A lot of plans of a lot of people have had to change in the last few months.
Our plan to attend an Easter Rally at Weymouth was cancelled and I had to be content with video chats with the family – all very nice but definitely not as good. Such a shame as the weather was fantastic.
Camp sites were closed down for an unspecified time and the country has been locked down.
For most of the time the weather has been fine – a few not so good days but for England it was a good spring.
The most we have managed are trips around the house to our sun trap patio where we spent several quiet afternoons relaxing on the reclining garden chairs.
Through March and April my health was declining but not too quickly. Into May and I can feel things are changing.
Mary started really struggling towards mid-May and very sadly she passed away on the 23rd.
After it became clear that the Radiotherapy treatment she underwent had not cured her Cancer she has been under the care of Dorothy House Hospice. They promised her she could pass at home and in no pain.
On that Saturday evening she passed peacefully in her sleep. I was holding her hand.
A few days before she was pleased we reached our 15th Wedding Anniversary – telling me they were her happiest adult years.
Over our years together we have done a lot of things and visited a lot of places. We have holidayed abroad in the early years, finding a joint love of the country of Portugal which we visited many times. As things became harder health wise we stayed in this country but still managed many holidays. Recently our motorhome has provided the needed facilities as we travelled to many lovely places. We made the most of it.
She really enjoyed writing hardcopy diaries of our adventures – allowing me to transpose them into our Blog (she never was enamoured with typing). So I have many full A4 note books with her entries as well as postcards and entry tickets stuck in.
Things for me are still very raw – I’m not sure what I will be doing on here yet. I believe she would want me to continue posting but it is one thing typing in her words and totally another starting with a blank sheet.
The one thing she did make me promise was to attend Hermanfest whenever that is now – so if nothing else happens before you should get a post about that.
We have now crept into March of 2020 – meteorologically its spring and everything in the natural world is starting to grow. The narcissi are putting on a lovely display, even the bulbs in my garden pots are making the effort.
I’m looking at everything a little differently now.
But let’s go back to how I left things in my last Blog – I’d had an inconclusive result to my PET scan and was waiting for an Ultrasound scan in February.
During the wait my Lymphedema increased. I was told this was quite normal and that it would recover over time but to me it seemed to get firmer and much more sensitive to touch. Putting the moisturising cream on was definitely more painful. I couldn’t move my neck as much and was getting an increasing numbness around the whole area.
Early on a very wet and windy Monday morning in mid-February I had my Ultrasound FNA (Fine Needle Aspiration) – Doctor speak for an Ultrasound targeted biopsy. The procedure was uncomfortable, even with the local anaesthetic and pain killers I’m taking, but at least it didn’t take too long. We were in and out within an hour.
We detoured from our normal route home to check out where Nigel was to have his MRI the following week – in a private hospital because of the delay caused by the RUH scanner upgrade.
At this time I didn’t have an appointment to get the results of the test but figured I’d get a letter in a day or two. As it turned out I got a phone call the following Tuesday and arranged to see my Consultant at Bath the next day.
I was nervous and hardly slept that night.
The weather was again wet and windy on our journey to Bath and both Nigel and I were very quiet in the car.
At the meeting Emma confirmed that the biopsy had shown persistent residual Cancer. We already knew that there was no further treatment. Right at the beginning I had been told my heart wasn’t strong enough to go through a long surgical operation (about 10 hours) and that Chemotherapy would likely kill me. The Radiotherapy I had undergone had shrunk the tumour but not completely eradicated it.
Now the NHS is fantastic with wonderfully skilled Doctors and Nurses, but even with all the magical machines and drugs they can’t cure everyone.
Fate had dealt me a bad hand. Or is it heredity as two of my siblings have been touched by the disease in one form or another. Either way I am where I am – which is now under the care of Dorothy House Hospice. I have already had a couple of home visits – Sarah is very nice and has already proved her worth by getting my pain control adjusted so that I am more comfortable.
I’m still doing a lot of sleeping but at least when I’m awake I can get out a bit, just not for as long as I used to be able to.
We went shopping to our local town the other day, just for an hour or so. It was lovely to see all the spring bulbs as we passed and rub the Calf’s head for luck in Borough Parade.
I’m now taking Naproxen and have a Fentanyl patch, as well as the Co-Codamol with just a little bit of Morphine occasionally.
I’m pretty much pain free now (well as long as the patch doesn’t fall off which it did the other day). Looks like I’m good for a bit longer so I’ll ‘keep taking the pills!’
Nigel has been my brick throughout the whole of this – he has always been supportive and caring – I just worry that as the Cancer progress’s I may become too difficult to live with – I don’t want that for him.
I have started, in a small way, to get my house in order. I have already had a fight (figuratively) with Barclays Bank in order to close a small savings account. We’ve found a local firm who will make a home visit and draft our wills – something we have thought of more than once in the past but never got around to. No time now for procrastination.
I don’t know how long I have left (well I suppose nobody does) but I’m damn sure going to make the most of it.
As I said in the last Blog we are booked on a CMH rally in Weymouth for Easter.
Then something, as yet unplanned for May, followed by Hermanfest in June.
Voyager’s habitation Check is booked (mostly to get the gas checked after Nigel replaced the Truma Combi boiler). Betty has had her motor mover given the once over after developing a ‘cutting out’ problem at the end of last season.
