Hi Ian

my husband has larynx cancer an just finished 6 weeks radiotherapy on fri it’s been long six weeks an he has done really well as when he first started they told us the downs I wrote him off week two but he still got his voice just about an kept his weight keep on top of your pain his neck is really sore now and got sore throat but they said next two weeks will be tough good luck with your treatment

mansy steve

hi mandy just git to hang on to things willgetbbetter I am 10 weeks post radio,eatingbstill difficukybthank god for high calories drinks but little by little am eating and regaining strength 

I have written a blog if yiu want to read the ups  and down s feel free to ask any questions between us we all help each other

www.radioactiveraz.wordpress.com

hazel 

thanks Hazel,

tbh I was concerned as well re medication after treatment stops end this week but to be fait my GP really good.

I phoned hime Friday re this and he re assured me I wont be left without and not to worry about quantitles etc and would make sure ok. He admitted communication between hospital good be better and they are not really updated timeously all the time, but he took a note of all my meds so not a surprise when I put through as repeat prescrption.

I'll post end week how I get on but thank you for words of encouragement.

kind regards

Ian
 

Hi Hazel,still in employment but not worked since treatment started on 2 July.Will be working til 67 I'm afraid due to naff pensions.Also have expensive hobby so not working is not an option,besides I like my job and I'd get bored,I  need the routine.Dont expect to be back at work til after Xmas really.Company have been good to me though so not had the worries that some folks have.Tried gluten free brown bread yesterday with some soup and it went down well.

John.

Hi Johnny 

i will be 66 when u get them oittance if state pension so in meantime spending daughters inheritence !!!!LOL Onkyngot the one daughter and she will certainly spend anything we’ve left. 

I worked in travel for 35 years so travel was our big expensive now we have a long term rental on an apartment in Murcia 5 mins dorm sea and try n spend about 16 weeks a year there other than that live quite cheaply although after this experience it’s a case if unwant simething *** ut buy it it was certainly a wake up call.

your hobby motorbikes by any chance !!!

we cycle that’s been our main hobby niw just returne dfor 19 days At apartment but  oncologist gave me permission to go and I actually managed to bike 100 km it was so brilliantly just having the freedom .

strangely bread as long as toasted I can eat spread with lurpack but will look for gluten free n give it a try 

The salmon fillet was perfect 3 mins a side in frying pan then popped in hot  oven for 3 more and I ate it all how was pasta and prawns.

hope the weather isn’t getting u down I was just pleased treatment was  in the summer .

pleased your work has been understanding like yiu say nit all of them are 

keep in touch 

hazel

Hi John 

My hubby definitely found gluten free was the way to go to be able to manage bread, biscuits etc - bit of an acquired taste but he soon got used to it. 2 1/2 years later he can manage most things now even a crusty baguette! with loads of Evian water( his water of choice ) to help !! 

He worked from home all through his treatment- 5 cycles of chemo- 30 fractions if VMAT radiotherapy and a neck dissection as he has his own business that is computer based so he could  even work whilst hospitalised with sepsis and extreme vomiting - though I wouldn’t recommend it ! 

Keep up with the eating - trial and error we found as everthing tasted different from before.

good luck

Emma 

Hi,Hazel,yes I'm motorbike mad,have been since 17 and I'm 60 soon.Not been on the road bikes since about week 4 of radiotherapy and not been track riding at all this year with this thing.And yes I found toast and lurpak an easier option than dry bread,with copious amounts of tea!!!  Funilly enough I've not tried gluten bread toasted although I might soon as I miss beans on toast an awful lot. I do have about 8 different pensions but they won't pay anything like my current earnings so I'll stick at it so I can enjoy life to the full.Hope you get to enjoy lots more time out in Spain.We're Greece fanatics and usually go twice a year but only once this year thanks to this thing!!!

Hi,Emma,I got the gluten free bread tip off another thread on this site that I read through,in fact it might have been off one of your posts as you're username looks familiar.If it was then thanks.The baguette bit gives me hope because I miss my bread the most,a lovely bit of bloomer with bacon and egg on I would seriously kill for so maybe just maybe in the future.Yes some things do taste strange.

Never thought of gluten free and not sure benefits but might be worth a go.

I'm lucky as well in that I have been able to work from home throughout treatment and found quite therapuetic and productive. Also managed to get power nap when i needed it.

Again lucky as computer based and managed to access work networks from home so worked out well.

I dont think I would be able to work if any manual work involved.

4 treatments to go then hopefully on the mend and I am longing for either fish n chips or chicken korma n rice, just to make change from the esure drink menu of banans/cho/strawberry.

