Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Three Good Things

Kircal
Posted by

Good luck with your chemo tomorrow Daloni. I'm glad you've managed to enjoy the small pleasures of nightie buying and spending time with your girls. My medical team are in Edinburgh. I luckily have private health care but it's only covered in Scottish hospitals. However I assume the trials would be referred by NHS. I've asked to have a second opinion to try to get a few more options to open up for me. My CNS is looking into who would be appropriate. Ideally probably Glasgow based for 2nd opinion but just want to see if my doctor is telling me the whole story particularly in light of the good/bad scan results. 

Take care. Hope the chemo isn't too awful

Polly

anndanv
Posted by

Daloni, I will be thinking about you having your treatment tomorrow (well, really later today!) Hope it all goes smoothly for you!

Polly, If I was in your position, I'd ask for a second opinion at the West of Scotland Cancer Care Centre in Glasgow, this is where I attend and the oncologist definitely went the extra mile for me to get the trial drug when I failed to meet the criteria to be part of the trial! If it wasn't for her, I would not still be here! I do think you have to have complete trust in your oncologist to do the best for you and to be open and honest! Good luck!

Love Annette x

Kircal
Posted by

Hi Annette

Thank you for that information it's great to have a recommendation. Somewhere that seems proactive and also Scotland!

I will do some research and see who also does private work so I can try to get an early appointment. 

Polly

Button16
Posted by

We are on holiday in Crete just the 3 of us and despite the about of pain I'm in I determined to enjoy it

My 3 things today 

1) we are on holiday

2) the sun is shining and I'm making my husband order cocktails so I can have a sip lol

3) we are child free for the morning so we are lazing arrive the pool 

I hope all appointments and treatments today go as planned x

Alive
Posted by

Hi Button 16,

I hope you have a lovely holiday and enjoy the sunshine and the rest and cocktails!

My three good things,

Doctors appointment yesterday and we agreed that I could stop taking the Warfarin. Hooray! So today I enjoyed a grapefruit for breakfast. It was lovely.

So warm yesterday that I wore summer clothes again, now I am hoping that summer is really here now and all the winter clothes can be packed away.

Spent time in the garden yesterday  pruning another shrub that had finished flowering, job well done, today I can relax and look forward to seeing my granddaughters after school.

I hope this warmth and sunshine is helping you all to feel brighter, it always works for me.

Love and hugs

Maggie xx

bellabongo
Posted by

That is absolutely brilliant, Kircal. A new wee grandson! Get those cameras out!

Lots of love

Alison xxx 

Kircal
Posted by

Thanks Alison. A baby in the family is very special. 

Polly

anndanv
Posted by

Hi Polly, If you need any further info, just ask or pm me. I can give you phone numbers etc. A lot depends on the type of cancer you have but I can enquire who the expert in that field is for you, if you wish. The Consultants in Glasgow who do Private Consultations usually do them in the Nuffield in Great Western Road, Glasgow.  Good luck!

Love Annette x

Ms.Lin
Posted by

Hi all, 

Maggie, reading of your pruning brought my own satisfaction with pruning back to me. I am fond of my secateurs and pruners. Last autumn volunteered to prune at the churchyard. Did wonder what I had been thinking! But succeeded in accomplishing it all by 15-20 minute increments.

Button16, Crete! I do hope you can keep the pain at bay and enjoy every minute.

Three things from yesterday:

1) Myriad greens as all the trees are leafed now, including the oaks and limes.

2) Still sleeping very well, including every time I sit.

3)Neighbour and I exchanged lasagne and plumcake.

Three from today:

1) More energy and far less of standing at kitchen worktop trying to remember what I am about.

2) Brother says we may sleep in his bed when we go to town for appointment with oncologist.This will save us from having to find a room or of traveling over and back the same day.

3) The cat brought a mousie (dead, thank heavens) and dropped it at hubbie's feet. She sat  waiting to have it acknowledged. I don't know whether to be relieved that she is a good mouser, or concerned that there are mice!

Lin
Alive
Posted by

Hi all, 

Lyn you did well pruning the church garden. I really should do it in small sections but I am afraid I do these things until my back becomes painful and then I stop! Should stop before it gets painful really but I always think I can do a bit more. Been digging up the grass and weeds in the front garden this afternoon. I have done about 2/3 of it now but had to stop eventually. Hopefully I will finish it next time and then I can begin planting the new shrubs that I have bought.

