That was a sh*t day!
Discussion
About a month ago, my son fell whilst playing football, and tweaked his shoulder. Since then he has a lump appear around his collar bone and he expressed much discomfort – treated with brufen and paracetemol with the hope it will go down rather quickly.
But the lump did not go down and maintained the same discomfort. So after a week or so we sent him off to the GP who initially prescribed the same – after a week he reviewed as there was no change he did some blood tests, and referred us to the local hospital, and an appointment was set. I did not twig anything odd even though the appointment was set for the ENT department.
The day after the blood tests he called us, and asked my son to go in and see him to discuss the results. This was worrying obviously but I accompanied my son, and the Dr was confused as to why we were there. He explained there was a bit of a high white blood cell count but he did not want to see us, told us not to worry and just to attend the hospital where the lump could be looked at more closely.
So this ENT appointment was yesterday. We were met on time and had the initial consultation with the nurse. The Dr came in to look at the lump and said he wanted to take a sample from within it and have it analysed by the lab on site. My son was ushered into the treatment room where another Doctor took the sample from the lump. He said the results would be about an hour, so we took ourselves off for a brew and a mars bar! Morale was reasonably high – we even tackled the “Where Was I?” thread!
When we went back to ENT and sat and waited. Quite quickly we were called in – to be met with rather solemn looking consultant and two nurses. They spoke really softly and I found this rather odd and almost alarming. The doctor stated there was a problem but not to worry as it was treatable. He did say my son needed further tests as he suspected lymphoma, and he needed a Chest X Ray, more blood tests and a biopsy. He never mentioned cancer nor chemo, but stated the treatment was more than a few tablets.
I had no idea what lymphoma was but guessed it is serious. So much so, I did not know what to ask the Dr – one for not knowing what I did not know, but two, as I guessed serious did not want to alarm my son. Panic has set in big time now – but I needed to remain strong and supportive. My son looked petrified and the staff were awesome in comforting him – but their tone told me they suspected something a lot more serious than a simple lump.
Blood tests and chest x ray done very quickly. The specialist nurse who was allocated to us was exceptional – and stayed with us all the way through. We then went to get the biopsy taken which went smoothly. We were then given appointments for a CT Scan tomorrow, a PET Scan Monday and a follow up for results and treatment planning on Wednesday.
So why this post. I have to process this myself in order to help my son process this. He is understandably petrified and probably a little more aware than I am about what this is about. I have had a google about lymphoma, and wish I hadn’t – the obvious scaremongering is blatantly evident, but have found the NHS and lymphoma sites have some useful stuff.
I want to believe the tests will prove there is nothing serious going on (that is the optimist in me) but deep down I know it is going to be bad news. I have today spoken to the lymphoma support organisation who seem to offer little help – understandable because as yet, we do not know anything really.
The lump has been there for about a month. It has not grown though understandably it did appear more swollen yesterday after all the poking about. I have questions I do not want to ask.
He is only 16. He is far too young to have to deal with this, and I suspect, I am going to struggle over the next week also. What happens after that, I cannot process just now.
I know lymphoma is cancer – I understand if you are going to get cancer, and depending on which strain this turns out to be this is the one to have – but I also know my son will need so much support over the next weeks/months/years.
I have been affected by cancer before. My father died many years ago when I was really young, and I had my own scare early this year which resulted in a colonoscopy. Luckily that was clear, but in a strange way I was prepared for me to have it. This however, seeing someone so young start the worrying process is destroying me, and I cannot see the way forward. Maybe it is because we do not know yet (in fact I strongly suspect that is the main issue) and soon I can process and move forward in supporting my son which ever way it goes. I also know this is ultimately about him, and not me, my wife or other children, and we, to put it bluntly, need to get a grip and focus on where we need to, my son!
I am no author, but feel writing about stuff helps, like I find talking and chit chat helps. The intent is to use this as a form of blog – but we will see how this goes, and how my will to write stays up there!
