I haven’t posted in a while as I have been quite unwell. So I agreed to the ‘Belts and Braces’ treatment and started on the 8th of October. Easy I thought wow how wrong I was. The radiotherapy in its self was okay, my side effects didn’t start till about week 2, I have had problems with my bowels in that one min you have the runs, literally you get a chronic stomach pain and you have seconds to get to a loo, followed by days of constipation. This caused me to suffer with the worst case of piles I have ever had. I suffered nausea, some days I didn’t eat, and felt tired. I have also had 3 water infections too. At around week 3 I discovered a radiation burn on my inner thigh which couldn’t be treated as the treatment to get rid of it was liquid silver, a fantastic cream but as my burn was in my treatment area I couldn’t use it as the radiation would aggravate the silver in the cream.
The chemo however was a different matter, after the first cycle I became unwell, had severe sweats, and a severe water infection. Cisplatin also takes away your taste, within days I could taste nothing, strong tastes such as tomato ketchup left an acidic taste on my tongue and I went off tea. The hand wash in the hospital made me feel sick as it also affected my sense of smell. The 2nd cycle was omitted as I was deemed too unwell for it. On the 3rd cycle I became very unwell again, I had a severe allergic reaction, my face swelled and within hours my eyes swelled shut and I was covered from head to foot with a burning rash. I turned out that I had a 1/1000 reaction to a chemical in the chemo, the chemo was abandoned and I ended up with blood poisoning. On the day of the reaction when I became unwell I rang the ward at the hospital who told me to come to the hospital and they would have a doctor look at me asap. I went to A&E and was left for 4 hours in the reception, deemed not ill enough to be seen quickly I vomited and lost control of my bodily function, weeing myself twice. By the time I was seen I track and triggered a 7 (acutely unwell) and had a temp of 98.8. I was re-cannulated as my bladder stopped working and was admitted.
A scan was done on my kidney and on the right one it was showing a slight blockage, I was told not to worry as water infections can cause problems. The next day a junior doctor came to my bed, we were chatting, and I mentioned the scan, he then informed me that they had found another tumour and that it was pressing on my bladder, causing the problems……as you can imagine I fell apart, on my own he broke this news I knew nothing about, I cried and cried. The nurses didn’t know what had happened as nothing was written in my notes. Turned out he was wrong and that he had interpreted a CT scan wrong and in actual fact the ‘tumour’ is actually a small piece of scar tissue from my op.
Anyway my last treatment was Thursday, I am getting stronger every day, I felt I had no option I feel relieved and even though I had a hard time, I met others who didn’t. Gut instinct told me to do it, I made the right choice for me. But wow that was hard J
I just wanted to wish you well and I hope the side effects wear off soon! I to am a rare case as I was allergic to cisplatin also, 3 months after the treatment I am recovering well i still get the occasional upset stomach.
sorry about the ending of my last post my iPads doesn't like this site. The cisplatin gave me a blotchy rash all over my body and the first week it happened I felt like I had the flu and the next day was fine the week after it happened again I couldn't breathe properly
So my consultant decided that he could not continue with the cisplatin as it was going to get a worse reaction each time. He advised me it is very rare to be allergic to cisplatin and informed me that I have a platinum allergy.
Wow I just had to comment! This seriously bought tears to my eyes - I cannot imagine what you have been through! What a strong person you are to be here telling your story of what you have gone through! I really send all my prayers for you in hopes that you have a quick recovery.. I think you are amazing! And there's me panicking having an abnormal smear with high risk HPV, when there's people like you who have literally gone through it all! How minor that is compared to this!
You realy had a rough time, I had goosebumps reading your story!! I had the choice between raidation & chemotherapy treatment & surgery-radical hysterectomy. I chose surgery, too scared of the other- you are so brave, god-willing you will go from strength to strength! I go in for my surgery next Monday.... Thank you for sharing
glad to know that you are out at the other end and doing well. I hope you continue to get stronger each day and get on with your course you mentioned a few weeks ago.
onwards and upwards- well done! You deserve a fantastic Christmas now!!!
It's great to hear from you. Wow, you really have had a tough time of it. I'm glad you are feeling a bit stronger now and wish you a speedy recovery. Take your time and be kind to yourself.
Gosh you've really been through the mill you poor thing. I'm so glad you're on the other side now and hope you start to feel loads better and can treat yourself.
Don't be afraid to ask your GP for extra help too...I ended up asking for physio and emotional support and I was referred really quickly for both.
Good luck for recovering now, take it really easy and be super kind to yourself.
Gosh you've really been through the mill you poor thing. I'm so glad you're on the other side now and hope you start to feel loads better and can treat yourself.
Don't be afraid to ask your GP for extra help too...I ended up asking for physio and emotional support and I was referred really quickly for both.
Good luck for recovering now, take it really easy and be super kind to yourself.
