Dr Knight-in-shinning-armour

Chemo#4 went ahead on the 18th September, where the healing marks on my hand, from a 'reaction' to Chemo#3 attracted some attention. The reaction was slight and hadn't  bothered me enough to let any medical professionals know, so I was quite surprised at the scrutiny it received. 

Thankfully this did not delay chemo, however I did leave with Doctors orders to report any reaction and with a recommendation that I be fitted with a PICC line if there were any further problems! 

I tried to convince the Dr that I could continue to cope with the reaction on my hand and explained that I was desperate to avoid having a PICC line. He seemed to have no doubt that I could , however the Dr explained that this could cause longer term implications, but ultimately that it ‘is up to me’ if I had a PICC line fitted.  

I’ve been hearing the ’it’s up to me’ quite a lot lately which now seems to invoke an involuntary ‘eye roll’ every time I hear it and I try sooooo desperately to hide it. 

In presenting my case and reluctance to have a PICC line, I explained the problems I had in 2014, how I had to be fitted with Groshon and described the impact on my day to day life, all hoping to provoke an exchange of thoughts that would enable me to feel satisfied that the PICC was the only option. I’m pleased to say that the Dr took time to listen, however  ‘It’s up to me’ was as far as any ‘debate’ went. 

Sure enough, little blisters started to appear 5 days after chemo and with the biggest of sighs, I updated the out of hours Oncology service. Whilst no action was necessary on  the Sunday when I called, a follow up call from the hospital on the Monday led to a visit to the assessment bay for fear there was concern, I was experiencing cellulitis.

The Dr who assessed me was happy that my hand wasn't infected, but again recommended that I be fitted with a PICC line as I had reactions following  3 out of 4 chemo’s. The Dr acknowledged my reluctance, but again said ‘it was up to me’, he suggested I speak with my oncology team about it and quite efficiently he arranged an appointment for me that very afternoon. 

I spent the time between appointments on google, researching. I had resigned  myself to the likelihood that  I would be fitted with some sort of line, but I wanted to understand the whys and wherefores. I came a cross a Portocath on my quest for information. I know a few people that have had these fitted and learnt that the portocath is fitted under the skin, less obvious, less chance of infection, lower restrictions on activity levels and basically just less of a impact medically and as I see it, on quality of life. BOOM exactly what I was looking for and I made note to talk to the Dr about this. 

The registrar I subsequently met with that afternoon seemed initially perplexed as to why I had an appointment at all.  I quite patiently explained the events, my thoughts and why I was there, but I could feel my eyes welling up. I was feeling quite exhausted by all the goings on and was deflated by this start to the appointment. I hadn’t realised how on the edge I was of an ‘emotional wobble’, but I am glad to say things did pick up but not before another silent outburst with an involuntary ‘eye roll’ , when the  ’It’s up to you’  moment came.

I was hearing what medical professionals were recommending, however I was stuck on the  ’nonchalant’ , ‘it’s up to you’ approach by professionals, with what seemed to be a  standard, text book route which felt quite detached from me as an individual. What I wanted to feel is that it was a right decision and not just the easy decision.  Unlike the last time I had one fitted, this PICC line will be in for unlimited period time, as I am now on a life time of treatment and it's quite right that I manage the decisions that will affect my quality of life, well. 

Just as I was becoming exhausted into making the decision to have a PICC line, Dr Knighton spotted me through the open door of the consultation room and ‘charged’ in like  a ‘knight in shinning armour’ from  a scene of a medieval movie, with his trademark warm and personal greeting.  

So Dr Knight-in-shinning-armour (lol),  immediately gave a medical term to the ‘reaction’ I was having.  He called it ‘extravasation’.  So there was a word for what I was experiencing, I hadn’t come across this in my research. I had come across things like infiltration, however nothing that gave me the measure of the concern, that my subsequent googling of extravasation gave me….eeeeeek! 

With a hand hold, eye contact  and an “of course it’s up to you” as a preamble, Dr K left no doubt that a PICC line should be fitted to avoid  risk of necrosis and all sorts nasty plastic surgery stuff. He took time to hear about my previous experiences with the PICC and Groshon line, and I asked him about a Portocath. I think I actually asked him about a ‘cath’,  (#chemobrain) but he knew what I meant, and he explained that this was not usually available on the NHS, however under the clinical circumstances he asked his registrar to make a case and refer me on for the procedure and request a favour for this be completed under the NHS.  

Finally, I'd had a fluid conversation and I left with a plan that I was happy with. Things were put in motion quite quickly after that and today I went for my  pre op, so I'm all ready now to have the Portocath fitted under general anaesthetic on 2nd October 2017.