There was a thread a while ago titled “Cancer can f
k right off”. He was absolutely right.
But the lump did not go down and maintained the same discomfort. So after a week or so we sent him off to the GP who initially prescribed the same – after a week he reviewed as there was no change he did some blood tests, and referred us to the local hospital, and an appointment was set. I did not twig anything odd even though the appointment was set for the ENT department.
The day after the blood tests he called us, and asked my son to go in and see him to discuss the results. This was worrying obviously but I accompanied my son, and the Dr was confused as to why we were there. He explained there was a bit of a high white blood cell count but he did not want to see us, told us not to worry and just to attend the hospital where the lump could be looked at more closely.
So this ENT appointment was yesterday. We were met on time and had the initial consultation with the nurse. The Dr came in to look at the lump and said he wanted to take a sample from within it and have it analysed by the lab on site. My son was ushered into the treatment room where another Doctor took the sample from the lump. He said the results would be about an hour, so we took ourselves off for a brew and a mars bar! Morale was reasonably high – we even tackled the “Where Was I?” thread!
When we went back to ENT and sat and waited. Quite quickly we were called in – to be met with rather solemn looking consultant and two nurses. They spoke really softly and I found this rather odd and almost alarming. The doctor stated there was a problem but not to worry as it was treatable. He did say my son needed further tests as he suspected lymphoma, and he needed a Chest X Ray, more blood tests and a biopsy. He never mentioned cancer nor chemo, but stated the treatment was more than a few tablets.
I had no idea what lymphoma was but guessed it is serious. So much so, I did not know what to ask the Dr – one for not knowing what I did not know, but two, as I guessed serious did not want to alarm my son. Panic has set in big time now – but I needed to remain strong and supportive. My son looked petrified and the staff were awesome in comforting him – but their tone told me they suspected something a lot more serious than a simple lump.
Blood tests and chest x ray done very quickly. The specialist nurse who was allocated to us was exceptional – and stayed with us all the way through. We then went to get the biopsy taken which went smoothly. We were then given appointments for a CT Scan tomorrow, a PET Scan Monday and a follow up for results and treatment planning on Wednesday.
So why this post. I have to process this myself in order to help my son process this. He is understandably petrified and probably a little more aware than I am about what this is about. I have had a google about lymphoma, and wish I hadn’t – the obvious scaremongering is blatantly evident, but have found the NHS and lymphoma sites have some useful stuff.
I want to believe the tests will prove there is nothing serious going on (that is the optimist in me) but deep down I know it is going to be bad news. I have today spoken to the lymphoma support organisation who seem to offer little help – understandable because as yet, we do not know anything really.
The lump has been there for about a month. It has not grown though understandably it did appear more swollen yesterday after all the poking about. I have questions I do not want to ask.
He is only 16. He is far too young to have to deal with this, and I suspect, I am going to struggle over the next week also. What happens after that, I cannot process just now.
I know lymphoma is cancer – I understand if you are going to get cancer, and depending on which strain this turns out to be this is the one to have – but I also know my son will need so much support over the next weeks/months/years.
I have been affected by cancer before. My father died many years ago when I was really young, and I had my own scare early this year which resulted in a colonoscopy. Luckily that was clear, but in a strange way I was prepared for me to have it. This however, seeing someone so young start the worrying process is destroying me, and I cannot see the way forward. Maybe it is because we do not know yet (in fact I strongly suspect that is the main issue) and soon I can process and move forward in supporting my son which ever way it goes. I also know this is ultimately about him, and not me, my wife or other children, and we, to put it bluntly, need to get a grip and focus on where we need to, my son!
I am no author, but feel writing about stuff helps, like I find talking and chit chat helps. The intent is to use this as a form of blog – but we will see how this goes, and how my will to write stays up there!
