Category Archives: My health

Sarcoma Consultation

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This afternoon I met, as planned, with my sarcoma team for the results of my six monthly checks from the perspective of phyllodes sarcoma.  They will, of course, be involved in reviewing the results of the biopsy however were keen to let me know what they know, so far.  Good news, there was NED (No Evidence of Disease) in my lungs from the chest x-ray and no evidence of any sarcoma growth visible from the ultrasound and mammogram.

I’ll best get on with healing from the biopsy which now the anaesthetic is wearing off is mightily ouchy! Thank heavens for paracetamol.

Next appointment 22nd July.

Biopsies done… next?

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I’m not sure that I slept for more than 60 minutes in a row last night and was utterly exhausted when my alarm eventually went off.  To be fair I was also being kept awake by my friendly fox, AKA Foxy, who regularly visits my garden and was clearly seeking attention.  I think he’s cross with me because I threw away his favourite toy on Monday (an old Croc shoe)… It was totally tatty and in bits due to his favourite game when he picks it up in his mouth and flicks it over his head only then to retrieve it and do it all again!   Last night he brought me an old tennis ball and then spent quite a while throwing it at the wall just below my window!

Anyway I digress.  I arrived on time for my appointment this morning and was expecting a mammogram with a vacuum assisted biopsy being taken whilst my boob is clamped in the machine.  However I was told that I would be having another ultrasound, further mammogram pictures and then the ‘clamping’.   Wow what a long procedure this was to be.

As before the ultrasound didn’t show up any ‘dots’.  Next off to the ‘boob squishing’ where the dots were clearly visible.  Next they lay out a bed beside the machine where I would lie on my side whilst my boob is clamped tightly in place and pictures taken.  The pictures, fortunately, were clear and I was in the right position for the next part… the biopsies to be taken.  The Dr injected anaesthetic into a number of places and whilst it took effect he lined up the biopsy syringe and switched on the ‘vacuum’ so I knew what noise to expect.

Despite all the anaesthetic and the very clear explanation of what would happen, I wasn’t ready for the reality!  Blinking bananas that was truly painful.  Essentially a larger core of tissue is drilled out and then suctioned up.  They took a few of these and next had to check they had some of the ‘dots’ in the samples taken.  If not, we’d be doing it all again!  Next they insert a small piece of titanium as a marker to show exactly where the biopsy tissue has been removed from and so that future scans show this easily.  Hmmm I would have thought I’d have had platinum and the anaesthetic should have been champagne but I guess they’re cutting back on the NHS.

Fortunately they got enough and the ‘needle/straw’ was removed and I was released from the mammogram clamp.  Only 15 minutes in the clamp.  I then saw the hole that was left… I guess I’ll have a marker of my own to look at every day now!

The tissue will be reviewed by the pathology team to see if there’s anything untoward in it.  It could just be ‘chalk AKA calcifications’ but I won’t know until it’s been under the microscope.

Crazily I thought that I’d be getting the results when I meet with my sarcoma consultant this afternoon but apparently not.  They’ll be giving me the results from a sarcoma/phyllodes perspective ie chest x-ray, ultrasound and mammogram results but NOT the pathology results from this morning’s biopsies.  I’ve been given another appointment for those results on the 22nd July.

I guess there’ll be a few more sleepless nights!  Hello Foxy, fancy a game of catch?

I’ll know soon what the ‘dots’ are…

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OK so they promised to call this afternoon.  Why is it that ‘this afternoon’ is more than just a specific time?  I’ve been on eggshells all day however have put it to good use – 3 lots of washing (done and dry), walk in the park, grocery shopping, front garden weeded, yukka trees pruned and hedges tidied up, lawns mown, jasmine tied back, back garden weeded and cleared out, patio hosed down, pathways swept and tidied, roses deadheaded… etc!  Amazing how much you can achieve when you’re trying not to realise the time is passing and the phone isn’t ringing.

