Cancer talk may not be for everyone

ben2026

Hello there I have bad mental health I suffer badly with my depression and anxiety I'm on the strongest medication for both and been on both the last 9 years

10 weeks ago I come across a little lump on my tongue that I thought was a osser so try things like bonjour and other moths things it didn't go away it got bigger and bigger I want to my GP about this he give me antibiotics for it and as it was given me pain some pain relief as well I took the 2 weeks of antibiotics it got bigger and a lump as come along to the other side of my tongue but small like the 1st one started so I go back to my GP given me stronger antibiotics nothing as happening now the lump as split and gone white and yellow the other lump as also gone white and got ABIT bigger I don't think anything more about it to last Friday night I get a lump and the most intense pain and swelling on my throat and tongue I have ever had I have 2 lumps in my neck that is showing as it was so swollen I honestly did think I was not going to make it to morning I go doctors on Monday he told me that you may have cancer that as spread to your throat from your tongue this news as put me in shock my anxiety is all over the place I get a phone call from the hospital nose throat and ear teams in there cancer part saying they booked me in for this Thursday coming for a meeting I'm scared out of my mind now and got my throat going tight and then stopping all the time I googled the lump and seen alot of lumps that is cancer and looked at the stages and if it's right from the NHS page I have stage 4 tongue and throat cancer and the next part of the body it goes to is the lungs

If you have anything to say that can help or been and had this and got over this please message me I'm worried and just looking for something not helping relax mind thank you

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Rosie_Scope

Hi @ben2026, that sounds really uncomfortable and worrying, I'm sorry you're going through this at the moment. MW123 has given a really thoughtful answer, so I'm not sure I have much more to add after their kind words. But I hope the doctors are able to give you some answers at your appointment. Whatever happens there is support out there to help you through, you won't be alone and we're here if you need to talk about things.

Is there anything that you might be able to do to distract yourself a little until the appointment? I realise that can be really difficult, but even just a couple of hours of respite from thinking about it might help you relax and rest your mind. Things that require a bit of focus like doing a craft, reading, or playing a game can help take your mind off things.

Wishing you all the best, hope your appointment goes well.

ben2026

Hello @MW123 and @rosie_scope

Thank you both for your replys mw123 I'm really am sorry to hear you had to go through everything you did having cancer is scary on its own but at a time of losing your mother and being days away from Christmas did you feel you did the right thing not to say anything at 1st as IV not told alot of people or family I don't know how to break the news how did you as of now I don't know if mine is cancer but everything points to it how long have you had yours sorry for getting asking a personnel question how did you know it was the right time to say about it to family members? Am I best to wait to see what the hospital say 1st don't make me feel any easier about it waiting to know I wish you all the best and good health I hope you get past this and everything is ok for you thank you for your message

Hello there Rosie again thanks you for your message I am extremely worried about this as I z back there IV not told family about this but doing this on my own is hard but I don't want them to worry to I find out what it can be I thank you again for your message all the best to you

ben2026

Hello there everyone I have 4 lumps 2 on both sides of tongue and 2 on the same side on my throat now this is what I don't get my throat keep swallowing up and going rock hard and painful on my right side and I feel moving like bubbles in my neck it's weird feeling when it happens I became extremely tired and light headed like I'm going to pass out this as only happened 2 times one in the middle of the night and I thought I was not going to wake back up when I did get to sleep and today out of the blue is this normal as I can feel my glutes in my neck and it's moving but the other lump don't really move but get more harder the more my throat swelling up I been also getting a sharp pain in my tongue on the lump t the back behind and under my tongue IV been on antibiotics now 4 weeks and it's not going down or getting better spit can't be a virus or bacteria thing IV also seen from last night I got little small dots on my inner button lip and IV had a cut ony lip that been there from the same time my 1st lump appear over 9 weeks ies ago

ben2026

If this ends up being cancer I been told that I have to go to and from the hospital alot but I don't drive as I have other health issues which as stop me from.driving but the bus costs 10 pound each time I only get benefits right now is there a way I could get more help as I get the bear minimum from benefits and it's hard to get enough as it is without extra costs thanks

Rosie_Scope

Hi @ben2026, if you find you need to be travelling to hospital a lot, the hospital may have transport options to help you get to appointments. You'd just need to speak to the patient transport team to see if they can help.