A  pre-pre op cake moment with Jules

There is much to be said for patient choice, at it’s best it has been empowering, at worst I have experienced it as overwhelming.  'Supporting' patient choice is crucial and I would say a skill which Dr K clearly has. You will recall that Dr K presented me with a choice as to whether to continue with chemo or not, and his approach to the PICC or not to PICC , has given me is a measure of his threshold on this choice thing and I feel much better about being left with the chemo decision, as I know that he will ultimately give me a shove in the right direction.

'A symphony in my head'

Tomorrow, on the 18th September, I shall be going for my 4th chemo session and so time for a medical recap as per my usual cathartic enterprise, but also for my wonderful cheerleaders that have expressed recent care, concern and interest in my progress.

I shall start  with the most exciting news about the results of  the CT scan that I had on the 6th August 2017. I wasn't supposed to have had the results until the 15th August, but a chance encounter with Dr Knighton, that very evening, at the #BFN monthly meeting, triggered my request to return to his care and then a consultation/chemo review with him just 2 days later.

I had been growing weary and losing confidence with the lack of continuity/consistency in the care I was receiving from Mr Mosni who was supposed to have oversight of my care. By the time I saw Dr Knighton, I had never even met Mr Mosni and had been seen by several different registrars. You may recall that I was previously a patient of Dr Knighton and knowing what I was missing out on, I felt quite short changed. 

Anyway,  I hadn't expected any results when I saw Dr Knighton on 8th August and so I was pleased he had taken the initiative to chase the results for me, and even more pleased that my XMIL was with me to hear that my results 'were stable'. Further probing for the detail, initiated a  'musical symphony in my head' that drowned out everything but the key words of that moment... 'minimal disease'  and 'cancer is dying'....'  

This was the first CT scan since my secondary diagnosis and I had been beyond desperate to know how I was responding to treatment and  whether I was closer  to that 'edge'. The 'scanxiety' that most cancer patients slip into despite best efforts, was thankfully short lived for me this time and I was grateful of the amnesty bestowed on my wellbeing. Such a shame we are made to wait sometimes up to 2 weeks for results. I'm sure this has a lot to do with a pressurised NHS, however one does wonder whether a  lil' 'tweak'  of the systems here and there would allow results to be delivered swiftly  and allow 'us' some emotional peace at these times. 

Dr Knighton has a particular holistic approach to his care and offered advice about exercise and diet. He was one step ahead of everything and before I even said a word about the malady erupting  all over my face,  he took one look at me, diagnosed me with Folliculitis and reached for his prescription pad.

I had alerted several medical professionals since my first chemo back in July of the sore and  uncomfortable blister like spots that were assembling on my head and face, so was a little annoyed that relief hadn't been given before now.  I was just 'sucking it up', like I do,  as a side effect of the chemo I couldn't do anything about! 

With each chemo cycle the blisters had been getting worse on my face and luckily Dr Knighton was totally in tune with what this would mean for me and seemed as keen to rid me, or at the very least, ease me, from the physically repulsive, uncomfortable chemo induced symptoms, as I was! Not even in the interest of 'keeping it real' will I ever post a photo of this symptom or even venture out without a dab or so of my Bobbi Brown concealer! I'm confident that the cream will do the trick and hopefully  I will avoid an expensive bulk buy concealer shipment! Cancer is expensive!

                                                  Folliculitis free picture 

Dr Knighton also prescribed an antibiotic concoction for the dry infection in my nostrils that  I develop through my cycle, that was making life just a little more 'icky' than it should have been..Just another symptom I had 'sucked up' after speaking with 'disinterested' medical professionals. 

Anyway, the melody in my head continued to play out blissfully, however there was then news from Dr Knighton that brought that 'symphony' to a powerful crescendo.  He told me that he recommends that 'his ladies' continue with the Docetaxol part of the treatment for as long as they can tolerate it. It seems most ladies last up to 10 sessions,  and being the determined person that I am, I would probably aim for 12, which would take me well into 2018 and totally interrupt family, work , financial and life plans.

Dr Knighton explained that the Docetaxol is a small part of the treatment plan and that the Herceptin and Pertuzumab are the main players but he handed the choice to me. So I shall be doing my research and using one of my decision making matrix' tools to make the right choice for me.

Having the choice carries a sense of empowerment but given the ultimate stakes involved, I am totally bewildered and wished I did not have to chose. Surely he wouldn't give me the choice if it was such a high risk? There is no question that I would  carry on if told to, and I would simply make it work on a  financial, career and personal level, however with so much to look forward to in my world, I want to leave the chemo behind, reach my new normal as quickly as possible and participate as fully as I can in the  life that I have.  Lots to think about hey!

The chemo side effects being what they have been, and with some confusion and disappointments in my personal life this cycle has been tough. Nothing that I cannot handle mind you, and as usual there have been the blessings, consequential events and exciting plans coming to fruition that has provided the emotional environment for me to thrive and the faith to believe that I am on track.

