Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Sister diagnosed with Hypopharyngeal cancer stage 4b

Master01
Posted by

Well this week has been a whirl wind of emotions for my sister and family - we are devastated and scared. My sister starts 3 rounds of aggressive chemo next week , then after that RT.

My sister is 42 and has 3 children all girls ( 24,6 and 3). We are still taking in everything and still have many questions. lots of information to read. I've started to make a list of items I want to get my sister that will help the next 9/10 weeks. We've been told she will suffer sickness, vomiting, diarrhoea, numbness in toes and fingers and loss of her hair. We've been told what to watch for and given emergency numbers etc... so much to take in and it frightens me let alone how my beautiful sister is feeling.

We've cried together, held each other and will go through this together. I'm sure along this journey we will have many questions , looking for advice helpful hints etc. I'm encouraging my sister to join the community, but unfortunately the day she logged in she read something about someone passing and is now frightened. I know my sister and she will join at some point, she just need some time.

In the meantime you all have me...Can anyone recommend items we should get that will help her , make her comfortable over the next 9/10 weeks. Including items that are a must have ?

Thank you for reading, and reading all the stories and journeys on these pages give me peace that we are all here to help and listen when needed. Thank you from a scared older sister looking out for her baby sister xx

Anna M
Ron51
Posted by

I can't help you much as my chemo was quite low grade and I didn't have any side effects (that I could discern) though I did have a load of tablets to try and stop the side effects, someone I know had aggressive chemo (not for head and neck) and the recovery was very slow and left him not being able to do much for a long time, she will need lots of support and help getting to the hospital, so get all the friends together.

On a brighter side there are more of us that survive than don't so she should look to all of us on here years after our diagnosis, I an now 4 years after finishing my radio and chemo and although things are not back as they were I am still alive as are most of us on here, in fact that should be all of us and some many more years after treatment.

Tell her to try and stop worrying and take things one day at a time as you can over think the bad bits as not everyone reacts the same to the treatment.

Master01
Posted by

Thank you so much. 4yrs after finishing RT and Chemo well done.

You are right at the moment we seem to focus on the bad bits.

We don't have a big family, just me, my sister and Dad, her partner and elder daughter - we are planning to meet Sunday to go through treatment and the plan for the next few months.

Anna M
deebo
Posted by

Hi my hubby just on the other side 3 weeks past all the treatment chemo radiotherapy rang the bell it’s a roll  coaster he’s was diagnosed with nasopharyngeal cancer can’t operate as it’s to tricky where it is if we can help we are here we have had some brill support from the group myself as my hubby would not sign on to the website

remember your not alone   

Ron51
Posted by

Did you go to the big meeting (can't remember what it's called) where everyone gets together and go through what they think should be done, all my family came to mine and could ask questions, I think it gave them a better idea of what would be happening to me, I didn't want to know to much as I am a bit of a wimp and just having all the needles stuck in me was/is a challenge let alone the 10 hour OP.

JosieFromGlastonbury

Hi Anna,

It really is a scary time for everyone concerned, not just the patient!  I didn't have aggressive chemo for my treatment, so I'm afraid I can't answer on the practicalities of getting through the treatment, but there is one thing that I would like to suggest. 

At this stage, it is all about the treatment - what it involves, what are the side effects, and so on.  Very little, if anything, is said about what happens afterwards.  Many people have had the experience of others coming up to them once the treatment is over and assuming that everything must now be back to normal.  They simply don't know, because they can't see, that the after effects of any cancer treatment take a very long time to work through.

Your sister will need support in her day-to-day life for a while yet, all the more so since she has young children.  Having kids is relentless and exhausting even if you are well, but during and after this treatment regime she will be totally focussed on herself and will have very little spare to give to other people. 

She may not think to ask, or feel able to ask, for practical help around the house, but anything you can do will be much appreciated.  It may be putting clean bedding on, or taking the kids away for an outing for a few hours, or turning up with a meal, or running a duster and vacuum round.  Anything, really, that reduces the workload of having a house and family.

Also, it will be very helpful to the girls (all of them, not just the youngest two) to provide an open and non-judgmental space for them to talk, vent and cry about what is happening in their world and how they are feeling about it.  They will almost certainly not want to tell their mum, but they might well be able to open up to you.  They need to have a little advance notice of physical changes that she will experience, like the hair loss, and of things like the nausea (which is very debilitating to some people).  People can cope with change much better if they have some time to get used to the idea. 

My way of coping with my treatment was to take everything odd, ridiculous, strange or weird that happened to me, and turn it into funny stories for my kids.  I relentlessly took the mickey out of myself and the whole situation, which made things much easier for me and for them.  I know not everyone can do this, but it worked for me.

Finally, as to the radiotherapy, it will almost certainly affect her ability to eat solid food for a while, so I do have one practical recommendation, which is to buy a nutribullet.  They can puree food smoothly enough that it can usually be swallowed even in the depths of treatment, though that's a whole other story!

Please, keep asking questions and there will always be someone who will pop up with an answer.  Your sister is very lucky to have such concerned family supporting her - remember also that we are here to support you too!

