Battling to get treament

[toodotty]

I am 55 years old, mother of two almost adult boys and wife to a devastated husband. I visited my GP in early March with annoying indigestion and weight loss, and despite numerous blood tests, 3 ultrasound scans and 8 hours in A&E, (who diagnosed constipation), nothing was found to be wrong. I paid privately to see a specialist and for a CT scan and was diagnosed with pancreatic cancer on the eve of Good Friday. By the following Tuesday, it was confirmed as having spread with 3 small lesions in the liver and a shadow on the peritoneum, so Stage 4 PC.

On the 3rd of April, to try and cover all options, my darling GP referred me urgently to two specialist cancer centres, the general view being that the sooner treatment started the longer my chance of survival would be. Little did this help, due to the ineptitude and total lack of urgency, days slipped into weeks and then started rolling into months. Nothing could happen until I had an endoscopy (one centre) and an MRI scan (another centre) and the waiting list for these was 2/3 weeks. Again we paid privately, and my husband drove the disks to each hospital and hand delivered them. For the one hospital we didn't get onto the MDT meeting for a further 3 weeks, then the oncologist was on holiday until the 10th May, the other hospital we got onto the MDT meeting within a week but then disappeared off the list and were not scheduled to see the Oncologist. Every day was spent on the phone, chasing, harrying, leaving messages and nobody ringing back. Even my GP was calling trying to figure out what was happening. I felt as though I was being treated as if I had an in-growing toenail, not a life limiting illness and being told by various professionals that the NICE guidelines say that you should start treatment within 60 days and this won't make any difference to the status of the cancer, is complete nonsense

During this time, my cancer started to get much worse and the pain levels were such that I was unable to sleep and would spend the nights pacing around downstairs as though in labour. Still no appointments, only the offer of stronger sedatives. The stress and anguish of the lack of progress, lack of urgency and general acceptance that this was in any way acceptable was almost too much to bear especially for my husband.

Eventually I got to see an Oncologist on the 8th May, and after discussion it was agreed that I would be started on chemotherapy, but was told that this only had a 30% chance of success. Personally given all the other odds I have read up about this seemed to be quite positive. I was then contacted about my treatment dates, and they were still another 3 weeks away, taking me to the end of May, 2 months after diagnosis. We were devastated and given how quickly I was going down hill I wondered if I would even still be alive by then.

I wrote to both my MP and the head of the NHS Trust about the shambolic, chaotic and shocking lack of urgency with which my case was being treated. The MP wrote a lovely letter back to me and has forwarded my concerns onto Jeremy Hunt. The NHS trust contacted me within 3 days, and lo and I suddenly scheduled for my PICC line and chemo to start on the 15th May, which it duly did, They then asked if I would withdraw my complaint, hah not a chance so I am still waiting to see what excuses they come up with.

However, by this stage I had lost nearly 2 stone in weight, was in a lot of pain and developed jaundice. 1st round of chemo made a big difference to the pain, but the jaundice became very severe. My 2nd round of chemo was reduced whilst they organised an urgent endoscopy to have a stent fitted, again a two week wait for this which has now delayed my 3 round of chemo.

Whilst checking up on the endoscopy procedure, I realised that the team needed to understand that I had a nickel allergy and that I would need a special stent if they were planning to use a metal stent. My husband spent a week trying to get a message to someone but to no avail. When I saw the consultant undertaking the procedure and advised him of my concerns, he knew nothing about nickel allergies and had to go and research whether they could use the titanium stents, and no they could not. After a really hideous experience, a plastic stent was fitted and despite an overnight stay in hospital, I left the following morning in a wheelchair. I was also advised that the stent would not drain as well as a metal one and would need replacing every 3 months.

My chemo for this week has been delayed whilst we see if my bilirubin levels have dropped sufficiently, glad to say that I feel much better and most of the yellow has gone. I managed to get a look at my medical notes whilst in hospital, and was alarmed to see that the priority for my treatment was classed as "routine", and that the base-line scan taken 6 weeks after my initial scan shows many more polyps on my peritoneum and possible spread now to my lungs. Talk about not being given a fighting chance.

This is a tough enough disease to fight, and due to the laxity of the commencement of my treatment, I am having to endure more risky and invasive procedures that may have other wise been necessary.

