Do you remember that song? It’s my party and I’ll cry if I want too? If you are young then you won’t remember it or have even heard of the song at all. I didn’t even really like it myself but I thought it would be a good title for a post.
The title is apt as through the blog I’m not getting people reading or I should say responding to it that have cancer and I know why. It’s because their cancer and their feelings and journey is theirs and mine is mine. I had a message this morning from the Beating Bowel Cancer charity to say hello and to encourage me to make contact with other sufferers of bowel cancer. So why haven’t I done this? These are the people I want to reach, this doesn’t make sense does it?
The problem is that I am trying to still juggle lots of things. The illness and it’s effects on my body with the tumours that are visibly growing, the side effects of the chemo, the worry of my loved ones and their well being, completing my daily posts so that I can talk to all of you and of course I have work to do too. I don’t want to talk to people who feel sorry for themselves and listen to their woes if they can’t be positive or laugh at parts of the whole shitting thing. Gosh I think this sounds harsh as I’m judging how they will feel and that’s not fair. Putting this on here might even put people off contacting me, I hope not
I wake every morning regardless of what time I go to bed at about 5.30. I actually like it as I use the early morning to work on my project work so that whatever happens in the day I know that I have done some work, I’ve contributed in my own small way. It’s so important to me but I also need to be in contact with store life and people in their everyday lives that are normal, with normal problems and normal joys of life that they share with me. I could have phoned Mr Vines yesterday and talked the project through over the phone but nothing beats an excuse to get into a store. I was however regretting this when I was stuck on the M25 car park at 4.30 yesterday, not moving at all and I don’t miss my sometimes on a bad day 5 hours stuck in traffic commuting to Kingston. Some of my team who have visited me have said how they don’t know how I could have done that journey for 4 years but I did it as as soon as I walked into the store I was happy and the trauma of the journey forgotten. Just to physically cope with yesterday’s meeting I had a sleep before I went and when I came back as my energy levels are just not the same at all.
As it’s Thursday and I only have tomorrow to go and then it’s a week off tablets for me, I can’t wait to not have to take the tablets and then deal with their side effects on my body. The foul taste in my mouth, not tasting food, the constant lump in my throat which makes me want to gag, the tiredness, the lack of sleep, and the constant runs to the loo. Oh no hold on a minute that’s part of everyday life lol so apart from that I should be feeling more normal for a week. However then I have to face cycle number 4. Steve talked to me last night about a chemo depression, that it’s a recognised as a real problem. The mental strength needed to go into hospital and make yourself ill for at least one week. I’m not going to think about chemo, it’s too depressing.
So mom is travelling down today ahead of the big meeting with Dr Weaver tomorrow. Now unlike the last meeting we are going to take it seriously and I have my questions all typed out and ready. I don’t think he will be able to talk about prognosis until we have the results of the CT scan after cycle 4 but I have to ask anyway. Are we better off knowing? I’m not sure but he should be able to give me some idea, I can’t be the only one who’s bowel cancer has behaved in this way, however I can’t find anything on the internet so maybe I’m just special lol.
Here are my questions:
- Where are the metastases in my body, and can you draw me a picture to help me understand what this looks like?
- How many tumours are in my gut and how large are they?
- Can you explain the cancer in my perennial wall
- How fast is my cancer spreading considering pre surgery there was no evidence of cancer in any other lymph nodes, only 4 months ago?
- Discuss the tumour in my groin?
- Other cases of same metastases, prognosis?
- Is there any chance of remission?
- CEA levels
- Do I need a MRI to check my liver?
- Can we remove the tumours?
- Has my KRAS status been checked?
- If I have the wild type KRAS gene, when would you recommend that cetuximab be used in my treatment pathway?
- Is the treatment I am being offered at this hospital the only option available to me as an NHS patient? If not, do I need to go private?
- Is HIPEC an option?
- Would I be eligible for a clinical trial?
- How will I know if the treatment has worked, when will I be called for my CT scan after cycle number 4
- What happens if I decide not to have treatment?
I think he will see a very different couple tomorrow. I won’t ask him if it’s safe to have oral sex whilst on chemo as we have 50 shades of chemo to get through first lol
Rebecca and I head into town to met up with Mary and mom also joins us. Stomach pains started before we left the house. After two hours out of the house I need to relax my tummy, the whole of it is cramping like wind. It was lovely to see Mary as I haven’t see her for a week and bless her she is going to get the ground floor office sorted out for me so that I don’t have to manage the stairs in the Wycombe store as there is 3 flights of them. I’m asleep as soon as I get home but wake again still in pain. Rebecca makes me have painkillers and it’s starting to ease off.
So chief editor returns and so you shouldn’t find any mistakes. We have planned a fun weekend as Lauren and Richard will be here. Lauren loves Nandos so I’m treating everyone on Saturday night
Stud Muffin Pete and I have been talking all day and here is a picture of his scar, now the naughty man has been telling the girlies that his is a war hero and my suggestion was that he had been attacked by sharks. Either way he has been told that us girls love a good scar, so maybe this has to be number 51 in 50 shades of chemo! Haha. Just for us Rita a kiss from the stud himself, back home and safe I’ll let you off the beard for now Pete as you haven’t been well but it has to go 😉
Hey Rita we have another denomination covered off, the Greek Orthodox church. Dena in Cyprus was passing a church the other day and she stopped to light a candle for Pete and I. The lighter provided by the church was broken but that still counts doesn’t it