Sharing all of this with XMIL was comforting and it was sheer coincidence that she was over from Canterbury with XFIL for Dr Knighton's appointment. They paid a visit so XMIL could  essentially teach me to crotchet for operation 'flutterby blanket' (more about this soon). As XFIL declared; their visit also involved some 'cosseting'. I love this word, a 'vintage' term , probably best known now as a form of TLC .... I'm not easy to 'cosset' despite my a hidden craving for it's perks. I am usually the 'cosseter' but these guy's have the measure of me, they have known me since I was was 14, longer than my own parents and so their 'cosseting' tends to be gently enforced with 'cheeky sneakings' about doing 'stuff' that I'm too proud to let or ask others to do.  You are he best S&R and I'm now open for some TLC!

It is the time of the year when my own mother has been profoundly in my thoughts.  It was the anniversary of her death on 24th August and her birthday is on 19th September and I usually enjoy a comforting remembering day. This year feels very different, she was 44 when she died of cancer and this is the very age that I am now and like her I have my very own incurable cancer diagnosis.  Unlike my mother, I shall live beyond my 44th year and I'm determined to put in many more years at that, however I find the parallels of our stories frightening, never the less, they have proved to be life experiences that have prepared me well and are guiding my priorities for the following chapters of my life.

The symphony of life continues

'Something To Look Forward To'

So , last Tuesday on 29th August  I had my 3rd chemo, and whilst today is an icky and achey day.... my mind and soul have been refreshed by a most marvellous treat from The 'Something To Look Forward Charity' and now I feel I can take on the world ! 

#STLFT  provided a chauffeured punting trip experience, with a most delicious onboard sushi lunch, for ladies from the 'BreastFriends Northampton' (#BFN) support  group, and on 2nd September, I was blessed to have been part of the whole adventure with a bunch of vibrant women!

The events in my world  being what they are at the moment, I was particularly grateful for the emotional interlude of the day. I'm very lucky to have  a multitude of people around me, however the most crowded of places can be the most isolating when  a particular level of 'understanding' is missing and so having moments like these, surrounded by those that 'get it' often does make the difference and so a big thanks to #STLFT and BCN for an opportunity for clarity and perspective! 

The  STLFT charity offers people with cancer and their families, gifts and experiences donated by people and companies. Rutherford's punting company and Sushi and Sticks were our benefactors that day....truly the event was 1st class... made extra special by Ricardo our rather attentive and 'delicious' chauffeur.  We all took somewhat of a shine to ‘Our Ricardo’ that day… some more than others, hey Kazzie!!  He was a  charming young man on his gap year, who gave remark of genuine pleasure for being part of our day, explaining that his family had been affected by cancer.

The sun was certainly shining down on our florickings in Cambridge, with plenty of it to enjoy the 'Sushi and Sticks' picnic on the 'punt', whilst leisurely coasting along and attracting celebrity like attention! 

Leonie, one of the founding members of #BFN pulled the whole event together, organised us all with travel on a mini bus, giving us all an opportunity to chat away like old friends and binge on Jules' stash of ‘pink’ lollipops and heart sweets.  Thanks to BFN there was also a lil’ cheeky prosecco action along the river… !

My friend Mary came a long too, otherwise this was the first time I had met some of these ladies  and my day ended feeling like I had known them all for ever! 

Refreshingly and more significant for me about the day, was the ease in which we  seemed to comfortably drift in and out of guilt free mentions of our cancer stories, whilst enjoying each others chatter on love, life, hopes and dreams, without the social/emotional awkwardness that this can sometimes create.  

No matter how much one wants to or tries,  It is sometimes impossible to avoid even a fleeting reference of ‘cancer/treatment’ in conversations with friends and loved ones.  For me this has been particularly so during active treatments , due to cancers commanding  monopoly on my time, thoughts, physical appearance  and priorities.  I’m more than aware that as a default setting, I try to manage the emotions of others by offering protection from the physical and emotional inconvenience of  my cancer world, and so the respite from this has been the biggest treat of all.

Leading up to my secondary diagnosis in April 2017, I got to a point where cancer was becoming a more distant factor in the tapestry of my life and it was for sure, receiving less ‘air time’ in my thoughts and  conversations. Now that cancer has drawn it self back, without invitation with more focus than ever I am glad that  BNF is now  part of my support system. 

BFN is a relatively new group, so spread the word about their work and certainly do check out STLFT website if you  are affected by cancer or in a position to donate a gift/experience, particularly if your business is in the Northants area.  

Ok, so back to  Ricardo…….and some pictures Lol!

                                                  Fore He's a jolly good fellow!