There's also a scheme that helps people on low incomes, so that might be worth looking into:

Healthcare Travel Costs Scheme (HTCS) - NHS

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ben2026

Sorry I not been on and thank you all for your help and messages and I'm sorry wm123 for going through everything you did it much of being hard and exhausting at the time I hope your doing better now then before

Update I had my meeting today with the nose head and throat team they put me in a biopsy that I had today now I thought I was only having the one but as I have had a cut on my lip for the last 15 weeks the doctor took one look at it and told me he's never seen this level of deep infection or worse on a lip before and did a biopsy on it as well I had the biopsy on my tongue and lip at the same time now all the medication that nums you as complete gone and boy I'm in alot of pain right now with both I also been put down for a scan that as to happen within 2 weeks timeframe as it's spread they told me they don't know if it is or isn't cancer it can be and spread or it can be a really bad infection but from the way they gone ahead with everything so fast telling me it's the worst and it's cancer as time is not on my side as it's all ready spread in only 15 week from the first thing I got what I thought would be nothing and that's the cut on my lip then the lump then my neck lump but I well soon see I'm extremely anxious about it but i hope that I'm in good hands I keep you all updated when I have more information thanks

ben2026

Thank you all update if anyone is still interested

I had my scan today on my neck that took about 20 minutes for them to do the doctor did all my neck and keep going back to one of the place I been getting swollen up most when it started on my throat I never told him about it but I'm guessing he see something or more then likely the hospital had it on the notes but he push deep n abit hard there it's made it swollen up again and I feel pain ever time I drink or try to eat something that is alot harder now I have a my tongue and lip from biopsys my lip as been the painful one as got to stop it getting dry not as easy as you think when you had it on your mind and anything that go on it even a drink is painful lol fun days but joking aside I hope I get the results they did book it in for the 10th of next month but I'm hoping that because they did them a lot sooner then planned that the result be back before that as she z that it's more likely when on the phone today so I let you all know when I do but in the meantime if anyone as had cancer how did you deal with it as it gone now have you still got it are you like me waiting which is the unknown I fine hardest

I know wm123 as deal with this and I wish her all the best in life btw I'm not sure if you did put it back down you still have it as it gone now and how you feeling now years later then when you 1st fine out about it all

Wishing everyone all the best please all keep safe and enjoy life at it's fully

ben2026

@MW123 thank you for your message I can't even begin to even imagine how you cope going through any of what you did just reading what had to go through was a hard read I'm happy you managed to get by it all doing alot better now even without the transplant you needed please keep up the good fight and I know it's hard to

As for me yes I'm.trying my best to wait and see but it's the unknown that is more stressful then knowing for me right now as I still being silly looking up people that as had cancer on there tongues and it's not helping but I still look I don't really know why but everyone on there is like end of life with if I don't have this done I be gone in 3 months 6 months 2 years and that's just a couple of them and that's is scary to me but on the other hand I think if it's not cancer then what is it why my body being this way well as a update the lumps I have have got bigger on both my tongue which as now gone over the biopsy cut as they did it under the lump and the other lump on my neck as is now seeable and that's in 6 days as it's bank holiday I not told them as for yet I got a feeling in my guts that I going to get a phone call tomorrow and when I normally have them feeling it happens so we see tomorrow

I am thankful and grateful that you come across my post and had this conversation with me as not alot of people have

gussiefinknottle1

Ben, I think I might know something of the anxiety you’re experiencing but please take a moment to remember that it’s not certain yet and that treatments may be better than they were.

