Hi Jay,
I don't know what to say other than you really do have to take it one day at a time. It does get easier, but it takes awhile.
Charm is right about the PET. I'm sure you're aware of the strong possibility of false positives. I hope you are anyway. Our first PET came back with a hot spot freaking everyone out, but after an MRI it turned out to be only inflammation. A few days of major stress. Our next PET was clear though. We are due next month again, but are going to request an MRI as they are more accurate the first time around.
Hang in there. Love the song Charm quoted. Stay focused on God. Play Praise music daily. Find your favorite scriptures and jot them down and put them on the bathroom mirror and anywhere else you look several times a day. Maybe by Hunter's changing table. Cover your hearts and minds with Faith!!
Blessings,
Kathy

Thanks everyone for the words of encouragement & honest advice. Charm - I think both you and I agree faith is what pulls us together and I thank you for sharing the lyrics to that song

Well, another week has past and I cannot believe it is now 6 weeks post-tx. Both Jen & myself have now started to get back into our normal routines, with me starting to go back to the office and Jen looking after bubs at home.

I had a client meeting on Tuesday at work with a lady whom I just started working with, and was surprised to find out that she had been fighting cancer for the past 6 years, and had recently just completed another round of chemo & surgery due to her cancer now spreading rapidly through her lymphatic system (it was her third reoccurence). It was a bit of a shock when she told me that the doctors had told her she probably had around 2 years left to live, as she looked so upbeat, energetic & healthy! Also found out that she was the patient advocate at the cancer hospital that my wife was treated at, and we actually shared the same MO. It just goes to show that cancer is a disease that affects a lot more people that what you assume when your my age, and that a normal life is possible despite the adversities.

Jen has had another week of remarkable recovery, with the majority of the pain in her tongue & neck all but gone, and she can now taste a more variety of food with taste getting better as well. Still can't taste sweet flavours yet, but I am sure it will return over time with the remaining missing taste buds over time.

She is now back to experiencing the physical symptoms caused by the surgery (stiff shoulder & sensitive neck where the neck dissection occurred) but I keep telling her this is a good sign as it means that the real concerns in and around her tongue have recovered well enough for smaller symptoms to go noticed!

Emotionally & spiritually, we are starting to cope with the new 'normal' and getting back into a routine with work, life & taking care of Hunter has definitely helped. I hope that this progresses to get better as the day goes, and I long the day where cancer is a far distant memory that serves only the purpose of reminding us how precious health & life is, and should be thankful for what we currently have.

Jen, Jay & Hunter

Jay - so glad to see such an encouraging update! The taste for sweetness did come later for my son. For him it happened when he bit into a gourmet jelly bean and we really celebrated that! Maybe you could get Jen a nice bunch of colorful and different flavored gourmet jelly beans for her to try and check on the sweetness taste.

Another week gone (7 weeks post tx) and things are progressing along fine. Not really much to report apart from the fact that we are starting to slowly get back into our normal routines.

I think we have been very fortunate that Jen has been able to recover so quickly from her Tx, and it is quite amazing how she has been able to regain a lot of her speech, swallowing & movement functions back so quickly.

Taste issues are still around the same (15%) although we are starting to get much more adventurous with our food choice (we tried Pizza yesterday!). Still no sweet taste but I will definitely try the Jelly Beans as per your recommendation Anne-Marie sometime during next week!

Still over a month away from our next appointment with our ENT doctor, and over 6 weeks away from our first scheduled PET/CT scans. Quite a strange feeling not seeing a medical professional for such a prolonged period of time, after seeing someone pretty much every day for the past 6 months.

I know they are only a phone call away for us to schedule something with them, but the very fact that we are on our own to watch over the recovery is quite a big responsibility if you think about it.. In saying that, I hope Jen's recovery continue to progress as is, and there is no need for us to book in any urgent meetings at the hospital between now and then!

Will keep all of you wonderful folks on this forum in our prayers, and I hope that these updates serve some sort of purpose to those reading our journey.