So we will still be exploring and posting Travel Blogs when the weather improves. Our trips on the 2G’s may be a little shorter but I’m sure just as much fun.
I do still get angry at times (you know the ‘why me’ thing) and I can’t say I’m not terrified and dreading what’s to come. I’m tearful at times but mostly now when friends and family say nice things to me. Nigel’s sister Mel phoned the other day to tell us that Frankie (niece) is expecting a daughter in July. I’m really happy for her but sad it’s another little one I won’t get to see grow up.
Yesterday I was feeling so good but when I woke this morning my throat hurt and the constant sickness feeling was back. I didn’t take much pain killer overnight and after I had some things did improve a little.
Although feeling nauseous all day I did manage to have some more soup and lollies for lunch.
I also got some sewing done – thought it might take my mind of my problems – and still had a fair bit of sleep as well.
I have decided to keep off the OraMorph and revert to Paracetamol – hoping it will be gentler on my stomach.
More soup for tea – it seems the only thing I can get down without gagging.
Sunday 20th October 2019
I woke Nigel up at 05.00 this morning – I needed some pain relief and I get so confused as to what to take these days – we decided on OraMorph because it’s only a small amount and easy to swallow – even if it does upset my tummy a bit.
Ate all my breakfast of ReadyBrek today – another small step in the right direction. Then more steps in the form of a short walk down the lane – it shows autumn is really here – I could feel it in the air.
We went into town, got some ingredients for homemade soup (tomato) which I made when we got back. It was lovely and made a change from the chicken noodle tinned one I had been living on. Still only eating small amounts but regularly now so on the up.
Got a bit more sewing done (completed alterations to Nigel’s New Year suit and my Halloween outfit).
Monday 21st October 2019
I slept well last night – got through with only 5ml of OraMorph (doing well) and woke with a really positive attitude today. My wound itched a bit but at least it wasn’t hurting so much this morning when I stretch it (when turning) – more progress.
Lunch was a couple of spoons of soup which I enjoyed. I still have the sticky throat and try as I might I can’t shift it – every drink I try doesn’t help at all.
Tonight I thought I was going to be sick but all I did was retching on an empty stomach. As I haven’t eaten much I thought, grab the bull by the horns and try some scrambled egg made with butter (suggested by Nigel) with a bit of tinned tomato left over from his breakfast. I did eat a bit of the egg but have to say the tomatoes tasted better – enjoyed them.
Tuesday 22nd October 2019
A reasonable night’s sleep – woke up thirsty – still can’t find a drink to cut through the sticky stuff. I know it seems all I do is complain about it but at the moment it is a major part of what this is about.
I had a good shower today and my wound is now scabbed up so the water didn’t hurt – still putting plenty of Epimax cream on the new skin as it appears so it stays moist and doesn’t crack or get crusty.
I lost another 4lb this week on the scales at Slimming World which gave me my 6stone award – I think I will be happy to stay at this so am aiming to eat at bit more if I can to stop the losses. I chatted with my friends, all were very supportive, and Kathy suggested I try Lemon & Lime sparkling water (she even nipped out to her car for one). I put it in the fridge for later.
Hospital check-up this afternoon – they were very happy with my progress both the wound and my general demeanour. I don’t have to see them again until mid-November when I get to see my consultant again. We did our last YouTube Vlog for a while on our way home – me for a well-deserved siesta (long tiring day) while Nigel edited and uploaded the vlog.
I did try the L&L water and it’s helping cut through the sticky stuff better than anything else I’ve tried – result.
Wednesday 23rd October 2019
After yesterday I was very tired so slept most of today away. I did eat some ReadyBrek and more soup but not up to normal portions yet.
Thursday 24th October 2019
I thought I would feel better after sleeping most of yesterday but still not good.
I was due to have my hair done this afternoon but just wasn’t up to it. Emma came but we just chatted for a bit – me a bit emotional, but she is a good friend and was super reassuring. We have rescheduled for next week.
Friday 25th October 2019
A bit of an improvement this morning – still not as good as earlier in the week though. I had a good hot shower which made me feel better too.
Nigel went shopping for the last few things we needed before we headed off for our first weekend away since way back in early September – not really feeling up to it but I didn’t want to disappoint him. He says we don’t have to join in if we don’t want to but you never know.
It was a bit of a journey to Sharpness the M4 M5 junction was particularly busy (something to do with half term I believe) but even so we got to our rally field about 15.30 – it rained most of the way there but did stop for a short while after we had got set up. Our fellow campers were all in caravans and parked on the grass – we were on hard standing near the edge – our 5 tonne unit doesn’t do well on grass this time of year.
Saturday 26th October 2019
It rained almost continuously overnight (we could see puddles on the grass between the vans) and hadn’t stopped by lunch time.
Nigel had been regularly checking his rainfall radar app and predicted it would stop between 2 & 3 pm – I had my doubts. Still we were warm in Voyager so it was a restful day for both of us.
At about 3.30 it had mostly stopped – just a bit of drizzle – so we went out for a few minutes fresh air. Just 50 yards or so to a monument we could just see from our window.
Terry our Marshall popped his head in and told us the ‘party’ would start about 7pm in the Dockers Club.
