Awake and up all night

Many happy returns Tillyboo  

Fingers crossed your hubby will be well enough for you both to enjoy a birthday outing xxx

Ye you are so brave and so is your husband of the treatments - not the same but similar to what Mike went through- Can I ask - are you sometimes confused with all the treatment you husband goes through - I couldn't keep up - so what we did was -he did leave a list for me to follow - we used to talk it through - but sometimes when I looked at my Man - I used to cry - he never knew just dealt with it & that is him & why I Love him - but being on the other side is so so hard at times

please we are always here for youx

Hi Tilly, as tomorrow is now today may I wish you a very happy birthday, full of lovely memories, it looks like your hubby's getting through treatment pretty well my friend and doing well, which is great news, unlike hie wonderful wife, I'm so sorry your struggling to sleep, it's not surprising as I've always said it's tougher being the carer than the patient, and I'm afraid my friend while your thoughts are causing anxiety in bed, sleeping will be very difficult, as being anxious is a self preservation response to perceived danger, and your brain doesn't want you to sleep if there's danger about, I would suggest a wellbeing or relaxation course.

Eddie xx 

Well that's a new one to me, the kerca-kerla, but it's not strange to think I would have a Scottish accent, I don't, but my auntie Ellen who moved down from Oban 52 years ago with her young family still have a Scottish twang, 

This harem isn't related, their fellow cancer patients, and very good friends, and this isn't our 1st holiday, and Bath is lovely 

I'm good regards Wales my friend. We've been to Aberystwyth, Criccieth, and Prestatyn this year and are returning to Criccieth mid November, sadly nowhere in the south, but my son, and family live in Shropshire near the Welsh borders Ann only a couple of hours from Debs, so who knows.

Eddie xx 

Good night Jann xx

Ah sorry Eddie, I didn't know you'd travelled through Wales already. I'm sure Debs and her giant hounds would make you welcome if you were ever near her neck of the woods. Night night xxx

Thank you x

Happy Birthday Tillyboo 

Tillyboo said:

Just wish I could sleep as just lying in bed, I cant put tv on in case I wake him. Things just go around on loop in your mind, why him, but why anyone.

I know what you mean.  I try to lie so still, try not to breathe (no not like that!), just so I don't disturb her. 

I try not to get up and post on Macmillan, because if I did, I'd never 

Then in the mornings I get accused of 'snoring'.

I hope you both can get to Fuerteventura.  The sun will do you both good. 

I keep a diary & now use the marsden app. But the Marsden keep sending out appointments which nobody knows about. As my husbands on a trial wing & trial, it all gets very confusing as I also have to book transport as well & sometimes ( most of the time) my head wants to explode with confusion. Ie hes being weaned off prednislone & I calculated on a spreadsheet how many pills were needed, as he run out. The onco prescribed 16 for 2 days when he needed 54. So more messages & when you feel so tired anyway, its just something I could do without. They changed his sigmoisoscopy appointment yesterday, again I have to ring transport today re change that from 9am to 1.30pm. So literally write everything down, if I didnt I'd never manage.

When I look at my husband I dont see him anymore, I see my sister, which probably sounds a bit bonkers. But when he was diagnosed something in me changed, not just a normal shock. I was eventyally diagnosed with PTSD, which I always associated with war veterans. But no, this as sent me back to 2003 when my sister passed, I see her in him, night terrors, flashbacks etc the list goes on. I also my Mum to cancer & 16 members of my family to cancer & in the last 2 months 3 good friends have been diagnosed with cancer. So I really am struggling, but my GP is marvelous in helping.

Also husband cannot deal with hus diagnosis & when it comes to doctors he just blanks out, hes never coped with docs in the 30 yrs I've know. But he was diagnosed & told in the most brutal way originally. I wasnt even there, just thought he was going for normal result & told yiu have have stage 4 lung cancer ( no symptoms) spread to L5 in spine & iliac bone in hip & brain. And told he was being referred to the Marsden &  sent home with a bunch of leaflets. Which I dont think he'll ever get over or come to.terms with. Luckily his bloods showed he was suitable for a STRIKE trial & had cyberknife to the brain met & thats gone as of last scans. He was on pembro immunotherapy for 6 months the first 3 month scan showed cancer stable & lymph node shrinkage but 2nd 3 month scan showed a fraction growth in lung & lymph node, so changed to carboplatin/premexted chemo in Sept, so far hes only had one, due to delayed adverse reaction to the immunotherapy. But after that first chemo within 5 days all fluid on his legs & knee pain went. But then 5 days after that the immuno colitis reaction started. So onco due to ring tomoz to see how he is & discuss when to restart chemo again.

Thank you x