’m glad that others get the care they deserve. I have wondered about maybe having osteoarthritis…I know something was seen on my hip when I had my first diagnosis but the focus was on my cancer and I was new to all of this-my consultant scared the life out of me when he mentioned it and he hoped the cancer wasn’t there as there wasn’t much that could be done for me! No wonder I didn’t pursue it! 

I had 32 sessions of radiotherapy and I did mention my hip at my first post treatment scan results but all he said was that there wasn’t any evidence of insufficiency fractures from radiation and that was that. My ptsd centres around scanning unfortunately so I’m very reluctant to go for any more but I may be forced to, as I’m getting progressively worse nowadays. It makes life very difficult, and has done for years now. 

My partner is registered with a different practice but they have an equally bad reputation in town, so the thought of changing doesn’t fill me with confidence. I’m not sure why it’s so bad here, and why they are all so unhelpful in general, especially after having cancer. 

Sarah xx

Sorry to but in to your conversation Irene and Sarah... I'm just so shocked at the way people are dismissed and treated with so little compassion. I've been having my fair share of this too recently and the general 'tone' of some of the health professionals is so cold. They can make you feel like you're a nuisance and belittle what you are trying to say. I understand the pressures of the job and the sheer volume of people they have to deal with each day, but people really deserve better... luckily, the hospital staff I've come across so far have been really kind, patient and understanding. Xx

Most staff in the hospital setting have been lovely with just a couple of notable exceptions-it’s just the gp surgery that is poor for me. I’ve had multiple admissions over the past few years for various things, so I’ve been under several different disciplines and some have had fantastic staff, some have been very cold and uncaring.

How are you getting on Jen? You will be on low dosage to start but they can be increased if your pain is not feeling well managed. I hope you’re able to get some sleep.

Sarah xx

Yes, same for me regards GP surgeries. Two locally in the past few years... receiving your care from someone who shows empathy and understanding makes such a difference. It's a shame it's not always the case. 

I'm OK. Comfortable at the moment, but still got that nagging ache that I know will be worse again in a few hours. Hey ho. Will see what oncologist suggests when I finally get to see her. Not bothering going back to GP about the dosage. I haven't the energy to go through it with them again. Xx

Sorry Jen, I missed this.  I am hoping that with the two combined doses you had a slightly better night.  If you are still having unbearable pain, I would ring your hospital treating team again, you may well need a stronger dose.

I seem to remember that you have had all the investigative work done, do you have any idea yet when your treatment is due to start?  Some people in your situation found a reduction in tumour pain once undergoing radiotherapy.  I am hoping it is the same for you, in which case treatment can't start soon enough. 

Seeing all the family tomorrow, but we are preparing for a break in Spain, it always takes ages to plan!

Irene xx

Hello Sarah

That is such a pity that there isn't a good practice near you.  My daughter is just outside the limits for our one which is a huge disappointment to her as she has been let down constantly with treatment for her neurodiverse son.

Sarah, it was a simple X-ray that took a couple of minutes that showed up the osteoarthritis in my hips (not the DEXA scan).  And the doctor said that she would refer me (again!) if it gets much worse as I may need hip replacements.  You may possibly be at that stage.  I know how painful mine get but I can still get about and walk my dog, when my mother had her hip replacement she could barely walk.  Life really looked up for her after the op (in her late 80s!)

I am so sorry that you have ptsd around scans, I don't know if it helps that the X-Ray is in a much more 'normal' hospital setting and takes literally seconds.

Irene xx