A setback……Now ICE

Hi Scaggette and sorry to hear that the Brentuximab did not do the job.

Setbacks like these unfortunately can happen when a condition is stubborn - this is pre SCT for you....... At times it is all about finding the best treatment and one of these treatments is ICE (Macmillan Information Link)

If you put ICE into the Search Tool  near the top and click on [Anywhere] you will take up the older posts.

ICE is just like any other salvage treatment, I had a different type, but the main aim of these treatment is to do the job of getting him into the position for going into SCT.

It's hard during these times especially when there are setbacks but all you can do is trust in the clinical team as they navigate this all the time.

Always around to chat ((hugs))

Thanks again so much! We are holding up and hoping this does the trick. We hd a good chat yesterday and roce around the forest Fingers crossed ICE is the one! Xxx

Hi Highlander. A question for your amazing wife. Is it normal to be terrified before your partner goes into hospital. My man is my soulmate. Been through everything together. At the moment hes okay. We are watching box sets. Laughing when we can and hes able to do things. Sunday he goes in for ICE. So a well man on the surface leaves to be zapped with some heavy chemo. And no visitors. I am so scared. I know how we are now cant last because the cancer will get worse. It just makes me panic. What a time. Sorry to ask. But you have been so helpful. Im a bit lost with how I feel. Feel quite helpless. BUT Ican flush a Picc line so thats something!! Xx

Hi Scaggette….. Sorry for the delay getting back to you but we have just had brunch with our granddaughter and family and she is now playing before we head out for a walk.

This is Fiona now typing…….

"Good morning Scaggatte (What does Scaggatte mean?)

First - look at you - flushing his PICC line!!! Absolutely no chance I was doing that. When the District Nurse used to come in and do Mike’s PICC I left the room - when I was at High School I would regularly faint at Biology class .and end up with the school nurse

Mike had been on his journey for 14 years before the big gun treatments were required. I went to the first few appointments with his Dermatologist in the very early days so I could understand his condition and the treatments but I never did get concerned or even go with him for treatments even although I could. We reckon he had over 900 appointments/treatments in those first 14 years!!!!

When things kicked of big style in Sep 2013 yes it was concerning as to the speed the growth above his eye was growing, it was not pleasant watching this bloody mass the size of a tennis ball grow but as a family we just don’t panic…… I think it’s in our DNA.

We always try to understand the treatments and the plan quickly. We ask searching questions and don’t get pushed around or ignored…….. then with this information we look at how best as a family we navigate the way forward. We can not control the medical side of the journey but we can control how it effected us.

We always look at the end goal, we always look for the ‘good’ in all this…….. looking at the negatives is draining and counter productive…….. and very stressful and tiring……. We just role up our sleeves up and get on with it.

Mike's Respiratory Consultant (Asbestosis) is actually a good family friend so we get great support. He will always say that a positive mindset and approach can add a good 20% to how patients and family get through treatment, it makes no difference to the actual treatment but a massive difference to the mental part of the journey.

I tend to go to the initial key appointments with him to get the picture and ask key questions that Mike may miss as his hearing is not great as some of the drugs he has had killed a lot of his hearing.

When he had his Radiotherapy on the mass on his face he just drove to the hospital himself but we only stay 10mins away from the hospital. We always thought why do I need to sit in a clinical eating room seeing other ill people. Deal with your own journey and don’t be influenced by other peoples journeys.

In late Dec 2013 when it came to the strong chemo he was in hospital 5 days/nights so I would just drop him at the hospital door with his bag, he would go to the clinic and have the long wait until his bloods were back and his treatment was approved and he just went up to the ward and got on with it.

Yes I could visit back then but only went once in the evening as I was working during the day. But sometimes he would not know I had been in as he was on some strong antihistamines as he had some allergies to some of the meds so slept a lot.

The Stem Cell Transplants were rather the same…… even although I had a room next to the ward and could visit at any time there were lots of times he was just sleeping so I just got the train into Glasgow with the credit card 

So to your question "Is it normal to be terrified before your partner goes into hospital"......... you would not be human if you were not anxious......... but I never was terrified. As I said our DNA has a lot to do with how we get through stuff.

