In the second part of our fundraiser Geoff’s treatment journey we will go with Geoff through his treatment and his recovery. This part of the journey is hard and we have decided not to spare too much of the detail. We want this site to be as honest as possible about what treatment is like. If , however, you have recently been diagnosed and are not sure you want that sort of detail about treatment then please stop reading now.
Everyone is different and some people will want to read about treatment ands others will not find it helpful. Neither is right or wrong and whatever works for an individual is what is right.
What we will say though is that while the treatment is really tough and harsh as I write this Geoff is some 5000 metres above sea level, trekking in the Himalayas so, it takes time but you do get better.
As with the first section of Geoff’s journey – this is in a Q and A format , with our questions and comments in bold.
How soon after referral did treatment start?
On 27th June, 5 days after receiving the diagnosis, I had an operation to remove my tonsils. Thankfully this was successful and the results that came back confirmed that the left tonsil was indeed the primary source of the cancer.
Did you feel you treatment was explained well enough to you?
Yes, I took the view that I was working in partnership with Vin to get the right result and both me and my partner felt totally comfortable in asking any questions where we wanted any clarification.
Were side effects explained properly?
I knew it would be uncomfortable and my throat would be sore for a couple of weeks, but I guess I hadn’t quite bargained for the effect on my overall well-being that comes from having a fairly serious operation.
How long was your initial treatment for?
I had a one stay in hospital after the operation and then it took roughly 10 days for my throat to settle down enough to eat normally again and to stop taking any painkillers.
What was the hardest side effects during treatment to deal with?
Difficulty in eating, drinking and swallowing. It was not always easy to even get the painkillers down!
Some patients may be offered a PEG tube if the doctors are worried that they are not getting enough nourishment.
What happened next?
19th July – 3 weeks after the tonsil laserectomy, I had a follow up appointment to discuss the next course of treatment which I was expecting to be a neck dissection to remove several lymph nodes including the tumor.
The appointment took place in a room where I was surrounded by 10-12 people from the Cancer Management Team which included Vin and the Senior Oncologist. I felt this situation could be quite intimidating for a lot of patients and was quite grateful that my partner had come along to this appointment.
That said, it is also reassuring to know that you have so many experts in your corner – the Speech and Swallowing Therapists, Dentist, Dietician and MacMillan Nurse Specialists – with everyone offering great support and encouragement.
I was informed that having reviewed the scan again, it was felt that the tumor was too big (above 3 centimeters) and that it may be better to have 6 weeks radiotherapy and chemotherapy, rather than the operation. It was stressed that it was my decision and after we asked as many questions as we could think of, I signed the consent papers.
Leaving the hospital, I felt quite deflated as I had hoped at this stage that I might have been able to avoid chemo/radiotherapy particularly as it had been explained that this treatment can be more severe when applied to the head/neck area and has more side effects (some potentially permanent).
The following week, we started the mask fitting which took 4 separate visits including a further CT scan. Again, everyone I met in the cancer unit of the Freeman Hospital were kind, informative and very helpful. The team made the process as quick and easy as possible taking care to ensure the mask was a perfect fit to ensure I couldn’t move my head during treatment.As a result, anyone who suffers from claustrophobia may find the experience rather uncomfortable.
2nd August – final appointment with the team prior to starting the treatment, only to find out that they were now thinking that the neck dissection may be the best option. Again it had to be my decision, but now I did a feel a little confused about what would be the best way forward. In the end, I had faith in Vin – he would be carrying out the procedure so I emailed him and gave my consent.
18th August – operation day and we are made comfortable at the Nuffield Hospital. The operation is successful and I now have an impressive 7 inch scar on my neck. There is a lot of pain but this is well managed with painkillers and at least I am able to eat pretty much normally following this operation.
After 2 nights in the hospital, I am discharged, however there is real discomfort from one of the draining tubes still inserted behind my ear. It’s 2 days before it can be removed which means I am constantly carrying a container everywhere I go.
Again, it took about 10 days to start to feel okay after this operation and make my first tentative steps back in the gym.
13th September – The good news is that the operation has been a success and the tumor hasn’t spread to any other lymph nodes. There has however been “extra capsular spread of the disease” and as a result I am going to need 4 weeks radiotherapy, although no chemotherapy.
This can happen when the medical team are concerned that cancer cells that may have been missed during surgery could become problematic. This can mean for some patients radiotherapy, or chemotherapy or sometimes both after surgery.
Thankfully though, Vin tells us that I am now basically “cancer free” which feels like a cause for celebration. He is also delighted with how the scar is healing, clearly happy with his own handiwork.
18th September – back for mask fitting, thankfully they have kept the one from July and it is still fit for purpose. A further CT scan is scheduled and then the 4 weeks radiotherapy will run throughout October, Monday – Friday.
2nd October – trial run today and then first session tomorrow. I am optimistic that I can get through this treatment as I did the operations.
Early evening after the second session and suddenly my face and jaw have had some reaction and swollen massively. It feels like I’ve been kicked by a horse! By morning it has started to settle down a little, and when I am talking to the team they confirm that this is unusual, but should improve.
