Stage 4 bowel cancer

helena

Night time dreads and fears

Pity party alert! After chemo and steroids today I can't sleep and my mind feels as if there's a thunder and lightening storm going on inside, sleep eludes me and I'm feeling particularly sorry for myself so I'm hoping that by writing it down it helps.
I'm really tired of being brave, positive, upbeat and sometimes self delusional. I had enough of saying 'I'm fine' when at this moment in time I'm not.
My heart breaks when I look deep into my children's eyes, even though they're grown-up they'll always be my babies and seeing fear in them, I'm meant to love and protect them and this illness hurts the ones I love the most. How dare it!I know how lucky I am to have seen them grow up, to go to their graduations, to be at their weddings and to celebrate the arrival of my grandchildren but I'm only 59, I don't want to leave them. I've accepted my diagnosis but I'm not ready to accept any prognosis.
I well up with tears when I watch my darling grandchildren taking part in any everyday activity that a lot of grannies are able to take for granted. Every single minute of every event is so special to me, birthdays, nativity plays, school sports day, losing baby teeth, trips to the park and reading them a bedtime story that sometimes feelings of sadness overwhelm me and I cry on the inside. I want to shout to all the other grandparents to savour every moment whilst they don't have the fear of not being there for next years nativity, next years sports day or next years birthday that I have. There have been occasions when I have had to retreat to a toilet to shed a silent tear and then re-emerge without making a fuss.
I worry about my darling partner if I'm not here. We met only in 2012 and he is the most wonderful man. He lost his beloved wife to breast cancer in 2009 and now I have brought this cancer beast back into his life. When we met I was healthy, had a career and a 'joie de vivre' - now I don't. I love the very bones of him and the thought of him being on his own drives me to despair. One thing he said when he asked me to marry him was that he was so happy that he would never be on his own again, how will be cope on his own? I have asked him to not feel guilty about meeting somebody new if I'm not here, I just genuinely want him "not to be alone".
Those are my the fears and the sorrows that are playing havoc with my mind. If anyone has managed to get to the end of pity party then I apologise for its length, its negativity and my wallowing self pity. Tomorrow is another day and I'll just pop my masquerade happy mask back on. One of my fellow chemo buddies today greeted me as "hello smiler", well he wouldn't say that if he read this rant tonight would he? Nope.

TeaBag

@helena I’m back in tomorrow for chemo ☹️. Hope you get a good nights sleep tonight.
Do you ever take a sleeping tablet, I do every so often just to help me get a full nights sleep but I don’t take them that often, I’m nervous of taking anything long term (weird isn’t it) . In fact before I got cancer I was someone who didn’t even take paracetamol and now I’m pumped full of shit regularly.
I’m not very good at meditation etc but I am trying to use it to quiet my mind when those dark thoughts take hold.
I found an app called ‘smiling mind’ it’s free and I find it good. You just listen to this guys voice and try to follow his instructions (mostly about breathing) but each one is only 5/6 mins. Which is about the max time I can manage. Try it and see what you think?
Sleep well. Love Fiona

helena

Thanks @Baxter2 and I really hope that you're feeling a bit better in yourself too. I understand you not wanting want to go into detail but please pm me if you would like a chat. These innermost anxieties can take hold and play nasty little mind games in quiet moments. I'm trying to explore options for the walk on the 1st and I would really like to come so I'm going to check out train times etc and see if I can work out a plan as I would love to see you and to do something practical and positive to raise funds. I hope the new day is a good day for you and I'm sending you a big cyber hug straight from my heart ❤️ from Aileen

helena

Hello @TeaBag thanks for your reply and I hope you're all geared up for your chemo today and I hope it goes well.
I haven't tried sleeping pills as I felt that I took enough medicines that I was rattling and when I was working I was so exhausted that I fell asleep quickly but now I'm on long term sick leave I don't sleep well and steroids make it far worse. I'm the same as you, I used to seldom take any medication, not even paracetemol, but now I'm like a walking medicine chest. I don't even like going to my doctor (I've only been once this whole year when my blood pressure went through the roof) so I don't really have a rapport with anyone in my local surgery to discuss sleeplessness but I will make an appointment. I shall also download the App that you suggested too and see if that makes a difference. I did try Mindfulness at Maggies a few years ago but didn't continue with it properly and I do try to meditate but my thoughts run away with me. I think the time has come when I have to take better care of my holistic health and explore suggested avenues. That's one of the great things about this forum being able to meet and chat, albeit virtually, with folks who know exactly how we feel and can make genuine suggestions.
I'll be thinking about you today while you're having your 23rd (I think) chemo. Pop on your tiara once you get settled on your chemo throne 🌟🌟🌟 love, light and diamonds Aileen :x::x::x:

