Arrived back from Santander 0100 up at 0830 and thought “ok let’s ring the Drs”. Got through and spoke to receptionist, |”sorry we’ve no appointments this week”! Calmly I said “ok, I am a 61 year old female have had a lump in my neck for 6 weeks”, “ok, come up at 1200”.
Arrived at surgery saw really nice locum felt my neck then the C word sprung out: “Ok because if your age I am putting you in the 14 day cancer pathway”. Looked at John and we were numb. He did say it’s routine but you really don’t hear that. We walked out with a leaflet and waited for a phone call. Umm great end to fantastic 3 month trip. I had no symptoms, so we carried on stoically and told Nicola and Mel and a few family members and friends. Then we waited. The phone rang with an appointment for 29 May.
29 May arrived, 13.30 saw consultant she did a needle air aspiration then literally jumped around the room saying she wasn’t expecting that. She asked had I been in contact with anyone with TB!!!! Umm no. Ok, when was my last chest x Ray reply… er never.
Went to x Ray immediately done result on consultant desk by the time we got back no signs of lung disease yippee, but she thought she saw a spiders web tracing on top of right lung could have been childhood thing that I caught Tb prior to injections at 13. “Go away come back next week, will send off for cytology so come back next week same time. We’re looking at latent TB but will have to do routine cancer checks as well”. Ok, so off we trot, made some calls felt strange but relived. Read up, about latent TB went back the following week .
Tuesday 5th June 2018
Should have known when nurse sidled up to me quiet spoken “it’s Hazel from last week isn’t it? The consultant is just having a third review will call you in ASAP”. John looked hopeful, I was down cast. 50 mins later in we walked, my bum hadn’t hit the chair when she said so “I’m sorry the test show squamous cancer cells, maybe a bit remiss of me last week, I should have done a camera endoscopy. Can do it one of two ways in the time it’s taken to explain will be done or nicely nicely or so numb you and wait 45 mins”. So I said “just do it think”, I think it was the shock of the news because I didn’t feel it. A video was taken, weird seeing it on screen, heard laraynx and voice box clear took some photos and pulled it out.
I tried several time to say about my tonsil quinsies in 2003 but she didn’t want to know. Next step, gloved finger down my throat “umm something in back of tongue, midline,” well by then I was in shock.
“Ok go and get a pre med they will give you date for a biopsy, arrange a ct scan with contrast and book an MRI scan so off we went”. Will never forget the sad looks of the nurse they still,haunt me today.
To say we lived the next few weeks in a whirl would be an understatement…. sit back and read on.
At every appointment and in every letter the words used to describe the end result of the next few months was they were talking about curing not just treatment, so taking comfort from those words here we go.
Thursday 7th June 2018
Nicola’s 37 th birthday and the day of my Christmas present from her and Mel, tickets for us to do a mum and daughter day at the RHS Chatsworth Flower show. A bitter sweet day. I lived it but had a fair few meltdowns just proving I am not as tough as I sometimes like to think!
Nicola is a very recent convert to the love I’ve always had for gardening and she is doing a brilliant job with their allotment and garden which makes us immensely proud of all of them .
In the Grand Marque, “oh Mum look at those peonies why don’t we get one”, my caustic reply “I doubt I will be alive next June when it will be in full flower to see it bloom”!!! Faux pas number 1 , retreat outside floppy hat on head sun beating down but as my mood was so low it might as well rain. “Pull yourself together woman” so I did. We went back in only for 2 minutes later a sweet old dear to ask me to sponsor a heritage flower for the next 20 years: brain to me “I won’t be alive long enough to set up a direct debit!” Retreat back outside for long looks at the river, last faux pas…. Nicola to me, “Mum please don’t go to the MacMillan stand”, too late I am there picking up leaflets like there is a paper shortage. Lovely nurse asks me have if a family member whose been diagnosed, so brave foolish me, “oh no I got my diagnosis on Tuesday cancer in the back of the tongue”. OMG bet I made her week. I know they are well trained but the look of pity and horror spreads across their faces soon followed by kind words so after meltdown 3 thought, ok shut up I am here to enjoy and have a spending spree, cancer can wait for a few days. Well maybe not as by the time I looked at my phone I had had 2 calls from my designated MaCMillan cancer nurse wanting to chat!! But a few hundred pounds later (well not that much, honest John) we had a brill rest of day finished off with a takeaway.
