Severe pain after rig fitting

Here4mum said:

And she’s still in hospital (3nights) with severe pain,

Is your mum home now? 

Hi Dani, 

still not home. 4 nights in. 
my dad and I are really urging her to find the strength to get home tomorrow. 
she says she’s still in a lot of pain with it.. 

Mum had an xray and ct scan to double double check it’s all in place and fine, which it is. 

think it’s a combination of the pain and just general anxiety about all of this. The mind can be so powerful and I think she needs to feel stronger mentally. We are trying to help her with this. 

she has a driver for antisickness and she has decided to stop the chemo due to it making her feel too awful to keep her strength and calories up to be able to deal with what’s to come 

it’s all a bit gloomy, yet I fear there is worse to come. 
just for context mum is 69 and relatively fit and healthy. Just this whole thing has hit her so hard. 
we are hoping to actually talk to an oncologist tomorrow (fingers crossed as it’s bank holiday!) and get a good plan in place. 
her radiotherapy wasn’t done on Friday and she probably won’t be able to go through with it on Monday (she’s supposed to have it every day for 6 weeks, and they live an hour from the hospital! ) I’m worried delaying the treatment too long will make it not work as well? No idea. 
sorry for the ramble. It’s been a week! 
thank you for asking:) I honestly appreciate it so much. 
Amy 

Hi Amy. I have a friend who is on this forum Debbielouise  Bless her, she had a pretty rough time too and spent a long time in hospital but she has not long ago had her clear PET. It wasn't easy for her but she got through. I'm sure she will pop on with some advice. 

A few days delay in your Mum's RT isn't going to make a difference and if she has to stay in hospital, while not ideal for the rest of the family, at least she will get her treatment every day.

I was 68 when my treatment finished. I knew it wasn't going to work and I was going to die. It wasn't the science and medicine that would fail me but my body. I didn't trust it. It took a while to get my head around that but I did.

Hugs

Here4mum said:

my dad and I are really urging her to find the strength to get home tomorrow. 
she says she’s still in a lot of pain with it.. 

PS. It might be that she feels safer where she is and feels less of a burden on your dad to look after her at home (....yes yes...this burden thing is so silly but it's real...believe me)

If you can organise daily visits between you and your dad and maybe some of any other family she has she might feel a whole lot better.When both my Mum and Mother in Law were poorly in hospital they found keeping up a conversation hard but loved being read to and having their hands held while they dozed. It was knowing somebody from home cared and loved that they needed.

Hi Amy

I am so sorry to hear that your Mum is having such a tough time at the start of her treatment plan.

Sadly I was the same my poor body couldnt cope ,after having 8 teeth removed(under only local anestetic)then a PIG(feeding tube fitted it had already had enough before chemo or radiotherapy.

My feeding tube was excruciatingly painful     I wasn't given appropriate pain relief first night and really suffered for first week (vomiting made it worse on already strained stomach muscles).The good news is the second week it began to settle and by two weeks it was feeling ok.

Like your Mum I didn't do well with chemo and was hospitalised after PiG fitting then several times for vomiting/pain and dehydration.Spending 5 weeks in total.I was 56 when it all started .everyone has  a different experience and mine was very tough .I wouldn't let my kids visit me in hospital as My Mum and Husband found it difficult seeing me so unwell.

Make sure your Mum is on pain relief that works for her , we are all different I tried them alland ended up on Fentanyl patches which took the edge of plus I had the same with anti sickness meds again after trying several ,patches worked for me.

Dont worry so much about the delays in her treatment many of us have them for various reasons.They can tag any missed radiotherapy sessions on at the end of her plan.

The treatment is brutal but it works for many of us(over 90% cure rate).

Im sending you all a hug and hopes that the pain settles soon x

Im happy to answer any questions answers are based on my own experience

Debbie 

Evening Debbie, 

thanks so much for your message! 
I’m so sorry you have been through such a nightmare. 
it’s good to know there are patches available. 
how did you manage to carry on with your radio therapy? Mum thinks it’s going to be too painful to lay flat and still on the bed:( it’s been almost a week since her last radio. 
she’s finally home today with lots of pain relief and we have found her one of those loo seats with handle bars. 
I wish they had done the rig before starting her treatment, she was already weak from chemo (she had one, and won’t have any more) 

1. it’s such a shitty journey I just wish u could take some of it away for her :( 

Thanks Dani, 

I’m so very sorry for what youre going through, and really appreciate your support and advice:) can’t imagine what you’re going through. And thanks for messaging Debbie.

so depressing this is just the beginning of mums journey, I wish they had done the rig before starting treatment. Hopefully she can restart radio end of this week. One day at a time. My dad and I are with her every day at the hospital, thankfully she came home today:) 

Hi Amy,

Glad to hear your Mum is home ,I hope she will feel more comfortable in her own bed .

Yes I agree feeding tubes are better if fitted at least two weeks prior to starting treatment, allowing everything to settle down.

I dont really know how I made it through any of my radiotherapy sessions as each day I was wheeled down in either a hospital bed or wheelchair holding several sick bowls feeling/looking ghastly each and every day.

I would be vomiting or chocking on mucus but once i lay down listening to my phones playlist ( each song had a link to my kids or a fabulous memory you can also ask for a radio station to be played)t took my mind away and then as soon as I sat up began vomitting or chocking again…

Dont lose faith the treatment is tough and your Mum is having a really challenging time already but keep telling her you know she can do this … xx

You are doing everything you can ..visit her ( and your Dad )as often as you can try not to worry if she cries or screams or says shes had enough ( I did several times as its how I was feeling).

Look at all the people on this site who have been through some horrific experiences but now enjoying their lives ️

Debbie x

Here4mum said:

can’t imagine what you’re going through

No No....I was explaining how I felt at the beginning of treatment. I'm OK. I am over five years out of treatment and signed off routine review.

I'm so happy our Mum is home.

How many RT sessions did your mum have? before they stopped them?

Hi Hereformum, so sorry to hear that she is suffering following the RIG tube. I had one fitted prior to treatment and it was very sore initially. I seem to rember that there was a stud or stitch holding in place and once that was removed it was fine. I did have an ongoing slight infection at the site so it was important to bathe the site regularly. I also used a Softpore patch to prevent it rubbing against my skin.

Regarding the chemo, I too had dreadful nausea and had to try various anti nausea drugs to reduce it. I also experienced the posts steroid drop 3 days post each chemo session.

I hope that she is able to resume treatment soon.

John