Still trying to be positive but its bloody hard

Hi Trying to be strong

I sorry you are having a rough time of it. You are so nearly there. I was sick from my first chemo (anti sickness didn't work and i didn't realise you can get different  ones )and I only had 50% due to low dpd, they increased it to 75% for the second lot and I was fine no sickness. I think I felt sick for the first one due to the mitomycin which you don't have in the last one so hopefully you will be the same. Have you asked for pain relief from your medical team, mine told me I had to take paracetamol all the way through regardless and told me they would prescribe something stronger if I needed/wanted it which I didn't. I know some people on here have had morphine prescribed. This is a hard treatment which unfortunately seems to affect some harder than others. I had no problems sleeping for the most part and feel for you not sleeping it must be hell, but I still had times when I thought I can't do this I need to stop but you have to keep going. Tick the days off, each one is one day closer to the finish line. This is just a couple of months out of your life to get your health back. I know its not easy but just take one day at a time cope with that and don't think to far ahead, try to rest even if you can't sleep and ask for pain relief. Sending hugs. You got this. Xxx

Thank you for your words of encouragement.  Yes I have been told to take paracetamol four hourly but unfortunately it upsets my stomach so I will be having to tell the nurses today that I need something else. No kidding everyday is another reaction.  How did you manage with the blisters and burns from the radiation?  I am also starting to loose so much of my hair.  I was told it would thin but not fall out.  I also had the mitomycin first round of chemo too and it really made me so sick, nausea medication then caused heartburn and reflux so my whole digestive system broke down.  Hence a lot of the medication prescribed now upsets my stomach.  Round and round I go!  I am ticking the days off for sure but some days are just harder then others.  Thank you for your positive words I really needed to hear them today.

Please do speak to your care team as there are pain relief options available that also can make you a bit drowsy so can help with pain and sleep together. I am so sorry you have had side effects to chemo. My mum was given 5ml of oromorph (liquid morphine) to help with the pain as the paracetamol did not work for her by itself. Oromorph also really helped her sleep which she really struggled with before. (She did get heartburn sometimes but rennies helped) The pain did heighten towards the end of treatment, slow release morphine every 12 hours was a game changer. Don’t be afraid to keep asking for help. Sending you hugs and support x

Hi

I had three different creams from the hospital for my burns, flamigel, flaminal hydro and flaminal forte I also occasionally used instillagel. I wore mens baggy boxer shorts as they were much more comfy than womens pants. I also walked very slowly with my legs as far apart as i could. Once treatment finished my burns healed relatively quick I think. My hair did shed a bit more than usual but nothing that anyone else would notice. Xx

I start treatment on Monday - but I still wanted to reach out Trying to be strong and let you know how in awe I am of you.  It looks like by being brave and sharing how you are feeling physically and mentally - you've e got some good advice and fingers crossed your medical team can help you further.  

I'm not sure if you've tried hypnosis - I use clear minds to help me get to sleep - it might help?? I listen to it via audio and it's a guided meditation.  Let me know if the link would be useful. 

Keep us updated with your progress and thinking of you. Sending healing vibes your way. 

Hello Trying to be strong

I am so sorry that you are going through so much.  But please don't worry about telling your team about your side effects, in your shoes I would be too.  Paracetamol doesn't touch the sort of pain that some of us experience when getting towards the end of treatment and I would stress to your team that you need something stronger - much stronger.  At the end of treatment I was on Oramorph, plus slow release morphine and Flaminal Forte gel which I used in conjunction with Polymem dressings.  The Oramorph did help me sleep, but just make sure that you take stool softeners (Laxido) alongside, any opiates cause constipation.

Right at the beginning the oncologist told me I would need opioid drugs towards the end of treatment and he was right, my husband made a chart and regularly dosed me up which is key to not having major pain breakthrough.

Truly, you are on the home stretch and then you can recover at home.  It is just getting to that point that is so hard and my heart goes out to you.  So please don't be afraid to tell your treating team everything, and also how low and depressed you are feeling.  One day you will look back and it will be a distant memory; even now I ask myself 'Did I really go through that?'

Sending huge hugs

Irene xx

Hi Trying to be strong ,

I’m really sorry to hear you’re having a rough time of it through your treatment, I know it must be so difficult but try keeping in the forefront of your mind that this is all for the greater good & you're two thirds of the way through. It’s just awful when you can’t sleep, everything feels so much worse. I suffered awful fatigue during & just after my treatment & honestly had some of the best sleep I’d had in years probably but that doesn’t help you does it? Has anyone suggested prescribing you lansoprazole or something similar? I can’t take ibuprofen as it makes me feel awfully sick, similar to what you’re describing with the paracetamol, heartburn etc., but paracetamol & ibuprofen were my only options regarding pain relief during & after my treatment as I couldn’t take anything opiate based due to it causing horrendous constipation (not what you need when you have burns where we have them!) but with the lansoprazole I was able to take high strength ibuprofen 4 hourly when needed. Just a thought, I would ask your treating team at your next appointment. 

Nicola 

Hi - you wil get through this although it may not seem like it now!  The whole thing can be traumatic and seem long but those of us who are out the other side can confirm the sun does shine again and when you work out the months - it’s to save your life and a small price whe. Looking back.  But in the meantime have you got oral morphine and slow release morphine ?  I couldn’t use installagel as it hurt so much - also a barrier cream can help protect sore skin.  Keep asking for help from eebryone - I had a great response for the slow release morphine from the cancer care line nurse who wasn’t allocated to me - others ideas and perspectives can be helpful xx keep looking after you, take the rest and set alarms and keep a track of pain relief and eating x 

thinking of you and sending you a strong hand to hold x 

Angie 

Thanks Angie, I stood up for myself yesterday and said I wasn't coping and I have now been prescribed slow release morphine tablets and sevredol tablets to take every six hours for pain.  I have noticed the difference over night already. Unfortunately my last blood test has showed low blood cells and I am still unsure if the next round of chemo will start next week.

Hi Nicola, I have now been prescribed slow release morphine tablets and I had some sleep last night.  Just a little nervous now as I don't want to became constipated and my CBC is showing low levels so they are unsure about chemo starting on Monday.   Thanks for suggestions its good to feel supported in this journey.