I’m back with a new plan of attack

So I left you all in the last post with me sobbing with Steve in the shower, I couldn’t write anymore after that the pain just got to me and I asked Steve to just put up what I had written so far that day so that there was some news from me at least but to tell you all that I wasn’t good and I couldn’t go on to write about what was happening to me and the despair I had entered. Let me explain why I got into this state first, my day yesterday and last night and finally the new plan of attack.

How did I get into an 18 hour uncontrollable pain spasm – Easy when you look back. Prior to having bowel cancer I had a lazy bowel and would go maybe a week without going to the loo and I wouldn’t bat an eye lid. Following surgery this wasn’t a problem as food just kinda passed through too quickly hence the phrase used often about having a ‘one minute warning’. 4 weeks ago I started to get bunged up and just prior to conference I started on laxatives as the increased slow lease morphine was making my very lazy bowel even worse. I went only about three times and then I agreed with Marina that I wouldn’t take laxatives whilst at conference because I didn’t want the worry or embarrassment of going whilst there. Not Marinas fault at all. She agreed but I was to start taking them again when I returned from conference. I didn’t do this until the Saturday where I took 4 and nothing moved. On the Sunday I took 6 and not even a fart, nothing moved. Now that’s about 10 days of food in me now and it’s not moving and the stronger the painkillers the more it slowed down my bowel. So this vicious circle had started but as the blockage grew it then pressed on the tumours in my gut which pressed onto the nerves and the acute pain started and just wouldn’t go away.

When I went into have chemo yesterday I was greeted by the receptionist who had read my blog and the post about nurse Daisy, called Chemo Preparation. She thought it was hilarious and I was glad that I made her smile. I was in pain but not complete agony. I was greeted on the ward to smiles and everyone was pleased to see me. Jan who was looking after me that day when she asked how I had been just hugged me as I cried telling her of my pain. I told her of my 18 hours of agony and showed her my swollen tummy. She arranged for a doctor to come and see me. Mary from BHS High Wycombe also offered to come in and sit with me whilst she was on a lunch break, thank you Mary but sometimes it’s just easier to get on with it on your own. As I was in pain but not acute like the day before but I don’t like people seeing me in pain. My only thankful thought is that at least for the BHS conference I was well and the pain was for those two days under control. Had conference been any of the last 3 days I would have missed everything. Paula from my Lib Dem family came in to see me as she was having tests at the hospital yesterday. I gave her some daisies for Dylan her son and the picture is of him as he loves the daisies I sent to him, bless him.

The doctor came and gave me a really good examination, he had access to my CT scan and recent MRI scan. He was confident that all was okay but we had got to get my bowels moving. As I had a prescription here at home for a suppository in case the Ian Rennie nurses needed to use it, it was agreed that I would return home and do that myself. If this didn’t work then I had to go back into hospital today for an X-ray and an enema. On the way home I was sprawled across the car seat unable to bend in the middle, the tumours are hurting in my neck too so I’ve got my head to one side and my groin tumours are unhappy also, so I am swearing. Mom is driving and snaps at me to stop swearing. Sometimes in life the ‘F’ word whilst not nice just is the right word to use. Sorry mom.

We return home and after 5 hours without a fag and being in pain, I had two coffee’s and double that in fags. Steve got the stuff together and read through the leaflet and explained what I had to do. I went to the upstairs bathroom with The suppository, KY jelly, music to play plus a fag and an ashtray as I had no idea how long all this was going to take to work. The worse of it is trying to actually find your bum as you don’t want to hit the wrong hole now do you lol. It’s not something that I have had to do for years. Since I was about 8 years old and then it was a horse shaped size pill that was not pleasant at all to put up your bum and mom used to have to help me. I have to say thankfully things have moved on and it was okay actually. So suppository inserted. I just have to wait. ‘Rod Stewart’s If you want my body and you think it’s sexy’ comes on and it makes me laugh as my lovely Aunty Shelia who gave me the CD said ‘how can anyone be sad listening to that song and she was right it made me smile. The suppository worked quickly, no cramps or fuss and all I am saying is that one flush was not enough. Job done I head back down stairs about 1/2 stone lighter lol.

Now this wasn’t the end of it as food was stuck in my upper bowel too as there was nowhere for it to go so back to the laxatives to push that through into the large bowel. So whilst I had some relief the pressure was still on the nerves via the tumours, hence the crying the never ending pain, the sobbing of despair, the fear of what end of day’s will be like, the fear of what is to come and the never ending pleas from me to get away from the pain. The more morphine I take the worse my bowels get and round we go again, the vicious circle. Last night I took 5 ml of oral morphine and it took the edge off the pain for about 1/2 an hour and then I am left in a zombie like state  for a few hours as a trade off. I haven’t been eating properly for days now and mom is worried. Steve just tries to cope and Rebecca, my poor daughter like everyone else just had to cope with me in extreme pain and she, if she can, gets away from it all. I couldn’t even speak to Richard again last night as the pain gets so bad I can’t speak and I sob only with despair as I go for the next painkiller I can take, wishing time away by watching the clock on the kitchen wall tick by.

At 9 pm last night from 3 pm the day before the pain started to lift and I felt better. I slept okay last night and I have been okay all day now. I am always in pain in my back but it’s down to a dull roar, I can cope with that but agony for hours, I just can’t.

Ian Renie spent two hours with me today to go through my drugs and the past 3 days of pain. We have a new plan. I have to go everyday and if I don’t then it’s back to hourly laxatives and suppository’s for me, no problem there. I can’t stay on Dexi tablets that help but they will agree to a weeks course.  I need to find my bowels level of help required to cope with the current drugs I take over the next week so that it is sustainable and keep the pressure off my tumours, then we will be looking to remove Dexi tablets to see if the pain gets worse again. They have also offered to refer me to a pain specialist if this doesn’t work. Suzanne came (the Irish one who takes her tea just like Rita, wave the bag at the water lol) she also had a student with her. They are such lovely people and I appreciated their time today, no rushing just genuine care, love and support.

On a plus note my CEA cancer markers in my blood are still holding low at just 3 which is a non smokers level and I have no problems with my blood count so chemo could go ahead yesterday, unlike poor Karen who has again had problems with her bloods but at least now we are both going to be on a good week/bad week at the same time.

I woke this morning and started being sick but nothing was in my tummy to bring up so I’ve had to take anti sickness tablets that again slow your bowel down so this won’t help but I hate being sick so I have taken them anyway. Again the nausea returned for tea and again tablets taken which will slow my bowel down. I have chemo throat where swallowing is hard and it’s this that makes me feel sick. I am however okay and just in background pain.

So finally for today I have to thank you all for your love and support from yesterday. Andrei for his donation to Beating Bowel Cancer and to Mary who has also given to Ian Rennie as we yesterday created a link for them on the website.

So I’m back and all is well again. I can’t thank you enough for your words of encouragement and advice. You all know it must be bad as not talking to you all gives me so much pleasure. As Mary Poppins pointed out to me, if you promise ‘warts and all’ that’s what you have to give to help others, to educate people and if all this just saves one other family going through this awful disease and it’s devastating effects on a family and loved ones it will have been worth it, whatever happens to me.

Happy Birthday to Jake, my cousin Nicky’s son, much love to you Jake from us all xxx