Wednesday 13th June 2018
CT Scan with contrast. At 0845 the NHS starts to move, I’d never had a scan so off I went no jewellery on, yoga breathing in my head calm thoughts and lots of 30-45 min bike rides that I had been practising . Unfortunately me and my veins bruise and already having had several blood tests finding a suitable one for cannula wasn’t easy. Scan wasn’t too claustrophobic and to be fair seeing as I had MRI booked for the next afternoon they did try and squeeze that one in for me but couldn’t so that’s tomorrow. Went to see our friends Pat and Nigel in Hull and bring them up to speed. Think they were both in shock as we had only biked 80km a few weeks previously to their apartment from ours in Spain.
Thursday 14th June 2018
The big one (MRI) the horror story’s the claustrophobic feeling, the noise, let’s face it heard them all but what choices did I have: zilch, nada, nothinh! So best foot forward and in I went, it’s the hemmed in feeling and having your head fastened in a vice but breathed and biked my way to the top of the Portman climb near Cartagena , even putting coffee and loo stops into it so 40mins later and compliments from the staff “it’s rare we get a newbie so chilled” and that was over. Just biopsy to follow next week .
Tuesday 19th June 2018
Arrive at day surgery ward 40 for 1200, no relatives allowed to stay. Phew I could feel the relief in John! We don’t do hospitals, we don’t do illness so up we went and then he left.
Having allergies can sometimes work in your favour I found out today because of a latex and nickel allergy not a major problem along with penicillin I was flagged as first in surgery and given a red arm band . That day a group of young doctors were doing an allergy survey and like bees round a honey pot they swarmed around me which was fine but their clipboards were open for all to read including me and my diagnosis and the others after me not a good point on data protection, Nicola wanted me to take that further but maybe later.
Had chat with anaesthetist lovely guy , then the consultant came in complete with lap top not the same one who had given me 2 diagnosis she was on leave . That’s when the future suddenly seemed brighter I just wanted John there to hear his words . After reviewing the MRI scan with colleagues from St James he then showed me my head and neck from top to bottom and used the word Tonsil right one , ok cancer lesion but I could see it with my own eyes ,plus Larry the big lymph node who announced his presence to me along with possible 2 smaller ones .
I could have kissed him instead went into “work mode” and said could I possibly ring my husband who was at home thinking half my tongue was going to be cut out and bless him we found a mobile signal and I let John know the news, strange as it sounds tonsil or back of tongue at least tonsil might have an explanation and boy did it but more of that later on in this event.
Woke up fighting the anaesthesia approx 45 mins later on recovery ward. At 1500 had a cup of tea took my own tea bag as been herbal for years . Umm my notes were on the table…. do I look or don’t I look! No contest, let’s face it, what would you do, honestly?!!!
Slid off the bed got my glasses out and started to skim the notes. In brief, NAD tongue ok nothing abnormal discovered result, lesions right tonsil anterior wall and slight soft cell at roof if mouth looking at poss T2N2 M? Ok understood that – yep O had googled bits by now anybody would. It all refers to sizing the M is metastatic which can’t be known unless PET ct scan done. Next move look for my phone, but remember brought Johns old crappy one, no camera! Right pen and paper and scribble. Duly did so, if I can eat ice cream I can go home surgery been busy and need the beds , ok fine eats it Johns comes for me . In he walks in whispers get my phone out of your pocket what can’t hear you , I point to my notes and mimicking take a photo , then doh forget it . So off we drive home honestly feeling better than I had in a few weeks strange as it may sound .
At home my phone starts ringing with a Wakefield number ok try to get but no one there carry it in my hand rings again still no one there it’s deffo the hospital as comes up with name but it’s a number you can’t redial. So ring ward no no one wants me so ok they will ring back tomorrow .
Wednesday get a call from Lisa the other MacMillan nurse rings apparently the consultant that I saw was surprised I had been discharged as he wanted to talk to me last night about the next stage of the event !!!! Right I said am listening he had already been in contact with St James and not to panic if I got a phone call inviting us to a MDT meeting the following Tuesday and lo and behold the call came so all set for the 25th.
Monday 25th June 2018.
Got the big guns involved now Nicola is coming with us firstly in the role of our beloved daughter and secondly her capabilities of taking notes and holding conversations and recording accurately is 2nd to none plus she uses NHS speak on a daily basis.
So arrive early I am never late , in we go faced with a full stretch MDT team ,told you I worked with 3 letter city codes the NHS is master of them all !!
To say the room was-over crowded we numbered 9 the top oncologist lovely man , consultants who did biopsy 2 Turkish students in exchange, did I mind then staying I certainly didn’t one has to learn , Lisa the Macmillan nurse plus a surgeon who was very smiley .
