Jay make the appointment early and have the lump checked out it could be drainage fluid and what not, a cooked salivary gland, or even just a lump from where the drain was placed but best to have it checked out ASAP.
Is the lump firm?

Also it's good to get to know what's normal for her neck.

Take care

Took everyone's advice and rescheduled our meeting with our ENT doctor which we had today.
The waiting is always the hard part (2 hour + wait..) but the check-up was thorough and well worth the wait.

Also got a copy of our entire collection of scans on CD and also the entire history of Jen's records from initial biopsy to details around the IMRT treatment which ended a few weeks back which was a pretty interesting read! It is amazing how detailed their comments & notes actually are, and I was very impressed with how everything was recorded - and I mean EVERYTHING.

Here are a few comments based on our discussion with our ENT doctor today which hopefully helps others out who may experience similar symptoms post-tx:

• Jen was experiencing 'tingling' in her arms & hands on and off which they told us it was most likely Peripheral neuropathy which is caused by the cisplatin. Unfortunately, this is probably a permanent ongoing side effect and there is really no treatment for this.
• Swelling and stiffness around her jaw & neck was most likely due to the lymphodema and hard scar tissue forming where the neck dissection took place. Doctor recommended massage to drain fluids so will find someone who can help asap.
• Taste will improve over time as taste buds start to reform (usually around 3 months post-tx) but will never reach 100% as a big portion of her tongue was removed.
• Tongue mobility & speech was excellent considering the extent of her surgery and ongoing therapy should help improve this function.
• Post-tx scans will be determined based on the next follow-up check up on the 26th of February. If required, the initial PET/CT scan on the 19th of March may be brought forward with an MRI scan as well
• Blood tests have been ordered to see if there are any issues with Jen's immune system & also more importantly, her thyroid functions.
• Body aches & pains were probably due to Jen's menopause starting again (hooray!) & taking care of a 6 month old baby full time rather than anything else.
• Physiotherapy was arranged to regain some strength back in her shoulders & neck and will commence shortly.
• Follow-up meeting with the dental oncologist was booked for the 28th of February to see how Jen's teeth & gums are doing post-rad.
• ENT doctor was adamant weight loss due to lack of nutrition was a recovering patients worst enemy and told Jen on multiple occasions to keep up with her diet.

An exhausting day but was well worth getting some clarity around what was in store for Jen to manage on-going issues. I guess we are now in the next phase of recovery.

Will let you all know how we go after our next meeting with our ENT & DO but until then, God bless and our thoughts are with you all.

Jen, Jay & Hunter

Im so glad you went in to see the doc! Im sure both of you are very relieved! When in doubt check it out is what I always go by. Keep up the vigilant good work and never be afraid to see the doc about things if you are concerned.

They are right about the good nutrition too! After I finished rads, 4 or 5 days a week I would take in 7000+ calories with drinking my chocolate peanut butter milkshakes. I would drink one very single day but some days I would drink 2 or 3 of them, each one had at least 2500 calories. I was doing this for about 4 or 5 months and never realized how many calories I was taking in until one day I sat down and figured it out. I was shocked! Since I was still in recovery mode I never gained an ounce even with that type of caloric intake. Bottom line is keep encouraging her to push the nigh calories and nutrition for at least the first year after finishing rads. Her body has been thru the war and needs extra calories and protein to heal. She is also burning up lots of calories being mommy to Hunter. Any mother of an active baby will get worn out from time to time, especially a mom who just battled cancer and its brutal treatments.

You are a great caregiver! Right on the ball, very observant. Jen also has a great medical team who seem to be very thorough and on top of things.

Best wishes with Jen's continuing recovery!

So glad she's doing so well!

Hi all,

Can't believe it has been more than 2 weeks since the last post, and I thought it might be worth putting together a quick update on progress made with Jen.

• A lot of muscle was lost in the left side of the shoulder & neck as it was not used for almost 6 months due to the neck dissection. Started Physiotherapy twice a week which includes 2 hours worth of hydrotherapy in the pool to ensure that she regains strength in this area.
• Met with our dental oncologist who gave us the all clear with Jen's teeth & gums. There was a front tooth with signs of some issues due to the radiotherapy, but he didn't think much of it as there were no particular symptoms and advised us to get a root canal if it does cause any problems in the future.
• Had blood tests conducted last Friday and waiting to hear back from the ENT doctor about the results. Slightly concerned that Jen has had specific symptoms which seems to point towards hyperthyrodism but we will have to wait to see if this is the case.

Overall, taste is starting to get better as well as speech function which is great to see. Jen also seems to have a lot more energy and is now pain free which is great to see.

Swelling around her neck has subsided and scars around her neck area have also improved drastically. We still are waiting anxiously for the PET / CT scan scheduled for the 19th of March and we can't wait until we are given a clean bill of health so we can breath easy for a while.

On a separate note, we had our little bub's 6 month vaccination shots and was astonished to hear that he is currently over 9.8kg & is over 74cm tall which means he is actually outside the graph line for the 98th percentile for both weight & height. Considering he was born premature, it is amazing to see him thrive and we have been truly blessed to have such a well tempered, healthy child in our lives!

Will post another update in a few weeks time once the scans are done but in the meantime, I wish all those in treatment all the very best & I hope our story does provide some glimmer of hope that there is indeed light at the end of the tunnel.

Kindest Regards
Jay, Jen & Hunter.

Thanks for the update. Love hearing from you.
Yay for Baby Hunter!! You both are awesome parents. Even with everything that has been going on he is thriving and exceeding all goals!! Congrats!
Kathy

Yeah!, So glad you all are doing well.

Hunter sure is a little giant -- so happy for you. Wishing you and Jen all the very best and continued improvement.

Hi all,

Can't believe we are now past 13 weeks post-tx & I thank everyone for their well wishes.

Jen is doing very well and her taste has come back quite considerably over the past week or so and she can now taste 'sweets' for the first time in almost 4 months.

Energy levels are up to the point where she is well enough to take care of Hunter full time while I am back at the office, and she has also had huge improvements in her speech & eating functions once more which is great to see.

We had a huge scare last week when her blood tests for her thyroid as per my last update showed abnormally high levels and the doctors wanted to see us urgently.

However,the endocrinologist had a look at Jen and didn't think much of it and suspected it be due to her giving birth rather than the radiotherapy which was quite a surprise to hear.

He ordered another blood test on the spot and the results came through yesterday and his observation was correct - the thyroid levels had dropped by 3 fold and is now almost back to normal levels. Just to be sure, he has ordered another blood test for next Tuesday and then a follow up appointment on the Wednesday to give us the final verdict but it was a huge relief to hear that it was nothing to worry about.

Still got our first follow-up PET/CT scan coming up on the 19th of this month, and then a welcome holiday for 2 weeks with family & friends overseas which couldn't have come at a better time.

Hopefully the recovery process continues to progress, and we can't wait leaving for our vacation with an all clear results from our docs in a few weeks time!

Kindest Regards
Jay, Jen & Hunter.

Well that all sounds wonderful Jay. I really am thrilled for your Family.
Having a much needed holiday to look forward to and enjoy will be the icing on the cake. Enjoy.
Tammy