But, I have not given up HOPE, I have too much to live for and I will fight this cancer and the NHS all of the way. I have had so much support from my friends, family and colleagues who are rallying around me. I have also met some truly lovely professionals in the hospital, but unfortunately the organisation does not seem capable of joining up the dots.

Fingers crossed that the consultant gives the go ahead for chemo on Friday, so that I can nail this disease before it spreads even further.

toodotty

[PCUK Nurse Rachel R]

Dear toodotty

I wanted to say a big welcome you to the forum, particularly from the Nursing team here. I do hope that you will find the forum family here a great source of support and comfort as so many do.

Thank you for sharing your story so far. I am extremely sorry to hear of your diagnosis and also your very difficult battle at each stage to navigate through the NHS system and ultimately start treatment. I applaud your perseverance and strength and I am sure this will spare others on.

I do hope your bilirubin levels continue to reduce enabling chemotherapy to go ahead later this week.

If you do ever wish to talk to us it would be a pleasure to speak to you, the support line contact details are below.

With kindest wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Good morning Rachel,

Thank you for your reply, I would have responded sooner but couldn't access the forum. I had my review with the Oncologist last Thursday who was reluctant to allow the next treatment to go ahead but after reviewing my bilirubin levels with him, which were the best they have been for sometime, he agreed for me to have Round 3 on Friday. This has gone well, far less side affects that the last time and at last I am beginning to see the start of an appetite again.

The actual process itself was shambolic, clearly my records are not being kept up to date, I was prescribed drugs I am allergic to and nobody seemed to know what I needed and at which dose. Thank goodness I still am lucid and can speak English.

To all cancer sufferers out there, do not be a lamb taken to slaughter, you need to be a lion and stand up for your rights. If enough of us roar then they will take note.

[Proud Wife]

Hello Toodotty

Welcome to the forum although I'm only sorry you have the need to be here. None of us want to of course but the support you will receive here is second to none.

I don't normally post anymore having lost my hubby to PC 2 years and 6 days ago. I just find the number of people who continue to be diagnosed far too distressing. However, I popped on here as I do occasionally and could not help but be moved by your story. It's an absolute disgrace and I am so sorry you've been treated this way.

It's not for me to knock the NHS, I'm not really familiar with how the system works as my hubby was lucky enough to have private medical insurance at the time of diagnosis and was therefore treated privately. Although we didn't have to wait for anything and scans and treatment etc carried out immediately, I believe he was still treated as though he had dead man walking syndrome, which is just so typical when it comes to PC.

I wish you all the very best for your continued treatment. Please keep us posted and and rest assured, I am roaring with you.

Take care

Proud Wife. xx

[Dandygal76]

I am also not on here much... the same as pw. However.. dealing with nhs and systems is my skill if you look at my thread for dad.. I can help you advocate for yourself quite effectively. Ask the nurses for my e.mail address if you would like sone help. pw mentioned there were people struggling and it was quiet on here. You are never alone. X .

[toodotty]

Hi Proud Wife and Dandygal76,

Thank you for responding to my post. I totally agree with the being treated as "dead man walking syndrome", this is very much how I feel about my treatment, and something I want to challenge. My view is that we are all "dead men walking", it is part of a condition called mortality and something we all have to face. I just don't want to face it today and I believe we are all entitled to get adequate treatment to help extend our life as much as possible.

Gearing up for Round 4 this week, I have much more energy, have been gardening and even managed 25 minutes on the exercise bike today and felt fine. Planning to challenge the Oncologist on Thursday as to what happens at the end of my 6 courses of treatment and to explore other options that may be available outside of the NHS. Unfortunately my private medical cover was lost when my husband was made redundant in February, typical I had it for 20 years and never needed it.

Dandygal76, I would like to take you up on your offer of assistance, I am not planning to sue the NHS but press for fairer treatment for PC sufferers.

Best wishes,

toodotty,

[toodotty]

Hi everyone,

I have had a really good week this week, treatment is clearly making a big difference to me. I have gained 2kg in weight this week, and completed 35 miles on my exercise bike in 5 days, doing 10 miles yesterday and today.

Went in to see Oncologist today, feeling very positive but Dr Doom was as downbeat as ever. I can go ahead with round 4 of Folfirinox tomorrow ("of course there will be a build up of toxicity in your body so there will be a point when you can't take it any more" quote Dr Doom). All bloods are fine and I am hopefully of going through to round 6 as planned. I have questioned Dr Doom about other treatments such as Nanoknife and Heidelberg and he was quite scathing, however he has agreed to support me if I decide to go down this route. I have again repeated that I am not expecting a cure, and I will fight for extra time but more than anything I (we all) need hope.

My cancer nurse was with me in the session and she was much more positive, saying how fantastic I was looking and just how much more lively and upbeat than the last time. She has also booked herself to take to chemo tomorrow to ensure that they get me started straight away and that I am not left waiting on the ward for 5 hours before starting treatment.

I do have the possibility of being included on the Polo clinical trial (assuming I have the correct gene mutation), so that it also something else I will need to consider.

Meanwhile, enjoy the good days and keep on smiling,

Toodotty

[kate2101]

Hi,

I’ve just started on this very unexpected and horrendous journey. Diagnosed a couple of weeks ago with tumour in body of pancreas and multiples in liver. Just 60, husband, three just grown up children, fit as a fiddle and loads of plans, gutted! I’m meeting with oncologist next week and hopefully starting the Folfirinox regime.

Very sad to read your shambolic treatment at the beginning, but your attitude is admirable and so glad you are feeling so much better. Like you, I’m trying to be positive, read just positive stories and not give in to it. Agree that the ‘dead man walking’ attitude is all to common, we’re alive and receiving treatment, advances are being made all the time and we need hope not doom!

Be interested to hear any updates if you go down the Heidelberg route, my family have been looking at this.....they are understandably exploring every option, they are brilliant and I want to be here with them as long as possible.

Keep up that positive mental attitude, it’s a great help to others too to read your story.

[PCUK Nurse Jeni]

Hello Kate2101,

Thank you for your post, and welcome to the forums.

I am so sorry to hear that you have recently been diagnosed with pancreatic cancer - it is such a difficult diagnosis especially as you have been fit and had been enjoying making plans for your future.

It is a common theme that we encounter when it comes to those diagnosed with pancreatic cancer - they do want hope, and a positive attitude. Hope is very important.

Its good to hear that you have an oncology appointment next week, and I hope that this goes well, and that your chemo starts quickly.

In the meantime, please do not hesitate to contact us should you need to.

Kind regards,

Jeni Jones.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Hi Kate2101,

I am so sorry to hear about your diagnosis, and feel both for you and your family. I must admit that I have not yet told my sons the seriousness of the situation, I believe that there is plenty of time to mourn and it is not now. I am trying to get everyone to carry on with their lives as normal, as much as possible, but it is proving quite difficult. I have however, persuaded my 86 year old mother to take a weeks holiday as I am not planning on going anywhere soon. My husband is still the hardest hit, and I keep telling him to remember the good times, we have been together for 38 years and I have told him that I don't wish to finish my days married to a grumpy old man! He is learning to cope but I do have to keep an eye on him.

You will be feeling full of odd thoughts at the moment, my most surreal moment was when I was planting some early potatoes and having the sudden thought that they would probably live longer than me! How wrong, I am currently enjoying stuffing my face with them liberally dosed with butter. So don't believe everything you read.

If I had my time again with the oncologist there are two questions I would now ask:

1. What priority is my cancer treatment being given (I saw my records and I was down as routine; by the way you are entitled to see all of your records under the new GDPR rules and regulations, including minutes of meetings, emails, voice recording, even CCTV. Good to know if you wish to make a bit of a nuisance of yourself - it is called a Subject Access Request).

2. How quickly will your treatment start? Sorry the NICE guidelines are not good enough for a 30 or 60 day pathway when this cancer progresses very quickly. Quick diagnosis is no good if treatment is delayed.

Also, find out where they will administer the chemo, I was shown the chemo suite which was quite a hot crowded room with a bunch of reclining chairs. I quickly realised that I was struggling to sit down and the first Folfirinox takes about 5-6 hours, hardcore when you are not feeling well, insist on a bed because it is exhausting and my first three rounds took over 10 hours. Today it was 7 hours and they were on my case straight away and very efficient. I did feel pretty rubbish at one stage and did suffer quite a bout of vomiting so was relieved to be able to lie down a sleep it off.

I too was fit and healthy but did start to go down hill rapidly, even the first dose of chemo made a big difference to me so keep positive. But expect to fight, and don't be afraid to complain (one of the cancer nurses actively encouraged me to, even pointing me in the right direction!). You will met some truly amazing people on this journey, including the wonderful nurses and doctors who will treat you, but there are not enough of them.

Good luck, keep fighting and don't give up hope.

Toodotty

[kate2101]

Hi toodotty

Thanks very much for your advice, very helpful. Not a good day yesterday, collected my daughter from London, she’s been there for a couple of months on an internship. She is devastated. I’ve tried to play down the seriousness of it all as much as possible but she’s not stupid. Think it’s made it more real for me too. Anyway, positive mental attitude!

I had a liver biopsy last Monday and my oncology appointment Tuesday is to discuss results and chemo. I’ve been led to believe, if all suitable, this should start within next two weeks. Who would have thought I’d be looking forward to being pumped full of toxic chemicals! Was supposed to be on holiday in Cornwall but I want to get going with regime.

Still doesn’t feel possible this is happening but we have no choice but to get on with it. Keep telling myself the longer we can hold on the more treatments will be out there. Hope you feeling ok today and not too many side effects.

Thanks again for advice, much appreciated.

[toodotty]

Hi Kate2101,

Unfortunately everyone who knows you will be devastated and find it difficult to cope. Some of my friends have admitting to crying continually, it even has taken one 2 months to ring me because she was afraid she would break down on the phone. I made her come and visit me today, we had a good laugh, including me trying on a range of my disguises (courtesy of head scarves, wigs etc.). I told her that I have rationalised my disease as there are worse things, such as dementia, motor neurone disease, (look no further for inspiration than Stephen Hawkins), persistent vegetative state etc. She went away feeling much better as she could see that I was coping, and that I clearly am not on my deathbed.

Had a really good day today, not leaving hospital total exhausted yesterday has had a positive affect today, I haven't even needed any painkillers.

Interesting that you have had a liver biopsy, I had a biopsy of the pancreatic tumour but they have not taken much interest in the liver, though I have only 3 small lesions on the liver.

Good luck for Tuesday,

toodotty

[kate2101]

Hi again,

Multiples in liver so easier to get to I think. Better day for me too, ‘normal’ day, food shopped and bbq in garden. Ate quite well and think my daughter reassured that I’m still the same mum. She disappeared out and came back with an assortment of healing crystals, wish it was that easy to heal but I’m sleeping with them under my pillow .

Hopefully another good day tomorrow, friends joining us for another bbq, making the most of the sunshine and reassurance I am still me!

Like you, I keep comparing my illness with others and have reached the same conclusion....there are worse positions to be in. Still not fair but have to get on with it and make the most of every day.

Glad you had a good day too, here’s to many more!

[PCUK Nurse Jeni]

Hello Toodotty and Kate2101,

Thank you both for such positive & inspiring posts over the weekend.

You both seem to be just "getting on with things", so to speak, and being able to share stories, and support one another is lovely.

I wish you both the very best in ongoing treatment.

Kind regards,

Jeni Jones.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Hi Jeni and Kate2101,

Absolutely, no point in mooching around feeling miserable. Making the most of the time, could be run over by a bus tomorrow, there is no certainty in life. Was a bit worried I might be arrested on the suspicion of shoplifting today, as I was the only person in the shop in bobble hat, gloves, coat and long trousers, thanks to the tingle fingers, toes and nose. But that will diminish in a couple more days, once the chemo has gone through the body.

Starting back on the exercise bike tomorrow, as the steroids are really doing for my legs and buttock muscles. My bum will never look big in trousers now!

Good luck for tomorrow Kate2101,

toodotty

[kate2101]

Hi Jeni and toodotty

Back from meeting with oncologist, agreed to folfirinox, no specific date yet but probably 2 weeks. Although a very nice doctor, I came away full of gloom although no more bad news, diagnosis unchanged. Told in no uncertain terms if I don’t get on with folfirinox NHS won’t fund softer chemo. Agree toodotty, dead man walking syndrome too prevalent, what happened to hope?

I can picture you in this baking heat in your ‘disguise’, hope you made it away with some nice pickings!

Must get on my exercise bike too, once I’ve moved all the washing off it, it’s a brilliant clothes airer!

