The new plan

The first part of this post is a catch up on yesterday’s hospital visit which is not as positive as my day today so if you just want a positive read skip the first part, I won’t mind and the choice is yours.

Yesterday my blood test appointment ahead of chemo cycle 2 of 12 starting on Monday was at 3 pm. Oncologist appointment was a 4 pm. Steve was worried about me getting around the hospital with just my stick and arranges cover at work so that he can push me about in the wheelchair. The new prescription of MST (slow release morphine) has been organised by the wonderful Marina. As the lifts to the Sunrise ward are at the front of the hospital Steve drops me off and goes to get the prescription for me whilst I’m having bloods taken and then to return have maybe a relaxing coffee prior to the 4 pm appointment. Well that was the plan but life doesn’t always go to plan does it!

Steve goes to the chemist as my doctors have faxed the prescription through. They do this to the wrong chemist, when they do send it to the correct chemist for Steve as it’s morphine the pharmacist has to have the original prescription so Steve has to go back to the doctors then back to the chemist and instead of this being a simple task Steve is now stressed on top of the normal stress and arrives back at the hospital with just 5 minutes to spare before the appointment.

So he gets me in the wheelchair and at great speed we head to the appointment which is in another part of the hospital. I’m grateful for the wheelchair as I know that I just would not have been able to walk there. Checked in we go to the waiting area. We made it just in time. 50 minutes later my name is called and by now I’m not happy. Yet again with these appointments they are running an hour late!! Steve wheels me in and Dr Weaver is on holiday so we are seen by one of his registars. He asks the fatal question ‘hi sorry to keep you waiting and how are you?’ I rant about the wait, the pain of sitting for me in a wheel chair in an unbearably hot waiting room. He apologises again and I try to calm down for the meeting.

He shows us the CT scan and the tumours in my torso. It’s weird looking at the inside of your body, I have no idea what I’m looking at or for but the Dr tries to explain. He believes that the tumours are pressing on nerves. He is sending me for an MRI scan just in case they have missed anything as I question again if the cancer has gone into my bones. We discuss pain relief and we now have a new plan. The slow release morphine is to be taken twice a day. He has told me to not take the amtripaline but to replace it with gabapentin as it’s the best know nerve pain killer. I can take normal painkillers on top of this plus oral morphine for break through pain. All of these drugs slow your system down and everyone has constipation as a side effect! Oh the joy of life hey.

We discuss my prognosis of 18 – 24 months and that in view of the last chemo not working we know that this may even be shorter. He agrees to talk to Doctor Weaver about signing forms to say that I am terminal so that we can access pension funds and the critical life policy on our mortgage. Not nice to talk about but having access to these benefits if I do only have a year left would make such a difference. Steve wants to also use the money to fund other possible drugs that are not available on the NHS but all of this only doable with money.

Appointment over we head to the pharmacy and again have to wait for the new drugs. We have now been at the hospital for 3 hours! We finally leave the hospital and head for home through the rush hour traffic, oh joy again.

We pull up at home just as Rebecca pulls up following her driving lesson with a friend of ours, Simon. Richard and Louise are here too. Tea started Steve and I fill everyone in on the last 3 hours, two coffees and a few fags later Steve and I start to calm down. Simon comes in for a coffee, hasn’t seen me for a few months and he is shocked at the state of me. He can’t hide his obvious upset and shock of seeing me hobble about in pain with a walking stick. He says that he doesn’t know how I or we cope and I assure him that I’m fine and that at least I still have my sense of humour.

Tea done and cleared away. Steve and I make Lemon Drizzle cake for the BHS Wycombe team for their fund raising day. By 11.30 I’m knackered, I have got through the day with only two hours sleep and I don’t know where I’m getting my energy from. So not like me at all but I head off to bed. Mom suggest that I take the V shaped pillow with me for extra support, good idea. So last drugs taken I head off the bed with pink fluffy hot water bottle, oral morphine and the V shaped pillow, hardly a sexy look hey! Once in bed and lying down the pain starts raging again, I just can’t lie down. I don’t want to stop Steve from sleeping and I was going to give up and return downstairs but instead I take the extra morphine and finally I sleep.

I wake at 4.30, wow 4 1/2 hours sleep, bliss.

Saturday and my wonderful day 🙂

My day just got better and better. We went into BHS High Wycombe Mary and Anne had made cakes but the effort was amazing, the cup cakes even had daisies on top of them. We went for a McDonalds breakfast and I am so happy to be out, so happy that I feel almost well, that the pain is under control that as I talk to Mary about how difficult the past 5/6 weeks have been I cry and Mary hugs me as she understands. She had to look after her mom through cancer and she recalled how different her mom was once the pain was under control.All too soon we had to leave Mary as we had a date with Chemo Karen for her contribution to the calendar. The Wycombe team raise £152.36 🙂 and they are going to continue the fund raising tomorrow too. Thank you all so much.

Sat nav set we head off to chemo Karens house. Now we shared so much pain together, we have a shared experience, a bond that through the operation know one else can understand. The pain and suffering that I saw Karen go through even now just breaks my heart. But I know nothing of her world. I’m excited to see her world.

Her house is amazing, a small village set in the countryside. We pulled into the drive and there she was. Karen had baked a wonderful chocolate brownie cake and we enjoyed coffee and cake together. It was lovely to see Pat again too (Karen’s Mom) and Lucus her son made me daisy drawings and butterflies. Now Karen wasn’t sure about the photo shoot. None of us how perfect bodies, we all look better with clothes on. I am so proud of her for doing it, for supporting and doing her bit to raise money for Beating Bowel Cancer which do so much for so many people. All too soon we had to leave her and her wonderful house as my best mate Nicky and Goddaughter Beth are coming for the weekend.

We return home and my pain is back, I can’t rest as planned as I can’t lie down so I rest half propped up but I do sleep for a while. I wake and have to take extra painkillers but that takes the pain down to a dull roar but I can cope with that compared with the pain of the past weeks. We then have surprise visitors, Amy, and her very gorgeous hubby Joey and their cute new puppy Wilson. We all spent over an hour together, Amy loves my Daisy soft furnishings and Joey has also offered his muscles when the Daisy Den arrives and Steve has to build it. The last time I saw them was at their beautiful wedding and Amy remarks about how quickly I have changed health wise in just a few months. This also worries me but if we can get the pain under control I know that I can lead a better quality of life.

Today driving with Steve through the countryside in the sunshine was so wonderful. After suffering so much and being house bound for so long you see the world and natural beauty very differently. I feel alive, I feel like there is hope and a chance of picking more daisies with the people I love.

So a wonderful day, shared with wonderful people, life and what makes me happy is sharing precious moments together and today I did this and it has made me very happy 🙂

Finally a special thank you to Hilary (school friend) who sent my a beautiful cushion for my Daisy Den, I really appreciate the gift and it fits in lovely with my other soft furnishings 🙂