blodeuwydd's blog

Bronwen's story

2010-05-05T20:59:25Z

3rd September 2009:

Just discovered this site.

I found I had had cancer eight weeks ago, when I had a lump in my neck removed (it was a secondary from a squamous cell carcinoma) and a left neck dissection to remove the surrounding lymph nodes. I had been feeling particularly well and fit this summer, so this news came as a shock (doesn't it always, though?)

Apparently, head and neck cancers often present with a lump in the neck, and the primary cancer is most often in the mouth or throat. In my case, neither investigation under general anaesthetic nor a CT scan showed up any primary in these areas, so my diagnosis at the moment is officially 'unknown primary'. The consultant surgeon told me that it is possible that my immune system overwhelmed the primary and it is long gone - I had no idea that this could happen. Alternatively, I may have an obscure primary, possibly lurking in the nasopharynx (up behind my nose, I think it's the area commonly known as sinuses). I had a PET scan at Cheltenham yesterday and will be going back to clinic next week to be told the results. After this my treatment plan can be finalised.

I have been recommended to have 30 fractions of radiotherapy over six weeks, with two doses of adjuvant chemotherapy (one at the start of treatment, one half way through), to enhance the effectiveness of the radiotherapy. I guess if the PET scan shows a hidden primary, this plan will be altered.

At the moment I am feeling substantially recovered from surgery. I'm still very numb and quite stiff around the left side of my neck and left shoulder. But I feel I have almost recovered my normal energy level. I've started cycling again this week (very proud of this!). I started going to aqua-aerobics a couple of times a week again about three weeks after surgery, when I was still resting in bed every afternoon. My husband and I went back to ceilidh dancing on Monday evening a couple of weeks ago, so it's slow but steady progress.

I'm not yet back at work, which I had originally thought I would be by now. I have realised that it is pointless going back until I know the PET scan results, I wouldn't be able to concentrate properly. Plus, it probably makes more sense to rest and recuperate, still, in preparation for the radio and chemo treatment. I will have to stay overnight in hospital for the chemo. and I am expecting the whole treatment to make me exhausted again, once it's underway. So I am concentrating on building up my strength again, for now.

6th September 2009

Well, at 9.00 pm on the evening I wrote the above, I had a telephone call from the consultant surgeon to say he had had the PET scan result. It was more or less clear but there was a suspicious area on the left of my tongue. This had been biopsied before the neck dissection and come back clear. It could be just that the area was still healing. But he thought he should have another look and could I come in the following day?

So, it was back in for another general anaesthetic and more biopsies, but luckily did not have to stay in overnight. So now I am just a bit tired, still, and nursing a sore throat again. He said again there was nothing visible to the naked eye, but biopsies have been sent off, they should hopefully have the results when I go to clinic on Tuesday 8th Sept.

It hasn't stopped me going to the cinema, as planned, with husband this afternoon - first time I've been out to something like that since surgery - it was great! Bumped into an old friend there who was treated for lymphoma a few years ago and he was looking really well and is down to yearly check-ups. So good for morale to hear these stories ....

8th September 2009

My diagnosis is no longer 'unknown primary' - they have found the primary lurking in my left tonsil bed. Considering I only had the PET scan 6 days ago, and the extra biopsies 4 days ago, I think the surgeon has done some pretty impressive detective work on my behalf.

RT and chemo is still the recommended treatment, but now with the RT focussed on eliminating the primary, as well as treating the neck area. Treatment start put back a week, while they revise the treatment plan. Just let me see off this sore throat, so I can feel like making the most of feeling fairly fit, again!

20th September 2009

Now due to start RT this Tuesday 22nd September, as a day patient; then going in overnight on Thursday for Cisplatin to be given. Hoping to be out again Friday afternoon, as we're due to take our son to Aberystwyth to start university there.

Wish I could fast-forward to the treatment being over with, but alas! the only way is through it.

I have been feeling very frightened about the treatment plan, afraid that I will get very ill and, if so, that I will become depressed and feel like just giving up. People on this site have been incredibly supportive and encouraging. And I have wonderfuul support from my family and friends. But nevertheless, I have been dreading what is to come. Today I have finally been able to visualise the second half of my treatment as a journey - I can see a path leading up into the mountains. I know I have to take this path and I have been preparing for what might come, as best I can. And today, I have finally felt confident that I can do it. I know that other people have trodden this path and they are waiting at the far end of it for me, encouraging me and giving me the strength to follow them. I know I face the unknown and it may be hard and I may feel despair at times, but I also know I am as strong as the next person if I have to be. And I will do this.

5th May 2010

Sorry not to have been able to keep up this blog!

I started treatment and even got to take our son up to university and see him settled in (despite vomiting so uncontrollably overnight that I ended up with a brief admission to hospital in Aberystwyth).