The phone eventually rang at 4.30pm and the lady from the Marsden introduced herself.  It was clear that she wasn’t sure if I knew exactly what had been seen on the scans nor what was ahead.  I told her I did and suddenly the call became so much easier!  Upshot is that they’ve made an appointment for me on Thursday to have stereotactic biopsies under mammogram in the morning and then see my sarcoma specialist in the afternoon for the results.

How efficient is that?  Both appointments in the diary.  The specialists have seen my earlier scans, I’ll have the results delivered to me by my consultant with the pathology already completed.  And all that within a week since the ‘dots’ were first found on my scan.

6 monthly checkups

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A wonderful visit to Belfast to see Johan Gant and Nikki Tweed become Mr and Mrs Gant on 4th July.  Fabulous day and so pleased Johan was able to source and I was able to secure flights to enable me to be there between medical appointments.

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This morning, I was up and out of the hotel in Northern Ireland at the delightful hour of 4.45 A.M.… a time that I’ve not seen for quite a while!  Quick dash to the airport, a small flight to Gatwick, train to Clapham, bus to the Kings Road and then a short walk to the Royal Marsden Hospital.  Whoohooo I even managed to do all that AND be early for my appointments.

You see it was my six monthly checkups today.  My July regimen is ultrasound, mammogram and a chest x-ray.

There has been some discussion within the medical world that checkups are unnecessary, worrisome to the patients and costly to the NHS purse.  It’s been suggested that perhaps cancer patients should have less frequency in checkups.  Or no checkups at all BUT rely on patients raising concerns or with ‘quick access’ back into the system should we find any lumps.  This CANNOT happen.

I’ve been fabulously fortunate in that my medical teams have advocated for me to have a thorough checkup regimen agreed.

Today I was grateful for their professionalism and care of my health and these regular checks.

My mammogram slides have shown some spots that need further investigation.  The radiologist doesn’t believe that they are more Phyllodes tumours but suggests that they may be a scattering of DCIS (ductal carcinoma in situ). Because of the location of the ‘spots’ she has suggested that I come back for a stereotactic biopsy where they will be able to suction out several tissue samples.   I will hear next week about a date for this biopsy but expect it to be in the next week or so.  Following the biopsy, the samples will be sent to the pathologists.  Then the MDT (multi-disciplinary team) will assess the results and advice what the next steps are.

I’ll keep you posted…

Dodgy knee

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OK I’ve finally given in.  My knee has been blinking killing me since I had that fall in Melbourne.  I can’t kneel down or put any pressure on my knee.  You’d be surprised how many times you do need to kneel or balance on your knee and I’m only aware of it when there’s a shooting pain travelling at supersonic speed from my knee to my head – Ouch!  The other problem with my knee is walking up and down stairs.  Not too much of a problem at home as I live on the ground floor but again until every step is accompanied by  shooting pains I’ve been surprised at how many steps I actually take.  I’m learning to avoid certain tube stations where there is renovation works meaning diversions via lengthy spiral staircases!

Anyway this morning I attempted to do a Bootcamp Pilates class.  These are using a bench known as a Reformer.  Much of the class was fine until we reached some exercises that required kneeling.  Excrutiating pain through my knee and my obvious discomfort led the instructor to my bench.  After a brief discussion, he suggested it may be time to have it x-ray’d.

So that’s how I found myself waiting in line at the local hospital to see the Dr!  Some hours later and feeling a little like a fraud amongst people who were properly sick, I saw the Dr.  I apologised first for wasting his time with something so trivial.  He told me off for not visiting sooner since the fall and suggested I may have damaged it further with such a delay.  Once we’d had a chat and he’d had a poke around my knee however he suggested, with some concern on his face, I go for an x-ray.

A short while later I’m shown back into a cubical to await the results.  The Dr returns to announce that I had indeed wasted his time.  There was no visible damage and to go home!   Charming… I still can’t walk up or down stairs or kneel without extreme agony.  Thanks matey-peeps!

MRI

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Eeek time for my MRI brain scan as referred by my neurologist.  Despite having taken part in a film for Cancer Research with me being zipped back and forth in and out of an MRI machine it’s not the same as having it switched on and being there on your own.  I know that it’s not for long and I just have to lay there without moving but it is weird and unnerving.  However another incentive for my being OK with it is that my niece is also having an MRI and said she’d have to wait for me to have mine as I was the grown up!

