So back to Friday, just after the phone call where I left you all yesterday.
Before all that happened on the Friday morning I, in my dream machine as I sat and ran my fingers through my hair, just like any other morning but today, hair and lots of it came away in my hands, I don’t know why I haven’t mentioned this before now. Well I do really, firstly was it just a one off? and not hair loss (denial) or was it just going to slightly thin and I could get away with no one noticing and again denial I think. I’m on double dose morphine so I believe that soon the pain will magically disappear and I will be normal again, I just have to get through the zombie stage that morphine also brings where fatigue is so bad that you struggle to even lift your own eye lids up to look at people.
Anyway around 10.30 I spoke to Emma from Kingston as I wanted her to send to me the previous list of money saving ideas that we all, as a management team had collated as there is no point in try to reinvent the wheel is there?. We thought we had come up with some great ideas before and Kingston’s Troy (Operations Manager) had been invited to attend Head Office along with other stores due to some of those ideas being deemed as good ones and HO wanted to recognise the effort that had been put into this list. Whilst I was on the phone to Emma the house phone rang and it was Michelle an Ian Rennie nurse who wanted to check I was okay and to say that she was the nurse for the weekend should we need anything. Steve spoke to her for some time whilst telling me to get off the phone. As I finally came off the phone at the same time Steve and Michelle had given up on me and she had hung up too. Oh well I thought it’s okay as I can call them anytime and Marina has set me up for the weekend with all the drugs I need. I fall sleep again until 1 pm.
Mary arrived at about 1.30 pm with the Beating Bowel Cancer buckets and badges, plus flowers for me, thank you Mary. We chatted over coffee but all too soon it was time to leave for the hospital as my blood tests had to be taken ahead of chemo on Monday and I have to be there for 3 pm. We offered to drop Mary into town as we were going to the hospital. Mary decides to come with me to get my bloods done before she goes as it should have been quick and it would be lovely to have the company. I get out of the car and only use my stick as it’s a very short walk to the lifts and then to level 5 and the Sunrise Ward. Steve has been sent on yet another drug run to the chemist for KY jelly and more laxatives.
When I first started going there I used to check in at reception and just go to the bay I was in for that day. Now when I go in I’m greeted by smiles, as I walk into bay 1, nurses wave and say hello as I walk through and as I enter bay 1 I’m greeted by ‘hello Sex Kitten’ lol now this the first time and I already have a Sex Kitten pseudonym so I can’t adopt that one for me too. We exchange a few giggles and I sit and wait. Mary and I continue chatting. Blood extraction started I wave hello to Nurse Daisy with my walking stick which is now covered in daisies, she thinks that I have done this because of her and I haven’t the heart to say otherwise. I swear it was Mary not me that mentioned my blog however I will admit to taking over talking about it and that they are all in it. I refer to the pre chemo chat post with Daisy where all answers to any problems with chemo end with her saying in her accent ‘if you get temperature, you go A&E’ they are all laughing now and using the computer and their iPhones to log into the blog. I even have to write down the blog web address too for them as they all plan to read it over the weekend. So I tell them to download the book as it’s easier to follow. Now they are impressed, so I tell them about the Cancer Free song and ’50 shades of chemo’ now they all think this is wonderful and I spend so long talking about my blog that I suddenly remember Steve and hope that he hasn’t been kept waiting. I say we have to go and we leave them all in a very happy Friday mood cos they are in my book and their ward is in a video and they are in my blog. Job done I think as they maybe able to spread the blog to other patients or fellow nurses, plus they really laugh when they know ‘wiggy woman’ is in it too. Now I’m happy as well. Mary and I leave the Sunrise Ward laughing too.
On the way down to the car park I call Steve but he has been stuck in traffic so that’s all good then and as he needs to get something from Staples which is just right next door to the hospital and I’m feeling okay we agree to meet there. Mary joins me too and leaves when Steve arrives. Now it really is only a short walk but I regret doing it as the pain starts again. We return home and I hit the extra painkillers. At 7 pm I continued as planned with the extra morphine dose hoping that this will work. I have another problem too which is that although agreed with Ian Rennie nurses that during conference I wouldn’t take laxatives it’s now been 4 days with no movement and my tummy is starting to swell, as too are the tumours in my neck and extra ones have started to come up at the front of my neck, plus the hair loss, nice hey?
