So this post is really just to bring things up to date now.
As you know I've been home for 10 days now and although still exhausted mostly, every day feels as though I maybe have found a little energy from somewhere. I'm managing to walk, slowly and painfully at times (muscles in stomach are painful not the actual wound - that's just uncomfortable mostly rather than painful)
I have no appetite and have to force myself to eat daily. People ask me 'What do you fancy to eat, anything, I'll get it - just say what you want' and the truth is I don't want anything.
I know I have to eat for obvious reasons but I simply cannot say what it is I 'want' to eat because I don't actually 'want' anything. I went into hospital weighing about 8st 4lbs and now weigh around 7st 9lbs....
It really pisses me off when people say 'You have to eat' because I'm not dim and I know that - what they need to tell me is HOW to eat when you don't want to......
Colorectal nurses advice at the moment is to survive on Ice Cream and Cream cakes (and even the thought of that makes me heave) :-(
No doubt I'll work it out eventually
Went to the GP last week because a large lump appeared in my neck, on the jawline. Left it a few days and when it hadn't gone I asked the District Nurses what they thought - they said it needed to be checked.
GP was quite bothered by it and decided to contact the Oncology team that I saw back in June and get me a referral. They've since contacted me and said they'll see me on the 14th December because that was always the plan after surgery anyway.
Despite my surgeon appearing after the surgery and declaring to my family 'No more cancer in you Carole' he's since admitted he cannot be sure of this.
A few days after that first declaration he came back and said he was waiting for lab/histology reports and couldn't confirm anything one way or the other until then - but at first glance it looked like he had probably managed to get a good margin....
On my last day in hospital he came and said he now had the histology reports which showed a 'poorly differentiated adenocarcinoma' and he was now referring me for 6 months IV chemo....I was gutted (in more ways than one)
I'm going to discuss things with the Oncology team at the other hospital but I have to tell you all that there is no final decision been made yet.
I am not happy about doing 6 months Chemo unless they can tell me exactly what we are targetting with this poison. I am fairly sure that I'm not going down the Chemo route unless there is still cancer in my body - more questions than answers right now.
Looks like I may well be asking for another PET scan at some point :-)
Right now I'm so weak and tired that I doubt I'd even survive Chemo anyway.
Going to the hospital tomorrow to see the Stoma nurses and get some new supplies ordered. It works okay (the Stoma) it's easy enough to take care of but I just detest it.
Dj asked me yesterday if I hated it as much as I'd expected to.....said I didn't really know right now because it's a bit soon yet, but I definitely don't like it.
Rab then pointed out that he didn't think I'd ever LIKE it, as such, but as time goes by I'll think about it all less. That probably sums it up.
District nurses come to me every other day to dress the wound and check that it's free from infection. I'm getting the stitches out on the 8th December and hopefully it's going to hold up. Looking forward to a long soak in the bath after that - showers aren't the same when you ache all over and just need a long soak.
District nurses are lovely, very kind and reliable. I've heard stories in other areas where people are let down regularly by nurses that don't arrive on the correct day or refuse to come at weekends - mine have been brilliant and each one has been so kind to me. Although they have busy schedules they always make time for a chat afterwards and ask if there's anything at all they can help me with.
So, to sum up - every day is still hard. I've cried every day since I've been home, sometimes I don't even know WHY I'm crying - other times I can pinpoint the reason or probable reason....
I feel so drained and exhausted that I have no 'Wow! I'm alive and the cancer's gone' feelings at all....I just feel like shit to be quite honest - roll on New Year!
This picture below is probably one of the least complimentary ones ever taken of me....(taken the day after I returned home from hospital - Friday, 19th Nov)....
Thanks Dj for saying 'Mummy, I took this picture when you were asleep and I SWEAR you do NOT look like this and the camera DOES lie'....:-)
Hello Darling,Dont worry about what is to come,just get each day sorted.I found when I felt at my worse that I could only drink warm chocolate Complan.at least the vitamins were there and the chocolate gave a sugar boost.It is no wonder you are not celebrating,you have had enough to bring an elephant to its knees!!Crying is a good thing Carole,it washes out the baddies,you have been hit with a sledgehammer and also had all the stress beforehand.One day at a time,darling girl.Lots of rubbish TV and let people spoil you.We mothers feel guilty if we are not seeing to everyone but people actually enjoy helping.So much love to you and your lovely family.Rose xxxx
ReplyDeleteI know saying things like 'stay strong' and 'keep your chin up' probably don't have such a positive effect on you, but... I'm not sure what there is to say other than that.
ReplyDeleteMy heart is torn for you, I can't imagine what you are going through with the news that chemo is needed. I honestly am at a loss for words.
But hopefully knowing you are not alone, knowing that we are here for you whenever you need us, will give you a little strength.
