Tag: macmillan

#Sarcoma North West Support Group

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Hi all

I am writing this post from Liverpool Lime Street as my poorly car is in the garage.  I am on my way home from the support group meeting which was held at the Roy Castle Lung Cancer Foundation.

Now, we are coming up to holiday season and with six regular attendees unable to join the meeting, we were expecting a quiet one.  Boy,  were we wrong! Six new people joined us today which is fantastic. We also had a representative from Macmillan come along to see what we are all about.

Not for everyone
Support groups are not for everyone,  but I love our group.  It gives me a chance to mingle with people, informally,  who have been affected by this rare cancer.  Whilst I would not wish cancer on anyone, there’s something reassuring knowing that there are people out there who understand what you are going through, know how you feel and well, are just there for you. Today we had a family attend who had lost someone close to a rare form of sarcoma. Our support group is open to patients, families, friends and carers.

I would like to thank Rob and Lesley for doing a fantastic job running the group.

Check ups
I had a catch up with Dr Ali on Friday.  Things are looking good so now…I need to start living again. So I’m aiming to return to work in June. Yikes! No more daytime TV for me…..

Say what….?!
So I hate it when I am stressing over an appointment or waiting for results,  and what makes it worse is when someone says “Oh you’ll be fiiiine”. Rewind sixty minutes ago when I said those exact words to someone in the support group… #FootInMouth

How big?
My sister gave birth to this Beauty last week who was 7lb 13oz. Slightly heavier than my tumour was. Wowzer! Certainly put that into perspective!

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Well that’s me for today.

Take care x

Question time….. #Sarcoma_uk @Macmillancancer

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Good evening all,
I hope you had a wonderful Easter.

So, I’m still recovering from my operations. It’s been more painful than I expected but then that’s probably down to the fact that I had two procedures so close together. I’ve had all stitches removed, removed all dressings and my scars are healing nicely. I am back to see my surgeon tomorrow for a check up so fingers crossed the were positive results from the tumour removed in my last surgery.

Question Time
In two weeks I’m off to the House of Commons to participate in Macmillans Question Time event. Macmillan work with both the government and people affected by cancer to drive change. A huge success of theirs is gaining free prescriptions for cancer patients. This event is just one way to shape the future and gain insight to requirements and work with the government to deliver change.
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Macmillans campaign priorities
Macmillan is working with parliamentarians and decision-makers to:

~ Provide support to cancer carers
~ Push for cancer patients to have access to free social care at the end of life
~ Deliver better cancer patient experience
~ Improve cancer survival rates and strengthen cancer networks in the new NHS
~ Improve access to cancer drugs for people with rarer cancers
~ Ensure that cancer patients receive the right financial support at the right time to cut the cost of cancer
~ Secure improvements to the welfare system for people with cancer who are unable to work because of their illness.

I am really pleased I’ve been accepted and think it’s going to be a great day.

From a doctors perspective
Have you ever wondered what it’s like to be an Oncologist? Well this wonderful man follows my blog and he also does his own. You never really think how Doctors and other Health Professionals feel when dealing with their patients, but this blog gives you an idea. It’s a wonderful read.
http://doctormoiowa.com

Thanks for reading peeps. Take care xx

Alone and lonely? #Macmillan #Sarcoma

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So, on Thursday I got a letter saying I had an appointment with the lovely Dr Chandra…..today!! As you can imagine my heart missed a few beats at this but we realised it was just a check up on my leg. The clinic has now moved to the Linda McCartney Centre, which is great as the team now have a permanent home which is more private that the other two areas where the clinics were held. The sad thing is that the team also have patients who are not cancer patients and I’m sure it’s upsetting for them to be sat with so many ill people.

We arrived for our appointment ten minutes early. To our dismay, climic was running 50 minutes late and we had to endure Shania Twain on repeat in the waiting room. Aaaaargh!!!!

Alone. Are they lonely?
On a serious note though, there were so many people who arrived to see their oncologist on their own. Now, being in the waiting room alone can be emotional and that’s before the dreaded appointment, so believe me when I say it’s heartbreaking to see people dealing with this alone. I know I certainly couldn’t face these appointments, and this fight, on my own. Macmillan have a campaign going at the moment called “No one should face cancer alone”. I believe this to be true, but then I question – Do some people choose to take this journey on their own? Some people may do, but not many. So if you know someone who has cancer and they don’t have anyone, then please reach out. The offer of a supportive coffee, chat or even going along to an appointment will be greatly appreciated.

Results
On a positive note, Dr Chandra is happy with my leg. I have a muscle who has now decided to function (how dare it) and it’s such a odd feeling. I had convinced myself that something was wrong so I was over the moon when Chandra explained what I was feeling was normal. He also told me that the tumours on my lungs had massively reduced. This is fantastic news so I am still meeting with Dr Ali next week to discuss the next steps for my treatment I.e surgery and/or RFA. Can’t wait to get this over with so I can move on with my life.

Get well soon…
We have had a spell of family and friends who have been hit with bad health recently. So here’s a get well soon message to Aunty Christine, John (Johns dad) and to Marie who has embarked on her own cancer journey a few weeks ago.