There was a thread a while ago titled “Cancer can f
k right off”. He was absolutely right.Zod said:
I hope for your son and for you that he doesn't have lymphoma, but if he does, then it should be treatable.
Googling cancer, as Nick Robinson wrote in an article yesterday, will always convince you of the worst, so is best avoided.
Thank you. I have always avoided google previously for medical stuff (the Mrs has had a few snags over the last 24 months). Until now.....Googling cancer, as Nick Robinson wrote in an article yesterday, will always convince you of the worst, so is best avoided.
happychap said:
I've been where you are right now. My son was also diagnosed at 16 with a rare form of Lymphoma. Long story short is that he is now 27 and unexpectedly he was able to have a child which we didn't think was possible due to the intense treatment that he underwent. Once they have all the results they will know what Chemo regime to start him on. Make sure you have lots of support around you to support you through this process, its hard work.
Coincidence.... I was just reading about the possible fertility issues, and wondering how to approach this with a 16 yo lad. Did your son have a lot of treatment? What was the treatment or checks once it was clear? Excellent positive news though.... must make being a grandad even more special for you.
Happychap
I have read some more tonight. Most it appears are treated and your own story gives a lot of hope.
My son has been in great spirits today: I have often said kids are far more resilient than we ever give them credit for. Laughing and joking at dinner like we normally do was a good thing. He has told his mother he does not really want to talk about thenpossibilities with her until he knows more. I have said we will not tell anyone outside of our home until we know more.
I walked the dog after dinner. Alone with my thoughts was difficulty. Glad it was raining as I shed a few tears. And yet when I am home, I feel stronger and feed off of his resilience. Perhaps I over think stuff, but having support is important..... I can see that.
He walked to college today rather than get the bus. He wanted time to think and took it. That impressed me. He is talking more in the last 24 hrs than he ever has I think. I feel immensely proud he is coping so well (outwardly anyway).
We have one side of the family coming this weekend pre Xmas........ then we visit the other side next weekend. I partly dread that as we are going to have to tell family and they will naturally want to ask questions.
CT scan tomorrow. That will be odd as they obvs won’t tell us anything.
I have read some more tonight. Most it appears are treated and your own story gives a lot of hope.
My son has been in great spirits today: I have often said kids are far more resilient than we ever give them credit for. Laughing and joking at dinner like we normally do was a good thing. He has told his mother he does not really want to talk about thenpossibilities with her until he knows more. I have said we will not tell anyone outside of our home until we know more.
I walked the dog after dinner. Alone with my thoughts was difficulty. Glad it was raining as I shed a few tears. And yet when I am home, I feel stronger and feed off of his resilience. Perhaps I over think stuff, but having support is important..... I can see that.
He walked to college today rather than get the bus. He wanted time to think and took it. That impressed me. He is talking more in the last 24 hrs than he ever has I think. I feel immensely proud he is coping so well (outwardly anyway).
We have one side of the family coming this weekend pre Xmas........ then we visit the other side next weekend. I partly dread that as we are going to have to tell family and they will naturally want to ask questions.
CT scan tomorrow. That will be odd as they obvs won’t tell us anything.
happychap said:
As you’ve probably realised, you’ll all now be in your own little world, this is now your reality until the Dr can start to give you more information. You need to consider if keeping this from your families is the best option, either way some of your families will understand if you decide to withhold the situation and some will feel they would rather have known as soon as possible to enamble them to be available to you and your son. Youl will find the words to break this news, don’t concern yourself about protecting others and thinking you’ll spoil this time of year, I’m sure on balance they will want to be around for you.
I feel slightly selfish being in my little world. I am normally so pragmatic and this does feel alien to me. I hope it will become clearer after next week.As for the family - my son is scared, obviously. I really see your point but ultimately I see this battle with him in charge and us supporting. It is his decision to hold off telling family until next week. Right or wrong, I support that, and if any family members do take umbrage (and there will be one or two) then I will fight that battle for him. Family will support him and be there - but it has to be when he is ready. And I had not thought of it being at this time of year and affecting their Xmas - maybe because our Xmas is a quiet one this year - just us.