We decided to go for it – got dressed up – me as the ‘Evil Sorceress’ and Nigel as the ‘Grim Reaper’ – if nothing else it would give others a good laugh.
I’m glad we did – it was only a small party (five couples with a few grandchildren) but everyone was very friendly. The Grim Reaper had to judge the children’s fancy dress – he was very diplomatic, after a bit of hamming it up with my ‘Staff of Interrogation’ he declared them all winners.
Then the adults were judged and against all odds we were named the winning couple – and presented with a bottle of fizz as a prize.
We stayed a couple of hours, but I was not up to any more so we returned to Voyager and had an early night.
Sunday 27th October 2019
What a difference a day makes! A chilly morning but not a breath of wind and clear blue sky.
After breakfast (earlier than normal with the clocks having gone back) we did all the usual chores then set off for a good trundle on the 2G’s.
Never having visited Sharpness before we didn’t have very high expectations but we found a lovely old docks the start of the Canal to Gloucester with many narrowboats and cruisers in the marina as well as good recreational areas with views of both the seven bridges.
We did one side of the docks in the morning where I collected some bits for a collage (just something I like to do)
returned for a warming bowl of soup for lunch and then the other side of the docks and the marina in the afternoon.
We were the last to leave at about 3.30 and were home by 5.00.
Although I was reluctant to come I’m really glad we did – it was a really good weekend and just what we needed.
Feeling a lot better and my wound is almost healed now.
This time last year we were in Devon (above) – can’t wait much longer to get away again.
Saturday 12th October 2019
Having a shower is hard at the moment. Nigel tried putting clingfilm around my wound so the water doesn’t make it sting – it helps enough to make the shower lovely.
My mouth still tastes horrible. I can only take my tablets crushed and mixed in custard but at least I’m drinking water better so some progress.
Now I just have to rest.
I have been trying all day to get something nourishing down my throat – the most I have managed is a couple of tablespoons of chicken noodle soup (less the noodles). I think if I had left it at that I may have been OK but I tried some flavoured yoghurt as well and by the time I went to bed I felt so sick I wanted to give up.
I phoned my brother Brian just to let him know I’m doing OK but he didn’t know what to say to me – I think I just needed reassuring everything will work out. Nigel tells me all the time but that’s because he loves me. I love him and I want to believe him.
Sunday 13th October 2019
I woke feeling stronger today. I do still have pain in my neck and it is still a big open wound but I keep hoping it is getting smaller – but I’m not sure it is.
I’m feeling better in myself but I’m still spending much of the day sleeping.
Monday 14th October 2019
I had a horrible sticky mouth through the night and felt really thirsty. Drinking wasn’t hard but I couldn’t shift the thick sticky saliva. Carol had given me some mouthwash tablets for this some time ago so I gave it a go. Unfortunately it just made me feel sick and even worse everything I drank for quite a time afterwards tasted even more salty than it had before – I won’t be doing that again.
I tried to eat more during the day – I had some ReadyBrek for lunch (only 2 tablespoons as a start) – shame it tasted like wood but at least I did swallow it.
I asked Nigel to get a couple of apples to stew down for my tea – worth a try. He did a good job of the stewing but I didn’t like the taste of them either.
Even though I’m sleeping pretty well during the night I’m still doing a lot of sleeping during the day as well – might be the morphine I guess.
Tuesday 15th October 2019
My sense of smell is returning a bit – for the first time I could smell my tablets as I crushed them up this morning – they were still hard to take in custard (making me retch) but I did get them down.
After another restful day yesterday it’s a busy one today – first its Slimming World where I found I had only lost 5½lbs (I would have killed for that a couple of months ago). This shows that I’ve been drinking a lot better and eating at least a little.
It was good to have a chat with old friends and meet a visiting consultant who it turned out was the daughter of the shopkeepers I used to work for in the village way back in the mid 80’s. It was nice to meet her – I remembered her as a naughty little girl.
Hospital this afternoon – they were much happier with me this week still wanting me to get more nourishment but pleased with the way my wound is healing. They gave me some anti sickness stuff which hopefully will help. They were also concerned about constipation – a known side effect of all the pain killers I’m taking – I just figured not much in meant not much out. They gave me some laxative that I only needed to take 10ml of at a time – I’ll give it a try.
Very tired when we got home so I had a late siesta for a couple of hours.
Wednesday 16th October 2019
I got up today feeling very positive after the hospital visit yesterday.
I took a dose of the anti-sickness jollop a bit before taking my custard tablets followed shortly afterward by some ReadyBrek with almond milk – tasted much better and went down well.
I’m going to have to start planning menu’s again.
Lunch today was more chicken noodle soup (less bits) followed by 3 grapes (less skins) – I felt quite elated to have eat that much.
I had my siesta in Voyager as Sharon (my lady that does) whizzed around with Mr Dyson and a duster. I’m still not up to any housework just yet and am lucky to have Sharon’s help – think this part of my recovery will take longer than the rest.
Evening meal – well after such a big lunch I just wasn’t hungry so didn’t have any.
I went to bed without a bandage – we reckoned the wound is dry enough now.
Thursday 17th October 2019
My wound wasn’t wet when I woke up so we made the right choice – it does look a lot like a scaly lizard though – but at least it’s getting better.
