Post Treatment nearly 3 months and .........

Hi Cunn 5353,

Well, as I'm sure you know all our cancer's are different, mine was T2 N1 and I'm now 58. I had never had a days serious illness in my life, worked for myself, was pretty successful,lived a good healthy(ish) life and things were just getting great, children through Uni and off my hands, happy doing their own thing career wise, had met the love of my life three years previous, my business of 35 years finally bearing fruit and I no longer had a mortgage, life was very good indeed, and all this at the start of 2017, what a great year it was going to be..............how wrong was that premonition !

Lump in my neck around February which i thought was swollen glands, after no change at two weeks i went to my excellent GP, he said it didn't seem anything untoward, but would send me for a CT scan anyway just to be sure, that was inconclusive, so one month down the line and still the lump was there, it was decided more intense scans and a Biopsy.....but when the Doctor is just about to inject me and take the sample he suddenly stops as says in no uncertain terms..."Mr Robbins, I have done about a 100 of these small Biopsy's this last year alone, I believe that if i do this they will simply reject it and ask for the larger more invasive Biopsy, this will mean losing a few weeks only to have to redo a more invasive incision at a later date, why waste that time? if you are happy I will speak with your Consultant and we can do that procedure today ?" that's when I thought..."Hmmm, this is becoming more serious than I thought.....so to cut a long story short.....one week later I'm called in to be told that Stoke Mandeville can do no more there, I have a T2 Tumour with another malignant tumour elsewhere in the body causing the lymph enlargement and they are transferring me and my notes to the "Churchill Cancer Head & Neck Unit" at Oxford......and boy am I glad they did !

After the initial shock, I found I was very calm, knew it was quite rare, but also had read endless journals and online accounts of Nasopharyngeal treatment, so I knew there was a good recovery rate, albeit very harsh and unpleasant treatment as my particular cancer is in operable, my only concern then being the secondary tumour, where exactly was it in my body ? that frightened the living daylights out of me if i'm honest.

I consider myself extremely lucky to have been able to have treatment at the Churchill, it is one of the leading Hospitals in the fight against Head & Neck cancers in the UK, well funded, state of the art equipment, with some of the latest and innovative research currently happening in the UK, as NHS treatment go's, this was the NHS at it's very best, and I cannot remember a day when the staff and medical team were anything but totally and utterly professional in every way, if they were tired they never showed it, if they were stressed, you would never have guessed, and when the pain kicked in at an inconvenient time of 6.00pm after Chemo, the fact they may have been on duty for a very long day, did not stop them going the extra mile to get you some much needed medication even though the Hospital pharmacy was now closed.....I cannot praise or thank them enough, every single one of them, at every single stage. 

For me, I came to terms with my illness very early on, I was going to stay 100% positive no matter what ( even though there are times when that positivity leaves you and you are consumed with sadness and self pity ) for the most we are positive ! ....I found the radiation mask terrifying, fine having it made, but when it came to clamping and initial set up scan, i hated it, it was too tight as soon as they clamped it down, and a claustrophobic feeling i never knew i had simply washed over me, I needed at least 4 attempts before i was able to go through the machine and a scan, but even that bought me out in a cold sweat. I say this because not everyone suffers with this reaction, nor does the mask bother them in the way it did me, but if you find yourself having any of those feelings, simply ask the radiology team, or your mask maker, to remove the eye plastic, simply cutting out two eye holes changed everything for me, I was able to wear the mask for the whole 6 weeks with no worries after they did that, and again they couldn't have been more accommodating, patient, or helpful in their suggestions.

The treatment is a struggle, a big one if I'm honest, constant pill taking, getting used to the P.E.G. tube ( which is invaluable by the way, so glad i didn't refuse it )  sleeping at night, the fatigue, the total fatigue at times, the sense of being out of control, and the constant back and forth to Hospital in the car every single day did nothing for my nausea, and I won't even go into the mucous and spittle that kicks in around week 3 or 4 ( not everyone suffers this but I did folks and it was horrendous ) sorry, nothing prepares you for the amount of spittle and mucous the body can produce, many times the Chemo made me dry rech at night, and I spent many an evening just standing under a hot steamy shower so I could breathe a little easier, many times with tears rolling down my cheeks.

