CAUTION RADIOACTIVE MATERIAL

Yesterday I swallowed a small pill containing 3700 MBq (mega becquerels) iodine 131 and became radioactive. This is (hopefully) the last part of my treatment for thyroid cancer, following my thyroidectomy earlier in the year.

This ‘remnant ablation’ is to mop up any stray cancerous thyroid cells. They love iodine and so having starved myself of iodine for the past 2 weeks (think dairy, egg, fish, nut free diet), any stray cancerous thyroid cells in my body will take up the radioactive iodine and be destroyed.

For the first few days I’m too radioactive to be allowed anywhere near anyone else. I’m in isolation in a lead-lined room at Edinburgh’s Western General hospital. All surfaces are covered in a thick layer of sticky plastic with CAUTION RADIOACTIVE MATERIAL marked on everything. The only person allowed into my room is the medical physics person who measures me with a Geiger counter each day but even she keeps at least a metre away from me at the moment. She has a tape measure to check her distance. Everything I’ve brought into the room and touched after having my pill can’t leave the room (Unfortunately I didn’t think that through properly regarding clothes and underwear for going home). It all goes into the radioactive bin in my room. Visitors are ‘discouraged’. ‘

Once my counts are low enough I’m allowed home but still with no close contact (less than 1m) with children and pregnant women nor prolonged contact with anyone for possibly another week – maybe sooner depending on my counts.

I have a long list of ‘advice’ to ‘adhere to’ to reduce or avoid contamination. Whilst in the hospital I have to drink a lot of water and shower several times a day. Once I’m allowed home, but before my ‘cleared safe’ date (which could be anything from this Sunday to the next) anything that I touch can be contaminated so I’ve to wash clothes, crockery and bedding separately.

I’ve been allowed to keep my phone and iPad (laptop not allowed) as they can be wrapped in plastic but there was initially some doubt about the chargers as they are difficult to fully cover. It was finally agreed that I could keep my chargers if I only touched them after washing my hands and using plastic gloves. There is no wi-fi so I’m having to massively increase my data allowance. I couldn’t bring any books unless I was willing to bin or leave them.

Aside from the radiation, there are some benefits. Most importantly I am able to sleep undisturbed all through the night. All my meals are prepared and left at my door and there is no washing up to do as the (paper and plastic) plates and crockery don’t need washed as they go straight into the radioactive waste bin. I’ve got a tv and phone. And I had the best view ever for Edinburgh’s amazing end of festival fireworks.

Team Anna is in action at home. My Mum and aunt Patricia are doing an amazing job running the house, making sure everyone is fed and getting to and from where they need to be. I know from experience that it’s best to try and keep to Anna and Nathan’s routine as far as possible. Anna’s carers are doing a wonderful job getting her up and dressed, putting her to bed and looking after her through the night. Friends are ready to step in (remember the snow?) and school are hugely supportive as always. It makes such a difference knowing that everything is ok at home.

X

Happy Mother’s Day

It’s almost 2 weeks since my surgery. I’ve been home over a week and my stitches came out (painlessly) 3 days ago. My scar is neat and minimal – I think it will vanish almost completely in time.

I spent much of the first week after surgery in bed feeling pretty awful, both in hospital and at home, but since then I’ve been up and about more and more each day and feeling almost back to normal. I do get tired more quickly than usual but was well enough today to go out for a lovely Mother’s Day tea.

Thank you for all the help and support from everyone and my lovely cards, flowers and gifts. It’s all been hugely appreciated.

And a very special thanks on this Mother’s Day to my amazing mum, who has looked after me and made such a good recovery possible. I think she is looking forward to being allowed back to her own home tomorrow.

X

Back home

I’m so relieved to be back home, to see my children and be looked after by my mum. The weather red alert and massive amounts of snow made it quite difficult but I’m very grateful to have been collected from hospital in a 4×4. Thanks to all those who made that possible.