I had some milk (cows) and a couple of peeled grapes for breakfast – couldn’t persuade Nigel that peeling grapes was easy so I’m having to do them myself.
I did take some of the prescribed laxative which did its job – so one more thing not to worry about.
For lunch I had more soup and a pop up ice lolly which I did enjoy.
We went out in Voyager for a bit of fresh air and to top up the LPG in readiness for our next rally (Sharpness on 25th) – good to give her a little run now and again.
When we got home I was sleepy so had a couple of hour’s kip. I think it must be the morphine that is giving me some very odd but lucid dreams. Today Nigel and I were cycling (?) around Lacock on pink bikes spraying pink water everywhere (Freud would have a field day I reckon).
More soup for tea with another push up lolly. I will get more adventurous soon – just happy to be getting something down at the moment.
Friday 18th October 2019
OK so I maybe having morphine withdrawal – because I was fighting with this horrible person about having two ice pops and an ice lolly at 0400 this morning. I felt guilty for eating them and felt I needed my bottom smacked.
Awake properly at 0745 – I have taken most of my pills whole this morning just crushed the 2 biggest ones (progress). I had a small amount of morphine, still wearing the Fentanyl patch but that’s all – I’m in no pain, even drinking is so much better. I also think my taste buds are healing a bit as well.
I had ReadyBrek for breakfast today and all day I’ve been sucking on ice pops and lollies. They keep my mouth moist which I have to say I never thought I’d get back. I do still get thick sticky stuff in the back of my throat which can make me gag at times but it’s still good progress.
More soup for meals but I’ve not taken as much morphine and have felt much better overall. I even enjoyed a few sips of Pepsimax – something I haven’t done for a few weeks due to the taste as well as the fizz.
This time last year we were at Weston enjoying our Indian Summer!
*** Another Graphic picture below ***
Saturday 5th October 2019
Today has been the worst day so far. It is really hard to swallow and my lips are cracked and sore. It stings when I try to take my dissolved pain killers so right now I’m only taking OraMorph as it is only 5ml – even that is hard but it does help. My mouth seems sticky as well – I’m hoping this is my peek and it gets better from now on.
I did sleep a lot today which definitely helped. I do keep trying to have a sip of water – it is better having it cold.
Sunday 6th October 2019
I must say I have woken up feeling a bit better – it is still difficult to take my normal medication (pills crushed up and mixed in a teaspoon of yoghurt) I’m trying really hard to get it all down – it’s the only food I’m eating at the moment.
I have slept a lot today but I’m really struggling to get anything down my throat even water. I don’t think the food replacement drinks would work – it’s not that I don’t want them it’s that I can’t get them down.
I’m starting to really worry and I know Nigel is too but what can I do. How do I make it better?
Monday 7th October 2019
Today hasn’t been any better – I still can’t get much down – so it’s just 5ml of OraMorph and little sips of water. It takes so long to get even that down. It is constantly painful in my throat apart from a short while after the Morphine kicks in.
I stayed up in my chair tonight as I find it easier than lying down.
Tuesday 8th October 2019
I had a fretful night – my mouth kept getting sticky which caused me to dribble so I would have to clean it up. I did get a few hours’ sleep in the early morning.
Then I was up taking OraMorph and a small amount of water with ice then my tablets with yoghurt.
Shower this morning and I opted for a strappy top so it wouldn’t rub on my wound. The dressing Carol gave us last week does help it calm down so its not sore or messy. They are one use only so I will need some more today.
Slimming World day – now you may wonder why I want to go with the way I’m feeling. It’s just that I have been a member for over two year now and it’s more of a social support group (almost family) where I have made a lot of good friends. Weigh in was a bit of a shock though – I knew I would have lost some weight but 13½ lbs in a week is scary. I had even worn jeans instead of my usual leggings.
Back home so Nigel could have a quick sandwich and me some more Morphine – then off to the hospital for my first follow-up appointment.
A few minutes wait and then a bit of a shock when the young nurse who collected us from the waiting room ushered us into a room. Not my Doctor and one of the nurses I had met which was what I was expecting but a group of six women. Laura and Fiona (two of the neck nurse’s) Sophie (dietitian) and Henrietta (swallowing nurse) plus another nurse as well as the young one who showed us in. I felt a bit ganged up on.
Well they soon worked out I wasn’t so good and there was a problem. Laura, sitting behind me, came out with “Should we keep her in?” I told them that wasn’t an option. I get better care at home – give us what we need and we will do the rest.
They did my Obs which proved to be all good and then sent us off for a blood test – I think so they could formulate a plan.
When we returned Fiona said they didn’t want to keep me in, that they would give me additional pain relief in the form of a Fentanyl patch (works like nicotine ones – through the skin) as well as upping the recommended dose of Morphine. This should make swallowing less painful.
They also gave me some protein drinks and more dressings.
We left the hospital after three hours but at least there was now a plan.
Wednesday 9th October 2019
Laura phone early this morning saying my blood test showed no problems except de-hydration and to carry on with the plan.
Despite a slow start – it was still hard to swallow any water – after a couple of OraMorph’s at about 1.00pm I could suck on some ice chips and a couple of ice pops. Allowing them to melt on my tongue and then swallowing.
