The Medical Innovation Bill And What It Means To Me

When you're close to someone who has been diagnosed with a rare and terminal Cancer, like Myeloma, it can be very hard to watch them go through their treatment. I wrote about my Dad here, so I won't go into it again other than to say that he has been through a second lot of treatment, so that's two bouts of chemotherapy and two stem cell transplants in 4 years. It's a harsh treatment to go through and to witness. It takes months to complete and it takes months to recover from. Quality of life is not great to say the least.

For relatives and patients going through this it is really hard to see the wood for the trees. Life is in the specialists hands and you really tend to accept that their word is gospel, you believe in them to do their very best for you. Your energy levels are low and you or your nearest and dearest are fighting against the Cancer but you don't think to question whether enough is being done for you?

Well actually enough is not being done. We hear of progress and success in the treatment of some Cancers but the majority of Cancers do not have successful treatment rates and the methods of treatment are in a lot of cases 40 years old. The same practises have been used for so long, something that astounds me, apparently we're stuck in a rut with cancer treatment and new treatments are not forthcoming. The feeling in a lot cases is that people should accept the Status Quo - that is the patients and also the doctors.

So why aren't new treatments being introduced? Why aren't doctors being encouraged to innovate?

There is really one reason for this. The cost of litigation to the NHS has doubled in the past 4 years. Billions of Pounds are currently set aside from the public purse for compensation battles that the NHS feels it won't win. This burden has a knock on effect on the way Doctors work. They may well want to pioneer new treatments and try new methods but they're held back for fear of being sued. The fear of litigation and being called out as negligent is a real one and therefore they carry on with the Status Quo and follow standard procedures. Procedures that are actually archaic and medieval in their administration. The system is by nature 'anti-innovation' and because of that the same medical practises for Cancer treatment will be used over and over again. Einstein said that the definition of Insanity is the repetition of the same experiment over and over again and expecting different results. And that sums up the system for the treatment of cancer nicely.  

Things need to change and that's where the new Medical Innovation Bill comes in. Doctors need to be encourage to innovate. they need to encourage chance. Doctors need to be made to account for their actions, when they sit back and follow standard procedure. They need to be questioned as to why they are doing that and asked is that really the best course of action? If the Bill is to go through then Multi-disciplinary teams will have a chance to help patients. If one Doctor in the team suggests a new way of treating a patient then it's up to the other doctors to explain why that wouldn't be a good way and why standard procedure is the best way. It will encourage Doctors to feel like they can speak out and Doctors who don't will be challenged more.

It's important to point out that this Bill doesn't encourage recklessness. Patients and families undergoing treatment wouldn't be exposed to Mavericks who take risks. They would be part of the dialogue and they would be able to say whether they wanted to take new medications/ undergo different methods of surgical treatment. 

To me this Bill makes sense if it encourages Doctors to move away from always using the same treatments and explore new ones, that can only be a good thing for Cancer. New innovations are needed. I thank Maurice Saatchi for drafting this Bill. As someone who has a loved one with Cancer I thank him for using his influence and channelling his experience of the disease into creating this Bill and helping progress in Cancer treatment. The Bill won't cure Cancer, the Doctors will, but the Bill will give them the freedom to explore more pathways and achieve more in the field than is currently allowed within the law.

All Cancer deaths are wasted lives. Support the #SaatchiBill

Race for Life Training

So as I mentioned at the beginning of the week I'm running Race for Life at the end of the month. I decided that this will be my cue to get fit! So on Wednesday after finishing work at lunchtime I put on my exercise kit (it still fits after a 2 year break - good sign!) and stepped outside my front door to have a light jog and see how I got on.

Well I was pretty pleased with what I did actually considering I have done no real exercise in about a year (do a few Zumba classes count?) and I've not exactly been a healthy eater. I just did a 20 minute circuit locally to me that I calculated afterwards was about 1.6 miles. I jogged the whole way, and surprisingly I didn't have my usual mental battle going on of "I can't do this" the entire time. In fact my mind was pretty clear and I enjoyed the whole thing.

Only things I did wrong were to not take water, I know it was only a short jog but I did feel like I needed a slurp and I took the wrong key and ended up being locked out!! Durrr. Luckily my neighbour didn't mind having my sweaty personage on her property for a bit!

So there we have it. I've started training and it feels good. I plan to jog the same route again tomorrow and then next week I have an even better route in mind from my office to Victoria station which will take me past Buckingham Palace! Looking forward to that one! Will keep you posted.

If you would like to sponsor me you can do so here: https://www.raceforlifesponsorme.org/sharondonnelly0/

Race for Life 2013 - Support Me to Raise Some Dough

BRIOCHE PASQUIER UK LAUNCHES FUNDRAISING CAMPAIGN TO SUPPORT CANCER RESEARCH UK’S RACE FOR LIFE 

This year Brioche Pasquier UK, French Family Bakers since 1936, are supporting Cancer Research UK’s Race for Life. The new champion sponsor of Race for Life hopes to raise £15,000 to help fund vital research to beat over 200 types of cancer, as well as offering up to £10,000 worth of free child entry vouchers in the lead-up to race days throughout the UK.

Me, back in 1999, before my first Race for Life in Cardiff!

I will be running Race for Life in Guildford at the end of May and I'm really looking forward to it. I first ran Race for Life in 1999 in Cardiff with my best friend as that's where she lived at the time. It was a great event then - I looked back in my diary to that day and my comment about it was that I was breathing like Darth Vader by the end of it - my fitness is not so great now, so they'll be no change there then this year! Since then I've taken part 6 times and I've loved it everytime. There is such a feeling of cameraderie and that everyone is in it together. I was first inspired to run as my Grandfather had passed away from a form of bone cancer and it was my way of trying to do something positive in his memory. Since then in 2009 my Dad was diagnosed with Myeloma and other family members have also suffered, most recently my wonderful Nan who is about to be treated in the next couple of weeks. So you see it affects a lot of people and it's the work of Cancer Research UK that helps to keep the likes of my Dad and Nan surviving. This year I'll be running the race with both of them first and foremost in my mind. If you fancy sponsoring me then you can do so at 

https://www.raceforlifesponsorme.org/sharondonnelly0/

If everyone I know sponsored me a teeny tiny £1 it would be fantastic! I've been very lucky to be sponsored by the Race Sponsors at Brioche Pasquier to the tune of £250, so any more on top of that would be amazeballs.

Brioche Pasquier have got two fantastic Race for Life promotions that are worth checking out:

The first of the promotions, ‘Run with Your Mum’ packs, hit shelves recently in leading supermarkets and will be included on the filled brioche range. The initiative is to encourage up to 1,000 mums to run with their children by covering the £10 entry fee for the child.

The second promotion, ‘Raise Some Dough’, which runs throughout June and July gives customers the opportunity to win donations of up to £100 to send to friends or family taking part in a Race for Life event through their JustGiving page - or alternatively they can simply donate to the Brioche Pasquier Race for Life team.

At over 200 Race for Life events this summer, Brioche Pasquier UK will also be rewarding every participant crossing the finish line with a sample from PITCH, its filled brioche range. In addition, Brioche Pasquier will be hosting a variety of exciting experiential activities across 10 events, enhancing the overall race day experience for participants and their families.

If you fancy entering Race for Life, enter now at www.raceforlife.org or via the hotline on 0845 600 6050. The entry fee is £14.99 for adults and £10 for girls 16 and under. This covers the costs of staging the event series and means that money raised in sponsorship can go to help beat cancer. Events take place across the UK from May until the end of September

Facts about Race for Life

· Cancer Research UK’s Race for Life is the UK’s largest women-only event series that helps raise vital funds to help beat cancer

· Since Race for Life started in 1994, an incredible six million participants have raised over £493million, more than any other UK event series raising money to fund cancer research

· Race for Life raises money that goes towards beating over 200 types of cancer affecting both men and women


Facts About Cancer Research UK

· Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research
The charity’s pioneering work into the prevention, diagnosis and treatment of cancer has helped save millions of lives.

· Cancer Research UK receives no government funding for its life-saving research. Every step it makes towards beating cancer relies on every pound donated

Cancer Research UK has been at the heart of the progress that has already seen survival rates in the UK double in the last forty years

Cancer Research UK supports research into all aspects of cancer through the work of over 4,000 scientists, doctors and nurses

Together with its partners and supporters, Cancer Research UK's vision is to bring forward the day when all cancers are cured.

For further information about Cancer Research UK's work or to find out how to support the charity, please call 0300 123 1022 or visit www.cancerresearchuk.org. Follow us on Twitter and Facebook

Lymphatic Cancer - Be Aware.

I missed Lymphatic Cancer Awareness Week which aims to raise awareness of lymphoma, the UK’s fifth most common cancer but I figure that awareness of Cancer can take place at any time of the year as really Cancer affects most people (whether they have it or family/ friends have it) all year round. I had no idea that Lymphatic Cancer is the 5th most common cancer. Cancer has affected our family considerably in the last few years, Myeloma being the one that my Dad lives with daily, so I'll do anything to help people from living through the bad times that he (and we) regularly goes through by raising awareness of symptoms to look out for.

The Lymphoma Association, the UK’s only specialist charity which provides information and support to anyone affected by lymphoma, is using the week as an opportunity to raise awareness of the disease and its most common symptoms.

Lymphomas are cancers of the lymphatic system, which is part of the body’s immune system. There are many different types of lymphoma, although they are broadly categorised as Hodgkin or non-Hodgkin lymphoma.

Lymphatic cancer can occur in both men and women at any age, but is most common in people over 55. It is also the most frequently diagnosed cancer in the under-30s. This is the part I find I find most scary - it affects mostly young people who may ignore important signals that their body is telling them.

More than 75,000 people in the UK are living with lymphoma and over 14,000 people are newly diagnosed every year.

The most common symptom of lymphoma is a painless lump or swelling, often in the neck, armpit or groin. Other common symptoms include excessive sweating (especially at night), fevers, unexplained weight loss, unusual tiredness, persistent itching, a cough or breathlessness and abdominal pain or diarrhoea.

Sally Penrose, Chief Executive of the Lymphoma Association, said: ‘Although lymphoma is the UK’s fifth most common cancer, many people haven’t heard of it until they or a loved one are diagnosed. We are trying to change this, so that people will go to their GP straight away if they experience any lymphoma symptoms over a period of time.

As well as raising awareness of lymphoma, the Lymphoma Association has a freephone helpline, free patient information sheets and booklets, a website with an online chat room and forums, support groups across the country, a buddy scheme  which puts anyone touched by lymphoma in telephone or email contact with volunteers who have had similar experiences and conferences for patients and health professionals.

If you have been affected by lymphoma and want more information, visit www.lymphomas.org.uk or call the Lymphoma Association on 0808 808 5555.

Still At the hospital and Jaundice...Part 3 of my birth story

Following on from Part 1 and Part 2 of my birth story..

So Isla was taken off to be weighed and I was being expertly stitched up! I was in a daze, on reflection now I know that I didn't have that rush of love that I see going through the faces of most of the women on 'One Born Every Minute' - I think I just felt like that was my ordeal over and apart from the guy between my legs sorting out my under carriage, everyone else was surrounding the baby, including OH obviously and I was just left with my legs akimbo! I was so tired after no sleep for nearly 3 days and all I could think of was myself!

Isla (she wasn't Isla just yet - she was nearly Iris) was doing a bit of grunting apparently and there was talk of her being taken away for a bit for oxygen, anyway, this calmed down and we were eventually taken down to our own room. I'd been cleaned up (sort of) and had my tea and toast. I still had a catheter in and this was really horrible having the bag in the bed with me. I don't remember a lot of the day apart from my mum, dad, sister, her partner and my MIL coming to visit. I looked like sh1t and I felt like I'd been knocked down by a bus. I was on the same pain killers as the Caesarean ladies because I think it was felt that I'd been through just as much as them! I had my Catheter removed and so could move about a bit more freely which was nice.

Once it got to 8pm, it was time for the OH to go home and then I was scared. He was under strict instructions to get his arse back up to the hospital the minute the doors opened in the morning! I got through the night, must have slept a bit. However I couldn't go to the toilet, it was like having cystitis, knowing i needed to go, only doing a trickle, trying to force it but it wouldn't happen. This went on all day until at night it was agreed I needed the catheter again - a whole litre came out straight away!!





The morning of Day 3 and I had the catheter removed and thankfully I could wee! Now I felt like I was sorted out I could focus my attentions better on my baby but this was the day that it was raised that Isla looked jaundiced. She had been gradually developing this lovely deep St Tropez tan and so on this day steps were taken to wipe out the jaundice. This involved her being under fluorescent lights, naked with a blindfold. This wouldn't seem very kind to me and I guess to a newborn baby this is the scariest thing ever. Isla certainly made her feelings known about it and screamed the place down. I could only take her out to feed her and clean her up (she was without a nappy) she was just lying on a pad that would absorb the wee but the meconium poo was another matter! She'd do a poo and then her legs would kick it everywhere, her feet would mix it around and make it into some kind of weird black artwork! That night was hideous, she screamed solid from about 1am to 4am. I was calling OH on and off and waking him up. I was crying to the midwives (who were all too busy for this!). Everything felt so bloody awful in the middle of the night.

The morning of Day 4 and Isla was tested to see if her jaundice levels had come down and they hadn't, so a second light was introduced. I was so upset as the day before they'd seemed so sure that 24 hours of this treatment would produce the desired results but they hadn't. I also knew this would mean another night of hell. My mum came to visit me that day, and as my Dad was still pretty poorly from his Cancer she couldn't really come for long and I really missed having her support. I was feeling really low and the breastfeeding wasn't going very well and one of the things with jaundice is that it's really important to get the fluids in the baby as this helps a lot. But my boobs were letting me down, where was the milk!? It got to 8pm and I had a mini breakdown as I knew that they would be sending my OH home and I'd have another night of a distressed baby on my own. They were very sweet and said that he could stay but wouldn't be able to leave the room - well that wasn't going to work at all, so I pulled myself together and let him go home. It was decided that Isla would need to take on some formula until I could get my milk flowing. I felt really disappointed in myself about this, but knew it was for the best and I'd keep trying to feed her.

Day 5 and Isla was tested again and things were going in the right direction, jaundice levels were coming down and also my milk came in! It was still not a great day though and I was so fed up of being in the hospital. I wasn't mentally prepared for more than 2 nights in hospital with my baby (the possibility of this had never come up in my NCT classes). I wanted to be home, receiving all our baby's visitors, showing her off and also sleeping in my own bed. I was hopeful that we could go home that night but it wasn't to be. I realise now looking back that I didn't leave that ward for the whole 6 days I was there, I'd become institutionalised! I didn't even choose my own food until the last day I was there. I'd send the OH out to choose for me, it was all a bit weird. She came out from under the lights at midnight which was great as it meant she could wear a nappy, wear clothes, not be blindfolded, the lights didn't keep me awake and the room wasn't 500 degrees (it was July and the windows had to be closed while she was under the lights!).