[Proud Wife]

Hello Ladies

I've just updated myself with all your news and am in awe of you both! I'm not sure if you are aware but you can ask admin to pass your contact details to one another if you want to have a more personal chat off forum. I'm only sorry there's not that many forum family members on here at the moment to support you both along the way but there seems to have been bit of a gap of new members posting in the past months so consequently, it's very quiet on here. It doesn't mean that we care any less about you though and I send nothing but best wishes for you both to quash that dreadful dead man walking syndrome and to give PC the bashing it so deserves.

Toodotty, my husband was treated under private medical insurance. I have to be honest and say the quality of care that he received was probably worse than most of the NHS (I believe the bare minimum was done for him by his oncologist) but.....access to the latest drugs and having treatment within a week of diagnosis was a benefit. I hope the fact that you had to stop your cover is not playing on your mind too much xxx

[PCUK Nurse Rachel R]

Hi there kate2101

It’s Rachel here, I’m one of the other Nurses on the support line.

I am glad to hear that you have now been seen by Oncology and that you have opted for folfirinox. We know that this regime is difficult to tolerate but is also showing us the best results in terms of outcome.

I can appreciate that you felt disheartened after your appointment. Often Oncologists have the difficult task of talking about chemotherapy regimens that are tough to tolerate and are unable to give guarantees in relation to their success. Sometimes it is difficult to get the right balance in these conversations. Only earlier today one of our colleagues was highlighting the importance of hope in the midst of treating cancer and the positive impact that this can have.

In terms of having to pay for a less difficult to tolerate chemotherapy type, this is not correct. Certainly we have clear guidance in terms of second line chemotherapy treatment that should be available free of charge on the NHS. If you did wish to pick up this discussion further then please don’t hesitate to contact us – details are below on the signature.

With kind wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[kate2101]

Hi all

Nothing like an exciting game of footy with the family to take your mind off things!

Thank you proud wife for your lovely comments, toodotty...happy to chat off forum if you’d like to.

Thank you Rachel too. Another ‘disappointment’ with today’s oncology meeting, I called my designated specialist nurse yesterday as my daughter wanted to come with my husband and myself. We only broke the news to her Friday as she’s been in London on a placement with uni. I explained she was still reeling a bit and asked if meeting could concentrate on next step treatment and not long term prognosis. I’m fully aware of what could lie ahead but don’t want to worry her too much at this stage. No problem I was assured. Specialist nurse couldn’t attend but promised to have a word and preempt the situation. The 3 chemo options were explained to me but unfortunately the words ‘if you go down the folfirinox route it could give you an extra 5/6 months’. Needless to say she was in pieces again.

Fortunately my older son and wife are here for a couple of days. My daughter in law is Turkish, her father has survived radical surgery for prostate cancer, a close family friend has just been given good news re Lymphoma and skin cancer and best of all, another family friend is 2 years down the line with stage 4 pancreatic which had spread to liver and stomach, also had op. Needless to say I will be getting more info on last case. I know there is no miracle cure but once again, a glimmer of hope makes life bearable. Who knows what’s round the corner, good or bad. I intend to be here as long as possible and a person living with cancer not dying from cancer.

Lovely to know someone is there if I need a rant!

Thank you all x

[toodotty]

Hi All,

Met with my lovely GP yesterday who is constantly uplifting. I have talked to her about Nanoknife and Heidelberg and she is prepared to put a case forward to her PCT to see if there is some funding available. She has also said that I am the first "younger" PC patient that she has had to deal with and the first one to complain about the level of treatment available. It has "opened her eyes" as to how inadequate the NHS is in dealing with PC compared with the rest of the world and she is on a campaign to spread the message to her peers about this terrible situation; they are equally shocked.

Off to see Dr Doom tomorrow and gearing up for Round 5 Folfirinox on Friday. I have had virtually no pain since the last treatment so hoping for more progress. I have also discovered unpasturised sauerkraut which seems to be helping a bit with the bloating and constipation.

Keep on rocking!

toodotty

[kate2101]

Hi toodotty

Your GP sounds brilliant, makes such a difference. Good luck with NanoKnife and Heidelberg, please keep us posted.

Saw my Dr Doom today and have my first Folfirinox tomorrow. Scared but looking forward to getting things underway. My night pain has got worse recently and energy plummeting. I’ve been prescribed morphine so hope I won’t be pacing up and down at 4am again.

Unpasturised sauerkraut sounds awful but I might give it a try.

Anyway, 1-0 at halftime, miracles can happen!