Baxter2

Hi @helena

Maybe my comment made you wonder if I'm struggling atm and if so, I'm sorry for that. I really more meant that from time to time, I have my 'moments' where a lot of the thoughts are similar to yours. Fortunately, theses times are few and far between at the moment. When they do occur though, they cause real turmoil! I'm blissfully happy just now (keeping my head firmly stuck in the sand!) just busily enjoying life I guess. It would be brilliant if you could come to Edinburgh on the 1st but I do know its a fair old way to travel for you! I'd love to be your walking buddy too!

Please take care and dm me anytime!

Lots of love

Karen 💛💙💚❤️💜

helena

Hi @Baxter2 , I probably misinterpreted your message and I'm really delighted that you're head is in a good place so I shall'nt worry. I think I'll take a leaf out of your book and revert back to your mode of modus operandi and pop my head back in the sand again, it's a nicer place to be. (I'm still going to seek counselling, Mindfulness and holistic Apps.
I would love to see you on the 1st and be walking buddies. Thank you, as always, for being so considerate and understanding, lots of love to you too, Aileen :x::x::x:

Baxter2

@helena

Have you ever thought about Penny Brohn? They do have a Scottish Centre in Dumfries but the national centre in Bristol is just brilliant! They offer loads of free residential courses over a two night stay. The accommodation and food are all free too! The venue and facilitators are just wonderful and the whole approach is holistic. They're a charity and do ask for a donation but that's not compulsory. I'm going for my fourth course on 17-19 Sept called 'Nurturing Resources'' The title even makes me feel good! There's are a few of us who've become friends on the forum and FB group.

I fly easy jet Edinburgh to Bristol and if my cousins not meeting me at the airport, I take a taxi to the venue about 25 mins away (I think!) so, for the cost of a cheap flight and taxis, you gain so very much! Have a look at their website and maybe see if you can hook up with someone else from the forum? You need to book ahead but they're obviously very understanding if you need to cancel for any reason, even last minute. 😉

Loads of love

Karen 💜💛💚💙❤️

helena

@Baxter2 that sounds like a fabulous idea and I'll get straight onto their Web page. I wonder if lovely @Gypsey would like to come too? :x::x::x:

Baxter2

Great news @helena! You WONT be disappointed!

Do EasyJet or Ryanair fly from Inverness or Aberdeen to Bristol?

Karen :x::x::x::x::x:

helena

Yes they do and I'm checking out the times @Baxter2, I've tried to book onto the course but there's an error on the page but if I can get onto the course then even if the flight times don't suit then I can maybe stay overnight in a hotel. I'm very excited :x::x::x:

Baxter2

Hi @helena

They like you to do the courses in a sequence so you're unlikely to be able to book on the same course as me. However, there may well be another course running at the same time that you could book onto? Call up and have a chat with them if easier esp if website has error atm.

GOOD LUCK!!!

Karen :x::x::x::x::x:

TeaBag

Hi @helena I am on chemo no 24 today! 14 full rounds of Folfox + Avastin and now 10 of 5fu + Avastin so I definitely can wear that tiara today. After all my talk about the strategies I use during those dark nights, I was awake last night until 3am with anxiety becasue I knew I was going in for chemo today. Even though this reduced or maintenance chemo is manageable I still get anxious and worried about the whole process - going in to the oncology ward is stressful on its own never mind getting bloods, waiting for results, then getting the drugs and the tiredness!!!! I dont need to tell you all about it.

About meditation, I am completely useless at it - as soon as I start, my mind starts to wander and not just to bad stuff but mainly to ordinary stuff "what will we have for dinner", "whats in the fridge that I could cook" "maybe I need to go to the shop" "do i need to put in a wash" and on and on. So dont for a minute think that i have it all sorted - I am the same as you (I think,,) good days, bad days, good nights, bad nights. I think that 'Smiling Mind' mind app is good - just because I tried some other ones and their voices annoyed me!!! or the time was too long!!!! I can just manage the 5/6 mins each meditation takes on the smiling mind app and and i did two today in the oncology ward. Let me know what you think of it.

