Hi Vatch, really appreciate you response. I have been trying to compartmentalise each stage of my treatment and tomorrow is my last radiotherapy. I will then read your blog properly and hope you won't mind when I come back with lots of questions. Best wishes. John

Hi Louise, your husband has certainly gone through the mill - how is he now? 

I am still feeling a complete fraud, but very conscious that everything can change in the blink of an eyelid. I nearly came a cropper when I over did things on Tuesday. Went shopping and had a very unexpected light headed moment - thought I was going to pass out. Water, good earbending from my wife and twelve hours sleep seemed to sort me out. Still having no pain worth talking about - although yawning s uncomfortable. Have been on liquids for a week, but managed porridge yesterday. 

Don't know why, but had not thought of milkshakes - thanks for the heads up.

Will be back in touch to pick your brain.

Best wishes.

John

Hi John,

Wow! Glad you didn't actually pass out! I am afraid I don't have good news about my John. He has been a kidney and pancreas transplant patient for 18 years, and it is the immunosupression to not reject the kidney and pancreas that helped his cancer grow so aggressively. He had a lymph node on his neck biopsied in January which came back positive for SCC. We were thinking he would have to do radiation, but the PET scan showed he actually has six tumors spread all over the place now. THey are in the process of getting him off his transplant meds so his immune system can fight the cancer. Unfortunately, that takes a few months time. Once he is off completely, they are going to give him a chemo that does not have many side effects but is helpful for his cancer. If a particular tumor becomes symptomatic, they may radiate it if possible. None of it is a cure - just buying him a little time. His brother-in-law who is not immunesuppressed had SCC on his ear, and he lost his entire ear and part of his jaw. He has been cancer free for over five years now, so don't let our bad news get you down.

Keep up the fight,

Louise

John

us blokes sometimes don’t do weak and feeble very well, unless we have a cold, but when it comes to something as severe as the treatment you’ve been through, we tend to try and be superman, but the treatment you have just been through will knock you for 10

there is a lot in my blog about what to do after treatment...it’s a slow progress to recovery ... it’s just something you will have to get used to.

when going through treatment you get used to seeing the radio therapy team, nurses and chemo team on a regular basis, then treatment ends and for the first couple of week you are on your own. People warned me that this Two week period after treatment was a difficult one, so make sure you look after yourself and get looked after.

i ended up in hospital for a few days as I was just run down and exhausted and spent two days on a drip to try and get fluids and food back in me

try not to be superman at this time, your body is trying to recover from a lot of trauma  and even the normal daily stuff becomes hard to do. Sleep as much as you can and make sure you get those fortified drinks in you ..... now is the time for repair, only once that has been done successfully can you begin to recover

ask whatever you want, no question is too silly or meanial

keep us up to date and all the best

vatch

Hi Louise,

You and your husband have really been through it and you clearly are up for the continuing battle. I just hope I can display the same fortitude when the going gets tougher - as seems extremely possible. The news regarding your brother in law is clearly better and I hope you and your husband can take some comfort that better news is possible.

Please keep me posted.

John

Hi Vatch,

Had last radiotherapy today and finally read, twice, your blog. A measured and invaluable account of how to approach this disease that is trying to blight our lives.

I have taken on board a number of your points. The one that struck home particularly was about overdoing things, of which I am guilty. It barely seems five minutes since I was told I had cancer and in all honesty, given the easy ride I have had so far, the gravity of the situation has probably not fully sunk in. After treatment today, I drove 40 miles and back, to buy a car. Needless to say, I did not feel so clever once I got back home. Fortunately, I am able to drink the fortijuice without problem, but I am only just starting to feel ' better ' after six hours in bed - it is now 2100. My wife is an antiques dealer and I was planning to help her at fairs this weekend, but have just told her that she is on her own this weekend - I am putting my feet up.