To fully understand cancer comes in various guises smoking drinking lifestyle can play factors but also in my case possibly a virus HPV16 + briefly it’s related to the herpes virus and between 80-84 % of the population have it and causes no bother what so ever you either get rid of it or it lays dormant for years.
If you google it a little known fact it’s mostly passed down the female birth tract to babies and not the sex horror story’s that make headlines ie multiple partners and sexual,preferences !!!!!! . Be prepared for gentle probing if you are ever in that place not that I would want any one else to be.
Primary is squamous cancer cells in right tonsil with slightly spread biopsy samples not yet confirmed HPV16+ but oncologist confirmed his suspicions that it would be . Another huge sigh of relief as tests have proven that cure is helped by that prognosis will accept any help we can get .
two confirmed lymph nodes with cells in it another suspected so ,PET scan will be booked for next week or so.
TNM staging TN2N2b M0 which if HPV16+
The consultant asked a few probing questions on long had we been together, over 40 years , what was our occupation John a miner I was a business travel consultant , he was interested in my travel background did I go away much in my own .umm nope gave away lots of trips family first was my motto .To which he scribbled a few notes and smiled ,then went in to explain how he worked for P and O cruises before embarking in a career in medicine. All,I can say he is NHS through and through and I feel,in very very capable hands .
Surgery not really an option at this stage the position if baby lymph seems to,preclude this which is fine as chemo radiation is the proven way , leaving surgery as the 3 rd option .
High dose in right side low dose in left side no PEG feeding tube as aiming for swallow function to be maintained, if need be nasal tube if required . I have been bulking up and managed to put 7lb on so including cycle weight which I always come back with am a stone heavier than I should normally be which is a strange feeling but if I was under 9st 7 it’s possible that I would have to delay treatment to bulk up!!! So for once it’s bring on the magnums .
Looking at 7 weeks Monday-Friday 35 radiotherapy sessions at St James alongside 2/3 chemotherapy sessions..
Advised no hair loss as chemotherapy is targeted may loose some hair under my hairline due to radiation burning ,dry mouth loss of taste buds saliva glands Appointment for next day Leeds dental,hospital as they need to check my teeth, as if not in good condition may need extractions . Fingers x that over 20 years of dentist 3 months check ups pay off .
Important question when can I travel to apartment !! Reply if it was for an holiday 3 months but seeing as you would be going for rest and recuperation after treatment finishes and you feel like it you could travel as long as sensible.So maybe looking Jihns 60th in November.
Tuesday 26th June Leeds Dental hospital not a pleasant experience but teeth given the ok thankfully.
Wednesday 27th June Routine mammogram really upsetting ended up comforting the nurse !! Side note came back clear yeah result .
Tuesday 2 July. Sounds like a nuclear war is starting so not be late arrive 0750 your nuclear injection will be ready and can’t wait .So,off we troop in Leeds at 0715 injected lie perfectly still one hour then into PET CT scanner and blast away this scan is looking for any tiny pieces of cancer that has broken away so once again stillness is the order of the day and get commented on my capabilities of once more remaining still.
Tuesday 3rd July
MDT meeting with oncologist to,discuss treatment plan , PET CT scan not ready yet but confident that treatment plan would go ahead as discussed he would,only write or ring if anything else showed up and was confident that his appraisal was right.HPV16+ markers had been confirmed and was linked to the cancer cells.
I asked had tonsil been removed he had a look and. Said nope some still there but chunky pieces taken out .
Given long list of side effects and treatment as per previous week and all set for the 16th of July .
We then proceeded to have a conversation all about travel and how he booked his,own fly drive to the USA later this month and apologised . I said don’t worry I won’t be taking over your job in return. What a lovely guy we bumped into him on first treatment week and he came over and had a few words with us ,which he really had no need to do. He took great interest in Nicola’s role in the NHS a true gent.
Ancillary meeting dietician and swallowing clinic initial talks more on that in later posts.
In the meantime bring it on.
Ok the question everyone wants to know why and how , simple I could have had it from birth it could have come from Johns mums and birth it’s a mutant gene , John had had shingles twice me never it’s it’s not something that can be prevented in our generation .But good news if you have a daughter please please get her into the vaccination programme around 12-13 and on a more positive news the House of Commons is shortly going to announce a programme of vaccines for 12 -13 year old boys so please please do it.
Remembers ladies HPV16 + is also the cervical cancer trigger so keep your smears up to date , In my early 20 s s I never had totally clear smears always a little bit of something there.
Head and neck cancers in young males HPV16+ it is said to be the fastest growing cancer in young males throughout the USA at the moment. It’s no longer the old tried and tested cigarette and booze although in my case it helps immensely not having to,kick either habit prior to treatment.