It sounds like you and Karen (@Baxter2) have a plan going - that sounds good and well worthwhile doing - its good to have a buddy and this forum is a great support,. i hope that works out for you.

so much love and best wishes going to you right now (from the lady with the tiara today!!)
Love Fiona

helena

Dear @TeaBag great to hear that chemo number 24 was okay today, well done you! I think maintenace chemo is quite strange because we can't tick off the remaining chemo after each session but so long as its keeping the beast at bay then doing its job. You definately deserve the tiara tonight so wear it with pride......... 🌟 and I'll keep everything crossed that you manage to get some sleep tonight.
Why don't you think about going on a Penny Brohn course in Bristol in September? I'm looking at booking a course and trying to get flights that would fit in with Karen's dates but I have to confirm that there are spaces on a course (I can't go on the same one as Karen) have a wee look at the courses available on their Web page?
I'm going to have a look at the Smiling Mind app as well.
I'm sending you a big hug, some light and love and the tiara. Sleep well too. Aileen xxx

Baxter2

Hi @TeaBag and @helena

I'd 100% recommend to consider Penny Brohn! It feels like a massive cosy and nurturing comfort blanket wrapped around us and keeping us safe. Honestly it's like a retreat and when you step inside the beautiful building you'll know what I mean (I hope!) Fingers crossed you can find a course same week as some of us are going. Maybe there's are others you can ask too? Fingers crossed you'll both manage to go at some point. Use the wee search icon at the top right and it may bring up previous posts about it and sour photos!

Lots of love to you both!

Karen 💚💜💙❤️💛

Ps hoping you also manage the walk in Edinburgh on 1st @helena 😘😉

helena

Hello @Baxter2 and @TeaBag - I'm looking at a 2 day course on the 17th and 18th at Bristol called Living Well With The Impact of Cancer. I could fly down on Monday the 16th and return on Thursday 19th by Easy Jet. I'll phone the centre tomorrow to make sure there are places available before I book flights but I really feel I would benefit from this course and it would be great to meet others in the same position. I'm not sure yet if this is a chemo week or not either but I'll cross that bridge when I come to it....... hope you both get some sleep after your chemo and steroids today. Sweet dreams, Aileen :x::x::x::x:

Baxter2

That sounds great @helena!!! Im so excited for us both!!! I would probs fly down tues 17th early flight if it's a lunchtime start. The first time was 9am kick off and finished Thursday teatime whereas the second and third were lunch tues to lunch thurs. I'll need to find out unless my trusted advisor @HH79:knows for sure? You can also take a 'carer' so spouses, partners, mums or dads can accompany. Again, they'll have their own en suite room free of charge (unless of course you wish to share your double bed!)

Let me know how things go!! I've not got chemo that week! Yippee!

Loads of love

Karen 💙❤️💚💜💛

Lirio345

I am at Penny Brohn then as well so it would be brilliant @helena to see you again. I agree with everything that Karen has said about it!! Kim :x::x:

HH79

Hi @helena @Baxter2 sorry so quick but yes do come!! It’s 1pm to 1pm the Tues & Thur last time I looked online but check when you book re flights etc yay! :x::x:

Highkaren

@helena , well your post could just be my post if I changed the name except I haven’t got any grandchildren and two boys 18 and 21 with no signs of marriages on the horizon . I feel cheated and whilst in the main I am positive, since my operation I’ve been quite down and have started a course of antidepressants to see if that will lift my spirits. I’ve just had a stable scan which has always been the case since I was diagnosed, I’ve never had any progression so remarkable really. Cancer certainly has its challenges and learning to live with it and the cycle of scans takes its toll but I’m thankful deep down for another day. Lots of love to you xx karen

GD62

Hello @helena

I think what you have posted is familiar to many of us, and so natural, but you've had great advice from fellow forum members. Penny Brohn sounds as though it would help many in the same boat.

Hugs :x:

angepange

@helena , your post really hit a cord with me. You described your feelings so eloquently, no one could fail to be moved by it. I have no advice, I can’t empathise, I just wanted to give you a massive virtual hug and send you love. :x::x::x::x: