At 6am this morning, Lynn's fight came to it's inevitable conclusion. She left us in a very graceful and dignified way, with no pain and most of her close family around her.
The Buchan & Masson family would like to thank Sue Ryder Thorpe Hall hospice & all it's staff for making her journey as comfortable as possible.
Lynn's request was to have a church service in St. Marys church Farcet, where we were married, conducted by our friend Rev John Randall, followed by burial in Farcet cemetary.
I will update you all when arrangements are confirmed.
I soon will be adding some pictures and video's of Lynn and a very easy rememberance section, so you can share your own story's and anekdotes.
Thank you all friends & family for the support and love you have shown all of us during this difficult time, Lynn & I have been made to feel very humble at times due to the sheer volume of your support.
God bless you all & god bless you Lynn, my wife, my world but most of all my best friend.
Lynn is about to start her biggest journey yet, so please say a special prayer to help her on her way.
Her condition has deteriorated to the point of no return and she has slipped in to a coma and is being treated with the "Pathway" method.
She is pain free and has had many of her friends and family around her.
Lynn is in very good hands, being looked after and made as comfortable as possible.
Her energy levels are very low and at times she can be a little confused, this is inevitable and we make the most of our conversations when possible, at other times reassurance and support get us through.
Lynn is in a room with another very young lady who has a similar condition, she also has two infant children, Lynn after hearing her heartbreaking story and the way this lady is planning and coping with her illness said "I thought I had it bad, this lady is my true inspiration" said whilst tears streamed down Lynn's face..
Lynn has had a very bad time of it during the last few days.
It has been a gradual decline of energy and strength leading to two seizures yesterday.
She had been laid up in bed for almost 2 solid days, without much sleep & major discomfort, but very little pain. So between the two of us, we made the decision that due to fatigue and the need for a full review of her medication to admit her to Thorpe Hall hospice.
This decision was made easy due to the fact that our good friend Chrissie is a nurse there and took time out of her holiday to show Lynn and I around, introduce us to all the staff and make us feel that this was not a scary place, but one of care and the best place for Lynn to be.
Bless you Chrissie!
Above is a very edited version of Lynn & the family story since the last update, and all of us are almost running on empty, so spare a thought for both the Buchan & Masson family during this difficult time.
Lynn will not be seeing any visitors during the first part of her stay at Thorpe Hall, this is her choice and on the Doctors advice. Seeing visitors at this stage would have a detrimentle effect on any possible benefit during her medication revision.
I will update as and when I can, but please bear in mind that Lynn is a very poorly lady, none of her treatment is working or has been stopped and she is simply being made as comfortable as possible.
Thanks again for all your support and prayers, we are truly blessed to have friends and family like you all.
God bless you all
Update not mentioned on this video. (Sorry about the waterfall background noise)
Lynn has been extra tired and lethargic this week, her eyesight has been much worse than normal. We investigated what had changed in such a short time, and think we have cracked it. She has a tumour in her armpit that on occasion can bleed, so she was prescribed and anti-bleed tablet. This was the only change in medication, so after reading all the side effects of the drugs we stopped it and hey presto, much better. Saturday was a much better day. This in combination with taking things in her stride and adapting to day to day living will be the way forward.
Lynn is comfortable at home and she and all the family would like to thank you all for your continued support.
She is in no pain is sleeping and eating well, but because of the steroids & her condition can find it a little difficult to process thoughts at times and this can make her very tired, very quickly.
This is the main reason she is not using the phone.
She gets all your texts and messages and would love to talk to you all, but at this time is simply unable to.
Many thanks again for your understanding and support.
I write the following with a heavy heart and please forgive me for breaking this news.
All did not go well at Addenbrookes Wednesday.
Lynn's cancer is now at an untenable stage and its rapid growth is now incomptible with any treatment plans available.
She was given the option of continuing on the imunotherapy route or stopping all treatment. With the time she have left, any thoughts of just giving in are not in her nature, so she will continue and we will find out today when this will take place. This may even happen today!
Where are we if we live without hope?
Reality has arrived in our world after many months of denial.
After making a pact between the two of us to of never wanting to know the prognosis, the question that no one should ever have to ask was asked, and the answer is a very short time frame.
So battle lines have now been drawn in the sand, and Lynn is very much up for the fight as we all know she just loves a challenge.
Lynn has not changed as person, she is still the loving, caring and bubbly girl we all know & love, so if you get the pleasure of talking, messaging or meeting the wonderful lady, don't pity her, simply act your normal self and lets all enjoy the time we have available.
There will be plenty of time for grief, but now is not that time, this is Lynn's time! We simply have too much to do, we have a vey long list and we are less than half way through, Pandas in Edinburgh next!
Lynn continues to gain strength since returning home hospital.
She is still very tired and taking things very slowly.
We are back at Addenbrookes today for a general oncology check up and to review her treatment plan.
If all goes well she may have her 2nd infusion of Ipilimumab tomorrow.
Lynn has been going from stength to strength.
She is now able to walk unaided and is starting to get her energy levels up.
Her appetite is getting better and all the medical staff are very impressed by this amazing women.
If she impresses the Physio's tomorrow she will be allowed HOME!
She will still be a very poorly lady, but stable and around creature comforts.
We may even be able to go to Addenbrookes next week for a check up.
This is truly great news and the answer to some of our prayers, and not in small part to a fantastic medical team at Peterborough Hospital in co-operation with Addenbrookes oncology department.
Lynn had a mostly good day today (Happy face)
She was unfortunately sick just after taking some of her steroid medication. Unable to quantify how much the body has absorbed, the medical staff are not able to give her any more until 8am tomorrow.
So she has been very sleepy and they have had to control her pain via other methods.
She is fully alert and chatting as normal but due to her tiredness will be unable to see visitors for the next couple of days.
There is nothing extra to worry about, she has just been through a tough few days and needs as much rest as possible, I am sure you all understand and she sends her love to you all.
I myself am knackered, so if you all don't mind I will not be putting anymore updates for a while unless her condition or circumstances change.
Thanks for all your support and keep sending the messages, I read them all to her and I am sure it gives her extra strength.
I wish you could all the smile on my face as I wright this update.
Lynn has been taken off all the four types of pain killers, as these are not helping, just making her more tired.
Her syptoms are totally being masked by the steroids!
This means she has had no drugs through IV in to her vains today.
This will be monitored over the next few days and if there are no ill effects (God willing)
SHE WILL COMING HOME!!!!!!!!!!!!
She will still be very very poorly, but at least she will have us 4 men to run around after her in the comfort of her own home.
The again was totally unexpected and must be down to the positive vibes around her and the strength of this amazing women.
Had to pinch myself when given the news to make sure I was not dreaming.
Happy Happy days !
Today has to rank up there near our wedding day!
After the devastating news and how poorly Lynn was yesterday, I genuinely thought I had my last conversation with her. I was expecting to go in to see her, hold her hand and just watch her, as yesterday she had said so few words, been almost unconscious the entire day and in pain.
I phoned the hospital early to check how her night had gone, only to discover that she was awake, talking and eating toast! I was in that hospital like a shot!
She was full of it, almost all day. She had loads of visitors and was taking the micky out of most of them and had time for each and every one of them.
She had a visit from Reverand John who married us in January and took great comfort from their time together.
Most of her symptoms are being masked by a massive amount of anti brain swelling steroid.
She continues to amaze me and words can not describe what a happy man that takes his rest tonight.
Thank you all for your messages, texts, phone calls, cards & visits. I let Lynn know about each and every one of them.
Most of all thank you all who said a prayer for my Lynny M, this must have made a difference. Can I be really greedy and please ask you all for a few more of the same? If I get more days like today, I will truly be the luckiest man alive. Thank you
Sorry to be the bearer of this news.
Lynn is extremely ill at this time and the prognosis is very poor.
After an ok day yesterday and a good nights sleep, Lynn did not have a good morning, being sick and not coming fully round from her sleep.
The Oncologist took me, Lynn's Mum & Barry to another room to give us the devastating news that in her opinion Lynn had a bleed on the brain. This was confirmed later via a CT scan.
Her steroid medication is being quadrupled to her with the pressure.
The priority now is for Lynn to be as comfortable and pain free as possible.
Please say a little prayer for my Lynny M.
Lynn is much improved in general from when she entered hospital on friday.
She is now able to eat and drink, keeping both down, helped by medication.
She has had mostly restless nights due to head pains and has had little energy.
The pain is now being controlled by increased steroids and 24hr a day Morphine, this has given her first peaceful nights sleep in days. She is unable to walk unaided and we are waiting to hear if this is due to the cancer progression or a combination of the side effects, illness and other factors.
She is able to comunicate with no problem and has not changed her personality one bit.
She has asked me to thank you all for your best wishes and continued support, she knows she is in the right place and getting the best possible treatment and looks forward to feelng more like her normal self.
I will update more if anything changes.
Updated by Brian
Lynn has had a very tough week.
She is now suffering some side effects from the new Imunotherapy threatment, on top of the accumilation of the 5 days of brain radiotherapy and to cap it all she has a nasty cold!
The main problems were not being able to hold down any food or drink, leading to dehydration and of course not being able to keep down medication.
After consultation with Addenbrookes it was decided to get Lynn in to Peterborough hospital for re-hydration and anti-sickness drugs through IV.
She is in for the weekend for observation and other tests and I will update further when we have any more news.
She is not up for visits at the moment, as she needs as much rest as possible.
Thanks for all the messages and phone calls, I pass them all on to her.
Updated by Brian
Thank the lord the hospital visits are over for 3 weeks (Touch wood)
Today was a fiasco!
Left the house at 8.30 to arrive early for a temperature check, before Lynn's first infusion of Ipilimumab (Imunotherapy treatment) scheduled for 10am. Well due to a consent form not being filled out correctly (the 2nd in a week) we did not get out of Addenbrookes until 3.45pm. What should have been approx 2 hours turned into 5 hours 45mins.
We did not need that after such an exhausting week!
I am so knackered, so just imagine what Lynn is like!
She would like to thank all her friends and family for their kind wishes texts & emails.
She reads all of them and will reply when she feels well enough.
Updated by the chauffeur.
5 of 5 DONE! No dramas.
Blood results were very good, liver indicators were poor on the last result, this has now cleared and was a side effect of the Vemurafenib.
Confirmation of starting the new treatment Ipilimumab via a 90 minute drip in the morning.(Subject to her temperature being O.K. , it was high today)
Lynn has a had a minor cold this week, the Radio therapy has given her a very unusual and unpleasant sensation behind her eyes and in her head. This has made her exhausted and tired.
Lynn has said that this has been the worst week of her life for feeling unwell, but is now looking forward to the new treatment and being off the radio therapy.
Updated by Brian
4 of 5 now done.
Appointments times were changed at the last minute, so what could have been a long day, turned out to be o.k.
Had to wait a long time to have bloods taken.
Lynn looked good today, although very tired and had to go to bed a few times during the day.
So 5 of 5 tomorrow and Oncology appointment to discuss progress and treatment plan.
Updated by Brian
Day3 of the radiotherapy done! Lynn is now resting and packed off to bed.
Lynn had a tough Saturday and was the most tired I have seen her since any of her treatment started.
On Sunday after a lot of rest, we both enjoyed a great day out in London supporting Liam running the London Marathon in 4hrs 42mins and meeting up with Helen.
Thanks to all who sponsored him.
The mask used to keep my head still during the therapy was too tight yesterday. This resulted in jaw pain throughout the night and my sleep was very broken.
Treatment was only delayed by 25 minutes today. Slight headache, very quickly wore off. Tired again tonight so have yourselves a great weekend and If all is well we are going to support Liam doing the London marathon on Sunday.
Lynn is in France skiing with her best friends family & godchildren.
Whilst on holiday Lynn had a minor setback and had to be admitted to hospital, where she underwent a CT scan and observation. She is now on new medication and a stronger steroid to help out with the new problems.
She is now out of hospital after her overnight stay and is in good spirits.
Next appointment Addenbrookes Wed 11th April where a revision of treatment will be discussed.
Just a very quick update as everything went very well at my appointment today and I have another 3 weeks worth of drugs. I am still on the 1mg steroid and I have been told I can reduce the diuretic to the 20mg but if the fluid gets worse I can then judge this myself and go back upto the 40mg. The steroid does cause fluid retention.
Anyway I am feeling exceptionally good at the moment having just recently had a nice break in Scotland with my Mum. It has certainly done me the world of good and made me realise how much work takes it out of me and I probably still do too much at home too but it is all a learning curve!
Next update evening of Wed 28th March after results of the all important scans!
I had been back on the drug for 3 weeks at a reduced dosage of 6 tablets a day when I had this appointment. ECG and bloods all came back fine and so they have given me another month's worth of drugs on the same dosage of 6 tablets. So far on this level of drugs I have had no skin rash and as far as we are aware no sensitivity to the sun but I am wearing factor 50 suncream anyway and re-applying on exposed areas every 4 hours. Also wearing hats (received two wonderful hats as a wedding present from my boss and another senior manager at work) and just got some very fashionable prescription sunglasses from a very good friend in Miami!
The last scans I had were on 7th December before I started the drug a week later. These scans showed 2 tumours on my right lung and one in the protective area around your lungs. There were also some small nodules on the liver. Finally there were 3 small tumours on each of my 3 lobes on the right of my brain. As a result of those tumours and the fact that as a protection your body creates fluid around them I was put on 4mg of a steroid called Dexamethasone. When I went back on the reduced dosage of the drug they also wanted to reduce the steroid each week. As a result I started on 4mg and then each week have reduced by 1mg and so at the start of this week I was on 2mg and reduced down to 1 mg yesterday. Unfortunately last week and even more this week probably due to the reduction I have had really bad fluid retention in my ankles and legs. Over the last couple of days I am also suffering joint pain which is at its worst when I first get up and I am like an old woman! As a result I have been given a diuretic tablet to take and I am to stay on 1mg of the steroid until I see the Oncologist again on the 7th of March. The joint pain may be a side effect of the drug rather than the steroid.
When I came off the higher dosage of 8 tablets in January due to side effects and liver function (just under 2 weeks) unfortunately at about day 10 my lumps all came back rather verociously and in fact I ended up with more than I had originally. With this in mind we were under no illusions that the same had not occurred internally and so when I went for the scans on Friday we felt that it was going to be a result if the tumours stayed the same or there might have even been an increase as I had only been back on the reduced dosage for 2 weeks and a day when I had the scans. Therefore the results yesterday had some positive news as the tumours had remained the same with a slight reduction in one on the lung and one on the brain. Unfortunately there were also 3 new small tumours (4mm) on my brain, one in the right superior frontal lobe, right occipital lobe and left frontal lobe.
The next scans in two months time will therefore be really important.
After a bit of a reality check, I am back on the drugs but on a reduced dosage, which should improve on the side effects problems.
The reality check is the return of a lot of the lumps.
Very happy to be back on the tablets and can't wait for the big day on Saturday!
Our youngest son Liam is running the London marathon on behalf of the charity Deafblind UK who have been so good to me during this difficult time. Please help give a little back by sponsoring him on his page. Liam Buchan London marathon Just giving page.