Soup/custard n rice and look forward to something little more tasty end enjoyable espacially when cooking is a hobby of mine and make all sorts cuisine from scratch, but sure in good time will find taste buds again.

its funny how you take things from granted when you eat what you want only to find them taste metalic when you normally enjoy.

Small price to pay though short term.

onwards and upwards

regards

Ian

Hi Ian

gluten free is eadier to swallow as its made from semolina flour which breaks up more easily and with less saliva making it easier to swallow. On the downside ut can be cardboardy and usually has more added sugar but thats not always s bad thing when trying to maximise calories. Warburtons New bakehouse sourdough or tiger cob from sainsburys or waitrose is the best ! Steer clear from tesco own free from range ! really cardboardy . Genius products are ok to but all of the crumpets are really heavy ! 

Emma 

Hi Ian 

good luck for tomorrow your last day of radiotherapy!well done in reaching this far ,remember ask if yiu need anything or any questions .

i brought my mask home sick souvenir I know she’s hanging in the garage some hospitals allow you to bring them home just thought I would let you know that one .a lot if people don’t want them then afterwards say wish they had kept it. I look at ut this way it saved my life fingers x.

take care keep eating , watch out in nuggtbfir mouth getting stuck tip I gargle gently with warm salt water .taomwater too harsh for me so I used mineral in kettle and mineral water to drink and cool it down lanyway enough if my waffling

hazel 

Hi Hazel,

Thank you and one day to go !!

I already have a mask as 1st one didnt fit and they let me take it home, but im not sure I want it around the house but thanks for letting me know.

Stuggled past couple days with eating and from consipation to taking laxido then diarahhea.

Feeling sick past cpl days and stuggle to get anything down so will ask for anti sickness tablets tomorrow as well.
I have booked 3 weeks annual leave from Friday and looking forward to treatment being over as its been a long shout and ive had enough now lol.

Sleeping more than normal past couple days, but just going with flow along with meds and trying to get through final hurdle. Aware that i will continue to feel naff for some weeks tey, but hoping to at laest be on te start of recovery once treatment stops

kind regards

ian

Hi Hazel,

Thank you and one day to go !!

I already have a mask as 1st one didnt fit and they let me take it home, but im not sure I want it around the house but thanks for letting me know.

Stuggled past couple days with eating and from consipation to taking laxido then diarahhea.

Feeling sick past cpl days and stuggle to get anything down so will ask for anti sickness tablets tomorrow as well.
I have booked 3 weeks annual leave from Friday and looking forward to treatment being over as its been a long shout and ive had enough now lol.

Sleeping more than normal past couple days, but just going with flow along with meds and trying to get through final hurdle. Aware that i will continue to feel naff for some weeks tey, but hoping to at laest be on te start of recovery once treatment stops

kind regards

ian

hi again.

lol...day out and maybe wishful thinking..

I have 2 more treatments to go and finish on Friday lol

kind regards
ian

Hi *** was convinced while in bath it was Thursday n. Use message u. Oops oh well thoughts are there !, gives u a day to think about keeping the mask !,,

hazel

Hi Hazel,

Hope you have found your lost day! lol

Feeling bit better today after cpl days feeling bit washed out and after meeting with nurse today , was told to make sure I have at least 2 ensure drinks a day as struggling with taking anything and lost few pounds this week.

But only one more treatment to go tomorrow - who and hooo....and looking forward to at least this part finishing and then buidling up strengtth as weeks go on.

Back on nebuliser and I think I should have use more often as it maybe helps more than I thought with the mucas.

Still trying to have positive head, managed quite a bit of work today and onwards and upwards from tomorrow

kind regards

Ian

Hi Ian

made use of my lost day by dragging myself n hubby to cortonwood and xmas shopping a task that needed doing !

good luck for tomorrow ,just a word of warning don’t try and do too much please I know 3/4 people who in first week after treatment overdid it and ended up in hospital .! Dehydration and lack of food .

at one point. Just remember it took 6 week 5 times a week to get the radiation into yiu it takes at least 3 times as long to get it out if your system .if u touch my neck I still feel heat from it 

 I was on 5  Ensure and 2 fresubin I still take 2 30 min power naps in day one after tablets at lunch and one at tea time. 

