Dad's finished treatment but I feel more helpless than ever

Hi Acornette

Such a heartbreaking post, I'm so sorry for you all.

The loss of hair on the back of his head and the raw neck are quite normal side effects I'm afraid for radiotherapy to the head and neck, as is the loss of weight.

The next couple of weeks won't get much easier as the treatment will still be working but at least you know that there are no more sessions to come and your dad can start repairing soon.

You are there for him and you are obviously doing all you can to make him as comfortable as possible.You can help to make sure he is taking adequate pain relief and nourishment and liquid.   I hope you managed to get a contact number for specialist advice if you require it.   Don't hesitate to contact someone if you need to and it goes without saying, post on the forum.

Thinking of you.

Linda x

Hello

how you have described your Dad is just what most of us on here have been through..and although it is totally dreadful for us it must be just as bad for family not knowing what to say or do... but there will be light at the end of the darkest of tunnels...and in a few weeks things will very very gradually get better!,..I promise they will!.. I really thought I would die at my worst but I didn’t and my scans are clear and I’m getting back to my new ‘normal’... let him sleep...loads...make sure he keeps up with his feeding..I was totally PEG fed, fluids and meds too, for a long time..keep his pain relief topped up and take it all one day at a time...

you are doing fab!!...and your Dad will do too..

much Love xxx

Hi it is really the worst time there’s no use saying anything else ,I have a photo on my blog taken the last day of treatment I too looked like death but if yiu kook at me a mere 8 weeks after you can see I am on the road to recovery .i lost nearly 2 stone after treatment finished  had a 3 rd degree burn  on my neck that was weeping plus a radiation burn full length of my tongue. No one can prepare you for the next few weeks ..just keep him hydrated and make sure he is in control of painkillers bows not the time to come off them .Many off us on here havebeen there and we e come round and out the other side .My hubby said these next few weeks were the hardest for him he couldn’t do anything for me other than make sure I had water painkillers and the feeding tube was utilised .

If yiu or dad is struggling please contact your hospital ,and like others say post if forum .Yiur dad is stronger than you think ,I was 61 when I was diagnosed now 18 month later am living my life .

sending hugs 

Hazel xx

Hi Acornette, Your post is really heart rendering and it brings home how hard it is for loved ones around us who have had or are having treatment. They suffer along too having to care for a loved one at thier lowest ebb.

Now your Dad has finished his treatment and for the next two weeks he will be at his worst, the good news is after this he will slowly start recovering and feeling better bit by bit. He will have good days and not so good days, relish the good days, the bad days will pass.

All the things you have described, about your Dad are what are to be expected, after such brutal treatment, however things do and will get better in time. As for the burns on his neck, ask his team for a cream called Flamazine, it is really good, my neck looked terrible, after my wife had used the cream on me for a short while the result was remarkable, and it healed up nicely. I also lost my hair on the back of my head, which did grow back again in time, one good thing about the whole thing is I only have to shave now about once a week.

I wish your Dad, yourself, and family all the very best. Always come on to the forum for anything that worries you, someone will always offer help if they can.

Regards Ray.

Thankyou everyone I know these next two weeks aren't going to be good, im terrified he's detiorated so quickly my only job for these next two weeks is to helplessly sit and watch him suffer and I can't do anything about it. Unfortunatly I'm not strong enough to deal with this part alone and I've have asked my sister to help me, I didn't want to drag her into this, I wanted her to be as protected from this situation as much as possible, but I'm not coping well, I haven't attended university or work I'm feeling isolated and I just need someone to be there with me. 

I do have a question though and I'm not sure if it will fully portray my dad, but how we're you guys feeling at this time? Like thoughts or feelings or anything that was going through your minds that my dad might be thinking, my dad can't talk now but I still want to try and understand where he's at, even if I can't do much to physically help him I know I can try to help him mentally. 