The plan now is to hope to cope with the extra morphine and that it works and I have to start taking laxatives. The prescription collected by Steve makes us both laugh as I now have 100 sachets of Laxatives and 5 tubes of KY jelly, now that’s a lotta lube for anyone. Friday night was spent cancelling my plans to travel to the Midlands as I know that I would be in real trouble if I tried to go. I took 4 sachets of laxatives and nothing happened. The discomfort continued and although I had another broken sleep all night I used the time to write yesterday’s post.
Saturday morning came and I feel a little bit better, I even cooked breakfast which whilst using the surfaces to hang onto I can manage. Steve suggests that as he would like to get out of the house for an hour, would I like to join him on a visit to a garage and then an aquatic shop near by and then return home. What could possibly go wrong hey so I agreed and got changed. I decided that I would like to drive and off we set, the pain starts in my neck where the extra tumours have popped up, my leg aches from the tumours in my leg where I use my accelerator and my back is in it’s normal pain. It’s not long before I pull over and Steve takes over. I will not put other car drivers’ lives at risk at all. At the garage I walk a very short distance with my stick and the pain continues. We go to the aquatic center and Steve tells me to wait in the car and not to even bother coming in. I haven’t ever told you about our fish have I, well that’s because although I feed them every morning as part of my routine and I look at them everyday as they swim there’s not much exciting writing material there so they never made the blog before. So before you think oh no a boring fish story is coming, I will spare you that pain apart from the knowledge that when we brought a school of 5 neons they were of course called ‘Take That’ and then when the real band split up two died and now there is only three but like the real band they are still going lol.
I sit in the car and I want to cry, where’s the extra pain relief from this morphine, why am I still in pain and weak in my back? It doesn’t make sense to me. As we travel back home we see a garden centre selling hot tubs, we stop as I want to look at them. The thought of having possible pain relief instantly in my home overrides the pain, if I had one of them like at conference it would be a way of having instant relief and bugger me it’s sale time :-). I struggle but determined to see them, to cost them out. Full details collected and as painful as it was it was worth it to see them but now I just want to get home to my chair and take extra drugs, to take all this bloody pain away. I had two great days without extra morphine at conference so why am I in so much pain today?
Back home in my chair I take extra drugs, I am back to my hot water bottle from Linda and I’m low cos the pain instead of just being in my back is down the right leg and in my neck too, plus I have to take bloody laxatives and talk poo throughout the day. Marina said on Friday if I don’t go over the weekend she will turn up Monday morning wearing industrial rubber gloves and she hopes that this will frighten the ‘shit’ out of me, lol very funny but I hope so too.
Steve suggests I phone Michelle, ‘will you phone her’ I say I just can’t face talking to anyone as I know I will cry, so I leave it to him and just lie there in pain and starting to look 6 months pregnant as my belly swells. Steve leaves a message for her to phone him and we wait. It’s not long before she calls back and Steve tells her our story and goes through all the drugs again and that the Ibuprofen 600mg tablets seem to work best and that the only other time the pain goes away is when I’m on chemo.
The LIGHT BULB moment – so then Michelle says ‘hold on that wouldn’t be the chemo, does she take Dexamethasone?’ Yes he says whilst she is on chemo only and just for the first 3 days, the 3 days where the pain goes away to a dull roar and I just have to cope with the side effects. OMG that’s the answer right there its the Dexi tablets (shall we call them as that’s too long to type every time). It’s the Dexi tablets that work for me, that takes the pain away not the chemo and guess what I have them here at home in my drug cupboard, I’ve always had them here, the answer just sitting there all along, for ‘fecks sake’ as Rita would say. Michelle tells Steve not to let me take any as it’s 3.15 and they interfere with sleep patterns, that she will call the doctor and confirm if it’s safe to take them from tomorrow, she hangs up and Steve and I sit together awaiting her call.
