Post
by OdihamClaret » Fri May 03, 2019 8:02 pm
Ewanrob,
It’s a long time since I have posted in this forum but I saw your post and I wanted to offer my best wishes for what you are going through and the immediate path forward..
On Wednesday I attend my 6mthly consultant appointment as a 4.5 year survivor of Metastatic Squamous Cell Head & Neck Cancer with Occult Primary.
I was diagnosed in August 2014, after a thin needle biopsy on a lump on my neck; it turned out that it was a secondary and primary was an invisible one on base of my tongue (found with PET scan).
The Cisplatin Chemo is tough (no way of disguising that fact) and the Intensity Modulated Radio Therapy (IMRT) causes very sore throat ( I had a PEG stomach tube feeder to help) and there are other potential problems as you will have been briefed but…
More than anything, It’s important to tell your loved ones that you may look very ill BUT they need to keep in mind that it is the treatment, rather than the disease, that is causing this appearance and you WILL get better.
ADVICE: Lean on the support of your loved ones, they love you and you would do the same for them. It will be tough, but TOGETHER, you will get through it and better times are ahead.
My Support at my Cancer Centre was superb and the cancer team was incredibly supportive and no doubt you’ll get the same outstanding support off your team; use them, there is nothing they haven't seen before.
I can say that when attending clinic, you will probably see other folk in a far worse state than you, and strangely, if ever there is a time in life that you'll count your blessings, you will have cause to do so on almost every treatment attendance.
My advice: KEEP GOING and fight through the treatment sickness.
Your horizons will, at times, shrink back to what is happening to the here and now and just surviving for the present but the love and support of those around you will arm you with the spirit to see the treatment through (mine was six cycles of Cisplatin and 30 IMRT sessions).
Again, as you will have been briefed, there may be some legacy effects post treatment but you can come through very well, I and many others are evidence of it.
FYI I got back my swallowing action, taste, saliva, kept my teeth and although minus some Lymph nodes (due to a belt and braces neck section) I will achieve my 5 year point in September.
Despite all this, the past 5 years have been the best of my life, not in a material sense, but in sheer appreciation of life and the family love I’m so luck to have, I hope you will be blessed with the same.
Good luck.
From a fellow Head & Neck patient.
These 5 users liked this post: Brucefanclaret ewanrob Burnley1989 Buxtonclaret Goddy