I ♥ Motherhood: Myeloma

Showing posts with label Myeloma. Show all posts

Wednesday, 11 September 2013

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

Friday, 21 September 2012

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.

Thursday, 4 November 2010

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.