I'm not OK

[Willowkins]

My lovely DH was diagnosed with Stage 4 cancer with mets in the liver and lungs last year. After 6 long months of chemo we have the scan and results this coming week. I have been holding it together all this time. The thing is I suddenly realise I am not OK. I know this sounds selfish and this shouldn't be about me but I feel so sad. I was listening to Run by Leona Lewis and I just burst into tears. Also, I've realised that I need everything to be perfect to feel safe but of course it's not perfect so I get really cross. I wanted to punch a man in his car earlier today. This is not OK is it?

Hi Willowkins. DH only had one blast of RT (radiotherapy). The people there tell you what to expect and like partners/carers in for the first bit of info. Then they scan and do the famous tattoo. For DH, he was told the pain he was being treated for would get worse for 4/6 weeks then improve. That's a good sign as means the RT is working.

For him, and each individual is different, the pain got worse within a couple of hours.

Your darling DH will be very tired, that's a definite side effect that kicks in quickly if only one session, more gradually if several sessions. Think bone weary tired.

Hope that's helpful and it is of course only our experience.

Thank you for the , have and back. Wish my Chromebook would let me do normal emoji of ice cream etc on here, but it won't (or not for me anyway!).

Nope, both cakes there Willowkins, lucky me ☺.

I can only talk about John's radiotherapy, and I expect they are all different.
John's was to the front and back of his chest area as it was to target the main tumour in his oesphogeous (sp?).
His was 10 treatments over the course of 2 weeks (Mon-Fri).
The treatments themselves were very quick, more time lining everything up than the treatment itself I think, and if the department were running to schedule (which unfortunately they mostly weren't as a number of the machines were having problems) he was in and out in 20 minutes.
He had lifts to most of them, mainly so he could be dropped immediately outside the department rather than having to park and walk forever. He did drive himself to the 2nd.
The first week was reasonably okay, by the end of the first week he was a lot more tired than he had been and his back in particular was suffering from radiation redness and was sore, we applied a cream to it.
The second week he was a lot tireder and the redness increased.

His was late Nov/early Dec and by Christmas he was just starting to feel more himself (unfortunately we both had some kind of virus between Christmas and New Year which knocked him back). Our understanding was a few weeks to 'recover', but when we saw the radiotherapy consultant to be signed off by him he said more like 2/3 months.
The first two weeks in January John seemed to be recovering his energy levels a lot more, he was in work or seeing clients everyday.
The radiotherapy also shrank his main tumour.

Hope that's helpful, do ask if anything specific.

Oh yes, as Selena says we were also told the area being targeted would become more painful - in John's case this was swallowing. They weren't quite sure how this would work due to this stents - whether it would increase this side effect or lessen it.
He hadn't had problems with swallowing after his stents but the radiotherapy did cause it to become a bit uncomfortable.

Gah! I wrote a post but MN ate it. Hate it when that happens.

I have no idea about radiotherapy so can't help there but hope it all goes to plan and is no more stressful that everything else is.

DH isn't feeling well today so he's still in bed. I'm pottering round the garden and longing for some normality. Or someone to look after me. That is normal for us, isn't it?

Hugs to all.

Oh total normal I think FuzzyCustard.

I'd have done anything to look after John, and I did.
The running of our household which had become a shared things since he'd moved in increasing fell solely to me, the assistance he'd given me with the boys, who I'd never viewed as his responsibility, became less and less.

He'd given so willingly to me, to our relationship, to my children, to my family and it had become my normal.
To have that gradually stripped away, but knowing that he'd happily and willingly done it and wished he was still able to, was hard.
I took up the slack both in terms of what John could no longer do but also in terms of his needs, I didn't have a choice in that - John needed me to and my family needed me to.

But oh god did I want someone to look after me at times.
Well no, what I wanted was John to took after me.

What he continued to give to me, until he was so consumed by the cancer that he had nothing left to give to anyone, was his love. That love, gentle caresses, softly spoken words of affection were the support that he gave to me.

Beautiful words squirrel and so true.

Even though my DH is still here, even if only just it feels, I miss desperately the little things - bringing me tea in bed, filling my car with petrol, sorting things out (having just had a slight altercation with getting wheelchair back in car - who designs these things?), getting things done, giggling at strange things people do etc etc etc.