However, then became very tired, with increasing nausea, vomiting, pain on eating, morphine, even more nausea and vomiting. By the end of radiotherapy treatment I was really ill and just got worse, not better. Two emergency admissions to hospital, one just before Christmas 2009 (acute renal failure), the other in January 2010, when they finally diagnosed severe malnutrition. Once they had given me various supplements, blood, a high protein/high calorie diet I finally started to improve, from the middle of February onwards.

It was very frightening, at times. Looking back, I don't understand why it took so long for the oncologist to realised what the problem was and start treatment.

Anyway, I am now back to virtually normal levels of energy, even though eating is still a challenge (painful mouth/throat, not enough salive, taste changes). I'm still more than 2 stone lighter, so that is the silver lining - I've been told I am an elegant shape! which is not something people said about me before.

The really good news is that I have just started back on a graduated return to work, after 9 months absence. And the love and support I have had from friends, colleagues and family has been way beyond anything I could have imagined and is what carried me through a very grim winter.

So, this is a message of hope to everyone who visits,

with love,

Bronwen x

RT and chemo - Head and Neck

2009-10-11T17:07:19Z

Day 1 - Tuesday 22nd September

At last. Although I've been full of trepidation, it feels good to have started this part of the treatment. Because of needing further investigations to find the primary, it is 10 weeks since I had surgery.

Naturally everyone at Velindre Cancer Centre is extremely kind. I am reassured that I can swallow, even cough, if I need to while the RT is being carried out. They are treating 5 fields (I realise I don't understand quite what this means - must remember to ask), so it takes 10 - 15 minutes for them to set it up and give it, longer than that today because it was the first time.

Having the RT itself is simply weird, not unpleasant. I'd forgotten that, once the perspex shell is put over my face, I have to have my eyes shut and so I cannot see anything else that happens after that. It is a bit like a party game, where you're blindfolded - voices come and go, people touch you suddenly, or suddenly bang the shell, but you can only guess what is going on. Quite strange.

I've been advised to start using aqueous cream on the skin of my neck straight away, so go to buy some after I get home. I am a bit dismayed to find that I definitely have an immediate skin reaction, with a reddened, warm, slightly itchy area. I think the cream helps slightly.

I'm very focused on eating as well as I possibly can (large salad and tinned fish for lunch) and also trying to eat things now that I may not be able to manage to eat once the sore throat and mouth kicks in.

I'd been looking forward to having an excellent excuse to eat loads of chocolate ice-cream once I have difficulty with solids, but oh no! They told me today cold foods were NOT recommended in that case. Suppose I'll have to make do with loads of chocolate mousse instead ....

Went to the hospital on my bike, but don't expect I'll be able to do that for long. Also, went back to the new term of my yoga evening class tonight - fantastic to realise there were very few exercises I can't do properly (because my left should has not regained its full strength). And lovely to see the regulars again. And I feel balanced, physically good, despite the numbness, stiffness, tingly skin. Is this the power of the mind over the body?

Day 2 - Wednesday 23rd September

Well, it was much easier than yesterday, of course, because of knowing more what to expect. And I had an extremely nice Senior Radiographer, who explained about the 5 fields - apparently 4 are directed towards the site of the primary and 1 is directed at the area in my neck where the secondaries were found in the lymph nodes. She also said that the treatment takes longer on the first 3 days, because they are taking 'check images', to check that the areas they are treating are exactly those marked on the treatment plan.

Morale boosted by going to Pharmacy for an oral care pack, to find that the pharmacist assumed I was collecting it for someone else: I might be going to look and feel wrecked very shortly, but clearly I look okay at the moment!

I was recommending this site to someone I was talking to in the waiting room, partly for the quality of the information and partly because of the wonderful emotional support everyone offers.

A big 'thank you' to everyone who left encouraging messages for me after yesterday's blog entry, and:

- yes, the aqueous cream seemed to sooth my skin well. When I looked last thing before going to bed, it was actually only the skin around my scars that was still red. Considering it's still healing after surgery, it's hardly surprising if it reacts quickly to the RT.

- thanks for the reminder to drink plenty - I'd taken my water bottle with me to the hospital, but then NOT brought it with me while I looked on-line - I must remember to carry it round the house with me, too, mustn't I? Just been to get a glass of water now!

- and I'll remember the tips about keeping the aqueous cream in the fridge, tinned salmon with mayonnaise, chocolate milk, and chicken noodle soup.

I have to confess I've been treating this as an occasion to go round the local M&S Food Hall, allowing myself to look at things that I would normally never buy, as they're too expensive. E.G. salmon terrine, strawberry milk, tiramisu. Presumably, if you can only eat soft things, it will still be important to eat a variety of different foods, still? I only hope I'll still be able to taste them ..... Meanwhile, I'm making a point of enjoying crunchy salad, salt and vinegar crisps, oatcakes, courgette with garlic, chili and vinegar, while I still can.