Best wishes,

Josie

Master01
Posted by

Thank you so much for the advice, really appreciate people taking time to read my story and give advice. I hope one dya my sister and I can do the same.

Thank you

xx

Anna M
Master01
Posted by

Wishing you and your husband all the best - my sister wont sign in yet...

Thank you for your time replying really appreciate it and feel that joining this group has been a real positive in such a dark time xx

Anna M
Master01
Posted by

We did have a meeting with consultants etc, myself, my sister and her partner attended. We meet the Chemo nurses Wednesday who took us through what to expect. On Sunday we all plan to meet - my Dada and my sisters elder daughter to go through the next few months and what support we need to give.

10 hour Op OMG - well done to you that's a long Op and recovery from that one.

Anna M
Ron51
Posted by

The operation was the easy bit, I didn't know anything about it lol

mummyto3
Posted by

Hi there . I have no diagnosis yet and am 35 with 5,3 and 3 month old. I am out of my mind thinking I have some sort cancer possibly sinus tumor but only symptoms

have been an enlarged lymph node. I got ent appointment Tuesday and am dreading it . I just want to say i understand your sister must be feeling. I have 3 you s child rearing Nd have no idea how I’m meant to tell them or how I am meant to carry on with everyday life like school run. I know I need to wait for some answers before all this and I pray to god that it turns out to be nothing but I just have this awful feeling inside that our lives are going to change . 

Sendkng so much love and strength to your sister and all

of

you x 

Thanks 

Master01
Posted by

Hi

Try not worry I know it’s hard and your going out of your mind. It’s easier said then done .

My sister read a story to her little one (6) tried to explain about the lump and what medicine mummy will need , she asked her if she had any questions at the end - she was told mummy I like your lump and when will you start your medicine . 

Its so hard , scared what the children will see but as a family we will pull together and support my sister and her little ones and not to forget her older daughter x 

try to be strong keep me posted I wish you luck and will be thinking of you x

Anna M
Bordercolliefan
Posted by

Hi Anna, it sounds as though your sister has a wonderful support network round her already. So much good advice has been offered on here but my contribution is that amid all the various treatments that we have to cope with, the one thing that really hit me was the fatigue. For months all I did was languish on the sofa and sleep, which was fine because I'm retired and my family are all grown up with families of their own.

Your sister's little ones will need support themselves because they won't understand why mummy isn't able to play with them, read stories and at times even cuddles! (I got very depressed at one time). It's a good idea to let the girl's childminder/schools know what is going on at home. They will be better prepared to treat the children sympathetically.

All the best for the difficult road ahead, Chris

RadioactiveRaz
Posted by

Hi Anna 

this is Hazel I am 10 month post radiotherapy for tonsil cancer 2 r hemo. Isolation and 35 radiotherapy.was guven the all clear if cancer 14 January this year. Did you go to the multidisciplinary team meeting g with your sister .if not go the next time as the more people that are with her the easy it is for someone to take note as your brain can’t take it in I know as our daughter took notes answers when I looked at them on way how I had forgotten more than I had remembered 

Things to get 

i was diagnosed mid June and treatment started mid July in the heatwave so I found a humidifier for sleeping at night invaluable.

a nebuliser which the hospital provided 

duraphat toothpaste as normal toothpaste too harsh on dental,prescription.

soft  toothbrush as again normal ones too hard I use curaprox from amazon £8 for 3 even baby toothbrush too harsh.

i did have a NutriBullet which was good until my mouth couldn’t take any more .

Has feeding tubes or pegs been talked about ?

i have a blog detailing my experiences just remember we are all different I found a positive mental attitude is what got me through it  the treatment is brutal but if I can do it anyone can .

blog www.radioactiveraz.wordpress.com with it being a blog the latest post is first so scroll down  maybe you read it first then show your sister.

good luck keep in touch.

Hazel

RadioactiveRaz 

RadioactiveRaz
Posted by

Hi Anna 

this is Hazel I am 10 month post radiotherapy for tonsil cancer 2 r hemo. Isolation and 35 radiotherapy.was guven the all clear if cancer 14 January this year. Did you go to the multidisciplinary team meeting g with your sister .if not go the next time as the more people that are with her the easy it is for someone to take note as your brain can’t take it in I know as our daughter took notes answers when I looked at them on way how I had forgotten more than I had remembered 

Things to get 

i was diagnosed mid June and treatment started mid July in the heatwave so I found a humidifier for sleeping at night invaluable.

a nebuliser which the hospital provided 

duraphat toothpaste as normal toothpaste too harsh on dental,prescription.

soft  toothbrush as again normal ones too hard I use curaprox from amazon £8 for 3 even baby toothbrush too harsh.

i did have a NutriBullet which was good until my mouth couldn’t take any more .

Has feeding tubes or pegs been talked about ?

i have a blog detailing my experiences just remember we are all different I found a positive mental attitude is what got me through it  the treatment is brutal but if I can do it anyone can .

blog www.radioactiveraz.wordpress.com with it being a blog the latest post is first so scroll down  maybe you read it first then show your sister.

good luck keep in touch.

Hazel

RadioactiveRaz