If your pain could somehow be shared with me, I would gladly take it on. I love you, and I pray that you get through this in the best possible health.
xx
Carol my darling, I can't imagine (even begin to imagine) what you have been through these past few weeks. I'll leave it to your other friends who have been through similar ordeals and have come out the other side.
ReplyDeleteAll I have to say is get better soon, listen to your body and use your friends and family as much as you can, they are all there for you and take each day as it comes.
Lots of love
Clare xxxx
Carol, you know me I hate chemo and wouldn't lie to you...
ReplyDeleteI was told that my cancer that had come back was probably already there but was too small to be picked up previously. I wish I knew about PET scans sooner as I should have insisted on one after the Cap failed - The fact that I couldn't have the capecitebine straight away after the op was probably what did it.
Now you have a chance to clear it straight after the op and that gives you a better chance of getting through this...
As we all know chemo doesn't always work but you have to take every opportunity thrown at you and absolutely have to have a PET scan and to be honest even if that doesn't show it I would have the dreaded chemo anyway..what one are they going to try...if they try Cap again then you will not be strong enough and I am sure they will have to wait at least 8-12 weeks anyways otherwise the same problem may occur...
The problem with bowel cancer is no other drug will touch it apart from Fluorouracil (5-FU or f5U) or derivatives such as capecitabine which are all part of the same family. It is only when Metastasis form or are suspected they can try other drugs - I was told that the only other drugs that may work after Cap fails is Irinotecan and possibly Oxaliplatin combined..there is also Avastin and Cetuximab but they are on the newly approved list and the hospital has to apply for funding.
Feel absolutely free not to print this as it started a short note but ended up a full blown essay.
If it is IV then I am sure it will be the 5FU as the cap is tablet form which changes into Fluorouracil in the blood.
I will update my blog etc as you will see how I got all this info!
Much Love dear friend - some tough decisions - I say you have to take everything they can throw at you to give yourself every chance.
T xx
Hi Tony,
ReplyDeleteThanks for the chemo info - will all be useful when I go to chat to them.
I won't make a final decision until I've met with the Oncology team again but it will all depend on whether they give me a PET again (was hard enough to get one last time eh) and what percentages we're talking about.
I'd also like to see and discuss my full histology reports before I make any decisions.
I'm unsure about all this because so many people seem to go down the Chemo route after surgery then 'bingo' it's back later anyway :-(....
So many decisions to make but haven't made absolute ones yet.
Clare,
ReplyDeleteThank you for all your lovely comments and for keeping up to date with me.
Knowing you and others are there for me does really help, especially when I just feel like I've just had enough of it all now...it gives me a kick and a reminder that got to keep on for now.
Much luv xxxxxxx
Lamia,
ReplyDeleteLuv you back sweetie....I really truly wouldn't WANT you to share this pain with me - I seriously wouldn't wish this onto my worst enemy (if I had one, which I don't)....but thank you for the offer :-)
Love to everyone at home too xxxx
Rose,
Lovely lady, great advice as always. I'll get myself some Choc complan and see if I can keep it down. Failing that I'll try drinking chocolate and pop some vitamin pills along the way.... I ate slightly better yesterday - not much but a little...
I'm glad crying is good for you - bearing that in mind I should be the healthiest person around right now :-))
Luv and hugs Rose and you also take good care of yourself xxxxxx
My sweet friend I simply do not know what to say other than my heart goes out to you. If I could offer something useful I would most certainly do just that.
ReplyDeleteRest and allow Mother Nature to do her work as much as possible. The only suggestion I can make is to maybe think about some yummy smoothies using fruit and yoghurt [unsweetened/unflavoured - Greek Style] to help to get that system settled.
Stay strong knowing that you are loved..
Hey Carole
ReplyDeleteThat's not the most wonderful photo of you is it?!
And yes, I also want to say 'come on, girl - get some mince and tetties in you,' but I know that's not helpful to you - it's just what people around you who care about you WANT you to do, because it will make them feel better. There is nothing worse than seeing someone you love look so miserable, so unhappy and so poorly...to not be able to help in ANY way is just so damned awful. I really feel for you all. This is such a horrible time.
Rose is so right about the one day at a time thing. Your body is working so hard behind the scenes to recover from this trauma and it needs time...crap when you have such a hyperactive, intelligent brain , I know, but you need to rest - and give in to the need to rest. Give yourself a break and tackle the chemo issue when you're thinking a bit straighter and your body's a bit stronger. One thing at a time.
Sending you all the love in the world
Shents xxx
Dear Carole
ReplyDeleteI wish I could say something to make you feel better. As everyone else has said, take one day at a time. Try not to over do let others take care of you till you are stronger. You have a lot on your plate to deal with. Thoughts and prayer are sent to you....
Love & Wishes Alli XOXO