Week6

Well it's here, we finally crossed off day 30 of RT,  left the department carrying 1 lilac mask.  1 very fatigued husband, sore neck and his current best friend is morphine. 

This day we walked bravely towards,  with a whole bag of varied emotions and differing daily experiences behind us. We've laughed we've cried, been positive and at tines miserable... but yesterday we walked out of the cancer unit at Preston Royal so grateful to the incredible RT staff who went beyond to help ensure hubby had everything he needed.  No bell ringing for us just a desired quiet exit with several cups full of relief and a slice of emotion.    

We are ready for the recovery, the expected decline as I'm sure the body will relax and let go of all the recent effort required to get showered dressed and travelling to and from Preston everyday.  Sleep sleep sleep. Meds meds meds. 

This 6th week has been THE week side effects kicked in  and I know for so many this happens alot sooner so we do see this as fortunate.  Also adding to this the lane that we access civilisation has been closed for 3 days.  So I had to park our car at a neighbouring farm which normally is a 10 minute walk. With a patient in his 6th week of RT it was a slow wobbly 20 mins.  I honestly don't know how he did it every step seems such a battle.  Thankfully app were midday so we had the morning to prepare.. anyway we did it so here we are, +1  many more to go.

Hubby's condition has definitely deteriorated in this last week.  His skin until now has been really good but gradually it has started to break down. With some dry peeling amd a couple of scabs.   We religiously put aloe vera and the Epimax on 3x a day if not more some days. The RT  department has issued some Activheal Hydrogel to apply regularly.  

Fatigue has been the key factor over the last few days even to the extent helping with putting socks on and delivering pain killers. We know this is temporary but still difficult for my husband.  Seemingly making him more miserable (understandably.)

Constipation has been an issue for hubby throughout as we knew it would be. It's something he has struggled with all his life. Laxido and various meds have just about kept the bowels moving but no where near normal. The recent addition of Morphine will obviously not be helping. 

So today it's a stay in bed day as we have had many already and there will be many more ahead. 

It's a roller coaster of a journey on which we are nowhere near the end.. appointments with nursing team next week and oncologist week after.  We know after this there will be a lull of 6-8 weeks while healing takes place..  Then of course the post treatment scans few months down the track to see if the job has been successful. 

We are still learning to 'live' with cancer and in the early few weeks it was all consuming.  The treatment is very demanding and therefore there is no choice but to halt your life and just focus on each day as it comes. 

I think the hardest thing for my hubby initially was the pitty he just could not face it,  so we told only a few people and then only gave minimum info. Our 5 daughters and a few set of closest friends.   Also during treatment we decided to protect hubby as we didn't want any infection to develop which could hinder the weekly chemo sessions. So not seeing anyone or going anywhere has been a disappointing side of this treatment. But that was our choice the hospital just said be careful.  In all fairness hubby just hasn't wanted to see anyone,  which is understandable.   The first few weeks we made an effort to go to the local seaside towns for a walk and a coffee after treatment.  But probably since week 3 he has just wanted to come home.   I have been out for coffees and seen my elderly parents when I can so I have had a bit of an outlet. Which for carers it is important even though you may not want to leave your suffering beloved.  I eat when he is asleep purely in an attempt to hide food from him really. 

He does struggle with all the fluid,  in the protein liquid meals and additional liquid to keep him hydrated.  His stomack is constantly churning. Nausea has crept in here too this week. (Anti sickness meds are now being taken again) 

Anyway we are here,  end of one chapter now turning the page of the next one 'recovery' we understand this one will be the long one.. 

We probably will not have as much to tell over the next few weeks but I will endeavour to keep updating as his recovery progresses. I know reading about others helped us enormously as you work through the minefield of information. I know reading both Hazel and Dani's blog helped as they wrote about their day to day experiences.  So if it helps just 1 other person facing this mountain then its worth the effort... I still read through most posts it always good to learn from others. You never know what may help you get through that next physical or mental hurdle. 

Within this forum there are amazing people who are there to offer their experiences and help to guide you, so ask.  The info on this site is fantastic of which we cannot express how thankful we are for this facility. 

As I've said before a whole different world we know very little about until we reluctantly have to become apart of. 

I've tried to express to my friends cancer isn't the big killer it once was and the these days treatment is fantastic. The ability to cure and prolong life is developing constantly. Again something you don't look into, who would want to. 

We have just  concentrated on today and not worried about tomorrow..  made ourselves aware of what is coming but not focused on the long journey just on this day...

I am probably the world's greatest waffler but intentions are to be of some use even in our most challenging times.  

As we walked out of the department yesterday I saw the chairs in the front waiting room on which we sat some 9 weeks ago when hubster came for his mask fitting.  I can vividly remember sitting there thinking I don't want to be here and I don't want my hubby to have to go through this.. well he has walked the walk and come out the other end.. the teams are so helpful so genuinely interested in you and you do get the opportunities to meet those going through similar times, so it soon becomes  in a strange kind of way for a short period of time your 2nd home.

So we wish everyone lots of love and may you find strength here amongst people who care how your journey goes. Xx 

Gail x