Hitting the 5 week wall

Hi Sandy. I can tell you I felt pretty poorly for a month after treatment end and I had only six weeks. I slept a lot and food went via pump overnight. It’s just a case of plodding on. I did need looking after. I think it might be prudent to take another three weeks off. 

I finished chemoradiotherapy for tonsil and neck cancer over 2 years ago, and yes the final 3 weeks are tough.

When CRT treatment finishes the radiotherapy is still doing its work, 2 weeks after most of us are in a dark place but things do slowly get better, low mood for patients is pretty normal so keep on top of the pain meds, no need to suffer in silence.

Carers are vital to patient recovery so try to make sure you give yourself some respite time...you deserve it.

As for work? I am retired so is my Wife but it really is a judgement call only you can make, employers are usually very sympathetic to carers who require time off.

Hello Sandy, I can only tell you about our story. My husband had 6wks RT and 2 circles of CT. From week 3 side effects seem to arrive all at the same time and it became heartbreaking to watch him having to go through all this. Not able to help was the hardest part. All I could do was be there and support him as much as I could.After treatment side effects seemed to peak and it took about 6 wks for them to slow down. Sometimes it felt like we took two steps forward and one back. That's when my husband felt more down wanting to give up, I had to be strong enough for the both of us. As to going back to work, I couldn't go back to work for about 6wks, only part time, when he got a bit stronger and we were both happy for him to be alone for longer, I increased my hours. I guess this is something you both need to decide on. All I can say is, don't rush into anything,prepare for some setbacks, persevere and you will get there. All my best wishes. Fellow wife Mel x

Hi Sandy, the last few weeks are not pleasant.. Sickness was a tough gig.. 

I was admitted to hospital at the start of my final 2 weeks, as I also 'hit a wall'.. when I was released I was still suffering from terrible sickness, just spent most of the time laying down, as I didn't have the energy to do anything else.. If you can, take time off work, as it maybe a tough time for your husband, too.. and seeing your husband in such a state might not have a positive effect on your state of mind, especially if you're  working in a stressful environment..

but, everyone is different, so just be prepared.. things may not turn out to be as bad as you think. 

Hi Sandy, as others have said, your husband is probably just starting to peak at the hardest part of this journey, or it was for me. I had 6 weeks of RT with weekly Chemo for the same condition, which finished on 31st Jan 25.

February was then the worst month I've ever had to endure. Unable to eat or drink and only able to take in calories via my PEG feeding tube. 3 x fortisips in the morning and 3 x in the evening (2,400 calories a day) and just slept or rested in bed for around 4 weeks. Oh yes, and moisturised my neck night and day, used vasaline to keep my lips from cracking and concentrated religiously on my oral hygiene

.I also relied heavily on soluable paracetamol, which I also took via my feeding tube.

This meant that other than mental support and helping with bedding changes, there was little my wife could do for me during that time, but after about 4 weeks when I could finally start eat simple foods like soups etc, that's when I needed that help preparing nutritious but simple meals.

It's hard to get any continuous sleep as your salivary glands are all over tye place, either working overtime making you constantly spit into a sick tray (i picked up lots from the RT team looking after me) or not working at all.

Expect severe tiredness and make him rest as much as possible. Mental support is everything and make every positive you come up with a big thing to be proud of achieving. Despite feeling awful, I really enjoyed it when I could tell family members "I just managed a banana smoothy",  "I just ate my first custard pot in a month", "I just ate a cheese omelette for breakfast" or " i managed breakfast and lunch today". Things that simple will become real positives and should be treated as such. 

I wish you both well as you continue on this journey of highs and Lows and do stay in touch during, as there are many here that have been there and done that and are now well and willing to guide others through this.

MickyC

Thank you so much. I will keep everyone posted. 

I hope you’re feeling stronger now x

It is tough.  I ate until the day I finished treatment then went onto PEG feeding for a few weeks.  As I finished treatment my wife's mother was taken ill and dying.  I told my wife to spend as much time with her mother as possible - which she did.  I mainly looked after myself for a month or so. It was tough but I managed it.  Basically all I did was PEG feed & hydrate, take pain killers and slept the rest of the time.

It should be possible for you to go back to work especially if they can be flexible when you need to support him.  Things may not be so easy for your husband so you may need to change your plans as he progresses into recovery.  As you are probably aware recovery is a marathon with many backward steps on that journey. 

Hi again Sandy and thanks for the well wishes.

Even though as I mentioned Feb was pretty rough for me, recovery was gradual, but real, during March, so much so that I was able to go back to part time work (3 days a week) starting in early April.

Diet was still limited at this time, but I was determined to get some sort of normality back into my life. 

On a work day in April i would start the day with Quakers protien porrige with a sliced up banana sweetened with runny honey, followed by a Fortisip mixed with full fat milk, makng a pint.

I would take two Fortisips to work as lunch (couldn't attempt eating in front of non- family people).

Then when home I would have a main meal of pasta, or fish pie or shepherd's pie (shop bought ready meal) or similar and then as much pudding as I could manage.

Today I'm still pretty much on the porridge and bananas for breakfast on a work day, and sausage, eggs and beans on fried bread (easier than toast in my opinion) or an omelette on a non work day when I can eat more leisurely and have a cup of tea to help it go down.

Hopefully this pattern of recovery might be similar for your husband. And hopefully this demonstrates that it does get better with many highs along the way as you slowly start to eat with less pain and begin to enjoy food all over again.

MickyC

MickyC1cb486 said:

Today I'm still pretty much on the porridge and bananas for breakfast on a work day

Yes!!!

MickyC1cb486 said:

sausage, eggs and beans on fried bread

Groan!!!! I wish....For three years after treatment I could eat anything and not put on weight. I didn't lose that much, maybe half a stone but my body shape changed....tight jeans and all that......It's crept up a bit and I can eat that only in my dreams.