Re nebuliser I made it part if my routine for a good few weeks including middle of night It’s was wake up rinse take tablets try n get some Ensure down me even i night then nebulise then clean teeth put lip balm on biotene  gel on gums n teeth then bed .

the biotene gel is good for maintaining moisture u can try and get it prescribed or get your dentist failing that boots chemist. Biotene also do a mouthwash I have ut but too strong for me still 

good new today I am sat eating a tin if plum tomatoes admitting slowly but it’s a vegetable !!!!!! Up to now plain boiled beetroot and soft carrots if I am lucky . I miss fruit n veg.

oh well the tomatoes have defeated me managed 3/4 tablespoons its a start  

did I say I had a radiation burn the entire length of my tongue the oncologist had to catch the edge if tongue to ensure he had enough margins he apologised for nit telling me at the time but said it had to be done hence why I am having problem so still but looking today it’s now reduced to maybe 3 cm .

once again slowly does it think tortoise and hare m in this case we are defiantly the  tortoises.dont iver do work either 

thinking if yiu living in table for last time hearing the click of the mask being undone is quite emotional and at our hospital we get a bell to ring in reception I said all along I wasn’t doing it .but in the end I didn’t and hearing the clapping as getting then  congratulations made it worth while 

best wishes

Hazel look forward to reading uodates keep in touch 

That last radiotherapy session lives with you forever I reckon,remember it like it happened this morning even though the last 6 months have been a bit of a blur."Would you like to keep your mask John"? No, ******* burn it,I'm sick of the sight of it! Then ringing the bell after, not wanting too but being egged on by wife and daughter,and punching the air felt very cathartic somehow.A wonderful feeling closing one chapter.

Hi John 

wel put ! Glad I kept mask though as when u shown it to people the responses i get  are incredible ,like I couldn’t have done it  it so I reply no choice it’s that or die. Plus at Halloween looks good with lights in it !!

have a good weekend

Hazel

Hi

My husband has been diagnosed with cancer in the tonsil and right lymph gland and was told it was curable but it has now been 2 months and still no sign of having the radiotherapy or chemo as they are now check his chest. He is very anxious as they said it is a fast growing cancer and feels it needs to be sorted out as soon as possible.  Would like to know how long you generally have to wait before treatment starts as its now 2 months and the hospital are not going to review him until 12th December (although they did say after Christmas but my husband objected) and he hasnt had the mask fitted yet either.  

Lynn

Hi Lyn

sorry your hubby has joined this exclusive little club but welcome and you’ve come to right place don’t worry easy to say nit to do. The n h s do have protocol to follow Ifrom diagnosis they should start treatment within 63 days I was exactlyb63 days looks like your trust ar e over running . My  oncologist says weeks don’t make that much difference as ince treatment starts ut is aggressive but like yiu say they do aim for cure .also look at ut this way if they were major concerned they would have him started sooner rather than the allocated waiting time  hopefully.

i am 12 weeks since my last radiotherapy session and from diagnosis day well even before I have kept a blog itbgoes into detail .

www.radioactiveraz.wordpress.com also a guy called Gary who is nearly 4 years into remission has one which helped me as well

www.gammaraygary.wordpress.com

i go into detail about the mask it literally takes 15 mins and tell your hubby don’t worry it’s painless . Let me know if yiu look at the blog please plus any thing else you want to know we are here for each other .looking back it’s tough treatment but a positive attitude is the biggest thing you can have along with a supportive family .re the chest x Ray it is normal I had chest x Ray plus pet scan they are checking thatbnothing has spread .

Regards and take care

Hazel

Hi Lyn

As Hazel says welcome to our small but supportive group of both patients and their carers. My husband was diagnosed with tonsil cancer and lymph node metastasis in December 2015 - in fact on the 8th its burnt into my brain and he started active treament on the 8 th Feb 2016 so exactly 2 months later. The Oncology team need all of the scans etc to be anle to make a decision re what treatment is appropriate. There are then other preperations such as a dental review - do any teeth need to be removed- will he need a PEG feeding tube prior to starting- will he need a PICC line for chemo delivery - so it does take time. Maybe contact the Oncologist secretary and ask to speak to the Oncologist and vooce your concerns or do you have a specialist Macmillan nurse you can talk to.

Good luck and ask any questions you might have and we’ll try to help.

good luck and best wishes

xxxxx

Hi Lynn,

Am sorry to hear of your husbands diagnosis and understand the anxiety.

I started having symtpms in Jan and to cut long story short and in bewteen wrong diagnosis/meds and treatment it took me until August until properly diagnosed and again told curable. Was told not to worry as I raised the same concerns over treatment wait, but had to get teeth removal first,recovery period then mask fitted, then appointments sorted.

I literally just finished my 6 weeks radiotherpy this morning and although its seems a long time, I was told the extra fews weeks/months would not really make any difference to treatment plan.

I do understand though , that you both want to get treatment started and hopefull you can get your dates as early as possible after xmas in a few weeks time

i wish you both well.

kind regards

ian