The gift that keeps on giving…

It was January since my last update and lots has happened with myself and at abcd towers.

Thankfully February turned out to be a good month with the results from the bone and CT scan and the word “stable” was used.  This has been the first time that I have actually heard that word in the last 3 years since being diagnosed with secondary breast cancer.  So I am on a break from chemo YAY!

The sternum all looks OK, the neck nodes all look OK and the shoulder issue has hardened into a sclerosis.  It looks like maybe the radiotherapy has actually had a cumulative effect over time so that’s positive.  I’m hoping that this will stay like this, I can deal with pain…

My question to G was did he really think that the drugs were working as I have progressed every time and he did confirm they’re working.  It’s currently in no other areas of soft tissue like lungs or liver.  So he’s happy for me to continue on the usual 3 weekly regime of Perjeta and Herceptin combo (Hercraptin as Marie calls it – Marie Hayes blog – Nice Knockers) and then every 6 weeks I have Denosumab as a sub-cutaneous injection.  Just had my next scan so waiting for the results.  Keeping everything crossed for another BIG #cockoffcancer

It was my 10 year anniversary of being diagnosed with primary breast cancer on 15 February 2017, unbelievable that it’s so long since all this shit started and I do feel sad that I really don’t remember life before cancer.  It’s horrible how it takes away the good and you only remember and think about the bad and how it’s affected you.  It was 4 years since I launched www.abcdiagnosis.co.uk as well and this has been such an amazing time of learning, growing and advocacy.  I have been invited to many conferences over the last 2 years to speak about my experience and been asked to join many patient involvement and patient representative groups and committees due to the work I do.  I’m very proud of what I have achieved.

 

22.3.17 was the Pink Ribbon Breast Cancer Drugs Funding and Trials conference in London  – my push for data and statistics for secondary breast cancer patients seems to have paid off,  see my blog link.

 

Macmillan Cancer Voices

The day after I arrived back from the above London conference I attended the Macmillan Cancer Voices conference – I finally got to meet Justine Thompson from twitter who tweeted to me “I think I’m behind you!” and it was great to have a huge hug – Justine also had her sternum removed (and a small lung met) and replaced 10 YEARS ago! She has been NED ever since.  I also have another friend from London who is 6 years sternum removal for secondary breast cancer and NED.  This gives me great hope.  I also met again the lovey Helen Bacon who works for Macmillan.  Unfortunately, I couldn’t stay for the afternoon breakout sessions but it was really good to just be able to meet twitter friends IRL.

 

After the MacMillan conference I spoke at The Paterson Institute Drug Discovery Unit see my blog which includes what happened with the recent fire at the building.

 

Asian Breast Cancer Support Group – Symposium on Patient Engagement & Empowerment

A few months ago I had a conversation (late one Friday night actually whilst I was making tea and sorting the children out!) about patient engagement with Professor Anil Jain who works at the Prevent Breast Cancer (Genesis) hospital in Wythenshawe, University Hospital of South Manchester.  Anil decided to organize a conference around what we had discussed.  He invited some very interesting people from the NHS.  Neil Churchill the Director of Patient Experience of NHS England, Catherine Thompson – Head of Patient Experience at NHS England and Campbell McNeil – Cancer Project Officer with the Patient Experience Team at NHS England.  There were around 70 people attending who were patients and professionals.  Based around the patient voice and we had 3 break out groups to brainstorm various questions.  I did a short presentation in my spot to introduce why I was involved in this and about patient choice.  I co presented with Nabila Farooq a friend and fellow secondary breast cancer patient and advocate from MacMillan and the PAPSI (patient to patient support initiative) group.  There was some extremely useful information that came out of the conference and I’m looking forward to hearing the feedback from Anil and the next steps to address issues we highlighted.