Hi Acornette 

Everybody else has said it all really 

As for your last question I felt really terribly helpless, washed out and so so tired. My husband and I had a handwritten spreadsheet for food and analgesia. So I gave in to how I felt and took to bed for more or less the first week and slept a lot. My husband kept me fed and gave me pain killers. I gave in to that and he cared for me. Previously we would argue about me not taking what he was trying to help me with.   I didn’t bother much with tube feeding in the day but took enough calories to survive overnight by pump. 
I managed to keep my mouth clean myself and miraculously was able to use my electric toothbrush with a gentle head with OraNurse toothpaste which has no SLS or flavour. Diluted mouthwash was ok too. 
We got through it and your dad will. 
All the hugs in the world xxx

Like Dani I was completely washed out.  My days and nights seemed to revolve around taking pain relief, trying to eat/drink and sleep.  Your dad may well be the same.  Family tried to help by preparing my fortified milk shake or oral pain relief and by making sure I was as comfortable as possible.  I couldn't speak either so the days were pretty quiet other than people moving quietly around me.  I just got through the hours waiting for some signs of improvement.

I'm pleased you've enlisted your sister to help.  People can be stronger than they appear and really come to the fore in particular circumstances.  It's a lot to take on yourself.  Do also consider contacting MacMillan if you feel you need some more support.

I do know how it feels from both sides as carer and patient.  I cared for my father in law after his treatment for mouth cancer and 3 years later found myself with base of tongue cancer.   You will all get through it but do please take advantage of any help that's available.

Send you all my very best.

Linda x

Hi 

lit was onky when I was talking tomJohn my hubby  much later after treatment and recovery he told me his inner most thoughts he actually like you felt helpless there was nothing he could do for me apart from feeding tube duties   And keeping like Dani s hubby  the spreadsheet up today’s. 

As for memory I thought I was doing pretty ok , but in reality I was hanging in ,sleeping a lot more than I thought I was ,sleep is a great healer .I do remember having strange pains in my legs , my ankles swelled ,like Danni I managed to keep my mouth scrupulously clean .I was lucky as my oncologist wanted to see me once a week so I didnt totally feel isolated. did inthunk I wasn’t going to get better honestly yes I never doubted that the treatment wouldn’t work . I didn’t do much ,I love to read didn’t pick a book up for 5 month s we binge watched box sets whilst I was awake .I do remember I was up every night maybe for at least a hour every 3 hours .You have done the right thing involving your sister to share the load .

am sending much love and hugs , do you have a designated Macmillan nurse ? They are there to help both your dad and you .

Hazel xx justvremember there is light at the end of the tunnel 

Good evening Acornette, sorry that you are upset about your dad , its surprising how things can change in a few days and yes it can be a shock, all the other guys have given great replies with lovely words of encouragement during this difficult time. Just by being there for your dad must be a reassuring blessing for him knowing that he is being cared for by his loving daughter. I cannot say much more than what my colleagues have said, but trust me it will get better and you will have your lovely Dad back, you are doing a great job and you have a lot of admiration from this group. Best wishes to you all, stay strong.

                                                                                             Chris x

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Hi Acornette

Great advice above. I can fully empathise having seen my husband of 48 years go through this.  It's terrible feeling so helpless, but I am glad you have involved your sister.  Do try to make a little time for yourself too - it's so important to look after yourself as it is so mentally draining.  My husband really dealt with it pretty well, but did look awful for quite some time,  BUT he is alive and at the moment in the clear.  Your Dad is now at about the worst stage of all, but he will improve - although the improvements may be so small on a weekly basis it will only when you look back in a few months you will be amazed he has come so far.  Try and keep his nutrition up, as well as pain medication and encourage him to rest.  My husband found a short walk every day really helped his mood.

When treatment is underway there is a wealth of support, but unfortunately not a great deal once it is finished and both patient and carer can feel a little abandoned. As others have said, if you have dedicated Macmillan nurse, do contact them for support.  Ours was always happy to be contacted via email/phone.

Hang on in there - Dad will slowly get there with the help of a fantastic daughter!

B