The first part of this blog is retrospective though based faithfully on my diary account.
I’ve always been a “Glass Half Empty” girl. It’s the way I am. It’s a form of self defence. Expect the worst then be prepared for it. Positive mental attitude doesn’t cut it for me but I luckily have a husband who is the world’s best exponent of that attribute.
Talking to fellow sufferers I have come to the conclusion that whatever sort of person you are you develop coping strategies very quickly and that miserable people get cured too.
This is my story for anybody that cares to read it.
I have had the most amazing support from my husband and the friends I have made on the MacMillan forum. I hope this helps those of you on a similar journey. This journey is dark and painful in parts, basking in sunshine and hope in others……. the roller coaster pitching you physically and mentally up and down but it spitting you out into the light. Don’t ever give up. The light is there and it’s wonderful.
Today my coffee tastes like Christmas in Costa Rica 
Hi Dani, well tomorrow is now here and I’ve a mixture of emotions. The last few days my throat and tongue have been painful after being ok for a few days. This is obviously making me anxious pre my Pet Scan. Eating still problematic. I kind of thought the pain would have subsided by now but I’ve given up trying to understand it all. Now it’s time for the scan so I’ve just got to strap myself in and prepare for the ride (time between scan and results). Stuart x
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Hi Stuart
Been thinking of you. Was going to wish you luck before I turned in. You’ve got this. Head up and go for it. Take something warm to wear. Sometimes these waiting rooms where you’ll stay for an hour are chilly. Scan itself is a doddle. Take care and ill be in touch before your results on 29th. Let me know how scan went.
Don’t worry about the pain. I bet it’s nothing. Xx
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Hi Dani, again thanks for the reply. An update, I’m here at the Royal Marsden for the Pet Scan and bumped into my Cancer Nurse. I told her that I have my Pet Scan and have to wait until Monday for the results. She didn’t think it would be good to dwell over the weekend so she has arranged for me to get my results tomorrow. Wow, now I’m completely overwhelmed and don’t understand why, it’s better I know sooner but knowing my half empty glass mindset it’s feels doom coming sooner. This is doing my head in, sorry for going on x
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Stuart getting the result tomorrow is brilliant. You’re not doomed. Treatment failure is extremely rare. Happy scanning. Xx
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And I’m half empty too. Miserable people get cured too, positive folk just have an easier time of it in their head xx
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Appointment at 10.50 tomorrow, eeeek!! They say will also be putting a scope up my nose, is that normal? X
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Routine scope. When was the last one? I suspect they will want to have a look at what it looks like to get a baseline. It will be recorded
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Only had one when first examined for diagnosis. Just suspicious of everything at the moment, I just picked up on others not having one but wanting one, so just trying to understand.
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Hi Stuart.
I had one at 12 weeks and at 16 but you have to remember this was pre Covid. I have had two since then. So that’s around one per year. The consultants are getting round to the idea that they are of little clinical use so I think they are going to be quietly dropped after acute recovery.
What might happen instead is a 1 year PET and patent led follow up in low risk ( ie clear 1 year scan) patients.
You can’t help but be suspicious but try not to be.
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Stuart I’m on tenterhooks
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Hi Dani, just back from the hospital and ALL IS OK !!!!!!!!!!! You were spot on with all that you said. I have thrush still hence the pain I told you about so have more antibiotics from the Oncologist to treat it. It feels extremely surreal at the moment, I feel elated and then tearful. Still sinking in. I cannot thank you enough. Your messages and explanations, your support and encouragement has been priceless. I am sending you a massive virtual hug xx you are an absolute star ⭐️ With love, Stuart x
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Oh thank heavens. Now get on with putting your foot flat down on the get better pedal. So so pleased. Brilliant !!
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Hi Dani, I thought I would drop you a line to keep you updated. The pain in my throat (Thrush apparently) is still there even after the two weeks of anti-biotics, however its not as bad. Since my last message to you I was contacted by St Georges Hospital (where I was originally referred to) asking me to come in and be seen by the Oncologist. This is only two weeks post my appointment at the Royal Marsden. Long story short, they met with me, quick look in my mouth and feel around my neck, then told me they want to see me every six weeks, camera down my nose, this is in addition to the Royal Marsden seeing me every three months doing the same. This troubled me somewhat so I asked why two lots of checks, they said its better they have two sets of teams looking at it to ensure nothings missed. I again went into worried mode, why on earth are most 3 monthly but I am every six weeks. Again, maybe my suspicions get the better of me as since the result of the Petscan I’ve still not really punched the air! I sound so glum but I really want to be happy but it still doesn’t feel right in my own mind. I am considering going back on the Private side but the guy I will see will be my original Oncologist so not sure if to bother?