We were born and brought in two small fishing communities where dad's, brothers, relatives went to sea the back of Sunday.

Back then it was a regular occurrence for boats to be lost with all hands. So uncertainty was part of life but there was a thread of determination running through the community as to what ever happens, happens for a reason and in some way we are passengers on the journey controlled by a high power. So we were brought up in a Christian environment and think that most likely has a bearing on our DNA as well.

I will get Mike to put up the story of his grandfather and what he came through and I think that this is where his determination and perseverance comes from.

Always happy to answer questions and help as best as I can"

The optical has spoken and the link to my grandads story is at the bottom of this post.

Have a great weekend and keep your eyes on the greater good in all this ((hugs))

Survival is in my family DNA

Thank you so much. Now Scaggette is a nickname that husbands brother gave to me years ago. I worked for his brother in a pub and met hubby there!

Such inspiring words. Im one of those people that as a child I was left feeling very vulnerable. Lonely. Not loved etc. violence sometimes and I have grown to never ever want any of my family feeling this way. I end up storing emotions and then blurt them out at a quiet moment alone!! Because I feel I need to be the strong one. But I have learned to possibly reach out to a few Angels we have out there “you guys” and its really helped. 
I just am bowled over by your story and your time you take to help everyone. 

our goal. 

Scottish 500. We want an RV. And just lose ourselves. So thats what we will concentrate on. The cancer is a rather large hill we will get over first. 

Thank you for your words. Being just me and him and not much family (no mum. Left her at 18 as she was an interesting person to say the least.) my dad escaped to the other aide of the world to get away from her leaving me behind!)

Im used to being alone with just my bloke. So Im a bit panicky about my soulmate. 

Onwards and I am going to look up that story of your Grandad!  

much hugs sent your way xxx

So we had a long walk up through the Forest to Culloden Battlefield - it was a lovely clear day and the photo below is looking North across the Black Isle with the many mountains in the background and Inverness just below the hill in the foreground and the Kessock Bridge across the Beauly Firth - the start or finish of the NC 500. We live just down the hill on the right.

We have done the NC 500 a few times taking in Skye the first time (a must) then Orkney the last time (a must).

It is an amazing beautiful journey and a worthy goal to keep your eyes fixed on.

Our aim was to go to Madeira and we achieved it 3 years after my SCT.

I do like a quote….. and this one encapsulates the cancer journey, well our one at least.

Some journeys take us far from home. Some adventures lead us to our destiny - C.S.Lewis - The Lion, the Witch and the Wardrobe.

((hugs))

Beautiful! Apologies for the late reply. He has completed ICE number 1. Coped very well. Came out last Thursday. Actually said He was going to miss the food!!! Husband is very fatigued and all the usual toilet and tummy challenges. We know the drill. He coped well. Mentally lately though he is struggling to have a goal. To see the point. So I will make aure he sees your picture and I reassure him of whats waiting for him after this journey. A goal. Thank you so much for yours and your wifes help. Think I would be lost!!! ICE 2 is 7th Feb. Lets hope its done the trick. Its an odd one but the situation has oddly helped a little bit preparing for SCT. Because hes getting to know the ward again. The rooms etc and being away from home. (4 days in with ICE). Thanks again and onwards xxx

Sorry for not getting back sooner but been helping Fiona set up her computer system in her new office.

Good that the first ICE went ok...... we sort of sit around looking for things to happen but it's great when it doesn't...... but some folks are disappointed!!!!!.... as it's less for them to think about or "is it not working as I did not have side effects"......

'Seeing the point' is a big hurdle...... Fiona and my two girls went on the positivity offensive leading up to and during my two SCTs.

Regular updated pictures of our first granddaughter, scan pictures of our second granddaughter who was born a few months after my first SCT........ Then more scan pictures of our third granddaughter who was born just before my second SCT........ 

Over my main treatment I had about 58 days in total in the SCT unit and 30 days in the ward for my chemo so you do get to know staff well.....it helps a lot.

Always around to chat ((hugs))