We like humour - sometimes my humour is a little left field - probably being in the forces for so many years causes that! But that rubs off on the wife and kids in a good way - it is a coping strategy that works.
Stuart70 - thank you. I thought long and hard about posting here - it does help typing stuff out.
Irdisco - thank you too.
happychap said:
I too am pragmatic, I found being in this situation scary as I felt I could do very little. I had no choice but to trust the Drs who had the experience and expertise in this area. Do you have any other children, if so be mindful of the impact this has on them.
Yes - he has an older brother, and I have a daughter with my current wife. We are very mindful of the impact on them but it is a good point. The youngest (daughter) is not really aware yet of what is going on. She is 10 - mum is sitting down with here later this afternoon while i am at the CT scan.Faz50 said:
Our thoughts are with you and your family.
My son was diagnosed with Lymphoma when he was 12. He turns 18 this weekend and you’d never know he was ever ill. I’m now worrying about his drinking this weekend rather than an illness!
Got his all clear this year and just can’t fault the treatment over the years. It was a massive shock and I’ve no idea how he coped and it took all I had to help him through it but we are dads, its what we do.
He was treated at Alder Hey and the facilities were simply amazing and made his treatment that little bit more manageable.
I don’t know you or anyone else on PH but if you ever need anything then please feel free to direct message me.
Best wishes.
Its great you are worrying about drinking - seems almost normal! I am taking great hope from the numbers that are contacting me and saying it has all gone well for them. Thank you.My son was diagnosed with Lymphoma when he was 12. He turns 18 this weekend and you’d never know he was ever ill. I’m now worrying about his drinking this weekend rather than an illness!
Got his all clear this year and just can’t fault the treatment over the years. It was a massive shock and I’ve no idea how he coped and it took all I had to help him through it but we are dads, its what we do.
He was treated at Alder Hey and the facilities were simply amazing and made his treatment that little bit more manageable.
I don’t know you or anyone else on PH but if you ever need anything then please feel free to direct message me.
Best wishes.
Edited by Faz50 on Thursday 7th December 08:27
ReallyReallyGood said:
Nothing to add except to say that i wish your son a speedy recovery, I can’t imagine what it must be like for him (and you) to deal with it. The stories here of a complete recovery are welcome to read also.
Thank you. He is really strong at the moment. Outwardly completely unphased by it all - I asked him this morning how he has slept - he answered fine in a tone like he was wondering why I would ask!happychap said:
My daughter had just turned eleven and starting secondary school which can be a difficult transition on its own. We made the School aware of the situation and they were great. In hindsight we felt later on that we hadn't been available to her as maybe she needed. This is where other family members can be useful to offer this additional support. You have a lot to deal with at the moment, but don't feel you have to do this on your own.
Similar again - my daughter is in yr 6 - so leading up to the secondary school transition. She has only just been through a school change in the summer when we moved due to my work! She is a typical girl though - 10 going on 18!MYOB said:
So sorry to hear your news. This isn't something anyone should go through, certainly not a young child and parents.
I'll keep an eye on this thread and look out for progress.
Could I make a suggestion, that you're obviously free to discard. I would be inclined not to let family know with your son present. There would be so many questions, possibly a few tears and some frightened and concerned faces. Your son is still processing and may not need this. Just a thought.
A very good point. As we are holding off telling them anyway at the moment, I have not really considered how we do eventually tell them. I will have a think on this over the weekend. I am hanging on to the hope there is nothing to tell.I'll keep an eye on this thread and look out for progress.
Could I make a suggestion, that you're obviously free to discard. I would be inclined not to let family know with your son present. There would be so many questions, possibly a few tears and some frightened and concerned faces. Your son is still processing and may not need this. Just a thought.