IMG_3191Here’s a little picture of me just before the nurse leaves the room and they slide me into the MRI machine… as you can see my head is already in a cage – eek!

Not long (about 15 minutes), very noisy (despite the headphones), jiggles around and claustrophobic BUT incredible machine that can do so much.

Now to wait for the results.

Neurology Appointment

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Finally, after several visits to the GP I have now received an appointment with a Neurologist.  I have been extremely concerned as I’ve had a headache for many months that barely seems to dissipate.  Not always delibitating but sometimes it’s accompanied by a visual disturbance so that I can’t read, see a computer, watch anything and feel nauseous.

Recently, my GP ran a number of blood tests to see if they could find anything awry that may be causing the headaches.  My GP tells me that two of the tests have come back with extremely high results but on their own don’t tell us enough but could be an indication of a number of different ailments. Oh joy but hence my referral to the experts!

The consultant I saw today was extremely thorough.  A long questioning followed by some visual and physical tests.  He then asked that I follow this appointment with ‘a few’ blood tests and also referred me for an MRI of my brain.

I don’t mind saying that some of my concern relates to my phyllodes – could it have spread to my brain?  I also know that might make me sound paranoid but it’s a concern that keeps popping up.  However I’m also aware that I’m getting to that age when my body is changing and these changes have different impacts on my health!

The nurse nearly passed out when I handed him my blood test forms… after a short while he counted them up and suggested I make myself comfortable whilst he takes 17 vials of blood!  Wowza, we needed to find a second vein to complete the drain!

Now to wait on the blood test results and the MRI appointment.

Penny Brohn Living Well course

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Tish and I had intended to go together to a Living Well course at the Penny Brohn Centre in Bristol. However after much discussion and before booking we decided that we should in fact go separately to get the most from the retreat. Tish chose to take a wonderful friend of hers, Marie, as her companion and went to an earlier retreat.  Thank heavens as she truly felt it made a huge difference to her final months.

Tish urged me to book myself onto the Living Well course and suggested the course starting today.  I can’t help but know she knew that the timing was important. All day at her funeral I think knowing that I was going to be attending the course in a few hours got me through.  I knew they’d understand.  However I think I cried the entire length of the M4 and only managed to stop crying when I hit the outskirts of Bristol.

As soon as I walked into the Centre, I ran into Michael Connors, Director of Services.  I’ve met Michael a number of times before when I’ve been doing things with Living Beyond Diagnosis.  It was at least a minute after he asked me how I was, that I shed a tear again.  Michael was fabulous and reminded me that I was on the Living Well retreat for ME not as an advocate or on behalf of Living Beyond Diagnosis.  I needed to hear that at that point too.  Thank you Michael.

The Living Well course is an introductory course which aims to provide a tool kit of tried and tested techniques that can help you support your physical, emotional and spiritual health.

The Living Well course encourages you to explore the meaning of cancer in your life with people who understand the impact of the journey. Share your experience with others in similar situations, and think about what steps you could take now to help you live well.  During the residential course there is a wonderfully designed programme with group sessions including information, healthy eating, exercise, understanding the impact of cancer on emotions and relationships and sharing practical tips.

The facilitators use different methods of relaxation, meditation, mindfulness and imagery during the stay and also explain more about the science and research behind the approach.

The Centre is incredibly comfortable with rooms equivalent to any great hotel.  The days are emotional and challenging so despite our early bedtimes, we slept extraordinarily well.

I shared the experience with 10 others.  Both men and women.  Some with partners  and others with friends as companions.  There is also good representation of age and different cancer types and stages of diagnosis.

I came away with a mind full of plans for a future as well as a restocking of my ‘toolbelt for life’ with new and resharpened tools.  I felt lighter than I have for quite some time.  More positive.  Perhaps able to work through some anxieties and concerns.  In addition to this, I was also delighted to have made some wonderful new friends and to have received and given such heartfelt farewell hugs.