Apologies if I'm waffling on here......I can barely believe what i (including my friends and loved ones ) have gone through this past 10 months since initial diagnosis....there are times when you may think ......"will this treatment ever stop" ?......"when will i turn that corner" ......."will all this treatment actually work for me ?" ......." I can't take much more of this" .....but please tell your husband to trust me on this.........you do get better ! ....things "do" change......you "will" turn that corner......you will look back and wonder, just like me, how you ever got through it all.....and more likely than not, there will be tears......but stay as positive as you can, and with time you will come out the other side, it's an arduous journey for some, easier for others, we are all different....but whatever your make up, try to focus on one day at a time, because every day passed, is another day towards recovery.

Wishing the very best, now, and in the future.

Marcus.

Hi Marcus.

It has been almost unreal reading your posts. I have the same cancer as you and the same stage diagnosis. I am the same age. I had the same treatment albeit at a different hospital and experienced the same difficulties and effects. I am now 15 months post treatment. Slowly getting there physically though have long term radiation effects. Positive mind set like you. Onwards and upwards! Take care.

Thanks for your advice will certainly use it, it's a relief to hear stories of recovery although it's been very difficult for you you've made it through the worst by the sounds of it , best wishes for the future 

Hi Marcus 

Thanks so much for your honesty and for telling me your story I can totally understand a lot of it and relate to some of it as it seems similar to my husbands.   My husband had been sick since last April with severe sinus infection and bad headaches one antibiotic after another and then sent to a&e and was told he had bells palsey given steroids and sent away. Another month passed and he got worse and pain got worse until finally I made him go to specialist hospital for ears nose and throat and that's when they used the camera in his nasal passage and seen a growth - we literally were in five days later for biopsy which was very quick and the agonising two week wait. There's no way you can understand unless you've been through it those words from the consultant I'm afraid it's bad news, it's just so shocking and also to have something that's so rare.  I was allowed in with my husband when he was getting fitted for the mask and I'm so glad I was there to see how they did it , I'm not sure I could do it myself it's very restricting very tight and  difficult enough to breath , my husband was wonderful he really got into a zone I have so much admiration for him and for everyone else having to go through that procedure it's certainly not easy but necessary. You described your experience of getting the mask fitted so well. He's a long road ahead of him I pray to god he can get through it I'm so worried he's at a later stage than others here but maybe I shouldnt get caught up in stages. It's really helped to read your experience you tell it so well and a little like yourself we too were in such a good lace in our lives and bang this happens - I felt alone with this especially since there have only been twenty cases  in Ireland last year.  I'm grateful to be able to read others with the same or similar diagnosis. I wish you continued health in your recovery. 

Hi again Cunn5353,

Reading your concerns about stages I completely concur, try not to get caught up in where, and what stage (easier said than done I know ) all stages are different and respond differently to the treatment, if I can give any advice at all, which is hard because we all react in different ways, it would be to concentrate on getting through the hard days, because there will be some, those are the times when you need all the support and understanding you can get. There were times when my partner would go out of her way to try different feeds for me or drinks i may be able to put down my tube, only for me to wave to her away from the bed and roll over and just try to sleep, the nausea could, and will come at any time, it has no respect for how much or for how long a partner / wife / husband may have been slaving away trying to make you comfortable ! ....another time was when my hair came out in clumps at the back in the shower one evening (where the radiation exits at the bottom of your hairline ) I was devastated, and all the "it really isn't much darling" did nothing to placate my feelings of hopelessness, but I got over it, it has grown back of sorts, and is getting better all the time........remember, remember, It can......it does......it "will" get better.......it's just getting through those times together when there is no light you can see at the end of the tunnel, but that's only because you both haven't turned the corner yet.....but you will, one day at a time.

All the best as usual, I've just had Scrambled Eggs, mushrooms, diced Wiltshire Ham, and sliced cheery tomatoes on wholemeal toast with the crusts cut off ! ........... if you had told me even a month ago i would have been eating that for my breakfast i would have laughed at you.....but I am, and tell your husband that's how fast things can change. 

All the very best as usual......

Marcus.