Been very sleepy today but when I am awake I keep looking at the lovely flowers Nigel bought me yesterday – they are bright and cheer me up no end. He is so thoughtful (especially when I give him big hints).
Today has gone along well – I have been sucking on ice chips and the ice pops are good to suck on now. I even had two tablespoons of custard with my crushed tablets and it all went down well. I have taken more OraMorph and am not in so much pain. I must have got through three glasses of water today – if this continues tomorrow should be even better.
My skin is itching a lot (all over) – may be a side effect of the drugs.
Thursday 10th October 2019
It is amazing what difference a day makes – yesterday I was doing OK but today is even better. I’m now sipping lovely cold water (even though it tastes like sea water). I’m looking for something to flavour it – tried orange squash, Ribena etc. I even tried the hospital drinks but I didn’t like the Apricot one at all.
I had two spoons of custard to take my tablets early on but had more mid-afternoon just because I fancied it – what a step forward. An hour or so later I did feel a bit sick so I didn’t have any for tea. I did take my evening pills with some though.
The itching is driving me mad. Scratching too much – but I just can’t stop.
Friday 11th October 2019
I did sleep well again last night – but then I’m always feeling tired and dropping off most of the day.
I have been trying lots of different drinks to see what tastes OK – nothing has so far.
Nigel has been keeping my wound clean for me – he is so good. I keep the dressing on for a while longer now as it helps to clean up the edges – but it is still very wet and messy.
I’m drinking more of the ice and water than I have been doing.
The evening went well but I’m so sleepy all the time and couldn’t stop scratching my itchy skin with shaking hands now – they seem to have a mind of their own now.
Recovery isn’t going as quickly as I had hoped so you will be getting weekly Blogs until things are better – you have been with me so far and I have appreciated your support.
I had a lovely weekend – my two sisters and one of my brothers came up to see me on Saturday. I think they enjoyed their visit. I wasn’t too tired and had taken my pain killers in good time so was OK with all the chatting etc. It did wipe me out a bit on Sunday though.
I went with Nigel to do a bit of shopping – I think the fresh air woke me up a bit but I had lots of rest in the afternoon.
I had another bad night with my neck wound – really sore and itchy – I again had to clean it up and reapply Epimax cream which does cool it a bit. I am now taking two Co-Codamol tablets at a time which makes me very sleepy so after I took them at 04.00 I fell asleep until 08.30.
I had a small amount of scrambled egg for breakfast gearing myself up for the last week – hoping that the burning doesn’t get too much worse – it’s like a very bad case of sunburn at the moment.
Zapping was OK today – the mask was a bit tight but not so bad. We had to see Sophie the dietician again – just for a catch up. She seemed pleased and did understand how I feel about putting weight on after seeing my ‘then and now’ pic stuck on the front of the fridge.
Tuesday 1st October 2019
I had a better night’s sleep but it was really painful when I cleaned up my wound this morning – so bad in fact it made me cry.
This morning at Slimming World I again put on a pound – not sure how as I’m eating so little now. My friend Lyn was very helpful – got me to the scales quickly – she does rather take over – bless her.
Treatment was painful – the mask was very tight, pressing down on my wound – I thought that the headrest was higher but they said it wasn’t. It did feel like I was being choked – only a quick zapping though.
We spoke with Fiona and Laura after I was done. Nigel wanted to know if it was alright for me to take some OraMorph midway between my tablets to help with the pain when I clean the wound up. They said it was so I’m on even stronger pain control now but another that makes me drowsy – I slept most of the afternoon.
Wednesday 2nd October 2019
I had a better night’s sleep – I did wake and clean up my wound in the early hours but it wasn’t so painful.
Nigel gave me some more morphine this morning and I managed a wound clean-up and a warm shower. Side effect of the stronger pain killer is it gives me a floating dizzy feeling as well as being sleepy so I’m just doing a lot of nothing now.
Zapping was late today and yet another team. We had to explain about the cling film before they fitted the mask. They went to leave but Nigel had to remind them to position the table before doing the scan and zapping me which was worrying – what would have happened if he hadn’t been there? I asked them to talk to me while they were doing the scan but I didn’t hear a thing although Nigel said he heard them say something. I don’t think they turned the Tannoy on. I was gritting my teeth and made it without panicking.
The doctor looked at my wound and said that after therapy it will take another ten days or so before things start to heal quickly and that she will keep an eye on me during that time.
Thursday 3rd October 2019
Penultimate day – my throat was very tight this morning – it took a while to be able to swallow. I had to crush all my tablets up and take them with a spoonful of yoghurt. Can’t even manage the small ones now.
Before treatment we saw Henrietta, she was a speech therapist and something to do with swallowing. I don’t think it was much good speaking to her at this late stage as it’s my last day tomorrow but I listened and nodded at the right times.
I had a bad day with the mask – very tight and I felt I couldn’t breath – it took three tries to get it fitted where I could breathe a bit. They were very good though and the zapping was quick.
Friday 4th October 2019
Last day of treatment – I thought I would be more excited than I was – I think it is because I am so tired and have been for the last couple of days.
Today the mask hurt a bit but I pushed through that. We gave the team a big box of Roses chocolates as a Thank you. Adam was kind enough to push me back to Reception so that Nigel could video me coming in and ringing the bell signalling the end of my treatment. I have been putting my daily Vlog on YouTube – The last one is here.