Day 6, was all looking promising for going home. She was still tanned looking but her blood showed the levels were dropping. However it takes the hospital ages to discharge and we didn't leave until 6.30pm, and that was under the proviso that we had to come back at 9.30am the next day to have Isla tested again. They tried to persuade me to stay but at that point I was  gathering our things, I had to GET OUT!! Isla was strapped into her car seat and I was running hobbling as fast as I could out the doors to the car. I was so happy and I couldn't wait to get back to our house and begin family life. We got home and we put Isla in the moses basket, I ran around doing some chores (nutter!), I enjoyed my surroundings. She slept well that night, we set our alarm to wake us up in the night to feed her as we were so paranoid about the jaundice and ensuring that the test in the morning would be OK.

Day 7 - Returned to the hospital and got the official go ahead to go home and enjoy our baby - she was on the mend and family life started here!

I realise that this post mostly deals with my feelings and it doesn't really go into how much I loved my baby - of course I did but I think the long labour prior to her birth and then the 6 days in hospital really challenged me mentally as it all hadn't gone as well as I'd hoped it would during pregnancy. I'd had such a smooth pregnancy that it hit me like a sledgehammer when I had Isla. I don't do well in situations that are out of my control and it just wasn't the dreamy ending that I'd hoped for when thinking about welcoming our new life into the world.

The Big C

This year I've taken part in 2 events to raise funds for Cancer research and care; Swimathon, raising money for Marie Curie Cancer Care and Race for Life, run by Cancer Research UK.

I was happily bumbling away in my pregnancy bubble when I found out my Dad had cancer.

April 2009, I was 6 months along and my Dad was having back trouble. This is all we thought it was and he'd been back and forth to the doctors, been given pain killers, but nothing satisfactory had been done to make him better. He was getting worse until finally during a trip to the doctors he got stuck between some lift doors and he was in agony. An ambulance was called and he was admitted to hospital. From that point onwards his diagnosis came quickly.

I remember the day the consultants told him he had cancer, they came to my Dads ward, closed the curtain around his bed and told us in a matter of fact way that he had Myeloma. I didn't know exactly what this was but I knew it was cancer and from that point on, I think I only heard random words that were being said. I felt like I was underwater and my ears were blocked. The only other word I heard was 'incurable'. I also felt like this wasn't really happening to our family, I wanted them to take it back, it seemed wrong that we were in a ward surrounded with other patients and a flimsy curtain was being used to shield others from the worst news I'd ever heard.

From that point onwards treatment started, oral chemotherapy, radiotherapy, stem cell transplant, further chemotherapy. It was a long slog for my Dad, and my Mum was holding everything together while he spent a long while in the hospital. I got quite aquainted with the hospital, as apart from visiting Dad I was having my ante-natal checks there too. Quite often I'd couple a midwife appointment with a trip up the stairs to see Dad.

I found it really hard to keep my feelings in check all the time, I was heavily pregnant, getting extremely tired, working full time and wishing all the time that this wasn't happening. I couldn't believe that life could deal such a cruel blow when we were meant to be having the best year, with not just one grand-daughter on the way but another one too, as my sister was expecting as well. My mood swings were terrible, one minute crying uncontrollably, the next happy and I didn't want to crack in front of people (I saved this for my poor husband). I would feel guilty and selfish for feeling sorry for myself as afterall it wasn't me that was ill, was it!

Since those first really awful months in 2009, we've obviously had our baby, my sister has had her baby and my Dad has his illness under control according the specialists, so life is good and looking so much more positive. The babies in the family have really helped to lighten everyone up, especially my Dad, he loves to see them and I love to see him with them too. He inspired me to fundraise this year and I feel proud that in total I raised £850 with my combined swimming and running efforts. It's so important to support these charities as Cancer affects most of us at some point in our lives.

Pics above of me jubilant after swimming 100 lengths in just over an hour and with my lovely sister after running 5k.

http://www.mariecurie.org.uk/?gclid=CIeA-KiDh6UCFWIA4wodLz5XOA

http://www.cancerresearchuk.org/?gclid=CKiz5ryDh6UCFUsB4wodXhLxPA

http://www.myeloma.org.uk/