Hi trickycycling,

Welcome to Cancer Chat, although I'm very sorry to read about what you're going through at the moment. I'm glad you've found this forum and I hope it provides some sort of outlet for you.

I'm sorry that no-one has yet replied, although hopefully other replies will follow (my post here will boost yours so that more people will see it). I would also encourage you to browse or search the forum for other relevant discussions.

It's a very welcoming and understanding community of people here and as I say I hope the forum is useful for you, even if it's just to write down any thoughts or concerns.

Ben
Cancer Chat Moderator

Many thanks Ben

Hi TrickyCycling

My husband is in the same boat. He just got cleared for stage 3 tonsil cancer and was told today that unfortunately there are some shadows on his lungs they are concerned about. About the size of a 10p and 2 small dots on the nearby lymph. I am devastated as I really thought he had beat this horrible cancer. He seems resigned to it. Have been referred immediately but I am disappointed that he wasn't given a full body scan before now. He finished his last radiation treatment on April 20th. He has no symptoms at all and is recovering well from radiation on his neck. I know enough not to read all the scaremongering on google but need information and it looks like this is not a good prognosis. He is only 55 but preying on his mind is the fact his Dad died at 60 of secondary cancer of the bowel. I do not know how to keep him positive and motivated to go through it all again so soon after. We just got back from a week in France and he was finally eating and almost back to his former self. Feels so unfair. How are you coping with everything? K

Hi K, thanks for reaching out. I'll try and help as much as I can but please let me know if I go off course.

I have a similar tale. I'm 52, married 28 years, son 24, daughters 23 and 19.

I had stage 1A H+N cancer diagnoses last June. Trans oral tonsillectomy and neck resection in July then a delay while deciding whether to have IMRT or even PBT. One oncologist recommended it, two others sugggeste I could 'sit it out'. After consulting widely I had 6 weeks IMRT through October and into November. All went fine, rode my bike 50k to treatment daily and side effects not too bad, though the mask was nasty. 
 
Life seemed to be coming back together OK then I had my annual full medical in January where my Lung function test was very poor (I'm a lifelong athlete and I've had the test at the same place for 8 years so the deterioration was obvious). 
 

I flagged it to the oncology team who arranged a CT and confirmed new Lung nodules. Incurable. Prognosis 18-24 months. I only got an early warning because I flagged my lung function results. 
 

I'm pretty sanguine and I have time to sort my affairs out, but I'm scared about the end. Right now it's easier because I'm asymptomatic so still leading a normal life (as much as anyone can with C19 around). Still working, cycling but no racing, but not really possible to do a bucket list holiday. 
 

I'm currently into the second cycle of chemo. I'll have 3 cycles and a scan. If it's holding back the cancer (there a 1 in 3 chance it will) I'll have 3 more and then monitor. Maybe gets me an extra year. If not we'll try something else - likely immunotherapy or T-cell trials.

Getting through chemo generally well. Still riding my bike!

I've started video diaries on twitter @chemocyclist​

But I'm rethinking them as chemo isn't as bad as I feared. However if you go to my twitter bio there is a link to my blog which might be a bit more useful. I'm still trying to get it right and think about who it's for, but I wanted to start capturing my thoughts before it's too late.

If I can help in any way please let me know. If I'm too direct I apologise - I treated this as a project all the way through though a guess sooner or later it will become more personal.

I guess your team will want to validate the scan - perhaps with a PET-CT? But regrettably we might be members of a rather exclusive club.

Let me know?