Three good things

this morning watched 5 starlings and a sparrow all trying to get in the bird bath at once. It was lovely watching them having fun.

I watched a group of sparrows ‘playing’ can’t think of any other way to describe it. They were in and out of a bush and then on the ground squawking their heads off at each other. Really great to watch and it made me smile.

Had an appointment at the osteoporosis clinic this morning saw a lovely lady doctor who talked me through my latest Dexa scan and asked me if I was willing to come of Alendronic acid and change to Zolendronic acid  as it should work better for me. As I am to stay on Letrozole for life it sounded like a good idea. (It does have an extra benefit because it appears to stop breast cancer recurring again). I was only too willing to say yes. Dentist appointment in June and after that they will give me my first infusion. It’s only once a year so that seems like a bonus.

love and hugs

Maggie xx

daloni
Posted by

What a lovely brother,

There are always mice...

my three good things 

1. I had some energy today despite yesterday’s chemo. So I managed a trip out on my e-bike. It makes riding uphill feel like a ride along the prom with the wind behind me 

2. I sorted out some boring financial stuff - dull but necessary and will make life easier in the long run

3. I played a good dice game with my daughter 

Lass
Posted by

Hey Daloni, 

Could I ask what ebike you got and how did you decide which to go for? And where did you purchase from? 

I'm tempted to try and save for one, but the prices vary drastically and I've no idea what half, OK most, of the words in the specs mean or what I do and don't need.

Thanks in advance. 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Kircal
Posted by

Annette

thank you for the advice. I'll be in touch if I need to take it further in Glasgow. My consultant is recommending a 2nd opinion at the Royal Marsden in London but my insurance doesn't cover London hospitals. Wondering if I should pay up. Apparently I'd then be referred back to my current consultant for treatment if anything new was suggested and if he agreed with the recommendations. 

Good things today

a good mornings paperwork with stuff that was hanging over me

lunch and tea outside in the sunshine

Daloni's cycling inspired me to go out on my bike (not electric) 4 miles just about finished me off. I may not do that again in a hurry. 

Met my tennis pals for a little glass of fizz to celebrate becoming a granny

take care all

Polly

daloni
Posted by

Hi

I did lots of research and landed on a Pendleton electric bike. I got it nearly new from eBay and paid £550 instead of the retail of £850, although they’ve now dropped to £750. Halfords sell them. 

It is a Dutch style step through bike (no undignified swinging my leg over) and has a basket on the front for my shopping. The battery comes out for charging (some of them you have to plug in the bike) and it has good reviews. It apparently has a range of 50 miles but I’ve not tested that  

It’s also on the cheaper end, believe it or not. The only cheaper ones are possibly dodgy imports from China. 

It is heavy so not good if you need to drag it inside for storage or safe keeping. I have a shed in my garden so don’t have that issue. 

You can take one for a test ride at Halfords. I absolutely love my e-bike. It’s such fun when I feel the motor kick in going uphill and nothing compares to the wind in your hair (ok bald head with a helmet on) going down again 

https://www.halfords.com/cycling/bikes/electric-bikes/pendleton-somerby-electric-hybrid-bike-white-navy--17-19-frames

Xx

Gobaith
Posted by

Hi

I just wanted to echo what has said. I love my ebike and I also have a Pendleton (I think we got it in a sale for about £500 so worth watching out for the drop in price). It is a little heavy but it's such good fun. The step through has been good for me too and the slightly more upright seating position suits me better than a standard bike. I lost my driving licence due to brain mets and this has really helped to give me back some independence although I'm still mainly a fair weather rider.

The battery lasts well and the boost it gives when you face a hill is just fab. A little bit of effort is required so it makes you feel like you've done some ( a little, it's really gentle) exercise but it's so much more manageable that a normal bike which I just wouldn't manage with my fatigue ect. 

I think Daloni is spot on - that feeling of the wind in your hair is unbeatable - I love my ebike and it's made me feel alive at times when I've felt written off - they should be prescribed on the NHS! 

x

Clare