Getting the op

Im So happy to hear your husband is doing well after 12 years, this news has helped a very stressful day! My husband is getting ready to start pre surgery chemo, and we hope to have surgery in January then another round of chemo. Can I ask if chemo helped your husband to start eating again? At the moment sean can’t eat anything except ice cream & cheese cake xx

Hello, you can ask me anything, if I can help I will.  Yes, the chemo did help my husband, he was very determined with his eating and sometimes most of the day was taken up with meals. A normal sized bowl of chopped spaghetti with a tomato and garlic sauce (no meat) would have to be reheated at least twice because of the time it took to eat.  Gradually this improved and he could eat more solid food but we kept going with calorie laden smoothies and juicing as well. 

This is a very difficult time for you both, waiting for treatment to start and wondering what lies ahead, I found that once chemo started (despite the awful prognosis my husband had) I felt more positive because something was being done to help him.  I’m sure you are going through the emotional wringer and you are wearing yourself out trying to make each day a little easier for Sean.  Hopefully chemo will start very soon and it works well and then it will be time for the op.

Take care and don’t worry about flagging my post, it’s not a problem at all!

J x

Thank you! I went to click like & flagged by mistake! Chunky thumbs!!!!! We are at the stage of wanting chemo so badly not only to shrink the tumour but so he can eat! It’s so painful to watch him try to eat something so simple, I think the seeing him struggle to eat is effecting the kids more than the cancer itself as they are young & base how their daddy is on what they see…. Have you any other advice for any part of this journey? I’d appreciate any words of wisdom Re foods, chemo or surgery…. Xxx

The post is back so all sorted!  It must be extra difficult with little ones, my only advice (not knowing how old they are) would be to perhaps explain that their daddy will get a bit worse before he gets better and that the doctors are going to start helping him to get better soon.

Just try to keep his weight up if you can, I used to make smoothies with full fat milk, double cream, ice cream and strawberries or raspberries.  A bit of regular exercise will help build his strength for the operation, even if it’s walking around the garden it all adds up.

My husband had ECX chemo and coped well, it was 7 hours every 3 weeks and then tablets in between.  He never felt really unwell after chemo but a few days later he would feel really lethargic and just want to lie on the sofa most of the day. Everyone reacts differently so see how Sean gets on and you can always ask more questions.

Surgery is a bit further down the line so I will be here when you need more answers.  Please remember you are a huge part of Team Sean (we had one too for my husband!!) so you must take care of yourself and try to steal a bit of time to just think about your needs. I hope you have good support, no doubt you’ll need it from time to time.

J x

How are you two getting on? I hope it’s not too long a wait.  J x

Thank you, my kids are 10.13.15 so I try to explain as much as I can in the most positive way. We are using the ensure smoothies & also making our own  with full fat everything & dollops of peanut butter! This past two weeks he’s loosing weight though, and this past few days even after drinking water he’s gagging & feels like he needs to be sick. Seans having FLOT chemo, it’s an 8wk cycle, in hospital 2 days every fortnight & then the daily injections which he’s not looking forward too. He has a massive fear of hospitals, can’t listen to anything being explained & practically faints at the thought of bloods being taken! I used to joke he was as much use as a chocolate poker during my labours! We have an amazing UGI who understands his fears & speaks up during all our appointments when the team starts getting too deep with all medical talk! They then explain everything to me so I at least know what’s happening. Feel like I’m on a crash course medical degree. I really appreciate you taking the time to answer my questions, it means a lot especially as you’ve been in my shoes xxx

We are good, we never really argue anyway but I think with all his fears etc sean definitely appreciates me more lol !! It’s like having another child trying to explain what’s happening next & why he needs to do this & that but we are & have always been a strong team & best friends as well as partners so that’s helping. It’s just heartbreaking watching him decline but I’m staying strong for him & the kids! I do get in my car & just drive screaming my head off every so often, then come back home & be positive again!! Xxx

I suppose in some ways it’s good that they’re old enough to understand what’s happening but that means they could also be frightened because so much information is easily accessed. You sound as though you’re doing brilliantly with the calorie intake, my husband is diabetic but when I asked about his diet I was told quite bluntly (but kindly!) not to worry about that, just concentrate on getting calories down, regardless of their sugar content so I ploughed on.

FLOT sounds very different, poor Sean with his fear of almost anything medical, hopefully once treatment is under way it will all become easier to bear. 

We had a very big dog when my husband was diagnosed and I used to take her out to the fields and then just sob into her fur, she seemed to know I needed the comfort and she would just stand and wait until I stopped - then she would give me a sweet look and run off!  I’m glad you have your screaming time, it does help to release that valve a bit!

J x

Yes it has its advantages but also disadvantages- last year Lexi (10) had a friend who’s daddy died of cancer last year and that’s her only other experience of cancer. My eldest Jojo her friend battled cancer for 8 years & she’s finally in remission, so ying & yang. You always read about eating clean to heal your body so it’s weird to be told to drink full fat milk, cheese cakes etc… but you have to trust the experts! Yes FLOT sounds harsh, but we have to keep thinking of the end game! I’m dreading having to explain to Sean about the surgery & aftermath of the surgery… taking one step at a time. Getting him through this stage of chemo, then will deal with that when he’s recovering xxx

Hi

I just wanted to add, that we have done the full fat  everything, (prefer this to the alternative!}

Weight has been gained and continues treatment has been given to my husband.

I hope the same can be given to yours x

Lowe'