Newbie from a partner

Hi Hun

Sorry you find yourself here, but welcome to the forum.

I too had tonsil cancer, with spread to the lymph node, and the point your husband is at, well that was my lowest point as you dont have direct support daily anymore from the radiologists

I too was told the result would be hospitalisation unless i increased my intake - and while i didnt lie to the dietitians i used to wear my doc martins boots and a super thick jumper for weigh ins!

I am not sure what to suggest, other than continuing to be supportive, and can i ask is he taking pain relief by rote rather than as a reaction to pain?.

At your husbands stage i was on morphine every four hours, and i had a fentanyl patch. I took it religiously. I moved off codeine as i found it hard to drink the water containing the codeine.

I would definitely see if your husbands pain relief needs reviewing, also is he trying difflam when taking his ensure? it does help a bit.

The good news is things do slowly get better, by 6 weeks i was noticing big improvements, and by 12 weeks i was eating chinese takeaways again

Trev

Hi Trev, he's taking co-codamol as prescribed think it's 2-3 times per day - makes him constipated and then he has to have the sachets for that also...arghhh (I let him manage his own meds otherwise he snaps at me). He has difflam spray which he says doesn't help so doesn't use. Maybe next call I'll get him to ask consultant if he can have stronger pain relief.  It is all consuming for him and every conversation revolves around cancer/symptoms etc. It's not about me, although I will admit I pop out for a loaf of bread (where else can you go in lockdown..lol) I'm gone for an hour for some respite as we also have a son at home who has mental health issues (medicated) and I see his head jolt if hubby snaps at me. I've moaned since hubby bought a playstation years ago but he's using it daily and is concentrating his mind on something else and also his vocal chords. I'll persist with the shakes and hydrating him. Lovely to read your eating!

Good evening Hun, try not to pressure him to much as it sometimes has the opposite effect, i never liked people fussing around me but accepted help when needed. I would strongly recommend getting a better pain killer either Oramorph or sure-tec  in liquid form , it will be much easier to swallow. Its a shame he was not offered a feeding tube as it would have made life a little bit easier . I think getting on top of the pain will make him feel and act better , i know it did for me ,Wishing you both all the best for his recovery, take care . 

                                                                       Chris x

Glad I joined forum. Recovery timescales are longer than consultant said from the posts on here so I'm aware now (consultant said 6 weeks recovery?). 

Hi Chris, he was offered a tube prior to RT but he flatly refused and also again in the last week of treatment but increased his shake intake to avoid it. He is notoriously stubborn. Agreed though on meds, I'll suggest he ask consultant. Thank you.

Ok Hun , im sorry he refused the feeding tube , i cannot say much more on that subject. I never had tonsil cancer mine were in other areas of the head and neck . The radiotherapy recovery takes about 3 months but the first two weeks are normally the toughest after treatment finishes and gradually getting more comfortable as time goes on , sorry about the stubbornness , i was the complete opposite , take care i wish you well .

                                                              Chris x 

Thank you for your reply Chris. Hopefully it will subside within the following weeks and with better medication. 

Finally. Anger? My hubby said some really hurtful things to my adult daughter a couple of weeks ago (don't know where it came from he just let rip, to the point of her in tears) I read this as anger at the cancer and not at her directly.  I think that's how she read it also.

Hello Hun, Welcome to our little community of folk who understand and sympathise with everything you talk about. I am two years on and living well with only minor side effects remaining.I had a nasogastric tube placed in week three and had that for 8 weeks. It was a life saver.  By six weeks my tube was out, I was eating soft foods and feeling more human again. At 12 weeks I had turned a real corner and managed a steak. The mucous was gone at six weeks.

Most of us move on from Cocodomol to Morphine which  available as a liquid and as long acting tablets or granules. I was on morphine every four hours with paracetamol in between. On top of that I had the long acting version MST morning and night. This dulled the pain quite adequately so that I could concentrate on getting better. The essence of good pain control is to be proactive. Take the pain killers by rote regularly rather than waiting for pain to become intolerable when analgesia is pretty useless.

The better your nutrition the better you heal and I would hazard that the easier you cope with the pain. But you know that....it's your husband who is the problem. 

If your husband is taking his meds and is still in pain ask his CNS to arrange some morphine with his GP.To my mind Cocodomol twice a day is woefully inadequate and breakthrough pain will be awful and regular. Taking two laxative sachets a day will be neither here nor there to compensate. Writing out a list of his pain meds to be taken regularly and leaving him to it might work.I wish support staff would sit people down and explain this letter by letter rather than simply issuing prescriptions. It will make the world of difference. He has another two or three weeks of this before he even sees a chink of light.

Men can be so stubborn and I'm sure he has been absolutely poleaxed by this from all directions, mentally and physically and we all react differently to a condition over which we seemingly have no control. But we do and life does get better

I wish you both well.....he'll get there but it would be easier with tolerable pain which is achievable

Thank you Dani.