Unbelievable amounts of phlegm and mucus (sorry)

Hi Sharpie,

The wise tribe elders have spoken but I'll add my thoughts as well, as I'm right in the middle of this atm.

As you see from my monicker, I'm the carer of a very stubborn and frightened husband going through back of tongue / lymph node cancer treatment. We finish tomorrow and it's been hard. You're not crazy, this is probably one of the hardest things you and your husband will ever go through - firstly coming to terms with the diagnosis and second, dealing with the treatment and thirdly your guilt. 

I was made redundant a year ago - from a demanding top notch job :-) :-)  I was happily sorting out my Mum's estate and planning retirement when this all kicked off. The point of saying this is that we (I) have a 40 mile round trip drive each day to the hospital and I have been there 24/7 for my husband. He didn't want to involve anyone else so even though his brother had been a professional carer in the past, he only wanted me.  

The treatment is brutal, I'm not going to lie and I'm not sure how we would have coped if I was working full time, so I would do everything you possibly can to get support. As an Events Organiser I'm sure that you are brilliant at organising, planning, delegating and generally juggling many balls, so I would urge you to take control of this. I've had to over-ride my husband's decisions a few times (gently of course), but you need to be in charge ultimately because there will come a point where he's so knackered and brain-addled by treatment that he will forget to take meds, get to appointments etc.

We have an agreement that I will step in if I notice he's not coping and he will ask me if he thinks he needs help and that seems to work. 

Hope this is helpful, good luck.

Pipx

Hi

Can totally empathise with you Sharpie. My husband had base of tongue/tonsil/lymph node cancer last year. He also didn't want to know anything at all, whereas I did.  He just wanted to get it done. We had a 100 mile round trip every day and it was during these times that we managed to talk properly.   I also felt a bit resentful at first that our lovely life had been hijacked, and I  hated myself for it, but it didn't last long.  Don't beat yourself up about things you might have said, I'm sure it hasn't even crossed his mind.  He is going to need a lot of support, and so are you.  Look after yourself too.  It will soon pass and is well worth the journey. 

B

Hi Pip -

Your post was gratefully received. I am conscious of the timing - absolutely. Luckily our hospital trip is minimal - we live in a village near Cheltenham where he is receiving treatment. He pressed for early morning slots and most are at 8am so I can drop him off and take him back home, settle him in and then head to work later. I have explained in full to my team and my MD about needing to play things by ear. Good news is I started this new role in November so have been clocking up plenty of extra hours in this down time ready to draw on if I need to start later or leave earlier. Some of the time I can work from home too. I will likely get more productive planning done then anyway. I have been avidly reading others experiences so I can plan the likely times that he might need me. I have arranged for neighbours to pop over and check he has been eating and drinking enough when he starts to struggle. My parents are also on standby. He seems to think this is totally unnecessary but judging by how he has been with the tonsillectomy I think he might be in for a surprise at how brutal the effects can be. He is tough admittedly but the described journey seems so relentless. We are going to get through it though and I am so very glad to know we are not alone. 

Hope your husband can take advantage of not needing to travel now and can just concentrate on regaining his strength. Keep me posted about how he (and you) get on. 

Best wishes and thank you again for honestly sharing.

Kate  x

Hi B

The more you lovely people write and reassure me that my stubborn husband is behaving much like other husbands - the less anxious I become. I honestly thought stage 3 tonsil cancer with base tongue was such an odd cancer at first. The lump on his neck appeared seemingly out of nowhere. However he was sporting a beard over Christmas and January. Glad to know others have been before, bought the t-shirt and are on the plane home!

I am slowly drip feeding him little bits of information - mostly positive and generally helpful and he is receiving that well. Now he has a treatment plan he seems more open to fact gathering. 

We were very pleased to hear he did not need to have any teeth removed so they can start straight away. I am trying to fatten him up at the moment. He seems rather pleased he can fit into really old rugby shirts he has found from when he was about 30. I have to remind him this fight has no place for vanity and to eat more chips and butter. It's such an about face from our usual conversations where I would bemoan how much he would pile on his plate. You have to laugh or you'd go mad! 

Anyway. Back to making plans for how we can enjoy sometime away together once his treatment is well behind him. Something that will avoid food and wine focus which was our usual go to. I'm thinking safari! 

Onwards and upwards!

Hi Kate

this is Hazel aka RadioactiveRaz I was T2N2NM had 35 radiotherapy sessions and same chemo 2 big doses day 1 and day 22. 