I’m sore and uncomfortable and struggling to sleep. My throat is still swollen and it’s hard to swallow. Talking is a bit of an effort and my voice sounds a bit weird but hopefully everything will get a bit better each day. I’m still on a mixture of pain relief and started thyroid hormone replacement this morning.

Although the original care plan for Anna has not worked out due to the travel difficulties caused by the snow, enough people are managing to get to us to help through the day – in the morning to get her up, during the day to get her to the toilet and at night to put her to bed – as well as bringing supplies, many of them walking to us as the roads are still so bad. It’s hugely appreciated. I had optimistically thought I would be able to help as soon as I got home but that’s clearly not possible just yet.

Thank you everyone for all your help, good wishes and ongoing support.

And let’s hope the snow stops soon.

Xxxxxx

Update on surgery Tues 27th feb

Morning of surgery:

Due at St. John’s 11am. No spaces in car park so dropped off by mum. No beds on ENT ward so admitted to day surgery ward.

Booked in, seen by consultant anaesthetist and surgeon, tea and breakfast chosen (optimistic), obs done (blood pressure still high), hospital gown and stockings on and taken down to theatre for around 2pm.

Everyone keeps calling me Ann.

Evening of surgery:

Update from my mum: Ann Marie came safely back to the ward at about 6.45pm and is sleeping comfortably. The nurse was discouraging any visit tonight as Ann Marie much too sleepy. All well as far as I know.

Comfortably is not a word I would have used if they had asked me.

After Surgery:

Requested full dose of anti sickness so nausea dealt with. Requested full dose of pain relief but still very sore. Morphine throughout night. Slept badly each time morphine wore off. Not allowed to lie down. Drain in neck. Very very very sore throat.

Missed tea but given egg sandwich with cup of tea. Eating makes me choke. Still calling me Ann. Have stopped correcting them.

Morning after:

Still sore but not as bad as yesterday. Unlikely to go home today. Family visitors only in hospital. Anna’s overnight carer unable to get there last night due to snow. All West Lothian schools closed due to snow today. Family and friends amend Anna’s care plan and work out how to look after her (ie take her to the toilet) when not at school.

Waiting for consultant to get further update.

Thanks for all good wishes, help and support. Much appreciated.

Xxxxx

Anna’s care

I’m think I’m just about set up for hospital and surgery for my thyroid cancer on Tuesday. My biggest challenge has been putting a 24 hr care plan for Anna. Because she has such limited muscle strength, she needs help with every aspect of her life through both the day and night. Her dad and I don’t live together any more and he is unwilling to help in any way so I’ve had to ask social work for more help. Anna already has a care package for support 2 evenings and 2 nights per week but I’ll be in hospital for up to 3 days and then unable to lift for at least 2 weeks so have assumed initially I’ll need full time (day and night) help for 2 weeks.

It turns out to be unbelievably difficult to find agencies that can provide staff to help. After several days of searching, Anna’s social worker said that he had run out of possibilities for at home support and he would need to start looking at residential care. The last thing Anna needs when she knows her mum is going into hospital for treatment for cancer is to be removed from her family home and sent far away to be with strangers whose age and needs may be very different from hers.

Luckily we live in an amazing community where friends and family will do anything they can to help. Anna’s personal assistants, past and present, have been willing to do many extra hours, despite having their own family commitments. My mum is coming to stay and look after me as I recuperate and recover and friends and family have put together a rota to make sure there is someone available to help in the house over and above care package /visit or pick me up from hospital/make sure Nathan gets to and from his activities etc…I’m hugely grateful to everyone who is helping in any way.

Leaving your family in the care of others is hugely difficult but I have absolutely no choice. I have to deal with my cancer and recover. There is no other option.

X

Pre Op

My pre op appointment was today. Although my surgery is St. John’s hospital in Livingston, my pre op appointment was in Edinburgh at Lauriston gardens. Nightmare for parking.

I had to answer a million questions (or felt like it…) about what I have had in the past, what my family history showed from the past, my current condition/S…

But luckily I passed enough to ensure surgery can still go ahead next week.

