David is right, now is when the roughest part of this whole thing really kicks in. The last week is the hardest and first 2 or 3 afterwards. Keep pushing that nutrition and hydration. That is playing a huge role in how well she is doing. If she isnt able to take in enough water, ask for hydration in the chemo lab. You would need a prescription. After getting hydrated she will feel much better. Keep the pain under control, it wont help for her to be hurting. Ask about upping the pain meds to get her thru the next 3 weeks.

Best wishes!!!

You'll get there - it will be harder but she sounds tough,.. She'll get there

Final Chemo session was completed today (4x Cisplatin, 2x Carboplatin) and we now have just 2 rad sessions to go..

Finally inserted the Nasal Gastric Tube on Monday this week voluntarily as Jen's throat got very bad over the weekend and could not swallow anything including water.

Although we have lost no weight since treatment begun over 6 weeks ago, we thought it might be the safe bet to get it inserted as we knew eating would become a struggle over the next few weeks.

Currently, we are getting down around 5 x Ensure 2.0 per day which equates to approximately 2300 kcal through the tube, and it has made things a whole lot easier for her.

Using around 60mg of Oxicodone per day + Cocaine Mouthwash for pain relief, and we were just prescribed MS Contin just in case things get difficult over night as it lasts for 12 hours.

Only 2 more days to go until treatment is complete, and I pray that it's the last time we EVER step foot into the radiotherapy or chemotherapy room of ANY hospital.

Not to say that we won't miss the doctors, nurses and staff at all the hospitals as they have been incredible, but I am sure we will get to see them on a frequent basis as we get regular check ups post-treatment.

In all honesty, the advice that I have gathered from OCF and the stories you have all shared with us has helped us so much through this difficult journey, and has prepared us so well for what was expected.

As promised, I will try and put together one final post once treatment is over and have had time to settle down which may hopefully help others lurking these forums for some information around what to expect during treatment.

Kind Regards
Jay & Jen (+Hunter!)

Glad you got the nasal tube but remember she must continue to swallow every day. 5 Cans of Boost VHC would yield appx 2800 cals for the same effort. Hang in there for a couple more weeks and things should start to migrate towards the brighter side.

It all started almost 4 months ago when my wife complained about a very sore tongue to her paediatrician during her monthly visit due to her pregnancy.

Although he didn't think much of it at the time due to my wife's otherwise excellent health and no risk factors involved, he wanted to be safe and sent us to a specialist for them to have a look at it.

The specialist also didn't think much of it, stating that it was more than likely it was related to the fatigue and stress caused on the body due to the pregnancy but wanted to be certain so she conducted a biopsy on the spot. Little did we know that these precautionary steps would lead to my wife being diagnosed with tongue cancer a few days later which would change our lives forever.

We knew something was up when we got the call from the hospital requesting we come in urgently to see the doctors, and when the doctors uttered the word �Squamous Cell Carcinoma�, we thought it was a medical condition but had no idea it was a type of cancer.

They reassured us that by the look of things, we had gotten it early and the actual size of the tumour was very small. However, after multiple tests which included a CT, MRI, multiple blood tests, a fine needle aspiration and physical examination by a whole team of doctors � the doctors concluded that it was a Stage IV cancer � T4aN2bM0.

Despite the tumor size being approximately 25mm in maximum dimension, it was deeply invasive to the skeletal muscle (15mm) of the tongue resulting in the T4a categorization, and N2b as the FNA concluded that the cancer had indeed metastasized to her lymph nodes. The pathology report that followed the surgery did indeed back this up, although we did get further bad news that one of the nodes was displaying extra capsular spread, and that there was also a tumour deposit around 17mm in dimension in one of her other nodes.

This meant that the most aggressive form of treatment was required to allow my wife to have the best chance at not only beating this cancer, but preventing it reoccurring due to its aggressive nature and they suggested that we take the following treatment plan over the next few months:

� 4th of August � Diagnosed
� 3rd of September - Induced Birth @ 36 weeks
� 11th of September � Surgery: Partial Glossectomy + Free Flap Incision + Partial Neck Dissection (Left Level 1-5)
� 23rd of October: Start of 33 x IMRT Sessions + 7 x Chemotherapy Sessions over 6.5 weeks

Having done extensive research and asking for a second opinion from other hospitals, we decided to stick with this plan and spent the following few weeks making sure that we would have everything prepared in advance prior to this starting.

First came the delivery of our baby boy � Hunter which occurred with no complications and more importantly, no need for a c-section which was expected in my wife�s situation. Next came the 12 hour surgery despite only being 6 days out from being discharged from the Women�s hospital, and the 10 gruelling days that followed in the recovery ward. The doctors told us that they had got all of the cancer (all margins 4mm+ clear), albeit one part of the tongue only having a 1mm margin which was intentionally done as it would have resulted in the entire tongue being removed due to the location. Having a few weeks to see my wife recover very quickly, we were again put on the back foot again once treatment started and the gains we made with her speech and eating (which were at around 90% normal levels) have all been rolled back to a state as it was pre-surgery.

However, here we are with all treatments completed as of today. Our last radiotherapy session was today, and we have now gone through all that modern medicine has been able to provide in regards to beating this dreadful thing called cancer. Despite the side-affects from the treatment still taking its toll (and I know that there will be a few more weeks of this), we have come out in relatively good spirits and in otherwise good health.

Although it will take a few months to surely know that my wife is in remission, I have decided to call today our first day of �cancer free� since being diagnosed, and will focus on the long road ahead to recovery.

We thank this board and its member for the wealth of knowledge shared throughout our journey, and I can honestly say it has helped our family an incredible amount. We hope that our story and our journey has helped others who are looking to embark, or who have already embarked on their quest to be healthy again and our prayers will always be with those who share this unwanted fate.

On a final note � one thing that has changed since we started this journey is that my definition of a miracle has somewhat changed. A miracle is not some dream that happens to those who are only fortunate or lucky. A miracle is when you are able to live normally in abnormal circumstances � something that all of us here at OCF do on a day to day basis.

Thus, I hope that everyone enjoys many more miraculous years to follow, and wish you all the very best.

God bless.
Jenny, Jay & Hunter

Congrats to the both of you!!!!!!!

Jay - Thank you so much for sharing this wonderful journey of survival in such extreme circumstances. I'm sure your experiences will be a source of help and courage and hope for all who come here. Congratulations to Jenny on being cancer-free!! May the remaining weeks of recovery go quickly and be problem-free. Very best wishes to you and Jenny and Beautiful Baby Hunter!

This sent chills up my spine. Thank you for sharing with us. It has been amazing to listen to your updates and hear the teamwork in your marriage. You are very Blessed indeed and can now look forward to life and enjoy the celebration of Jesus' birth!!!
Kathy

Jay,

I am so happy for you both (well really all 3). I'm not much of a crier, but your post brought me to tears. I feel somehow a kindred spirit in Jen, and know that she will bounce back from her treatment in record time, for you and Hunter.

All my best, and of course, I will be waiting to hear good news.

Congrats to Jenny for finishing her treatments!!! She will be feeling a little better in a couple weeks. Best wishes with recovery!