Carol gave me some dressing to cover my wound at night (to stop it sticking to the sheets) and we had to pick up some Flamazine cream from the Pharmacy. We watched a couple of lads busking by the Coffee Shop as we waited to collect it. They were raising money for the hospital so we chucked a couple of quid in their bucket.
I had intended to stop the Blog here but I think I will do another one when I have made a bit of a recovery so you get an idea of how long it takes. At the moment it’s so difficult to swallow I’m not eating anything worth talking about hardly drinking and it’s even difficult to get 5ml of OraMorph down – so I’m struggling.
Had a good weekend – not as sleepy as the last one and the weather on Saturday was fantastic. We managed a trip out on the 2G’s – just up the lane to the weir.
We foraged a few sloes and hazelnuts (Nigel will make some Sloe Gin and me some hazelnut paste).
It felt really good to be out in the fresh air under a beautiful blue sky in our “green and pleasant land” – though even then I did have a slightly dark thought ‘If this doesn’t work look what I would be missing!’
Today we start week five and only having happy thoughts and a positive outlook.
Treatment went well though the mask was very tight – I had a small panic and now I’m worried – if it’s this tight on a Monday what will it be like on Thursday and Friday – we will see.
After I’d been zapped Carol had another look at my wound and gave me some new Flaminal cream for the red sore bit at the front. She also introduced us to my dietician. One thing I wasn’t going to have was her preaching at me (my past experience of them) but I’m glad to say she didn’t. I told her about Slimming World and Nigel said about slipping the odd cream sundae in – she said he was doing the right thing.
Tuesday 24th September 2019
I slept a little later today so was late with my pain killers. My neck was painful to move plus it had wept a lot in the night so I was caked up. I dabbed a cold wet flannel – the cold felt good but the wound was pumping white puss which was not nice.
Treatment was brought forward half an hour today so only a flying weighing visit to Slimming World today (shame because they were having a tasting session). I put on two pound this week which the hospital thinks is good – I however don’t (any weight gain is depressing to me).
Parking was a struggle today (worst ever I think) we ended up half on the pavement on yellow lines after playing dodgems around the Car Park for ten minutes.
Got to the appointment on time – another new team. I was done quite quickly but they forgot to bring Nigel back with them – I wasn’t going to move until he came so I asked where he was and I heard her shout for someone else to get him out of the room. They won’t forget next time!
Back home Emma came and gave me a haircut and colour (less hair might help with the mask tightness). She also did a marvellous job on a wig I got through the post – no I’m not losing my hair it’s for a special occasion – more about that on a later Blog.
Wednesday 25th September 2019
Early this morning at 04.30 I had to take more pain killers and for the first time at that hour I had to give my wound a good clean up – very messy again.
At treatment they told me they would be doing a scan again to refine the measurements for my treatment – I asked them to talk me through it over the Tannoy and not to take too long about it.
Thankfully they kept me well informed so I didn’t panic like last week (no more thoughts of Triffid invasions) and all went well.
My throat is still very red and sore – it still weeps a lot but I have been putting on lots of cream which does cool it down a lot – so all things considered it’s not too bad and there are now only seven more sessions.
Thursday 26th September 2019
A sunny start to the day – I slept in until 9.00 so even though I was up for a couple of hours in the night I’ve had plenty of sleep – I had to clean up the wound again and put more cream on.
I’m a bit excited that it’s nearly the end of week five.
Another new team today – so we started our training of them. I am always surprised at how the feel of the mask changes from day to day – yesterday it was a bit tight but today not so much.
After treatment we saw Carol – she gave me some cool pads to help with the heat around my wound.
She also gave a bit of a heads up to what happens after my course of treatments completes. Apparently the side effects continue (and may get worse) for about ten days after the last zapping. Then it will be 10-12 weeks before the body has replaced all the cells affected by the radiation and that after that a follow up MRI scan will be the proof (or otherwise) of its success. It may take even longer for me to get back to my ‘normal’ self.
They will be monitoring me regularly during the first part of my recovery at least.
Friday 27th September 2019
I had a bad night with my wound. I had put the Flaminal cream on before I went to bed but I presume because there are more open bits it was painful and stinging all the time. I got up about 02.00 and bathed it all over. I tried one of the cool pads Carol gave me yesterday but it didn’t seem to work very well. I went back to the Epimax cream which was better.
We had a little wait for therapy today but it passed quickly – Beth (the Receptionist) brought a few After Eight mints to us and we all joined in a conversation about parents and music quizzing.
Treatment was OK – the mask wasn’t as tight today and zapping was short.
So that’s it for another week. Only one more to go and next week I will find out exactly what happens next as I don’t have any more appointments yet for after next Friday.
While I had the weekend off I spent most of it asleep. I guess this is what the Radiotherapy does. They did tell me it would be like this but I thought I could fight it.
I have been taking the Antibiotics all weekend and because it is liquid I can’t avoid the horrible taste. They don’t seem to have done much as it’s still weeping although Nigel says it’s getting smaller.
At least week four is starting so after today I will have less to do than I have already done. I’m rather hoping that I don’t get to feel worse than I already am – we will see.