C0ffin D0dger said:
Every parents worst nightmare being told one of your kids is seriously ill. You have my sympathies.
The key I would think would be to try to keep things as normal as possible but to also make sure he's getting the attention, reassurance and love he needs. I'd also not want to be the helpless one so would be doing as much research as I could, being mindful that doctor Google is going the throw up a lot of worst case scenarios, and then go in for a proper discussion with the consultant as to treatment, outcomes, etc. and finding out what you can do to help.
It's in situations like this that the NHS really does swing into action especially where younger patients are concerned but do stay on top of them and make sure you never leave an treatment or consultation without a clear understanding of what is going to happen next so you can ensure that things do progress as expected. The good news is that lymphoma is one of the more treatable forms of cancer, the prognosis in the day and age can be very good, and gets better all the time. Things have moved on a long way in the last ten years or so.
It's going to be a long and hard time ahead for you all but stay positive and look after your son the best you can. Sending my best wishes and good luck to you and your family.
So far, the NHS have been amazing. We are under QA Hospital in Portsmouth and they have had some proper bad press recently. My instinctive immediate thoughts are the bad press is unfounded. We will see how that moves forward.The key I would think would be to try to keep things as normal as possible but to also make sure he's getting the attention, reassurance and love he needs. I'd also not want to be the helpless one so would be doing as much research as I could, being mindful that doctor Google is going the throw up a lot of worst case scenarios, and then go in for a proper discussion with the consultant as to treatment, outcomes, etc. and finding out what you can do to help.
It's in situations like this that the NHS really does swing into action especially where younger patients are concerned but do stay on top of them and make sure you never leave an treatment or consultation without a clear understanding of what is going to happen next so you can ensure that things do progress as expected. The good news is that lymphoma is one of the more treatable forms of cancer, the prognosis in the day and age can be very good, and gets better all the time. Things have moved on a long way in the last ten years or so.
It's going to be a long and hard time ahead for you all but stay positive and look after your son the best you can. Sending my best wishes and good luck to you and your family.
As for Dr Google - we have been drawn to two particular sites - they both seem to be very straight to the point. I assume Macmillan is accurate!
https://www.macmillan.org.uk/information-and-suppo... and
https://www.lymphomas.org.uk/
And I just want to take this opportunity while we get ready to head off for the CT Scan this afternoon, to thank you all for the kind words of support. From those who have experienced first hand, to those who have experience from the fringes - it is great to have some connection outside of our little bubble. It is great to get other peoples opinions and also to have my thoughts either backed up or confirmed as barking mad!
I don't do social media in the normal sense - the wife and kids do and it mostly drives me mad. But when PH is sensible it is a great sounding board.
Guys - thank you again. It means a lot.
CT scan done. My god he is so strong about all this. Not phased at all. And because we arrived early (traffic better than we anticipated) we were put through early.
He talked about this and that, expressed a wish to deal with each stage as we hit each stage. He laughed and joked especially at the Cornish Style Pasty in the vending machine.
Wendy is our specialist nurse who came and had a chat while we were waiting. She too remarked how calm he is! She is going to be the lynchpin in alm this.
Anyway nothing more st hospital till Monday for the PeT scan.
So dirty Chinese takeaway tonight after I take the daughter to trampoline club!
He talked about this and that, expressed a wish to deal with each stage as we hit each stage. He laughed and joked especially at the Cornish Style Pasty in the vending machine.
Wendy is our specialist nurse who came and had a chat while we were waiting. She too remarked how calm he is! She is going to be the lynchpin in alm this.
Anyway nothing more st hospital till Monday for the PeT scan.
So dirty Chinese takeaway tonight after I take the daughter to trampoline club!
200Plus Club said:
Good luck and all the best wishes to you all. When he's hopefully feeling well and able to I'd be more than happy to offer him as a cheer up a passenger ride on a Trackday perhaps if he's into cars. Sounds like it's been caught plenty early and I hope all goes well at this worrying time for you.