Hi Trickycycle

Thank you for your detailed response. I am over the worst of the shock to be fair. Resignation and fight instinct kicks in pretty quickly as there is no other choice really for him. We do not know for sure yet if it is a new separate cancer or has metastasised from the original tonsil cancer. I do not know what is better. Husband refuses to try and find out. I understand why. He chooses to leave it to the experts where as I am the opposite and want to know everything. I cannot accept an incurable diagnosis right now. Just seems impossible. I am terrified. It's true when people say the main thought going through your head is " this cannot be happening to us". Husband found the radiation, although horrendous, not too bad compared to chemotherapy which only one super dose knocked him on his ***. He is not looking forward to that again. Interesting to hear you say it's not too bad. Odd what different people can tolerate. How did your family/wife process the news? We have three children also. 26 daughter, 24 son and 21 son.  Our youngest is home with us from Uni right now. Haven't even told the oldest two yet. Need to see them face to face.

i will follow your blog. I need to hear the honest, bold truth even if it is direct and painful. I just crave knowledge and to talk. My husband does not feel this is anyone else's business. But I process by talking to my family. I will do what he wants however. This is his journey and the least I can do is support him. Finding it incredibly hard though. Want to phone my Mum and cry my eyes out. Glad I can let it out somehow with strangers on forums. I say strangers but that boat is pretty tiny once you're in it. I thank you for your candour and for listening/ reading. I will let you know what comes of the next specialist visit. That is one meeting I will insist on being at. I hate that he got the news today on his own because of bloody c19. Trying to stay positive until we know for sure. Thanks again. K

Hi, completely understand. On our side my wife and I are probably the opposite way around to you guys! Yes bizarrely a separate cancer would probably improve your odds. If you haven't considered it I would always urge getting second or their opinions; pay if you need to. I'm fortunate in having private health cover as a back up but other than surgeries all my treatment has been NHS. I saw the UK expert in my cancer and it would have cost £350 if I'd paid - in this situation it's a small price. 
 

Out kids are all at home - two eldest working locally - daughter is a primary teacher - and son works from home for a law firm. My daughter returns to Uni next week. 
 

We've all been open in talking about it. In fact I need to keep a lid on it sometimes. My black humour sometimes comes out. I'll open a cupboard and see something we've stocked up on and say "ohh, lifetimes supply!". Not funny for them. 
 

as I'm still largely asymptomatic it may not be real yet for them. And I'm scared of dying, they're thinking of life without a husband or dad.

my wife lost her mum at 52 through breast cancer so this is raw for her. My dad died at 65 when I was 20 so that's probably conditioned me too. And I lost my mum 3 years ago at 89. 
 

on the Covid side they have noted that cancer patients fare no worse than others so I think the cancer community will push on with treatments unless NH gets overwhelmed. My hospital allows accompanied visits by agreement so you should be fine. 
 

happy to keep in touch through here or PM me on the Twitter - whatever works best. You're the only one who has appears on this topic since I posted it. 
 

I don't don't know if it helps, but my analogy since this news was that I was in a big boat of cancer survivors, but now I'm being towed along in a little dingy behind them. I can see them all on deck chatting nervously, but I'm bouncing over the waves in an inflatable on a rope that's getting longer. One day the rope will be let go. 
 

But what I would share is that if you do get news like mine there is a huge amount of support available for psychology, advanced care planning, and all of the practical things to think about.

more than ever I'm guided by "plan for the worst, hope for the best". And draw the positives from every day.

i'll stop the cliches now, and as before please feedback if any info is not what you want to hear as you ride this rollercoaster of emotions. 
 