At treatment today I was more comfortable under the mask I had a new nurse and it took a bit longer to get me all lined up – trouble is I kept thinking would I be able to get out of the mask myself if I needed too (scary).
The team are still a bit concerned about my lump weeping and even bleeding a bit. I’m also running short of some of my pain killers (they only give me enough Paracetamol for six days at a time) but Fiona wasn’t available today so we had to leave without seeing her.
Tuesday 17th September 2019
I had a good night’s sleep and felt a lot better this morning. I took pain killers at bed time and didn’t need more until breakfast – I’ll try and do this again, it may help.
As I felt good I was up for cooking breakfast for Nigel – my way of saying thank you for all he does looking after me. I had my usual Ready Brek, but didn’t eat it all – hope it was enough to stop me loosing too much weight.
Slimming World weigh in – we have to go to the 9.30 session so we can get to the hospital in time for treatment –just a quick in and out – I’m missing staying to group and having a good chat with my SW family. Lost 5½ lbs this week – not surprised but mustn’t loose much more or I could get too small for the mask.
Parking was a challenge today – it’s a good job we always give ourselves enough time or we could have problems.
Treatment went well – the mask is fitting much better – I’m hoping this is just because it’s still early in the week and not the weight loss.
We collected the pills I wanted from the Pharmacy and fleetingly saw Fiona – she didn’t stop to chat – guess they must be very busy.
We had lunch at Togg Hill again and were joined by our friends Tim & Deb – we had a really lovely time laughing and catching up, remembering the things we did together in the past. It’s been quite a while since we met up and we really enjoyed it – won’t leave it so long before doing it again.
Wednesday 18th September 2019
Had a reasonable night although my wound was weeping a lot with some blood too. I put a dressing on it and used some tape to hold it. When I took it off it the tape pulled and made it very sore – won’t do that again.
Bad time at treatment today. When we went in the nurse said they would be examining the skin around my wound today – I thought this would be by eye but I was wrong. We went through the usual mask fitting routine, they all left as usual and I heard the usual bleeps and motion of the machine. When this stops they normally come and get me out but they didn’t come and I started to get worried – then I got scared that they were talking and leaving me in there so I started to wave my hand but they didn’t come so then I went into real panic mode and started to shout for help. They came and let me out – I asked if they had finished but they hadn’t so after I calmed down I again had the mask fitted and let the treatment go on.
If they had told me they were going to do a scan and then look at it I may not have panicked so much but as it was I got very emotional and when I did eventually get off the table I was shaking like a leaf.
Thursday 19th September 2019
After yesterday I was a bit worried about going under the mask but we arrived a bit early (as we usually do) and we were called in before Nigel had a chance to sit down or me to worry too much. It was our usual team and they know by now not to leave me too long once they have done their bit. Apart from the mask feeling a bit tighter it was fine – which was a great relief.
We had a bit of a wait to see the Doctor but it wasn’t as long as the last time. She didn’t say a lot (she never does) but she had a look at my neck and said that while they were killing the centre of the cancer it can get inflamed and the weeping was my body’s way of getting rid of it. Apparently the swab they took when it started did not ‘grow anything’ in the lab which is a good thing I guess. Carol was there as well and she said I was looking a heck of a lot better than when she saw me last week. The pain killers are helping with that – and not overdoing things as well.
All in all a good day.
Friday 20th September 2019
I had a reasonable night but my wound did itch quite a bit.
Last day of week 4 – I really can’t believe I have done this much already – it has been a bit dramatic this week – let’s hope next week isn’t so bad.
Treatment wasn’t too bad – Adam had me in and out really quickly. The mask was really tight on my neck – I can’t believe my face has swollen up so much overnight.
The weather has been wonderful all week – warm and sunny with clear blue skies – it seems a shame we have to be doing this instead of being away in Voyager.
My appointments this week are all around lunchtime so today we are going to have lunch later – after doing a bit of shopping on our way home.
I have noticed my gums are getting very sore making it hard to chew and I’ve been a bit worried about how sore and blistery my lump has become over the weekend. I mentioned it to the nurses – they did seem a bit concerned and were very gentle putting the mask on.
I think the treatment was a bit longer – well it seemed that way to me.
Afterward they asked us to wait so Fiona could have a look at my lump. She told me that some soreness is expected but she thought there may be an infection in mine. She took my blood pressure, heart rate and temperature which were all fine.
Her opinion was that we just keep an eye on it for a few days.
Tuesday 10th September 2019
I had a reasonable night with the pain killers.
This morning my lump is painful to touch, red and has been weeping a bit – I do hope it is not infected.
Slimming World weigh in today and as I’m increasingly having to eat more soft food due to my sore gums and throat I reckoned a loss was on the cards – turned out to be ½ lb but happy with that.
Treatment went OK – they put Clingfilm over my neck to help prevent it sticking to the mask. They also took a swab of the discharge so they can see what it is. Just have to wait for the answer and the plan.
Wednesday 11th September 2019
A good night’s sleep – my lump was weeping a bit but the pain relief I took in the early hours really helped. It doesn’t feel as sore or tender which is better for putting the cream on.
Treatment today was a bit easier – not sure why – maybe because my lump isn’t as sore or could be I’m getting more used to it.