I don’t want to hijack your post but My partner of nearly 40 years was diagnosed with a rare blood cancer called Chronic Myelomonocytic Leukaemia last year and is having chemotherapy to prevent it from getting worse. He may need a bone marrow transplant in the future if it stops working and is still healthy enough to have it.

If it turns out that you have cancer and need treatment you might qualify for hospital patient transport so you could look into this, you might get it because of clinical need or because of your mental health as this service is not just for patients who have mobility issues.

Your current circumstances are very unlikely to be unique and almost everyone will suffer some kind of anxiety under these circumstances. My other half had some EFT sessions and they have helped him after initially being told that he might only have 18 months to live. 12 months on and his blood counts have improved significantly, he hasn’t been to A&E in 7 months and hasn’t needed a weekly platelet transfusion for 6 months. You wouldn’t know he has cancer and he seems relatively healthy right now. Yet last summer he was very poorly and looked like he was waisting away and I genuinely thought that by now he might’ve been getting end of life care. It just shows how wrong the unqualified can be (and I’m one of them)

ben2026

@gussiefinknottle1 thank you for your message and I'm sorry to hear about your other half I'm happy he is doing alot better now of days and that must of been hard to take being told you only have 12 months to live Im wishing him all the best and long life ahead

@MW123

Thank you for your message I appreciate you coming back yes it is the unknown that is the hardest but please can I ask how did your doctor tell you that day because I know on the 10th I'm going to be in a waiting room and being called in and just not sure how they tell me like would they come out with it as it is or talk about how they did the rest and what they seen from them

What ever I do have as got worse my throat is swollen up alot more I have pains in my chest and now ear and jaw line the lump as got bigger on my tongue and so as the new lump on my shoulder blade so where ever this is it's on the move I been put back on antibiotics but it's not helping so if it is cancer it's moving fast

gussiefinknottle1

Hello again Ben,

MW123 had a better experience than we did with his consultant.

My other half got very sick very quickly last February. After being discharged from hospital they did numerous tests and we had an appointment with a Haematologist for the diagnosis, he was lovely and very encouraging, but he referred my OH to a specialist at another hospital who was completely the opposite!

We came home with the impression that chemotherapy probably wouldn’t stop the cancer getting worse, that a bone marrow transplant was the best option but it was extremely risky and that it had very little chance of working and even if it did work the cancer would probably come back and that it would only give him 5 years more (he’s now 62) and that there was a possibility that he might only have another 18 months! (You can imagine the flood of tears the next day) we have now decided that this consultant is a Ba….. (insert nasty name)

His response to the chemotherapy seems good and the haematologist is satisfied with his blood counts now,He has gained some weight and looks healthy. He met someone else who has had CMML for the last 3 years and my OH just wants to keep going with the chemotherapy for as long as possible and won’t even talk about a bone marrow transplant (he’s on the autistic spectrum but undiagnosed) I can’t even guess any further what’s going on in his head.

How long the chemotherapy will continue to suppress the CMML is unknown but hopefully as long as possible with the hope that if it does start to fail that a bone marrow transplant will still be possible.

ben2026

Hello everyone thank you all so much for all of your comments and support I really appreciate everyone

I do have good news from my results I don't have cancer on my tongue or throat which was a big relief

But they did fine something in my throat it's not cancer but they unsure of what it is so I had a blood test and next step is for a MRI scan they feed all the lumps and can feel that they are all there and the last scan did show a lump as well she thinks it could be related to my sliver glands as she thinks that they are blocked and that's what made the lumps in the area that they are I got a MRI within the next 3 weeks with the results of it and the blood test she sometimes soon it all be looked at

As for my tongue and that lump she did a full look over and I have a tooth that is digging at that area and needs it taking down and they going to give me a month gard for the next 4 weeks day and night then on only nights to the next appointment but yes it's not cancer

I want again say thank you and I wish you all the best and happiness 😊

gussiefinknottle1

hello again Ben, I’m so pleased that you got a negative result for cancer, what a huge relief. You must be feeling like a weights been lifted off your shoulders.

I wish you well.