Sinister Neck Lump and Mutant Tonsil

I managed to speak with the CNS today, I asked about the discrepancy about T2N1 and the T2N2a that was on my letter, she checked and apparently at the MDT I have been discussed as T2N1 so we are both baffled as to where the T2N2a comes from. tonsil tumour was 21mm, node is 28 x 22mm. Hopefully will clarify on Thursday.  Im still terrified and absolutely convinced it has spread with all the pain that I am in, but keep telling myself that the MRI and ultrasound results do not point to this being the case and SCC tends to stay local.

Finally got some sleeping pills as had no sleep for 3 nights.  Roll on Thursday, I need to know.  They have said that will try to claw back some time due to being messed about with surgery but it will be tight.  At the moment they are putting people forward for RT without dental work due to covid, with the assurance that any future dental work will be undertaken in the hospital, wish me luck

Pamela it sounds as if it will be ok. 
I wouldn't worry about the lymph node discrepancy. Your RT plan will be made in tandem with all the scans and is largely done with sophisticated algorithms. 
There is a sort of standard protocol for extracting teeth that have a chance of causing problems in the future if they are in the line of fire because jaw bone circulation compromised by radiation can cause non healing problems with extractions. However there is lots of data to indicate that it actually makes little difference. 
I had to have a wisdom tooth out post RT on the side that was treated and I’m fine. 
Good luck for Thursday and let us know how you get on. 

Pamela 

Breathe deeply you will be fine ,like you say SCC. h p v plus as well are all excellent pointers .Honesly once you get your treatment plant things move very quickly ,pet ct scan mask and you will be on your way .The machines are so precise nowadays don’t worry,easy for me to say I know .Let us know how Thursday goes.

Onwards and upwards Hazel xx

I feel completely abandoned, Having 30 sessions of radiotherapy and 6 sessions of chemo running concurrently.  I have not to see a dentist, all they asked was are any teeth wobbly, not been to dentist in years as too scared.  Not to see a dietician, not to see a speech therapist.  Given my medical condition and the fact that I will be on my own they said they will think about a PEG but don't think its a good idea, hang on a minute, if Im unconscious I can't ask for an NG tube, they said I would be fine as only irradiating one side.  Said I will be able to eat, I laughed and said I don't eat at the best of times so can't see myself making a meal when I'm feeling rotten. Oh get ready meals they said, may be possible if I could get food delivered but I've had one delivery in 12 weeks and not been able to get another. Asked to go on the vulnerable list due to chemo so I could get deliveries, was told I don't know how that works!  The final straw is that treatment will be at another centre due to covid and the clinical team are not based there, so no support and er no patient transport, so I have to drive myself, that should be fun when the morphine kicks in.  Im afraid all respect for the NHS that I have worked for for many years has diminished.

I am not going to see my kids for 12 weeks, will miss my daughters birthday, just feel so alone

Hi Pamela

deep breaths , take it in baby steps .Ok you aren’t having treatment there but elsewhere I would be surprised if a centre that does chemo and radiotherapy don’t have access to dieticians and swallowing team. If yiu can say where let us know will look into it..Intoo was told I was having 75% radiation on one side and 25% on the other but after 3 weeks I needed a n g tube as swallow was difficult. 

Re the vulnerable list I think  your G P  practise with you having chemotherapy should be able to put you forward on the shielding list ?

I have booked Tesco delivery slots haven’t been near a supermarket in weeks you can try to get in early if those and stock up , I seem to think Tesco slots go live on a Monday morning for about 2 hours for delivery in 2 weeks time just a thought thentime they go,live is 0700 on a Monday if that’s any help .

do you have a Macmillann nurse ? Not being a downer but I doubt yiu will be able to drive yourself and especially  after chemotherapy you are advised not to drive . Are taxis a viable alternative  don’t know how far you will be away ,do you have any other relations who could stay with you and help with driving ,know covid 19 is an additional worry. sorry Pamela yiu don’t need these obstacle s but yiu will need some help 

Hazel x

Hi

Like Hazel says, take baby steps. We will help you. 

Initially you may manage the driving but not from about halfway I would say. This issue must be resolvable. Friends, family, colleagues? If not then tell the hospital you need help. Alternatively there’s local charities do hospital transport.

Ask your GP to make a referral to the community MacMillan nurse. He/she will be able to help and sort all of this.