The mask was tight but not so unbearable as it has been – I’m wondering if it’s an abscess in my lump which has been giving me pain not only in my neck but in the back of my head which made it hurt on the headrest. Now it has gone down a bit there is less pressure which helps.
Thursday 12th September 2019
After such a good day yesterday today has been very different – I’m so tired and my neck is still tender.
Another early appointment – no problems getting there but very busy in the Car Park – managed to find a space on the double yellows – OK with my Blue Badge.
Treatment went well – no dramas – they again had a good look at my neck and used Clingfilm – no answer from the lab yet though.
We saw Carol afterwards and she too was concerned about how red, angry and hot it is. She thinks I should have some anti-biotics and maybe some steroid cream. She will let us know tomorrow and will chase up the results of the swab they took.
She also gave me another mouthwash to help with the dryness I’m feeling more now (a bit like a sticky gloopy saliva feeling).
Friday 13th September 2019
I had a good night’s sleep despite my lump weeping quite a bit.
Today is day 15 which means I’m halfway through. I have to say it has gone by so quickly, much faster than I thought when it started.
Our friends Tim and Debs have read last week’s Blog and messaged me – we are going to meet them for lunch early next week – just like we used to do. We’re looking forward to a lovely catch up.
Today the mask was very tight – even with both shims removed – but I managed to get through it even though it felt like it was choking me. After treatment we saw Carol again and a Doctor who had a good look at my lump. She said that it was best to let the abscess weep (better out than in) and prescribed a course of antibiotics (for 2 weeks) although she wasn’t sure if they would work.
When we collected this from the Pharmacy I was told to stop taking my daily statin until after the course is complete.
Back home and after lunch I slept most of the afternoon – they were right at the beginning when they said I would get tired very quickly – but I get the weekend off – two days to relax.
The weekend has gone by so fast – having two days off sounded so good on Friday but they just flew.
I was full of trepidation about going today – Friday had been bad. They told me the swelling of my face would go down over the weekend but I couldn’t see any difference so was afraid it would hurt again under the mask.
My lump was very tender to touch – just putting the cream on was painful but the paracetamol did help.
Nigel had a strong word about bringing him back to help me to the changing room – I’m not sure the male assistant (no names) liked it much but tough luck.
Treatment wasn’t quite as bad as I expected – the mask hurt but not unbearably – and the zapping seemed to be over quicker than usual.
They did bring Nigel back – hopefully they have got the message.
Tuesday 3rd September 2019
Tuesday is always going to be the busiest day of the week. Slimming World first – didn’t do so well gained 2lb but not surprised really.
We left after group – I had made some sandwiches earlier so we decided to stop at Togg Hill picnic area. A lovely view and good memories of times we spent with our friends Tim & Deb when we used to meet them there.
Then on to the hospital – I was feeling a bit better about it today. I hadn’t slept well because of the pain so have taken to thinking ‘let’s just get this over with’.
We had a bit of a wait today – there seemed to be more people waiting and when we finally got in it was the other zapper machine (first time on LA3) with a different team. But I had Nigel with me so just gritted my teeth – they were very good and it was over quickly again. I thought it may have me just thinking that but Nigel confirmed that I wasn’t in there as long.
Wednesday 4th September 2019
Today started out badly – I didn’t sleep well last night (paracetamol not cutting it now – and I took a few more than I should have too).
I think my lump is protruding more – before treatment started I couldn’t see it, now I can. It frightens me – feeling that I will always have a big lump on the side of my neck.
The treatment was fine today and I didn’t have as much pain in the back of my neck which was a relief.
We were only meant to wait about ten minutes to see the doctor but it turned out to be more like an hour. When we did eventually see her I didn’t get to learn much about how it’s going. She said that Radiotherapy was a slow process and what they are seeing on the scans shows they are zapping the entire growth and progress is as they expected it to be. Mostly we discussed pain management – she was surprised it is as painful as it is at this stage. As swallowing is getting harder they have given me some dissolvable stronger tablets (Co-Codamol, Paracetamol and Ibuprofen). They said that if/when it gets worse I can get some Oramorph too so it won’t hurt any more (might I become a junky?)
Thursday 5th September 2019
I had a much better night’s sleep as the new pain killers are much better.
Being in the mask wasn’t as comfortable as yesterday but I did complete the treatment. I was very tempted though to wave my hand to get out but I persevered – so relieved to get through it.
I had a chat with the neck nurse afterwards – tried to explain how I was feeling, how disappointed I was yesterday not to be told that things were improving but at the end of the day I do feel better in myself now that the pain has stopped.
Friday 6th September 2019
A second good pain free night so I slept very well. We are away for the weekend at a C&MH Club Rally so we were busy getting things packed into Voyager – it kept my mind occupied instead of worrying about today’s treatment.
I had a 12.45 session today – It went well – they removed a shim which helped with the tightness of the mask – it will never be good I don’t think but at least it’s manageable. I am not in there too long and if I manage to lose a couple of pound without telling them it might be even better.
I must be getting more used to having 5-10 minute treatments as I don’t mind coming again next week – much better than last Monday I really didn’t want to come back.
My lump is becoming sore and the skin around it has become very red. I keep putting the cream on and gargling with the mouth wash and of course the pain killers are amazing – most of the time I’m in no pain.
So second week done and a nice weekend away – feeling good.