Good points:

I’m allowed tea and toast on the morning of surgery up until 8am (I had presumed fasting from midnight so this is really good news)

My ECG showed all is well with my heart, including left ventricular

I didn’t need the camera up my nose and down my throat again.

Sounds like I’m having just a thyroidectomy rather than the full neck dissection (which not only sounds awful but has much longer recovery time)

Not so good points:

My blood pressure is higher than they would like (hence the ECG)

More bloods taken (I’m not great with needles). They did the left arm today as still a bit bruised on my right arm from CT dye injection.

It’s clearly going to be very painful and I suspect pain relief will lead to nausea

Questions unable to be answered so far:

Is there wi fi on the ward?

Not sure if good or bad:

Suggesting I might need 2 nights in hospital – bad to be in hospital but good as even with lights on ward all night, possibly sleeping amongst 18 strangers, on pain relief and anti-emetics and nurses doing obs every few hours still likely to be a better nights sleep than at home.

Other points:

The operation itself lasts around 4 hours. I’m on the afternoon list so at the earliest will be in theatre until tea time. I’ll start thyroid hormone replacement immediately. I’ve to be vigilant about calcium deficiency which shows itself as pins and needles around mouth then in extremities.

CT scan

I’m starting to count down the days now until my operation next Tuesday. The CT scan was today and my pre-op appointment is tomorrow. My consultant/surgeon said the scan was mainly so he could see the exact position of everything before he operates. It all went fine. As Anna (9 years old) has undergone many of these hospital procedures she was able to advise me on the process and, most importantly, the potential for pain. She assessed the CT scan as pain free, telling me the important thing was to lie still. Unfortunately neither she or I knew they were going to inject me with iodine to give a good contrast to the images. So not quite pain free – just a small needle prick. It was fast. I was in and out of St. John’s within just over half an hour. Any other time I’ve been there it seems I have to wait for hours. I’m beginning to think that the more serious the situation, the quicker you are dealt with.

Since I was in the hospital already, I went to find the ward for next week (19a). I had a quick chat with the nurse about beds/rooms etc. It looks like every other ward I’ve seen in the last few years just less child like.

Treatment

Treatment is the surgical removal of the thyroid gland, followed by life long thyroid hormone replacement and then possibly radioactive iodine treatment several months after surgery.

My surgery is booked for 27 Feb. I’ll be having a CT scan the week before mainly, I think, for my surgeon to get  clear view of what’s happening. The specialist thyriod nurse is available for me  to speak to and answer all my questions but really I just need to get it done as soon as possible. I’ll be in overnight but unlikely to be longer. However I’m not allowed to lift anything heavy when I’m back home presumably while my stitches heal.

I’ll start on thyroid hormone replacement straightaway. I don’t know any more than that at the moment. There has been a lot to take in.

x

 

 

2 February 2018

 

Last November, I found a lump in my neck. It was big enough to be visible but I didn’t know how long it had been there. It wasn’t sore.

I went to the doctor who referred me to Ear, Nose and Throat on the 2 week fast track (cancer) pathway. 2 weeks later, I saw a consultant who examined it, looked down my throat by putting a small camera through my nose and removed fluid using a needle. I received a letter within a week saying there was no cause for concern as it was just fluid. He had ordered an ultrasound as a precaution which was done days later.

At the ultrasound, the radiologist identifed a small solid part to the lump so asked me to come back for an ultrasound guided aspiration (taking a cell sample with a needle using ultrasound to guide him). It went ahead early January. I received a letter a week later saying the results showed that I needed surgery and an appointment had been  made with the consultant with expertise in thyroid surgery. I saw him last Friday where he told me I had thyroid cancer. The whole process took less than 8 weeks.

He gave me bad news but also good news. I have thyroid cancer – papillary. It’s low grade (non-aggressive), treatable and curable with a 98% chance of successful treatment.