 

Murcia holiday and our 26^th Wedding Anniversary

We had a great relaxing holiday to Murcia.  We celebrated our 26^th Wedding Anniversary whilst there and we had a chilled out day with tapas near the beach after a day sunbathing.  A lovely old school friend has an apartment and she said we could use this over the school holiday.  Amazingly kind – it was just what was needed.  We were out nearly every day to the beach and found a great beach that was just perfect, white sand, clear sea, sheltered cove, a great little beach bar and amazing tapas being cooked from a little kitchen.  Regan and Faron enjoyed family time and exploring and as per usual Faron feels no cold and was in he sea and the pool even though the pool seemed to be sub zero…

We came back on Good Friday and after the Easter weekend it was back to the same routine bloods on Bank Holiday Monday and then usual treatment Tuesday – delayed, here we go again.  Back to the grind #every3weeks

 

Exercise

I did get out doing some running on holiday.  It’s still hard with the sternum issues but I really want to get back to running and cycling.  The cycling isn’t an issue it’s just with the sternum moving and, the ribs and tightness in the chest when I run. I think it will just be something I have to carry on doing and hopefully the more I do, the better I will get and the easier it will get.  I know I won’t get back to anything like I was but as long as I can get running say for 3 miles without stopping now that would be a massive achievement!  This is why we really need advisors or personal trainers who understand disease or diagnosis of cancer or the effects of surgery and chemo and radiotherapy on the body.  And of course everyone is different.  It’s not like just having a bog standard knee replacement and then you get a set of exercises.  Cancer rehab should be something tailored to you and your surgery and the effects it’s had on you as an individual.

 

Sinus issues

Over 4 months now I’ve had a constant problem which started with a virus and what seemed like an infection.  I just sound like I have a cold constantly.  I hopefully have a referral for an MRI scan on my sinuses as I still have a problem with them.  I was hoping our holiday dried them out but no such luck.  After 3 lots of antibiotics I’m hoping they can get to the bottom of what is wrong and sort this out as its very unpleasant.

 

Hysteroscopy

Before we went on holiday I had to have a hysteroscopy which was a camera to see what was going on with my womb and ovaries due to issues.  A polyp was found and that was removed and I also had a biopsy.   Thankfully the result all came back negative so all is ok.  Going forward I am back on hormone injections and I will discuss the issue with my oncologist G.  Now that there isn’t an underlying problem, I’m not as worried and due to an article I had been shown, it may be that not having my ovaries out is more protective than removing them.  As said further discussions are needed with G.

 

Sternum

As per my previous blog back in January my sternum is still not right.  So G wrote to the Cardio Thoracic Surgeon whom I saw before my holiday.

Mark is a lovely chap and I had a warm welcome from him and he was interested and concerned about my health and very pleased to hear about the “stable” results.  He had the scan in front of him and he asked why I was there and I explained the side effects I’m having with swallowing and pressure on the windpipe and then sometimes I can be a bit sick.  Everything I identified was confirmed by looking at the scan.  He said I was right that the sternum is too high.  He could see it just by looking at me and said it could have migrated but I do feel that I have given time for it to settle down and the composite material may have moved.  I really thought maybe it would settle down but it hasn’t.  I have put off seeing him until after Christmas so definitely gave it enough time to maybe settle but it’s still the same.  His question was “what do you think I’m going to say?” yes it’s more surgery.  Of course it was my choice and he gave me a week to think things over.  Of course he can’t guarantee that the problems will disappear but I really think it will help.  It’s just not right or comfortable.  So I had been booked in for surgery on Thursday 20^th April but when I arrived back from holiday I had a letter rearranging it for Thursday 11^th May.  So it looks like it will go ahead this week.

Here is a photo of my friend Jane & myself out Nordic walking – she is getting ready for a fund raising trip walking the Great Wall of China for Maggies and wanted to learn the Nordic technique – you can see the problem with my sternum in this photo!

 

abcd update

I have been looking at various grants for funding for getting the #abcdretreat up and running this year and I have a lovely new friend called Trish Travis who has her own successful recruitment business in Oldham.  A young relative of hers had breast cancer and had mentioned me when she saw me asking about funders on #oldhamhour.  I did actually know Trish through our mutual yoga class.  She has literally took me under her wing and is mentoring and helping me get the necessary support and help to push abcd and everything I’m doing forward.  She has been a HUGE help and we clicked immediately and have formed quite an indomitable bond.  Thank you Trish for being so supportive!  Onward and upward!

 

Lastly, I don’t talk very much about our respective families much, as to be honest there aren’t many of the older relatives left.  My lovely parents have both died (my Auntie – mums sister – is 86 has dementia and in a home) and then over the last 2 years Jeff’s parents have also passed.  It was his Dad’s funeral just before we went on holiday.  I guess I will be writing about “families” in the future.