1 don’t blame yourself you didn’t force the cigarette s and red wine on him. The treatment is brutal but I did it , I do think it’s has hard for our other half’s so like others have already said you will need to get your head in gear as well , if yiu have a Macmillan nurse they can help .

As for going away m in diagnos day I booked flights for me and hubby to fly to our apartment in Spain 8 weeks after treatment finished . we made it , itbwas  the hardest thing I had done. I could have cancelled right up to boarding the aircraft and we argued before daily and we don’t argue but I was leaving my bubble that I had build around me .But honestly for me it was a huge turning point in my road to recovery but yiu have to Ben prepared he won’t be going out eating i took 3  weeks of shakes so extra suitcase plus copious medicines so be aware he won’t be the soul of the party or highly unlikely he will be lBut sitting in the shade with maybe a good book could help him.Temember highly unlikely yiu will get insurance for him as we won’t have his results back .But as an incentive I would say yes.

I have a blog detail-my experiences see below

good luck we are a friendly lot whive been there and done it as they say.

Hazel xx

RadioactiveRaz

Hi both

Ill message when I have more time. Getting wrong off hubby for staying up too late!!

Hope you are both well?

We’ve both seen consultants this week so lots to say. I’ll write a fuller message tomorrow.

we asked about going to Zante on 1 May (3 months after finishing treatment). They weren’t keen and said it would likely clash with scan dates but agreed we could go. I’ve seen a 5* All Inclusive R&R hotel on the beach with spa etc. Not our usual holiday but these are not usual circs!!

ive been on that Insurewith website that is recommended on this site. I declared absolutely everything. We both have/had cancer so it’s a lot to declare. Neither of us have the “all clear” yet. 
anyway £200 for a 12 month policy with a £75 excess. I think this is amazing and I will be getting it as my plan is to go away as much as possible in the next 12 months!!

Hi

I thought I'd throw in my thoughts about the holiday. 

My decision is different to yours, but I'd a, nearly 4 week holiday, booked in the USA which we'd booked 18 months before.  I got my cancer diagnosis 2 days before we were due to fly out.  My consultant was not keen on me going, but did say I was fit to travel (he had adjusted surgery dates so my neck dissection would be well healed before the date of travel, but had not expected the cancer diagnosis).  I talked to my cancer nurse and said it was my intention to travel and whilst away sort out all the future appointments so they kicked in when I returned (they did).  I asked him if I was being stupid and he said no.

It was the best decision I made as my wife and I were able to digest the diagnosis and prepare for what was to come.  You're at the other end of the journey I am on.  Go for it as long as you feel it is right for you.  Its probably just what you both need; just sit and relax or do as much as you want.

Hi Kate

I spent years telling my husband if he didnt cut down or stop drinking and smoking, I wouldn't be sat with him having dialysis (as I work in a hospital and see the poor souls queuing up, awaiting their turn).  He just shrugged and carried on.

In November 2019 he was diagnosed with oral cancer (stage 2) and underwent a 14 hour op in January and has just finished 6 weeks of daily radiotherapy and 2 chemo.

Fortunately due to my work's sickness policy, I was able to be with him every step of the way.  We threaten our partners because we can see the damage being caused and fear for the future.  But when it comes to it, we would move heaven and earth to make them better.

My husband had white coat syndrome and had to be admitted 5 days early for a detox.  Every step has been hell for him due to his phobia. He was a "difficult" man before his diagnosis so understand your pain.  Sometimes tough love was required when all I wanted to do was cry and hug him.   

But he has done it!

For me watching on, it has been tough (and I'm a strong woman, so I have been told).

I spent over 100 hours visiting during his operation hospital stay - having one way conversations as he had a trachy and was unable to speak.  Trying to lift his spirits was difficult.

We then had a two week rest and he was starting to feel a bit better and had started eating soup (was and still is using a RIG).  However the radiotherapy and chemo have been gruelling and he was hospitalized twice, both times a week after the chemo, so watch out for that.  Dehydration and plummeting temp.  Buy a thermometer!

He finished all his treatment two days ago.  He has burns on his neck and inside his mouth.  Keeping on top of his painkillers is key.

I did all his meds, I made a spreadsheet and put reminders on my phone - breaking bad really is a full time job!  I've seen and wiped things I never thought I would be able to, but you do it for love.

Its hell when you're in the eye of the storm but despite everything and the pain he is currently in, we've reached the peak and can now concentrate on recovery.  

Sorry you are both going through it; from our experience each stage lasts a lifetime but looking back, it's only been 4 months and has gone really quickly.

Good luck to you both xx