I guess this will eventually become the norm for us here . But at least we have had the good stuff - which is more than many experience.

Hold on Selina because you have to and you can. Here is a virtual cup of tea in bed anyway.
🛏

Thank you Willowkins, very much appreciated!! Here's one for you too, and everyone else going through/having gone through this.

Started off really wet here, I met a friend for coffee, she gave me one of her special lemon drizzle cakes - and I walked home in semi-sun.

Really is the little things, , isn't it?

It is Selena x

Today I am feeing unaccountably tearful. Really not sure why, it's probably just a combination of weariness and that horrible feeling that nothing will ever be normal again. (An seeing a couple of weddings on facebook and knowing we can't go to any weddings because of infection risk).

My stamping-feet inner child just wants all this to stop and to be happy again.

Oh Fuzzy of course you feel tearful and want it all to just be ok. It's hard to go through this - and all the while supporting DH. So, can you plan some treats just for you - something easy to start with? Sending you positivity and energy this week 🌈

Thank you willowkins. Today I painted an old blanket box...blue and white with decoupage sea birds. Oh that just sounds weird!

Hey ho, the prolonged release morphine (MST) kindly relieving DH's pain but zonking him out so he's been drowsy 24/7 since Friday, saying also he feels as though he's in 2 pieces, not joined up. Deciding that didn't sound quite right, I rang Palliative Team this morning who got back this afternoon, debated amongst themselves to decide eventually he should see GP. GP does phone consult and says DH probably sensitive to morphine (he is to aspirin) so to try Oxycodon. Next time I'm going straight to GP, simpler and quicker.

Another box of (dangerous drug classification) goodies to store. I'm thinking of getting a reclining chair at the surgery, and a bed at the chemist, and I have to go back to both tomorrow for the liquid Oxycodon. Good exercise at least as I like to walk it, it's about a 3 mile round trip (with stop for and maybe whilst waiting for pharmacist).

Hope everyone having an OK-ish day without such tedious hassle? Sorry to be so boring!

Hello all. Big update today. We got a call from the consultant to say MDT reviewed latest MRI and main tumour has shrunk a lot more than expected. So the plan now has changed from: 5-weeks-of-radiochemotherapy-and-a-possible-op-in-September to: 1-week-of-radiochemotherapy-and-probable-op-in-July. That would just leave the mets in the liver. Can't quite believe it - DH says he'll believe it when they're wheeling him into the operating theatre - and waiting for the disappointment round the bend but, for the time being anyway, it's positive news.

Hope the Oxycodon is better Selena.
Willowkins that's fantastic news .
Fuzzy hugs.
xx

Thank you, Squirrels.

Great news Willowkins

Gosh, how creative Fuzzy, well done you!

willlowkins so pleased to hear that...great news.

DH did ok at hosp today. Blood counts holding up (not up to normal) but not plummeted as they did a couple of weeks ago. As there is nothing to do next week,. we have been given a week off from a hospital visit! If it works (A&E gallops permitting) it will be the longest we have gone without a hosp trip in almost 10 months. Keep your fingers crossed for a peaceful fortnight!

Love to everyone.

Hello all, sorry I've been absent for a while.

DH got his scan results yesterday and the news was good, no cancer seen. Can't quite believe it.

Fantastic news Willow.

Such good news, hugs x

Evening

Seems to be a thread of mixed blessings at the moment
willow and tasmanian great news for you both
selena and fuzzy hang on in there you are both amazing

DH was meant to be having an MRI today for his op on Monday, MRI scanner is broken, he is priority for tomorrow or Friday but he is going to ring the hospital tomorrow, hopefully they can get him into another hospital for the scan

Thanks both.

I hope they get you in for the scan quickly Five.

I wish I had some good news. I really really really want some good news. And I am truly pleased for those who have good news, truly.

But DH is drowsy then hallucinating even on this Oxycodone, he's weak because not eating and getting frailer by the second. I can't bear it and sobbed pitifully over my poor son this afternoon.

Chin up, I can do this.

Thinking of you Selena, you can do this, you will do it. But that doesn't make it easy. I think it was the hardest thing I have ever been through, harder than this - and I write that having spent the evening unable to stop sobbing. Let go when you need to, and keep going when you can. Hugs.

Five hope the MRI gets sorted and everything crossed for the op.

You can do it Selena.