Hi Marcus 

Hi again Cunn5353,

Well, firstly let me say, your husband may be one of the very few that breezes through the treatment and is indeed back to work by March. Wouldn't that be great if he was one of those lucky people, and I hope he is ?.......BUT.....being realistic, and i apologise if I seem a little sceptical here, I work for myself and have done so for over 35 years, never a serious days illness and would think nothing of 10 or 12 hour days, it's what you do when it's your own......but even with that work ethic i have only just recently been able to start back at a fraction of my previous output, you are just too tired, too weak, and too preoccupied with daily medication, PEG tube Hygiene etc and that's before you address the issue of opening your mouth and being able to communicate without it torturing your extremely sore radiated throat.:

First Diagnosed 6th April 2017 .....Treatment ended 6th Sept 2017....... 30 Radiotherapy hits and 2 Chemo "Cesplatin" and only now at the beginning of December can i even remotely say I am over the worst of it and "starting" ( note the word "starting" to feel the old me again ) 

Do not underestimate how arduous and long the treatment, and post treatment, and recovery can be, my Consultant even said to me at the beginning ......."Mr Robbins, there are going to be days when you feel so wretched, and weak, and are struggling to deal with all this Cancer will throw at you that you may think the Cancer has returned with a vengeance, but it hasn't, it's just your body and mind struggling to cope with the treatment regime and how awful this treatment can make you feel " .......I'm grateful for that honesty now, because in a way it prepared me for what was to come. As i say, he must remain strong and supported at all levels, and even when he is at having a bad day, reassure him that that is just another bad one behind him and only good ones will soon be arriving....... Don't be afraid to ask your Consultant how long from beginning to virtually total recovery.....I was told in no uncertain terms to be prepared for 6 to 9 mths, with a good chance of it stretching to a year before i could myself "back to normal (ish)....as I say, we are all different and respond in differing ways to our illness.

I imagine the 14th can't come quick enough for you, and it's a great feeling to finally be starting treatment when it happens, it's just that sense that at last the disease is being tackled, zapped, eradicated.......call it what you will......but just to start treatment, no matter how hard it may get in the future, is a welcome relief.

All the best to you and your husband / family.

Marcus 

Hi again Marcus 

Your right god wouldn't it be a miracle if he was the only one that sailed through this and back at his desk in 3 months ? Reading your message of course I realise the reality but I just can't tell him and he doesn't want to discuss it so I look at him and I feel overwhelming sadness firvwhays to come but I also have to accept it, there's no other choice - again I ha evto say to you that your honesty is both refreshing honest and informative, people need to know this and it has helped understand what might happen to my husband I'm so scared for him I'm praying I can help him in any way I can - yep I am counting down to the 14th while my kids are counting down to 25th - thanks again take care of yourself your doing well by the sounds of it. 

My cancer is also a rare one (vocal cords) so I can relate to the worry of trying to find someone else who has gone through or is going through what you or your partner are having to cope with.  After some time, though, what I realised was that there are similarities for all of us in what we are going through and learning about other people's experiences, even if it isn't exactly the same, really helps because as Markus says, we all react very differently.  I know the thing I've hated most is the mucus and the cough (dry-ish) and that is because of the radiotherapy, not because of the type of cancer i've got. Remembering to try to sleep bolt upright may not be restful, but helps  As does carrying a bowl around !

Asking others on this site how they have managed has been so helpful for me.  And the sheer positivity of all these people willing you on is something else I've found such an enormous help because cancer does isolate you.  Some people I considered really good friends can't deal with it at all, in fact, even some family members can't, but having the support of people on the site really helps with all this.

I wish you and your husband the best.

Anna

Thank you so much Anna , totally agree it doesnt have to be the exact type of cancer - head and neck cancers are all similar and even others have the same types of treatment and side effects. It certainly seems the dry mouth and mucus is a difficult part of it orcthe most difficult, so many people seem to be saying that to me. Your right about friends and family some can't handle it some people can't even look at you in the eye honestly I believe it's fear, fear for themselves because the reality is they too could be diagnosed with a cancer - I honestly think that's what holds people back from really committing to the person who is diagnosed.  I don't hold anything against anyone who finds it difficult sometimes it's just disappointing that's all. Keeping positive is the key and all the people on this are so encouraging and so helpful like you I really appreciate it so much , take care and thanks for your reply.