My son is really into cars - so much so he is at college studying a BTEC L3 in Motorsport Engineering. While this first year is very "mechanics" based (stripping engines etc), next year takes him into engineering - developing racing cars, aerodynamics and more so onto the green racing aspects - think hybrid, battery packs, Formula E etc. They are offered exposure to race engineering from grass roots all the way through to F1 and they go to the NEC in January for the Autosport Show. Also apparently there is a prize at the end of the year to carry out a weeks work experience with Mercedes F1.Now, how much actually comes to fruition obviously I am sceptical but the college is on an airfield - they develop their own car next year as a group and will fire up and test on the run way. He is not an academic, struggled somewhat at school but has now I think found his thing. I would have loved this to be available when I was his age!
I suppose what I am saying is a massive thank you for the offer as he would absolutely love it. I cannot express how touched I am, not only at this, but all the words of support, here and privately that have been sent.
throt said:
You must be so proud of him.. Strong lad..
You enjoy that takeaway, can't beat a good chinese..
Patch 1875, Throt, Garythesign, NDA and rustyUKYou enjoy that takeaway, can't beat a good chinese..
Thank you so much for the support. I spoke earlier about being in our little bubble dealing with this. I find it humbling that people who don't know us are so supportive.
The Chinese was awesome - disappointed I forgot to take a photo and stick it in the dirty takeaway thread though!!
Yesterday wore him out, so I worry for the possible harder days ahead. He was slightly disappointed in me yesterday as I would not let him watch I'm A Celebrity downstairs! "But I'm ill he said"!! So he went to bed and watched. He did say he needed an early night if he was going to kick this f
ker in the ! I don't normally allow bad language from him or my eldest - but I thought this was funny!200Plus Club said:
If you have an airfield accces we have a few friends with nice cars. I'd be more than happy to rustle up a few, we've done things like that before or organise something else when the time is right for him. Messaged You!
I'm thinking McLaren 650s, v10 and V8R8 , 997 turbo and a few other bits n bobs :-)
Totally awesome thank you. Love how you phrase them bits and bobs!!I'm thinking McLaren 650s, v10 and V8R8 , 997 turbo and a few other bits n bobs :-)
Tumbler said:
The Macmillan website is great for reliable information and the forum is good for support, they also have an area where you or your son can blog.
Tumbler - apologies I did not mean to ignore this. Thank you for the info.... I have found the Macmillan site far more ‘technical’ than the lymphoma organisation site.... probably one to move to when I have more knowledge.br d said:
All the best to you and your boy, seems he's in just the right place to get cracking and sort this out.
I've got a 720S coming in March, if it's after that then stick me down too please 200Plus.
This is awesome.... thank you so much. You must be so excited for your new arrival!I've got a 720S coming in March, if it's after that then stick me down too please 200Plus.
This weekend has been up and down somewhat. Bearing in mind we still don’t really know for definite what this is, Friday with college, and Saturday with work, Jack got through with a great sense of humour and was really positive. I even took him out to get some of his Xmas shopping, and he was very chatty.
Today he is polar opposite. Although he has gone to work, he is down. He is obviously thinking today, and it’s this that worries me more as he seems to withdraw into himself. I need to balance keeping him chipper with allowing him time to do his thinking. I see it as a processing day..... I just hope he is able to tell me as much as he wants to about what he is thinking about.
Anyway, big roast dinner later when he is home. He enjoys his Sunday roasts!
Today he is polar opposite. Although he has gone to work, he is down. He is obviously thinking today, and it’s this that worries me more as he seems to withdraw into himself. I need to balance keeping him chipper with allowing him time to do his thinking. I see it as a processing day..... I just hope he is able to tell me as much as he wants to about what he is thinking about.
Anyway, big roast dinner later when he is home. He enjoys his Sunday roasts!
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