Now you can just imagine it can’t you, us sat in silence staring at the drugs that will take my pain down to a dull roar and then looking at the phone waiting for it to ring. Shall we or not take them it’s only just after 3 pm and my sleep pattern is not good away so where’s the problem? Steve breaks the silence to say that he knows what he would do, he would take them and just not tell them, what harm could they do, I’ve taken them before without any reaction. I say ‘no wait for the call from Michelle.’ Waiting continues as I stare at the box, the answer to pain for a few hours just sitting there right in front of me. At 3.24 pm I give in and take two. Then the phone rings and Michelle confirms that a prescription is waiting for Steve to pick up at the walk in centre at Wycombe Hospital but he has to go get them now as a doctor is waiting for him. Steve leaves immediately. He doesn’t tell her that I have been naughty and taken two Dexi tablets. What would you have all done I wonder?
Whilst he is out getting the drugs Michelle calls to see if I am okay. I can’t lie, I’ve never been good at it apart from when I was really young and so I tell her I have taken two Dexi, she says she doesn’t blame me. She is shocked when she hears that I sleep on a chair in the kitchen and that I only get 2-3 hours sleep a day. She offers me a hospital style bed for my home. No, no, and no that’s end of days stuff for me just having that stuff in my home fills me with fear, no thank you and I’m grateful but no. Michelle understands and says that they will get my pain sorted and they now have just one week to figure it out as you can’t take it long term whilst on chemo as it also lowers your immune system but they will find the answer and I take comfort in their determination to help me, thank you Michelle.
Before the hour is up the pain has eased to a dull manageable roar at last. Steve returns with the drugs and we have enough for one week as you can’t take them long term. The evening comes and although cancer pain is better now the pain from not going for 5 days is not good. I continue to take laxatives and at last something moves, it’s not an impressive amount but at least Marina will only be turning up for a chat and a cup of coffee and there will be no industrial size gloves in sight. I return to Steve to tell him the good news but my poo is a shade of pale yellow. so I look this up on the internet and read out the possible causes, we fall about laughing as it starts with ‘this maybe a sign that you are unwell’ It just really made me laugh, ‘bugger me Steve I may be unwell’ I say laughing! Anyway I hate talking about poo as you know but on a serious note if you have pale poo it means that it’s been in you body for too long, go see your doctor please.
The evening continues in this vein, me taking laxatives and in constipation pain and discomfort, my belly swells and swells, this must be putting pressure on the tumours which put pressure on my nerves and with the Dexi tablets now worn off I’m back in pain. Rebecca is out for the evening at an engagement party, we have the house to ourselves, we should be having a romantic, sexy time together without any interruptions and yet again it’s been spoilt by my illness. This makes me sad. Steve eventually goes to bed, the highlight of his romantic evening is watching Dr Who and knowing that I have finally been to the loo and talking poo colours, my poor poor Steve, my Mr Wonderful.
Steve asleep and Rebecca returns just before 2 am from the engagement party. Once I know that she is home safe I can rest and at 2.30 am I sleep until 5.30, and I laugh as I wake as 3 hours is now normal for me and I don’t regret being a rebel in taking the tablets at all now.
Sunday – so the new pain control plan is to reduce the morphine back to just a single dose twice a day, to increase the Gadapentin and to introduce Dexi in the morning and at lunch time 🙂
This post is now way too long for you all so I will leave you to get on with your Sunday rest but finally before I go I will leave you with happy thoughts.
Did you see Peter Andre last night and support him? I did, what a mover he is. Come on Peter, let’s win this hey!
Yesterday I got this text from Mary from BHS High Wycombe
I forgot to tell you a lovely lady came in to work today to find out how the fund raising went last Saturday. When I told her we raised just over £600 she was so pleased she told me last week that her mum had died a few years ago and she hadn’t seen anyone collecting for bowel cancer until she came in to our store then again in the Eden. Just wanted to share this with you. XXX
Now how lovely is that? We have made someone know that we care about the sufferers of bowel cancer 🙂
I also received this message:
Really glad you had such a good time at conference and what wonderful people your BHS friends are. Buy BHS is my new motto. Xxxxxxx
So Mr Bottom if you read this post you will know that my readers are supporting us both in terms of recovery 🙂
And finally following the successful tweet from Sean Fletcher I have asked him to retweet the Cancer Free song, so we will see how that goes, well I think I tweeted him as you know how bad I am on tweeter hey!
Enjoy Sunday, pick daisies and balance that emotional bucket is what I say 🙂 love to you all xx