Hello all - about to get on the roller coaster!

Hello everyone,

I have been looking at the forum recently and have commented here and there but thought I would do this properly.

I am 52, mother of 2 (15&11) and very happy M&S lady!! (with terrible sense of humor so please excuse me in advance)

A few weeks ago I found a quite large lump in my neck - seemed to spring from nowhere but had just lost a stone so not sure if it had been hiding under fat! 'It' is called Gerald, apologies to anyone with that name but like an unwanted guest at a party that you cant get rid of.

The last few weeks have been:

• 1 GP at walk in centre
• 1 ultrasound & fine needle biopsy
• a consultant telling me I had cancer in neck lumps (there are 3 Geralds) but could not see primary - however he did think possibly right tonsil harder than left?
• a PET scan
• a CT scan
• an MRI scan (why is it not 'a' MRI scan??)
• another consultant apt - no primary on any scans, weak HPV+ cells so most likely tonsil / base of tongue.
• a dental / max fax apt, imprints for teeth guards - no teeth need to be removed prior to radiotherapy - yay!!

And I wonder why I am shattered!!

The NHS have been amazing at the speed this has moved.  I think it is so much better now than it would have been last year.

On the whole I have been positive with the very natural emotional upsets.  Funny how you find yourself trying to be positive for other people so they are not upset, or consoling someone who is crying cos you told them you have cancer but you are ok (eye roll emoji!)

So, I have pre-op tomorrow and then all being well (wallace from wallace and grommit face - don't really want it at all of course!) Dr Robot will be removing both tonsils, strip from base of tongue and anything else he takes a shine to whilst he's in there next Wednesday.  Following recovery from this, I will have chemoradiation to kill off b*****d Geralds who are not suitable for surgery as 2 are a bit embedded and 'fuzzy' around the edges.

Phew indeed.

In some ways, I don't think I have really caught up with what is happening to me.  Maybe I am in shock as a lot of the time I feel too OK if that makes sense.  I am appreciating this time as being the best I am going to feel for a while though - I am under no illusions about the brutality of the treatment (very sad face).  I love the fact that everybody on here understands so well and nobody will ask me (early days) if I'm sure it's not mumps - yes really!!

I think I have found it quite interesting how people receive different treatments, levels of surgery etc.  I have decided to just put my faith in the lovely team I have and just let them get on with it - I do question but figure they have more experience of this than I do!  

Have been picking up lots of tips in here and will keep coming back on for help, thank you all so much for being on here to support us who are just beginning this journey, it really is invaluable and so appreciated,

Julie xx

UPDATE 9/4/21

Both tonsils and base of tongue removed last Wednesday by TORS.  One night in hospital then home.  All apparently went as planned.  Original suspicion of right tonsil primary not confirmed at time, hence left tonsil out too though they did state that the right one felt firmer.

Recovery not too bad.  Definitely best day so far today.  Have actually been out to a garden centre and had my first takeaway latte in about 10 days - bliss - made me think of Dani's blog title!  Have managed mostly on paracetamol with just a couple of codine thrown in.  Probably the worst bit for me was the lack of quality sleep, definitely made me a bit low here and there.  I am going to get myself a humidifier ready for radio/chemo, could have done with it for this.  Other than that the earache was a real (pardon the pun) pain, most miserable   Eating and drinking have been tedious but manageable.  Had to adapt a different swallowing technique to allow for slightly disabled tongue but that has really improved too.  Lack of usual copious amounts of talking very challenging though the kids are loving it!  Thank goodness for texts!

Should have had follow up appointment today but will now be next week as not all results were back.  Really hoping that they do find the primary but hey ho.  Know 100% that there will be chemoradiation as lumps in neck need to b****r off but not sure of amount of sessions yet.  All in due course.

till next time!!!

Julie xx

funny how quickly we forget things - just realised I didn't mention the alarming bleed / ambulance called night but it stopped of it's own accord and they were amazing!  Reckoned a scab had come off a bit prematurely 

UPDATE 17/4/21

Had consultant appointment yesterday.  Really happy to say the primary was found and removed during surgery - YAY!!!!!!  Apparently it was right at the back of the tongue where it joins the tonsil (didn't know it did!) and was just 6mm.  When I asked if they had got clear margins he said they had got more than was needed.  Big phew!   Just shows how this way of dealing with these cancers is so good.  Nothing had shown on a scan, the consultant was suspicious of my right tonsil, if I had only had biopsies on my tongue they could have missed it completely, plus it would have involved more than one surgery.

Now waiting for an appointment with the oncologist to plan the chemoradiation to get rid of the neck lumps.  Funny (not really) how huge they are compared to the piddling primary .  Really hoping the treatment can now be kept away from my throat as much as possible seeing as how technically there is nothing there now.  The consultant did say something about zapping the base of the tongue just to be sure but............ummmm.

Peased to say I have had a good recovery from the surgery.  Tongue feels completely normal, swallowing is great, ear pain has gone.  Only thing I still can't really do is yawn but sure that will come.  Eating is back to normal (oh dear) so the weight I did lose (and needed to) is now back on - oops.  Going to try and have a bit of a health kick between now and mid May to be as fit as possible for the chemoradiation!

Julie xxxx

UPDATE 1/5/21

Have had my appointment with such a lovely oncologist, seemed to have all the time in the world for me!  Went through the scans to look at where neck lumps are and discussed how the radiation will target them, affect nearby tissue etc.  He completely got me and also showed me the photos of my surgery being done!  Not for everyone I know but I found it really interesting!  I will be having the usual 6 weeks of radio starting 12/5 but will be having my chemo in just 2 doses - eek!!!!

Last Tuesday I went and had my mask made and my planning scan done.  Had a right wobble before the appointment, phoned my friend who is a nurse and basically cried down the phone at her !!  Felt much better afterwards and got through the whole thing no problems.  I think it was just the fear of the unknown.  I knew that if I had problems wearing the mask it was going to be really tricky for the radio.  As it is I now know I can do that bit of it - phew!  A bit underwhelmed with my much anticipated tattoo.  Suffice to say I wont be getting it turned into a marvelous work of art as I can hardly see it 

Next step, appointment on Weds with the oncology nurse before starting treatment the following week.  Have to say if I'm honest, I am really fearful of the chemo, especially in such a large dose.  I know it's irrational, as fear often can be, but hoping I don't just have a massive heart attack on the spot or such like.  My nurse friend assures me it's highly unlikey and I will be very well monitored - hey ho!!!!!!   Any reassurance very welcome indeed!