Last week I started to get very tired at about 2.30/3pm at work which was far earlier than before Xmas and I had to go home and over the course of the evening have several catnaps in bed. For the first time I actually felt quite poorly and thought it was the cumulative effect of the insomnia kicking in. What we didn't realise is that I was actually becoming very photosensitive to the sun and as each day went by I was getting very red and by Thursday when I went home Brian said it looked like I had hives and some sunburn on exposed areas of my skin which was really my neck and head area. He was very concerned and thought that I needed to take an anti-histimine. I therefore called Addenbrookes and the nurse spoke to the top ongologist Pippa Corrie who advised me to take the anti-histimine and to come off the drugs until they saw me on Wed 11th Jan. This was a godsend as over the last few days I have had far more sleep, my skin rash and irritation has died down, my skin feels more normal and of course my sensitivity to the sun has also reduced and all the redness and slight swelling has gone down. It also made me realise that I have to re-apply the suncream, wear a baseball cap, sunglasses, use the blinds and just get myself prepared that I am going to be very sensitive to the sun as a side effect.
When I got diagnosed with the small brain tumours on Thurs 8th Dec I had co-incidentally started to get pins and needes in my left leg and so from Friday 9th Dec I was prescribed a steriod to reduce the fluid around the brain tumours and reduce the pins and needles and numbness of the leg. I first started taking 8mg (biggest dose is 16mg) and quite quickly the pins and needles decreased from below the knee to just in my foot area. At my Addenbrookes appt on 14th Dec they asked me to reduce down to 4mg from 28th Dec for a week and hopefully if there was no change then go down to 2mg on the 4th Jan. I did this but by Friday morning it had got worse so I had to go back up to the 4mg again.
Therefore for all sorts of reasons I was really looking forward to the appointment at Addenbrokes on the 11th Jan.
Had a really good day at Addenbrookes starting with a full examination by the Dermatologist. I had no skin problems that Dr Chan was worried about and I took her through my increased sensitivity to the sun last week and the fact that I was now re-applying the factor 50 on any exposed areas of skin every two hours. Dr Chan informed me that every four hours was fine at this time of the year. At the last appointment she had done drawings of all the lumps that I had so her little drawings were far less today and she could visibly see the reduction that has taken place in the bigger lumps. Interestingly she was telling me that of course not all of their patients on this trial have lumps but may just have the internal cancers. However one patient obviously had it on the lungs worse than me and really struggled to breath and quite quickly noticed an improvement once on the drug. I now don't see Dr Chan for a further 3 months.
Next it was down to Oncology for bloods - about 6 vials, 2 of which go off for research and then my weight was taken. My weight has remained almost the same every time I have been to Addenbrookes but this time because of Xmas etc it had gone up!! Don't worry I will be bringing it back down to the normal weight in time for my wedding!!!
Next it was along to ECG and everything was fine and interestingly as a Wed is Melanoma clinic the ECG technician had seen a few of us on this trial and I asked if I was the youngest and she said yes.
Back to Oncology to see research nurse to go through all the side effects, timings of them , how I was feeling last week when I reacted so badly to the sun, how I now felt being off the drug. Brian has taken photos of all my lumps on a regular basis so that we could visually see the reduction taking place on a computer screen and so he took his laptop with him and we were able to show this to both the nurse and ongologist which was pretty impressive. The ongologist then checked me over and after discussions agreed that based on the side effects they felt I should reduce down to 3 tablets in the morning and 3 at night and he also still wanted to try and get me off the steriod. So carry on taking 4mg this week and then next Wednesday go down to 3mg for 2 weeks. At this stage we were still just waiting for the Biochemistry results on my bloods and unfortunately when they came in my Liver has been slightly effected by the drug and is struggling slightly to function properly. Roche, the pharmaceutical company do have some quite strict parameters for this drug and so I am going to be off the drug for another week and go back to Addenbrookes next Wed 18th Jan for further bloods and then hopefully my liver function will be better and I can go on the 6 tablets. As the oncologist said this is a trial and everyone reacts differently (in fact I found out today that some people had such bad joint pain that they had to come off the drug after a month and were not put back on it!) and when it eventually goes on the market it might be a case that some people are on it for 2 weeks and then off for a couple of weeks because it is just so effective but at the same time it does have side effects.
This is actually a blessing in disguise as I will get more sleep over the next week, my skin feels good and I am less tired and will be less sensitive to the skin and so for the wedding I should be feeling really good!!
Well I know I have given you lots of information but you can now consider yourself fully upto date!!!