As I have mentioned, I had been breaking everything down into bite sized chunks and not looking forward for fear of losing focus on what was happening on an hourly/daily basis. Therefore your observation about the two weeks after treatment, stopped me in my tracks. How could I miss something so important. You are absolutely correct. The daily contact with skilled staff in surroundings where you know any issue can be dealt with on the spot, has stopped. Yes, of course there are weekly consultant meetings and people at the end of the phone, but your reality check has made me realise that my comfort teddy has been taken away and I need to take more care. 

You have no doubt given me a much needed reality check. Thank you.

Fortunately I usually have no problem sleeping - although there have been a few 2.00 am jigsaw breaks. 

I will continue to log my progress, in the hope that like your blog, others might find experiences within that they can use to help them get through difficult times.

Once again, thanks.

John

John

thankyou for you kind words about my blog and if it’s of any help to you at all, then it’s doing the job it was indirectly set up for.

one good thing is that your treatment is now over ... and my god if you are still driving you must be superman .... be careful not to play superman lol the time though have a break now and then .... you have deserved it

let us now how your recovery improves and how’s your sensation of taste, has it been effected at all.

vatch

Hi Vatch, reality caught up with me today. Got up to shower, in readiness for trip to consultant. Had felt second hand on Sunday, but became very light headed and slumped over in the shower. Had to take taxi to hospital. Turns out I had misunderstood how much liquid I needed to take on board. As I'm not eating anything solid, I need to poke down 7-8 fortijuices daily, not 3-4, as well as twice the water I had been taking on board. Doing so now, but will try solids tomorrow - fortijuice is disgusting, even with zero taste buds. 

Being more careful!

John

John

I remeber it well and a few days after i had finished my treatment I was down to one a day and felt comfortable and happy doing so. It's funny that once you actually get used to not eating food how easy it it  ... to just not eat at all. Obviously my body was having non of this, and I was admitted to hospital and put on a drip for two days.

It happens, but the scary thing for me is that it happened so easily, even though my wife was constantly on at me to take in more ... did i listen? ... of course not

Your taste buds will start to come back, but its slow and get used to the fact, that what you loved to eat before. may no longer be the case.

I love cheese and pickled onion sandwiches and chocolate prior to my treatment, but post treatment ... I can't really do bread, it just saps all the moisture in my mouth (if i do have a sandwich it has to be accompanied with liquid to get it down) ... so I have switched to wraps now ... a lot easier.

Cheese also just glues my mouth together ... I can eat it, but need liquid

Pickled onions are just too tart foe me and a no go, but i have now found gherkins ... a brilliant moisture content and not too tart for me

So I a have lost my enjoyment of my cheese and picked sandwich, but i can have a wrap with ghekins and lots of other moist filling and i included grated cheese

as for chocolate, I have just lost the taste for it ... in the first few weeks the sugar content of some food just sent electric shocks through my teeth, now its not so bad but i just cant taste chocolate

as for my taste in general, its changed, I cant do anything too acidic, spicey hot or to citric, but i do have a lot of taste back. Its funny though as i am now into the fore flagrent. amd milky indian dishes, but i cannot do Korma ... it tastes like soggy cardboard

You taste will come back, but i would say it will be a good 6 months before you have a large degree of it back ... but its different for everyone ... its amazing when it comes back though .... As yu have seen in my blog, eating it such a social experience, not being able to taste anything is horribel .. i know ive been there.

also just be ware that yu will now be the last one to finish your dinner ...ALWAYS .... eating and getting food down just takes a bit longer. I just except it and get on with things ... its just another adjustment i have to make

take it easy ...REALLY , rest and get those horrible drinks inside you ... you need to keep the weight on 

Oh by the way I put on a stone pre treatment as i knew i was going to lose weight, but i lost just over 3.5 stone to which the majority of that was in the last weeks of treatment and initial two weeks post treatment

SO LOOK AFTER YOURSELF AND MAKE SURE YOU ARE LOOKED AFTER

Shout whenever you want

vatch