[PCUK Nurse Jeni]

Hello Toodotty and Kate,

Firstly Kate, the footy was sad for England, but they have done themselves and the whole country proud! They gave us all a wonderful and entertaining time, and I am sure for some of you folks on here, something else to focus on, albeit, momentarily.

Toodotty, your gp sounds absolutely amazing - just the sort of gp that you need. If we can help in any way, by providing resources, or if she is interested in the APPG for pancreatic cancer, please do let us know.

Kate, possibly by now you will have had your chemo - i hope that it went well, and more so, that the next few days don't bring too many side effects.

You are both inspirational.

Take care,

Jeni.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Proud Wife]

Ditto Jeni's words regarding our incredible English squad. Such a pity but they did us proud!

And double ditto Jeni's comment that you are both inspirational. You sure are.

Kate, hope today's chemo went ok? Perhaps you would like to start your own thread so that we can support you? Fingers crossed your pain subsides quickly. My husband's did after he started folfirinox.

Toodotty, good luck for tomorrow round 5. Massive shout out to your GP. That's great that she wants to be so proactive.

Keep us posted xxx

[toodotty]

Hi All,

Saw my lovely GP this week who was delighted at how well I was looking. Since being diagnosed with PC she has been an absolute stalwart for me and this week admitted to being totally horrified at how badly PC sufferers are treated. She admitted that her other PC patients were elderly and had many other complicated issues which gave them little chance, but she assumed that given my age and fitness levels that I would be offered the best possible treatment available and this would be equivalent to what is available in other developed countries. A bit of research by her has highlighted that this is not the case and she is quite disgusted about this. She has been busy raising awareness with her peers and has even offered to put a case to the PCT for funding for treatment such as Nanoknife, obviously no guarantees, but she wants to wake up the medical profession to the inadequacies of NICE when dealing with PC.

Also saw Dr Doom today who was actually quite cheerful for once. He is happy with my progress, jaundice levels are still dropping and other tests are fine too. He has booked me in for round 5 & 6 of Folfirinox, also a CT scan and we will meet again on the 9th August for review. At last I have had 2 weeks almost pain free, though I am still chomping my way through a vegan diet. Just as well is seems to have become fashionable and there are good ready meals available.

(post edited - moderator)

toodotty

[toodotty]

Round 5 Folfirinox,

Saw Dr Doom last Thursday and for once he seemed a bit more upbeat. The bilirubin levels have now dropped down from 39 to 20 in two weeks, probably the 6 pints of squash I am forcing down me everyday, and I am feeling so much better.

Round 4 Folfirinox had killed off the pain so and this has continued into Round 5. The lovely ladies at the hospital yesterday got me in and out within 5 hours, need to send them a Record Breakers card because this was quite amazing. There were also the same two nurses who treated me the last time so it made is so much easier for them and me regarding continuity of care. I now have the nick name of the "polite vomiter", because last time I was massively sick but made no noise at all! This time they gave me an anti-sickness injection which put pay to the problem, but I do get a bit hot and sweaty when they hook me up to the second round of drugs so I turn over and sleep through this bit.

I was so well for this round 5 treatment that I was able to drive myself the 45 minutes to the hospital and check myself in. I rang my husband as they hooked me up for the 2nd set of drugs as he was cycling over to pick me up, with time for a short pub stop on the way for him of course. This gives him back some of "his time", I am quite happy in hospital with my Amazon Fire listening to my audible books (shuts out the less polite vomiters and all the beeping!) and playing various games.

So one more round to go, I have agreed that I will see the oncologist next after round 6 and once the CT scan results are back. So next two weeks, I will spend getting up to speed on Nanoknife surgery and the Heidelberg options.

Everyone is amazed at how well I am coping with the treatment, my advice eat as well as you possible can. I am almost vegan because my body doesn't want animal products at the moment, and there are some fabulous ready meals now available at good prices. Also don't forget to exercise, some of the weight loss will be due to loss of muscle tone, even if it is only step ups three times a day to keep your strength up. And finally drink as much fluid as you possibly can cope with to flush out the chemo as fast as possible reducing the side effects.

My quote for today, picked up from another forum "We are each our own statistic". (Meaning, we each have a unique genetic makeup, a unique cancer and each a unique determination and outlook. One size therefore does not fit all).

toodotty

xxx

PS I have discovered stylish hats, never a bad hair day again!