Children - do they absolutely need to move out? I know a few people who have had this treatment with young children who have stayed in the house and gone to school.

Id say you should push for a feeding tube but regardless of that you can still drink the all in one nutrition drinks like Fortisips and Ensures and I’m sure they’ll be easier than ready meals.

I feel your pain and helplessness as I’ve felt that too. But we managed and you will too.

Lets look at it all again tomorrow with a fresh pair of eyes and I’ll get my thinking cap on.

Night night

Hi Pamela

Such a terrible time to go through this and lockdown will certainly not have helped. I have struggled to get shop deliveries to start with but Asda (if you have one near) release their slots for click n collect throughout the day-if you have someone who can collect..

I am 7 months post for tonsil cancer, 30 RT sessions and 2 chemo. RT mainly on one side with smaller amount of treatment the other side. I did actually get through without the need of any feeding tube despite them saying I probably would need one. So it was doable for me, hoping the same for you.

As said by others, hopefully your GP can assist with getting you on the extreme vulnerable list and then a supermarket priority list. I've only had phone consultations for last 3 months but, dieticians/consultants and speech have all been in touch. Perhaps Macmillan nurse would be a good person to voice your concerns to.

I don't think I saw your diagnosis post, so I hope I'm not speaking out of turn and something above might help. Wishing you all the very best.

Tricia

Good evening Pamela, it sounds to me if they are rushing you through without thinking about about the side affects, majority of people have their teeth checked in case they are in the way of the treatment area, i would strongly push for a PEG as its a great opportunity to fit one as you will be unconscious, even if you don't use it . They seem to forget it's you having the treatment, they will not have to suffer any discomfort as you will and they dont know how you will react to the treatment. Maybe this other centre will have a dietician and speech and language therapist as you will most probably need one. 

   You are starting your journey during a difficult time for the N.H.S with the coronavirus and im sure they will do their very best in getting you through it all as they did with me when i had cancer a few years back. Maybe you could speak to one of your team about your concerns as i know i would have done. Hope you manage to get things sorted ,take care. 

                                                                                                          Chris xx

Pamela 

tough time for treatment...

Going into details
Dentist is becoming less critical now as last gen linear accelerators make less collateral damage So if you are not aware of any serious issue most probably you don’t have any reason to worry

Dietician is important, but look you have 6 chemos That is a lot frankly speaking Cisplatin will cause aversion to food much earlier than pain from radiation So your diet is basically anything you might be able to eat without vomiting Room temperature, small portions, soft, calorie reach is the basic idea That is the diet You drop anything that causes too much pain Plus as many Ensure bottles as you can buy You can live on it for a long time Many months actually 

It is really scary, I know, but everybody’s reaction is kind of unique I had no PEG and no morphine even though I had chemoradiation after surgery which is nastier I was working remotely all the time, driving, going shopping etc so hopefully you would be lucky as well

also speech therapy is more about post surgery conditions not pure chemotherapy or radiation 

Im feeling slightly better about things today, I have been on to my GP and managed to get onto the vulnerable list, though still not able to get a delivery.  

Ive found a local volunteer centre that although they are not providing a transport service at the moment due to covid and most of their volunteers being vulnerable in their own right, however they are trying to get it back up and running, I don't start till 6 July so fingers crossed. Also going to try adult social services for some help there.

Ive contacted my neurological team who insist RT can't start without a way of ensuring I have fluid on board, I will let them argue on my behalf.

Ive insisted on a meeting with the speech therapist re exercises as this affects another medical condition I have, collagen disorder where my joints including my jaw dislocate on a frequent basis, I want to start now rather than waiting till I have a problem.

Ive asked the CNS to set up a meeting with the hospital dietician before the treatment starts as they are not based at the satellite centre.

Mask fitting booked for Monday, so may get the opportunity to clear some things up, though I am allergic to iodine so they can't give me the contrast on the CT, so everyone is scrabbling around looking for a solution

My kids are too young to understand, 4 and 5, they don't understand that they can't climb over me and I won't be able to play with them, I doubt I will have the energy to feed them 3 times a day (lockdown has been around 10 times a day lol). They also have me up during the night a few times, I don't have anyone close by that can help with them so they are off to the seaside for 12 weeks, they at least will be happy.

I never thought I would have to fight for so much.  I never been straight forward.  

On a positive note, it has not spread any further and they will only irradiate one side. Ive asked why so much chemo, they said that 6 is standard

Pamela