The world’s a little dimmer without your shining light

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You’ve heard me talk before about my lovely friend, Tish.  Today I heard the news that she passed away yesterday morning.  My world just got a little bit darker.

Tish came into my life a few years ago when we both attended a charity ball in Brighton raising funds to build a new Macmillan Support Centre (Splash of Green).  The ball was (and has been annually since) organised by a mutual friend, Della.  Della had put Tish and I on the same table along with Lindsay and Kerry.  We had a blast.  We laughed and giggled the evening away and became great friends.

I wrote about our little trip to Brighton.  We had a hoot.   What I didn’t tell you.  I didn’t know how.  Was that Kerry passed away last November.  We didn’t get the chance to celebrate her 40th birthday with her.  I’m sure Kerry loved the planning and plotting on our trip to Brighton though.  Tish and I visited my bench in Berkeley Square and raised a glass to Kerry to wish her a happy birthday.

My bench in Berkeley Square has featured a great deal with Tish and I over the past year or so.  We’ve visited it together and separately.  I’ve loved that I get a text from Tish saying she’s there.  She needed space and somewhere to think and has headed to my bench.  I’ve loved that she found sanctity on my bench too.  I’ve loved that she’s celebrated there with me also.

I can’t believe that a year and a few days after Kerry’s passing, I’m here writing this now about Tish’s passing.

Tish has celebrated the great things with me and also the not so great things.  We’ve met up before or after medical appointments.  Texted, called or sent a card to say that we’re thinking of each other at a time of scanxiety or treatment.  I think we ‘got’ each other.  Despite being in each other’s lives for such a relatively short time, she was truly a great friend.

In recent months when she’s not been so well, I’ve spent time with her in hospital receiving chemo or visited her when she’s been staying ‘overnight’.  We’ve met up in town when she’s having appointments.  We’ve put the world to right face to face.  Lately because of fluid on her lungs, we’ve ‘talked’ more by text.  Long lengthy texts that I’m sure our mobile providers love the cost of.  We’ve exchanged cards and postcards.  We’ve encouraged, supported, motivated and loved.

Tish showed me many things in our short friendship.  Her generosity of spirit.  Her incredibly positive attitude.  Her endless love.  Her ability to plan for a future.  To take life and give it a jolly good shakeup.

For example, last year when she was told her ovarian cancer had recurred.  She did what any crazy fun loving, life living person would do… booked a trip to Australia!  One of Tish’s sisters lives in Australia and had got married in Mexico.  Tish had been to the wedding and had met a man there, Dave.  He lived in Perth.  Tish said it was crazy timing and crazy to think that anyone should come into her life now.  Her month in Australia was made all the better by a truly caring and thoughtful man.  He visited a few months ago and was planning to come over here for Christmas.  I’m so terribly grateful that Tish had this love in her life again.  Despite his living so far away, he was always in touch with her and obviously cared deeply for her.

Tish has always  believed that she can help her health by maintaining a positive energy, meditating, eating well and with nutrition to help fight cancer and keep her cancer-free.  Dave supported her in this and she attended many meditation classes and events in Perth.  She came back from Australia really stunning the medics and proving once again that she can beat this dreadful disease.

Life sort of took over recently with trying to sort out finances and thinking about selling her flat.  We talked about some of the stresses in her life that were now pushing ‘Tish’ time out and the importance of putting it all back together again.  Tish booked into the Penny Brohn Cancer Centre a few months ago.  I talked about my going at the same time but decided that we both needed to talk about things separately.  She took her great friend Maxine.  Tish came back refreshed and ready to renew her positive spirit once more.  Tish urged me to book myself into Penny Brohn.  I’m now supremely grateful that she did and off there very soon.

I can’t imagine the pain and loss that is being experienced by her daughter, her parents, her siblings and Dave.  No parent should lose a child, at any age.  No young girl should have to deal with the loss of her parent.

Just one final word.

Tish I’m incredibly grateful and thankful for you to have been a part of my life.  You’ve taught me much more than you could every know.  I shall miss you dreadfully and right now don’t know who’s going to put my world right.  Who will I text with tidbits of crazy news?  Thank you for your support, love, laughter and encouragement.