No more posts for a few days, as I'm being admitted following tomorrow's RT to have cisplatin IV overnight. Then, once I'm discharged the following day, the plan is that we are taking son up to start at Aberystwyth University, where we'll be the weekend, before coming back from RT Day 5 on Monday.

Day 6 - Tuesday 29th September

So, the start of week 2.

Had the first chemo overnight last Thursday, as planned. Apart from being woken regularly by the alarms as various bags of IV fluids went through, it was very straightforward.

Unfortunately, although I felt ok on leaving hospital, I was quite nauseous on the journey to Aberysytwth (3 and 1/2 hours drive). I was sick just before we arrived at the place we were staying, and although I took my next dose of anti-emetics and went straight to bed, I went on being sick every two hours or so. Finally admitted defeat at 4.00 on Saturday morning, and got taken by ambulance to Bronglais Hospital in Aber. The paramedics were just brilliant, and so were the nurses in A&E. Basically they gave me an IV dose of one of the drugs I'd tried to keep down orally, checked I wasn't dehydrated, let me have a couple of hours doze and then tried me with toast and tea. Hurrah! it stayed down and I felt like a proper person again.

So, I got to see my son's room and see him starting to settle in, which is all I wanted. Then I went back to the place we were staying, had a shower and slept all afternoon, while my husband and daughter did an heroic job moving all Steffan's stuff from the car then going with him to do a big supermarket shop in an extremely crowded supermarket. I think we all slept well that night.

The nausea has subsided gradually since then, today I'm only taking one of the anti-emetic drugs and feel okay with that. I'm much more tired than before the chemo, though - the thought of cycling anywhere is laughable! I must say, even though I was told that the chemo would enhance the impact of the RT, I still hadn't expected such a dramatic impact - I'd still been thinking that this week would be much the same as last week.

Definitely taking a day at a time. Today was good - met 2 friends for coffee/early lunch on my way to Velindre, which was lovely. Then my RT treatment was on time, for the first time, and even stopping to have bloods taken I was only in the hospital for half an hour.

I realise I will not be able to make blog entries every day, by any means - I was far too tired yesterday. But I intend to make entries when I can.

Sunday 4th October

Horrible night last Tuesday, after last blog post, waking at 3.00 with pain in my abdomen and not getting back to sleep (other than dozing enough to have a vile dream about being in a chemical fire, then waking and thinking I could still taste the fumes in my mouth). Seen in clinic, constipation diagnosed, Movicol prescribed; I took some as soon as I got home, went back to bed and the pain slowly subsided over Wednesday. Rang a friend to ask her to take me to the hospital on Thursday, as I realised I feel I need to be looked after, a bit, and to have company if there's a long wait.

So, finished Day 9 on Friday with huge relief at the prospect of having the weekend off, to recover a bit.

On the positive side, the nausea finally went on Friday, so at least there are more things I can eat, in theory, and I can think about what food I might try without feeling ill. Apparently the nausea is definitely from the chemo, so may recur after the second cycle but then will subside again.

The current challenge is that, since Friday, my mouth has become extremely sore. I am managing to drink plenty, and I had started using the mouth care pack I had been given. Who would ever have thought that Normal Saline could be so incredibly soothing? I've been a nurse for nearly 30 years and, to my shame, had never realised how marvellous it feels to have your mouth cleaned gently!

I am waking a couple of times during the night, but getting 6 - 7 hours sleep in total, in three separate lots - that's okay with me, it's enough to feel rested and refreshed.

Last night, when I was awake, I planned a complete menu for myself, for today, consisting of drinks, soups and very soft food. So today over breakfast (porridge with a lot of milk on it - heavenly) I was able to tell my husband that he needn't worry about what I might want to eat today, he could just sort out meals for our daughter and himself. Feel quite proud of this, for some reason!

Lastly, a big 'Thank you' to the people who left such lovely comments on my last blog posting, I'm sorry I haven't been in a fit state to respond to each one individually. Please know that your kind comments and messages of support gave me such pleasure and are very much appreciated! Much love to you all.

Sunday 11th October

The idea that I might be able to post regularly to this blog once I started treatment was clearly over-ambitious. This last week my time has been entirely taken up with looking after myself or just resting.

They have not managed to get my painkillers quite right all week, for some reason, so although I have been okay some of the time, it's been very difficult to eat a lot of the time. I have managed to drink and eat enough, but it's been a struggle.

I've left a message for the Macmillan Nurse asking for a visit tomorrow. I'm taking 30 mg codeine and 500 gm paracetamol every 3 hours, plus Voltarol three times a day, but I'm not sure it's quite enough, I definitely need some advice.

Although I would rather be at home than in hospital, I'm finding the lack of support a problem. There's no-one you can ring from Friday to Monday, and no-one actually checks how you are on Friday, before the weekend.

I'll be half-way through tomorrow, so if it's a mountain I'm climbing, I suppose I'll have reached the summit. Then I'll be able to start the long journey back down - often harder than the ascent, as I know from experience.