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Hi Stuart. I was seen every six weeks for the first six months then every two months for the first two years. I am now in three month checks for the next two years. I think that’s fairly standard. I’m sorry I can’t elucidate. I would ask not why they need to see you separately but why do they think something might be missed. Tell them you are worried and can’t understand and you want an explanation. I doubt there is anything sinister going on and I doubt anything is being kept from you but they need to clarify things for you. I am shared between maxillofacial and oncology and see them alternately.
This cancer sword of Damocles is hard to live under but it does get better as time goes on. It took a long time for me to get my head round this but I consider Cancer has it’s own agenda. Our doctors do their best but yes it can recur …..but whether it does or not is outside our control and the fact that we survive after treatment is down to luck.
So there is little point wasting the time we have left worrying. Just take a deep breath and get in with living.
I know it’s hard but it gets less so.
Take care.
Tell me what they say
Dani xx
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Hi Dani, it just doesn’t get much easier does it!! Since our last exchange it transpires I now have Oral Thrush and developed Lymphedema (I’ve followed your video instructions), I will be having a video call with the Lymphedema Nurse this Friday. I was prescribed medication to deal with the infection but still in a lot of pain and the throat is feeling quite awful. is eight weeks post treatment still too soon to expect improvements ? thanks again Stuart
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Hi Stuart. What have you got for the thrush? The only effective treatment for RT damaged mouths is Fluconazole or other similar Triazole antifungals. Lots of doctors still prescribe Nystatin and that is useless.Are you drinking lots of water? 3 litres a day and making sure you get enough calories…..Oh and pain relief. * weeks is still early and you’ve just taken a step back with the thrush. Get on top of that and things will get better. I was feeling more human by 12 weeks but I still got horrid setbacks. Do you know when your next oncologist meeting is and when they plan your post treatment scan?
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Hi Dani, yes I was prescribed Fluconazole by my Oncologist and am just finishing the course. My PET Scan is booked for the last week of March and seeing the Oncologist 4 days after; I have that dread feeling in my stomach just typing it!! I have found your messages very comforting. I am managing around 2 litres but know it should be more. Not really eating as throat too painful but am having liquid supplements. Externally everyone thinks I am managing so well, looking fit and healthy which internally is far from the truth.
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Hi Stuart. I’m glad I’m of some help. Take care to rinse your mouth out after you drink the supplements. They are high in sugar which thrush thrives in. Take heart that HPV oral cancer responds really well to radiation. The stats ( handy sometimes) for treatment failure are practically zero. My oncologist told me that people with HPV driven cancer are more sensitive and seem to take longer to recover. Just a fact of life. So your PET will be fine. I hope you can take somebody in with you to hold your hand at least. So many folk have had to manage on their own.
Deep breath you’ll be fine. Small steps. Look how far you’ve come already. In a years time all this will be a fuzzy memory xx
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Hi Stuart. Just checking in to see how you’re doing. You sounded down in your last post. I promise it does get better
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Hi Dani, yes, a bit better now and that is down to the last message you sent me. It was very positive and certainly filled me with hope. I have now had treatment for the Lymphedemea yesterday and again that has now eased; in fact i think this may have been the lump i was feeling previously and the pain has also subsided. Apart from the phlem and sore throat i am feeling much better. 4 weeks to go until the Pet Scan so am trying to remain positive xx
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Baby steps will get you there. I’ll have my fingers crossed for your PET/CT. Where are you having that done? Xx
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Hi Dani, PET Scan being done at the Royal Marsden in Sutton 25th March and seeing Oncologist 29th for results x
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Hi Stuart. The month will fly by and at least you won’t have to wait long for results. Trust the team to fix you. Give me a shout if you begin to wilt a bit.
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PS. Hang on in there. There are days when life is the pits and you feel you can’t fight your way out but the fog clears little by little and you get there. These first two or three months after treatment ends are the hardest, full of doubt and the end and good health seem a lifetime away. Please hang on. xx
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Hi Stuart.
Neck dissections ( where they strip a chain of lymph nodes in your neck) are getting less common. They are invasive and side effects go on for life. Also lymph nodes are surgically avoided if they are near vital organs. The carotid artery and the facial nerve being the most common involved. Why remove them when radiotherapy sorts out any that have cancer. Really don’t panic it’s very common to leave them.