Jen, Jay & Hunter.

Week 8 post-tx and a few of the 'side affects' from the treatment have started to appear.

Jen has a little 'lump' that has appeared on her chin which is on the opposite side to where the cancer was. It doesn't seem like much but as with most on here - your mind plays tricks with you and tends to wander off by its own sometimes which doesn't help.

Hair loss in the back of the neck area continues on despite being 8 weeks out from treatment, and considering she was administered carboplatin - it is a bit baffling as to why this continues to happen.

Sore neck & shoulders are also an issue and I don't think it is helped by the fact that she has to take care of a 10kg baby during the day and has to pick him up and put him down all day long!

On a more positive note, she definitely has a lot more energy and it was encouraging to hear from her that she felt 'hungry' for the first time after treatment despite taste levels remaining at 15-20%. Also, her tongue movement with her new flap has improved so much which as a result means she is able to speak and eat a whole lot better now - I would say almost at 90% levels pre-tx.

Follow-up bookings at the hospital were also made for the end of the month with the dental oncologist, speech therapist & dietician for this month along with our ENT doctor which hopefully gives us a chance to go through a few of the post-tx symptoms outlined above, but I would love to know if anyone else has had similar issues and it would be great!

Thank you all as always and God bless.

Jen, Jay & Hunter.

Jay,

Good to hear Jen is progressing well. If the �small lump� changes or increases in size I recommend you arrange to meet your wife�s ENT earlier and have them check it out sooner rather than later.

Karen

I had the lump under my chin after rads, and then after the neck diseection. It's an accumulation of lymphatic fluid drainage due to the damage or removal of the nodes in the neck, and will probably subside, but let the doctor check it. I called it my turkey neck. Some have manual lymph drainage massage by a therapist trained in this, which name escapes my mind..chemo fog. The massage has to be done in a certain way, direction, pressure, and depends on the area of the face and neck, so just massaging it may not be helpful.

A radical neck dissection, as you probably know, invloves the removal of the neck muscle, vein, and nerve, in addidtion to lymph nodes in level II-V, and some do have neck, and shoulder weakness, pain and probably the baby weight is added stress. I'm gong to PT again to help mine, and doing stretching exercises, which I'm sore for a few days after, but seems to help.

The hair loss on the nape of the neck, hairline, is from radiation too, which continues to work 6 weeks post treatment. I didn't have Carboplatin, but it's close relative, Cisplatin, which also causes hair loss to some extent.

I hope this helps.

Thanks for your replies - I suspect that the lump under the chin is due to lymphodema as per your comments Paul but I will keep a close eye on it over the next few weeks.

Karen: We are also in Melbourne and have our appoint scheduled at the Royal Melbourne Hospital this month and will definitely reschedule if we see any changes.

As for the hair loss - glad to know Jen is not the only one and I agree with you Paul that the shoulder & neck pain is due to the neck dissection & carrying around a pretty big boy around!

Again - wonderful to hear your responses and it does put my mind at ease knowing that these symptoms are pretty common post-tx.

Jay

Jay- thanks for posting this. Many stories in this forum give me hope and strength. As I go for round 2 of my battle, info in this forum has been so helpful.

Many blessings to your family and congrats on everything good with your new normal.
~ Lola

Jay,

Yep, the pain popped up over the last couple of weeks for me. At first I thought I had been over-enthusiastic about my PT exercises, but it has progressed over the last 10 days, until it finally occurred to me that I can feel more of my upper chest and chin, so I expect it is the nerves returning and now letting me know the pain of the surgery.

Who knew the numbness was a blessing, lol. Stretching helps, and I have been watching my posture, which the PT will likely tell Jen as well. We have a tendency to "hunch" to compensate for the reduced strength/mobility. The best stretch is to roll up a towel, put it between the shoulder blades, lie down and stretch the arms to the side.

It's the standing joke in my office that I look like I'm trying to look more busty, by sticking out my chest all the time... Personally, I think I look like like a chicken...

All my best to you, Jen and Hunter