Update and new worrying symptoms....

Oh, Chris, so much of what you've said resonates only too well.

When I collected our "just in case" meds it was almost closing time in Boots. I was sitting waiting on the prescription barely holding it together. The girl brough the bag round to me and said "Here's your lucky bag". She took one look at me and asked if I was ok. That was all it took to trigger the tears. She joined in and we both say crying in the middle of the shop. That's the hardest prescription you'll ever collect but for us it was worth its weight in gold when we needed it. Ours lurked on top of the fridge for months.

You're right- having that phone number and knowing that there is someone there 24/7 that can help is a relief you can't really describe to someone who hasn't experienced it. I'm glad you've got the team on board.

Stay strong. One step at a time here. Please remember that you're not alone. We're here for you. Your journey has touched all our hearts.

sending love and light and hugs

Wee Me xx

The hospice support is so important. Our team supplied a hospital bed and 3 visits a day from carers as soon as we needed it. They supported me as well and would make me cups of tea and give me time to take the dog out. Most days they were my only contact with the world outside.

We also had the CNS team who would come out straight away at night when I needed support..

My husband was kept pain free and at home which is what he wanted. 

The support and care from the hospice will remain with me.

Good luck and take good care

Such a tough time for you, Chris. Thank you for taking the time to update us, you are further down the path than I am and it really does help to read this detail, however difficult it is to write. It's hard enough to go through this at the best of times, but particularly rough against the backdrop of Christmas and trying to keep things as normal as possible for the kids and the rest of the family. Wishing you much strength.

Well, it doesn't seem only 12 days ago since I posted an update, more like 12 weeks so much has happened. J's mobility has continued to decline so we are now at wheelchair and strip wash stage. Physically managing her can be really difficult and I would advise anyone else who gets to this point to take the time to learn how to move someone without hurting them or yourself. 

We saw the consultant again on Tuesday and as I predicted in my last post he wasn't going to continue with the TMZ rechallenge. He felt that it clearly hasn't provided much if any benefit and could worsen things. So we were officially discharged from oncology. This was absolutely the right decision and it's a relief to think no more blood tests, no more MRIs and no more hospital visits (hopefully). 

So I was preparing myself and the kids for a fairly rapid but steady decline then this morning at 3am completely out the blue came her first ever seizure. When we met with the neurosurgeon 18 months ago he looked at the MRI and said he thought seizures unlikely due to the region of the brain affected. I guess all this time later and with clear aggressive growth going on it's pushed into somewhere new.

As it was her first seizure I rang 999 and they were great and here in 20 minutes. By then though all had calmed down and thankfully they showed no inclination to take her into hospital. Coincidentally we'd filled in the Treatment Escalation Plan form yesterday to say that hospital admission should only be done in life threatening circumstances. 

Despite all of this when she is awake she's still fairly with it. Though the symptoms are really starting to mount up for her so much of this time is just spent struggling with going to the loo, eating or washing.

I think we are now at the point where I'd like this to be over. Her quality of life has reduced enormously over the last few weeks and much of her waking hours are spent in discomfort. Her wonderful smile is vanishingly rare and I'm so keen to look after her and keep her at home but not sure how much longer I can manage the physical side of things even with carers and nurses coming in most days.

Thanks for listening everyone. It means a lot to have a shared space with people who understand.

Sending love and hugs to you all

Chris 

Your story brings back so many memories. My husbands decline was just as quick. We managed for three weeks as he was able to weight bear so I could transfer him (I am a nurse myself so I had all my moving and handling training). One day he couldn't  so we had to get the hospital bed downstairs and a lot more support. Luckily his personality did not change but everything else did. The last couple of weeks he slowly disappeared in front of me but he was not in any pain. 

Like you I wanted it to be over because he would have hated it. You will find a strength you never knew you had.

I am sending you a big hug because often that is what we need most.

So sorry to read this Chris, its so cruel to see the people we love vanish before us.  You are doing amazingly well looking after J and your boys.  Sending lots of love and strength to you all at this time.  Hold onto the memories of her beautiful smile ️

Oh Chris, so sorry to read this. I hear you though. This is such a cruel journey for you all.

You do reach a stage where you want, need in a way, it to be over but as Sulubee says you'll find strength you never knew you had. Don't feel bad for the way you feel. You have been incredible throughout this journey.

One step at a time...I know I found life so much easier and supported once we were dismissed from oncology. In our case that was when the "caring" started and our local teams were awesome.

Sending you a huge virtual hug and lots of love and strength. Remember you're not alone. We're here for you.

love n hugs

Wee Me xx

Oh Chris - I am so sorry to read your update. Sending you love, strength and a cwtch x 

Hi Chris 

Im so sorry to hear of your update. 

You’re doing amazingly well, it’s so admirable that you want to keep her at home… Please think about yourself though too. My dad’s last week was in the hospice, and the care was truely phenomenal. 

Will be thinking about you and your family xxx