It also gives the surgeons the option of easy access to the neck should there be a recurrence.
As for your tongue it’s not the easiest place to get to with surgery. Radiation is hugely effective and even if the tumour could have been respected you wound have been given RT on top anyway.
I have a friend who had surgery with a robot and she has been left with a lot of problems related to it even years later
I can of course only give you pointers. Ask your surgeon/oncologist.
Don’t try to run before you walk again. You blokes are terrible! 😂 you plough through treatment on the minimum of analgesia and believe your doctors who tell you that things will be much better in two or three weeks. It takes ages to get through this. 12 weeks and you will feel more human. Being fit in the first place is a bloody good start.
Really Stuart I mean it in the nicest possible way.
A mate and I run a WhatsApp support group and the guys are always the worst, expecting too much from their bodies too early.
You’ll get there. Just slow down. 😄😄
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Oh and PS. Nodules in the lung are really common and usually due to some past chest infection.
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Dani,again thank you.
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Hi, been reading through this brilliant story. I am post 6 weeks treatment for head and neck cancer, primary on my tongue and spread to lymph node. I’ve had chemo x2 and 6 weeks radiotherapy. I thought my recovery was going well but I’m now doubting it’s worked(similar to, plan for the worst hope for the best). Last week or so has been awful, some very dark days. My throat seemed to recover in week 4 post treatment but now feels back to how it was. I have pain again in my neck where the treatment was so it’s all building up. I’m convinced a still have a lump by my lymph which when examined at my last visit thought it may be scar tissue from the treatment.
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Hi Stuart.
Sorry you’ve had to find me but let’s see if I can put your mind at rest a little. You say your throat was recovering at 4 weeks. Have you been more adventurous with your food? Because that is the first thing that is going to set you back and often its one step forward two steps back. Returning to a softer blander diet and using your Difflam mouthwash should sort it out.Even 6 weeks is really early.
As for lymph nodes, the RT carries on working for months and your nodes continue to shrink.
PET/CT even picks up swollen scar tissue at 16/20 weeks. It did with me and it’s fairly common.
You can also get radiation fibrosis which causes contraction and pain in your neck. Have you been doing your neck and mouth exercises ?
Recovery is a dark time. While you’re under treatment you are the centre of your clinicians’ attention and suddenly you are pitched out on your own. Every new symptom is cancer, but honestly, it isn’t.
Failure of treatment is exceedingly rare and recurrence this early is too.
Your symptoms sound as if you’re HPV+ve and that has an even better prognosis.
I hope this helps.
Do come back for a chat whenever you need to.
Oh and thanks for reading the blog 🙂
Dani xx
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Hi Dani, thank you so much for your prompt reply, much appreciated. a little about me, I am 56, was in the Army for 10 years and then in the Police for 24 years. I retired in 2014 and began to refurbish houses for a living. i am 6′ tall and muscular build (i will explain why i say this in a moment) having been a semi-professional Rugby player so when i was hit with my diagnosis I felt as though I had somehow wilted. I will run through my diagnosis (yes, it’s the HPV Virus as you deduced) in August last year I felt a small lump under my right jawline, my glands were also swollen so thought I may have an infection of some sort. Went to the Dr’s and prescribed anti-biotics to see if the swelling reduced. It did, however, the small lump remained. I returned two weeks later and another Dr examined me and was unhappy with the lump so requested an urgent Ultra Sound. Due to a cancellation I had one the following week. I was also having an MRi with contrast relating to a neck injury I had sustained (unrelated). This proved fortuitous as the results returned the same day 3 days post the Ultra Sound. The MRi had identified a 4cm mass (they thought it was on my tonsil but was in fact on my tongue) which they recommended an urgent biopsy be taken to investigate; the Ultrasound the same. Again, I was referred through the NHS but due to time etc I decided to go private. I saw (who would become my Surgeon/Consultant) Mr Offo who examined me via a camera up my nose and then a Biopsy of the lump which was examined straight away. He confirmed it was Cancer, primary on my tongue and also into my Lymph node. He stated that it was treatable and was a very good prognosis. Then followed a tongue biopsy and CT of my chest. They saw a small nodule on my lung but were not overly concerned. I then went back into the NHS via Mr Offo and began my treatment at the Royal Marsden in Sutton on 12th November; I underwent radical Chemoradiotherapy. My only concern with it all having read others, why did they not operate on the Tumour in either the Lymph or on my tongue? Is that usual? Thanks again. Stuart x
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