Hi, first time posting

Hi Hal

Welcome to the forum. I'm sorry you are in so much pain. I can't help with what to take as I managed on paracetamol but just wanted to say hi. I would speak to your doctor or your medical team at the hospital and ask them for something stronger. I did get bad wind pain while on treatment and was advised to cut veg from my diet which helped. Sending hugs. Xx

Hi Hal ,

Firstly welcome to the MacMillan Online Community although I’m really sorry to learn of your recent diagnosis. 

I can’t offer much advice on pain relief but I agree with Bungle1 if you’re not getting adequate relief from the meds you’re taking I would speak with your treating team or Dr to see if things could be switched up a bit. I only took liquid morphine for a short while as it caused me the most horrible constipation but when I did take it it didn’t offer much relief at all. 

I’m sorry I couldn’t be of more help but I really hope you find some relief real soon. 

Nicola 

Hello Hal

A warm welcome to the forum although I am sorry to hear of your diagnosis, and the face that you are in so much pain.  My tumour was almost in the rectum and I had no pain so I am sorry I can't offer any shared experience.  However, your treating team are best placed to increase your meds; during and at the end of treatment I was given slow release morphine capsules to prevent break-through pain (which was never totally eradicated but a bit more bearable).  Please talk to your oncologist about the level of pain you are experiencing (and don't hold back).

What is also important is to take the pain relief at regular intervals, I had a chart to make sure that there was no danger of the medication wearing off before I took more.  There are other forum members who experienced extreme pain prior to treatment and I am hoping that they will pick up on your post and offer some tips.

Please keep in touch and let us know how you are.  I know there is a lot of waiting around after diagnosis but all the information is being gathered before they finalise your treatment plan, once they have that in place and you start you will feel a lot more in control that you do right now.

And we (who are all in the know!) are here to offer support at any time should you need it.

Irene xx

Hi Hal,

I want to add my welcome to all the other welcomes you've received, and also my greatest sympathy that you're experiencing such pain. I'm having a different sort of pain (nerve pain in the thigh and back), which has really impacted me, so I really feel for you. I really hope you get relief soon!

Hopefully, someone with a similar experience with pre-treatment pain can share their experience.

As for my own pain regimen, my doctor put me on a fentanyl patch for 24-hour pain control, as well as oxycodone for breakthrough. He also added a solid dose of gabapentin, which is used for nerve pain (I'm in the States--I think they use pregabalin for this purpose in the UK). I took ibuprofen until we stopped it out of fear for gastritis. This regimen helps but does not eliminate my pain, and I'm not sure this information will be of any use to you, since we have different sources of pain, but I thought I would share it anyway.

At any rate, I'm thinking of you and hoping you get relief soon. Please know we're all rooting for you. Xx

Thankyou for your reply and the hugs x

Thankyou for your reply. I spoke to the colon rectal nurse today. She said that there is nothing else but also said that the referral to an oncologist has now happened so hopefully 9nly a few more weeks.

Thanks Irene,

I have a pain meds timetable and alarms set on my phone. Hopefully will be allocated an oncologist soon. 

Thankyou for your reply.

It actually helps to know that I am not the only one that despite the cocktail of drugs I am taking they may not fully work to eliminate all the pain.i had wondered if there was something odd about my body's response.

Sorry to hear you have nerve pain in your thigh and back. I  have sciatica in the buttock and leg which they think is caused by the cancer and hopefully will dissappear with the tumour when treatment starts.

Its lovely to know that there is support.

Hi Hal,

The waiting for test results I found extremely difficult. Nobody keeps you updated so you’re left wondering from day to day when you are going to hear from the hospital etc.

I too was in a lot of pain prior to starting treatment. I informed the colorectal nurse about this on 3 occasions. I told her I was taking paracetamol, ibuprofen and I was in so much pain I was taking tramadol (I had these from a previous time). She took no notice of this. She hadn’t even documented the conversation about pain. I know this as I contacted my oncology team who I hadn’t even met at this point and they informed me there was nothing documented about my pain. 
I plodded on as I was. 
you need to contact the team to inform them of your blood loss and the pain. I wish I had pushed further re my pain looking back as nobody should endure pain.

I would say after roughly 2-3 wks you will notice a change and suddenly realise the tumour shrinking. I couldn’t sit on my bottom, was always on my side and still to this day I find myself still leaning sitting on one side. Possible habit or it’s just more comfortable. 

I hope all gors well for you and you hear something very soon. I can remember only too well the waiting around. 
X

Thankyou for replying.

I did speak to the colon rectal nurse today and she told me that I should hear something in a week to two weeks.

My GP gave me dihydrocodeine plus the oramorph a couple of days ago, but sadly it doesn't eliminate the pain, hence my post for any other ideas.

They both know about the bleeding but have said that it is normal for the position of my tumour. I don't have an oncologist yet.

Yes it does feel like a long wait. Its good to know that it will shrink and relieve the pressure within a few weeks of treatment starting. Thankyou for letting me know that.

I am also unable to sit, mostly spending my time lying on my side. Looking forward to being able to sit normally. 

Thankyou again for replying. It really helps. X