best, R

Hi R

Whew. Makes it all very real but I am so glad to have someone understand. I think I am more like you. I can't ignore the huge ejeohabt in the room and for me the only way to try and enjoy life is to be realistic and talk about it however much it hurts. I'm an "honesty above all else" type so not mentioning the obvious makes it stronger/bigger of an issue in my eyes. Tough when the other half just wants to carry on like nothing has changed. I know that is a classic coping mechanism so I take his lead whilst stuffing my hands in my mouth occasionally. 
we have private health care with BUPA and I agree. Several opinions cannot hurt. I want every option on the table. He will do as told by first specialist. 
I got to work today at 6am without realising the time. Little bit early but have been wide awake since 5am. Need to stay busy and thankfully I can do that safely here. 
I will take advantage of the help this time. Got through my wobbles online last time and the fact that he was tough and responded well to treatment. If what comes back as worst case scenario at consult (which I am fully prepared for) I will need more than a few bloggs to see me through I think. Cancer has never really touched my family until last year. Always thought I have been getting off lightly. I feel like a monster when I get angry inside that he wouldn't stop smoking 10 years ago when I begged him to. Feel like I wished this horrendous journey in him. I think I even said the unimaginable - "if you get lung cancer - and you will - don't expect me to stick around". What cold hearted person says crap like that? I did. I am awful with illness in people. Almost phobia like. I was hospitalised as a child in Africa in a poor village facility with babies and children dying daily right next to me. Gave me a fear of illness for life. Now I need to stop feeling sorry for myself and get my ear in the game. I will do everything in my power to be with him for as long as humanly possible. I don't care how I feel about it. I will mop up sick and dribble and anything else required as that is the very least I can do. Need to get rid of this burning anger though and I think you are right - the McMillan people will help. I am very glad to have you in my camp for now. 
really hope you continue in the strong vein you have started with. Thanks for sharing. K
 

Kindred spirits! 

challenges are I think are about timing things. Just in terms of when to focus on treatment, when to plan for future, and when to just enjoy normal life and forget it. 

then reconciling everyone's schedule so they're all aligned - sometimes impossible. I'm currently out for brunch with Mel. She's just buying. Will I bring up cancer issues, or just enjoy the sunny morning? That's the dilemma!

with adult kids and COVID will we get a bucket list holiday? We're taking the family to Cornwall at crlhristmas but it's not Disneyland!

the other things that surface are all of the relationship challenges from the past that don't matter so much when things are normal. you can't fix them anymore. I'd planned to retire shortly and then spend time slowly improving all my family relationships that had made way for work (provider and career) commitments 

now I'm trying to do all that in 12 months. But others have their own schedules!

i hope some of this makes sense. If I can help by having anything relatable I will. Good to have someone to share with.

Hi R

I asked my husband if he would dig out the BUPA pamphlet this morning and do a bit of research on what exactly he could benefit from in this situation. Waiting for referral is always slow and makes for an anxious time. Especially in this current climate when the news is full of the back log of treatments still pending with the NHS. He agreed which is positive. Turns out that only once we have a plan of action can we take advantage of the private fast track route - so its back to waiting. 
 

I am amazed with how matter of fact you are about the time you have left and what you are doing with it. I am still repressing the panicky feeling I keep getting about rushing to plan all the amazing things we want to do in retirement. That's a step too far and definitely jumping the gun. But when time becomes such a precious commodity I can't help it. Cornwall at Christmas sounds lovely. My husband is Cornish and we spend a lot of time there. We live in the Cotswolds right now. Had always wanted to do a long 3 week split centre safari holiday once work was out the way. We have been on safari before but really wanted to push the boat out for retirement. So difficult to think of anything like that when the world is completely upside down right now.

Have to stay positive and take a leaf out of husbands book. He sticks to taking each day as it comes and tackles it head on. Stop thinking what if and deal with the facts. 
I will be grateful when we have a plan. 
In the meantime - my focus is to stay active and enjoy our time together. Have a good weekend. K

Hi yes I guess the (maybe) frustrating thing with private healthcare is you need an entry point. For advice/second opinion you need your 'first opinion' recorded. They also need full access to your records etc. If you want to go that route it's all fine and expected - I worried that the original clinicians would be offended but they aren't - they actually like to learn from colleagues opinions!

whilst we didn't have really any big bucket list things that we are desperate to do, their importance actually seems to have slipped and we are more into the time we have rather than what we're doing. Maybe more of an adjustment for me than Mel (wife). Psychologist has also guided us to think about things that we can do within our control, that aren't timebound, to avoid disappointment. Good advice I think. 
 

The other thing that has helped us is recognising we're on different timelines. Mel wants to stick in the 'now' as I'm asymptomatic (largely) and not get into painful thoughts about the future. That's fine and we're learning how to make sure our horizons don't clash.

enjoy the weekend too, you will draw positives from this challenge, I know you will