The next 2 weeks go well, I drive to hospital each day and manage to keep going to the gym and play a couple of rounds of golf.
It’s not the most pleasant experience getting the treatment – the mask is tight and not at all comfortable, however most days it’s all over within 20 minutes.On the plus side, I have my own music playing and am able to do a Reiki treatment on myself throughout the whole process, which I find therapeutic.
Reiki is a Japanese treatment which some patients , like Geoff have found very useful. There is very little clinical evidence to say exactly what benefits Reiki has but people report, as Geoff has, that it can help people stay calm, relax and is therapeutic. There may be Reiki treatments on offer at your hospital or at your nearest Macmillan centre. Like everything it is down to individuals and if Reiki works for you and helps you, then you should use it.
18th October – I feel my energy levels start to dip during a round of golf. Food starts to have a strange taste and appetite not as good as it has been. The oncologist said this would start to happen when we had my weekly review yesterday and that I could expect the effects of the treatment to really start kicking in now. I am wishing that I had asked for painkillers to help me through this as it’s almost a full week until my next clinic review.
Over the next few days, my ability to eat goes completely and any semblance of well-being has just dropped off a cliff! Thankfully, prior to the next weekly review, the nurses are able to give me Ensure Plus nutrition shakes and a prescription for painkillers. Throat has become extremely sore and I’m amazed at how quickly I have gone from being okay to feeling quite ill.
October feels like the longest month on record! The last two weeks sees each day pretty much divided into 4 sections of 6 hours, which is basically when I start taking the next dose of painkillers. There are about 4 different types to take and I have major problems with swallowing anything. Even the soluble paracetamol is taking over an hour to get down.
I am eating no food at all now and on occasions only managing one shake per day when I should be having three. Quite suddenly, my weight has dropped off and I have lost one stone – I look ill and no clothes come anywhere near to fitting. Its all I can do to drag myself out of bed each day and drive the 7 miles to the hospital for the next session.
I am feeling chilled to the bone and even sleeping is now difficult as this always bring on a thick coating of yellowy/brown mucus in my mouth and throat which burns like acid and,despite the numerous mouthwashes at my disposal, is difficult and painful to clear.
I understand the importance of using the mouthwashes to avoid infection and help protect my teeth but it’s sheer agony trying to rinse or gargle in my current state.
In a sense, I am feeling fortunate that I live alone as I would hate anyone to see me like this and it would be difficult for them to get a normal night’s rest whilst I am continuously up and down.
October 30th – at last the final session, the last two or three have also required x-rays which has made the whole process quite a bit longer. I can barely speak when I present myself each day and I definitely haven’t got the energy to chat with the team looking after me. To make matters worse, the hair on the back of my head and stubble on left cheek and neck have completely fallen out.
I am also aware that the symptoms following radiotherapy are likely to get worse in the 2 weeks immediately after the treatment finishes and so it proves.The ulcers and inflammation in my mouth and throat are pretty bad but on my weekly clinic reviews, the MacMillan Nurses and Speech & Swallowing Therapists are happy that there is no infection.
I find these reviews really comforting – it seems that I am experiencing nothing other than what is expected and they seem to be happy with the rate of my progress.
15th November – I have my first proper food – some fish which I can only vaguely taste but can just about swallow and by the end of November, I am eating more normally although have to be careful to avoid spicy foods, fruit juices and other sharp flavours. On the plus side I can manage a pint of Guinness or two and decide to book a couple of days in the Lake District to do some short hikes. I still feel pretty weak and as yet have put no weight on, but the fresh air and change of scenery does me good.
21st December – appointment with Vin and a great early Christmas present – he checks my neck and throat and tells me that he is happy that the treatment has been a success!
Quite simply, it’s a huge relief. A follow up PET scan will be arranged for end of January just to be absolutely sure.
1st February – PET scan result is all clear – time to celebrate!
By the end of February (4 months after radiotherapy finished), my mouth remains sore with ulcers and also dry as saliva glands have been affected during treatment. Also taste is not back to normal, but overall general health much improved and I am living a full and normal life again. I do feel more tired than I used to, but I am told I can expect to feel like this for about 12 months after the treatment.
I returned to work on 4th March on a phased return basis and it will be good to see my colleagues again and thank them for all their support. Then at the of the month I fly to Nepal to enjoy the delights of Kathmandu as well as a 10 day trek through the Himalayas.
In some respects, my journey will have gone full circle – 5 months after my last trek to Everest Base Camp I was about to get diagnosed with throat cancer. Now, exactly 5 months after my last radiotherapy session, I am going back to once again enjoy the peace and serenity of the mountains.
As you can see, Geoff had to undergo some really hard treatment with some very difficult side effects. This is what we have found with most of the people who have contacted us who have been through treatment – hard, painful, exhausting but people talk about how they adapt to their new situation and cope with treatment, get used to the new normal and get on the road to recovery. A long road , a hard road but one which is not impossible. There is one more section of Geoff’s journey to come where we will reflect on everything and talk about what he would say to anyone facing a diagnosis.